Quick Jump: 4th Quarter 2003: October November December
December 31, 2003 Day +273
Can you believe that 2003 is almost over. Holy cow!!! What a year it has been. We started Taylor's journey in 2002, but the majority of treatment took place in 2003. During 2003 we conquered 4 rounds of chemo, a stem cell transplant, 3 months of isolation, many scans, achieved NED status, traveled to NYC 4 times. We also met Austin, Deanna, Gracie, Jake, Cliff, Meagan and Janie who all became Angels this year. Please be sure to visit their sites this year. We met Morgan, Andrew, Chris, Levi, Heather and many others in clinic both here and in NYC that are doing well or still fighting. We have all met under very hard circumstances, but we are a family now and we would all do anything for one another and all though I wish we were all ballpark mom and dads, I am so glad to have met all these wonderful people and children. Please be sure to remember them all in your prayers.
How did you spend last New Years Eve? We spent it in Children's Hospital getting round 3 of chemo. Taylor had a blast with a horn that a church group passed out to the kids. I don't recall being up to ring in the new year, but I bet we were. One thing that the hospital did for Taylor was cause him to stay up way too late. Normally he stayed at the nurses station hammin' it up for all of the staff. As much as we are glad to have that part of therapy behind us we do miss all of our nurse friends and our late night talks. It could get really silly up there when it got late. We hope anyone that is inpatient this year is at least feeling well and can enjoy the evening as best they can under the circumstances.
Last night was one of those nights that I laid in bed holding Taylor and of course it provoked a sappy update. After I updated last night I went to the bed room where Taylor was watching his movie. He wanted to sit in my lap, but I had to take a bath. Can't do that during the day anymore:) Anyway, He said he would lay on my pillow and keep it warm while I took a shower. When I came out he was sound asleep laying the wrong way in bed. I tried as easily as I could to move him, but he woke up and immediately wanted in my lap. After reading all the updates last night, I wanted nothing more than to curl up and hold him. I read website after website of children losing their battle in the last week or parents nearing the anniversary date of their child's passing or relapse. It was just on and on. I held him in my lap for the longest time. He was back asleep in a matter of minutes, but I still held him. We were both sweating, but still I held him. It is so unfair to have such an uncertain future. I know that everyone's future is uncertain. I know that better than anyone. None of us know when we get up in the morning what is going to happen during the day that could change out lives forever, but at least most people still have the innocence or naivety to not have to think about it and acknowledge it on a daily basis. I want Taylor to stay little forever. Gosh, he is almost 3 years old and yet it seems like only yesterday he was Logan's size. I wish at the same time that he was 25 so that I could be certain he survived this mess. I don't know why some kids get cancer and others don't. I don't know why some kids conquer it, no sweat and others die. I just know that last night as I lay holding my baby, I was praying, begging, that he be the one to kick it in the butt the first time and be a survivor who can forever share his story. I want this to be the end of this journey. We are willing to help anyone in this situation as much as possible, speak about it, help the hospital raise money for research or the Red Cross get blood. Whatever it takes, but I pray we never need any treatments again. Please add that prayer request to your list for Taylor and all his friends too.
Now enough of the weepies. Lets all have a great New Years Eve and Day. Party safe!!! See you in 2004....
December 30, 2003 Day +272
Happy Tuesday! Today we all got a wake up call at 8:00 from the post office to inform us he had addressed the situation. However, unfortunately for him, he did not address it the way we wanted, so we went above him to get it fixed. The photo company is going to send new photos, so soon we will share them with you all. After comparing the photo of Logan to Taylor's new born photo I have decided that they do not look alike. Taylor was much bigger all over. He had a bigger head and features. Logan seems so delicate. My mom swears he looks like I did. I will have to get Jim to post baby photos of us too. I have a hard time maneuvering Logan, he seems so tiny and fragile compared to Taylor who was 8lb 4oz. My mom says I should have tried dealing with me who weighed in at 3lb 5oz. Yuck!! That is to fragile for me:)
Today Jeanna came over and took Taylor to the basement playroom to play. It gave him a change of pace. We haven't gone down there since it is a little cool and I don't want Logan down there until it is a little warmer. It also gave me a break from trying to occupy the two of them. I laid around and did nothing other than what Logan needed. I did pick up the toys in the living room although you can not tell it now:) I put the legs on the jewelry armoire that my mom got me for Christmas. Once Jim got home I put my jewelry in it. Now shopping will be easy for Jim, all he has to do is buy enough jewelry to fill it up:) Taylor played hard and did not nap. Once Jim got home and we ate, he and Ca Ca played hard some more. He was sitting on the bed with Jim while I piddled in the bedroom and we both walked out for a minute to do different things and when I went back he was sound asleep. I assume he is out for the night although he will be up bright and early. That is okay, Jim gets off early tomorrow so I can take a good nap:) I plan to go to the grocery store. I am feeling fine, so I think I will be fine to drive that far and get a few things. I just need to get out. I have not even stepped foot outside since the 23rd. I need to go outside. I am so glad that New Years day is supposed to be really warm. We are eating at Guh's and Taylor needs to play outside just as much as I do! He will be so thrilled to see the vroom vroom Santa left him at Guh's house. He will also be thrilled that Drew and Blake are coming.
Another no news day. We are all doing good. Since Taylor is asleep so early he bought himself another day of Accutane. He has to get 28 doses, so he will have to carry it over a day to make up for tonight. Oh well!! Why not ring in the new year with "Craputane".
Well, as soon as I got done typing this Taylor woke up. He was in a very bad mood and I had to hold him. It took some talking, but we finally got the Accutane down him and so we will not have to add a day after all. He is now watching his new Disney Land video that he LOVES!!! He is in a better mood now that he is awake. I know he is just tired, but it is so worrisome. He is also complaining of his knee hurting again. That too is worrisome even though we are 99% sure it is just Accutane. I am sooooo ready for that med to be over and done with!!
Please continue to pray that Taylor's health does nothing but improve. Pray that the leg pains are only Accutane related and nothing more. Pray for Gracie and Jake's parents as they start the new year without their babies. www.caringbridge.org/al/gracie www.caringbridge.org/nc/hopefor Stop by and offer them your words of support.
Don't forget to make buying a curing childhood cancer car tag one of your new years plans!!!!!
December 29, 2003 Day +271
**Please pray for our friends Paul and Deborah. Their little Gracie went home to be with Jesus Saturday night. She was such a sweet heart, pray that God comforts them at this time**
Here we are again, back to Monday. The weeks just go by so fast yet so slow. We are waiting on home health today. Beverly is coming to draw his HAMA blood sample and Fed Ex will come pick it up between 12 and 4pm. That is a huge help to us not to have to go to clinic to have it drawn. It has been since about February that we have had home health come out, hopefully he will not be afraid of her. I am sure Mr. Ham wont be. I am not sure how many samples of blood we will send to NYC now that we are done with 3F8. I guess we will find out soon.
Dr, Modak emailed this morning with the message that he was out of the office and couldn't check on that, but we could stop the Accyclovir until we got the results and that way we didn't buy any unwanted meds. We emailed Dr. Kushner to check with him and he checked on the results. They are in and they are NORMAL. Taylor is officially off all his meds other than the Accutane and that will be over in about 5 weeks!! That is so wonderful and scary! It will be so great not to have that chore to do anymore. No more chasing him around when he isn't in the mood, no more forgetting. It will also be scary to be off treatment. Not that Accyclovir and Bactrim did that much, but still I felt like I was doing something. I know Taylor will ask us why he doesn't take it. He knows what to take and when and he will make sure we get it right, so I know it will confuse him some I have decided that I will go ahead and finish up the bottle we have of each. Might as well, it will just ensure that he gets all the benefit he can from them and didn't waist them. He has enough Accyclovir for maybe tomorrow, so he isn't going to get much more of that. Bactrim he only takes on Fri, Sat, and Sun. He may get 2 more weekends out of the bottle. I guess he will still get his immunizations in April. I will discuss it with Dr. Berkow on our next visit just to be sure.
Beverly got here at about 12:00 and did his blood draw. He of course was not scared at all. He had just gotten his skin over his port cleared up from the last 2 times he was accessed. The Emla and the Accutane mixed together just tear his skin up. It is all red again today, but hopefully it will be another 6 weeks before he needs it accessed again. Fed Ex came about 2:30 to pick up the blood and it will be delivered to the hospital by 10:30 tomorrow morning. I hope that is okay, but that is the best I could do. I am not real sure why they even want it since we will not return. Quite frankly I don't care if it gets there on time. I know it is for their research and I will help in anyway with that, but I am not going to stress over it since it doesn't matter to his treatment.
We all had a nap. Well, mine was interrupted by Fed Ex, but I got a short one. Taylor climbed in his bed all on his own and took one. What a big boy! They are both eating like pigs today. That is good because I am so tired of fixing food that I haven't felt like fixing any junk for me:) Taylor had cereal and pudding for breakfast. I didn't think we had anymore vanilla pudding, but he had to look for himself and he found some. He looked up at me and shook it in my face saying "ha ha, I told you we had some." Stinker!! He is now eating his 3rd pack of Blue's Clues gummie snacks. His teeth are already rotten and we are working on a dental appointment, but every time I call I am asked to call next month, so maybe soon we will work him in. Anyway, they are already rotten so I can at least let him get the calories from it.
I realized today that Taylor has 2 speech sessions left. January 7 and 14. Guess what?? Logan has a Dr. Apt on the 7th and Taylor and I have one on the 14th. I called Brandi and scheduled his time for later in the day and hopefully that will allow him to get those last 2 meetings. He is really doing well with his speech and it wouldn't be that big of a deal if he missed it, but he enjoys it so and it nice to see a friend from school, so hopefully we will get home on time.
We had a bad experience today. If you are a mail carrier forgive me for very much disliking your profession today. We got Logan's hospital pictures today. The mail lady left them hanging in a Wal-Mart bag on the mailbox and they are ruined!! We have filed a complaint with both the picture company and the post office. We are not sure who will pay to replace them or how long it will take. I just know I am very upset and disappointed. We get the wrong mail just about everyday, so I am ready to blast her anyway. We shall see tomorrow if all falls into place and it gets taken care of. I certainly hope so because I am ready to let these hormones go:) I have done very well. I have only been weepy last weekend when Taylor was scaring us. Other than that I am feeling normal. I guess the 2nd time around you know life goes on and you are not isolated from the world forever and you will get back in your regular clothes. Besides after all we have been through in the last year having to stay inside for a few winter months due to a new born is a breeze!!
Be sure to thank God for all the blessings in your life. I know we certainly are!!! Please pray that Taylor ALWAYS does this well and we are nearing the end of this path never to travel it again. Pray that our picture situation is resolved because I do not want to be ugly!!
December 28, 2003 Day +270
Happy Sunday. Another day spent at home. Taylor and Ca Ca did get out and go to Wal-mart and to Don Don's, but that was the excitement for the day. Logan and I stayed in the house all day. I finished the laundry and did the nine millionth load in the dishwasher. I hate bottles:) Only another year and we will be done with all that:) I know it will fly by, but right now it seems to be crawling.
Taylor is feeling fine. He has not complained again of leg pain. I am not sure if I updated you all on that or not, but he was having severe leg pain a few days ago. He was limping and crying in pain. Seeing as we just had scans it is pretty easy to be certain it is the Accutane which does cause bone and joint pain, but it is still very hard to watch your child suffer from symptoms that brought on a diagnosis of cancer and not worry about it. Anyway, that seems to have dissipated and we only have a few more doses left of the nasty medicine. As most of you remember we missed 6 doses last week when the Dr. said to stop it due to his photophobia or light sensitivity. We picked back up this past Tuesday and will go until Friday morning. We will start the 6th and final round on Jan. 17th. It is much easier now that I can give it. It was always so stressful to make sure Jim got it ready or to find someone if he forgot. It is also much easier now that he will swallow it and we do not have to pop it. He was doing great with swallowing it in a bite of pudding, but now he will swallow it with nothing. We try to give him tea, but he swallows it before we get it to him. He is also bad to chew it and it says I the directions DO NOT chew. So, we have had to be almost ugly to him to get him to not chew it. He has done really well with it the last few times. Figures we get it all figured out on the 5th round:) Jim also emailed Dr. Modak today to see if the results of his immune system tests are in. If they are good enough he can quit taking him Bactrim and Accyclovir. We have only about 2 doses left of Accylovir, so I hope the results are in. I do not want to buy more and then them tell us to quit taking it.
We got the tissue typing results in on Logan's cord blood that was banked at his birth. However, it was not in a form that we can understand. I am going to take it to the clinic with us on the 14th and see if the Docs there can explain. I am also going to go by the Stem Cell unit and see if it matched Taylor. I am not sure that Taylor was even tested since he used his own stem cells, so they may not know if he matches or not. We shall see.
Again we did not do anything note worthy today. I guess that makes for a boring update, but it makes us feel normal.
Continue to pray for Taylor and all his friends battling this and other disease. Pray for all the families that have lost a loves one to this disease. Pray that neither of our boys gets sick and that all this staying in the house keeps us all well.
December 27, 2003 Day +269
Hello again. Today was a lazy day. It has been a long time since we have stayed at home all day on a Saturday. It was nice and nerve racking all at the same time. I am not a homebody, I like to be on the go. I guess it is gonna be this way at least until it is warm and the flu is gone.
We have not sat down all day, we have been picking up all day, but you can't tell it. Taylor has played with all his toys and Logan has done none other than sleep. He did wake up for a while and we put him in his boppy pillow in the living room floor to look around. He liked it for about 20 minutes and then he was tied of it. Now Taylor thinks he has to sit in it. We were going to get a sitter for the boys and go to Wal-mart and out to eat, but decided against it since there is so much sickness out there. We just don't want to risk either of them getting anything. Jim and I both have a sinus infection or so we hope. Guh thought she had one, she doesn't have a fever or even feel bad, but they said it was flu. Hopefully since we both got the shot we really do only have a sinus infection. We have ordered pizza instead and will pile up in the living room with all the toys and pig out and watch a movie. I guess I will finish the whopping 2 loads of laundry I did today and that will be about it for the night. I am not hurting much at all, but if I do to much I will get sore. I am trying to take it easy and I have plenty of time to take care of this mess, but you all know how a mess can eat at me:)
Not much excitement here and as usual we like it that way. We have 5 more days on this cycle of Accutane. He has had severe bone pain this round. I am 99% sure that is all it is. He is limping and will cry at night, but we just got all clear scans so you just have to go with it, although it is soooo hard. He should get his immune function test results back next week and that will tell us if he can stop taking all his other meds. I hope so because we are almost out of Accylovir and I don't want to buy more just to come off of it. Taylor fell twice today. He now has a lump on his forehead and a bruise on his thigh. Thank goodness we have good platelets again!!
Please pray all his pain is indeed Accutane. Pray that Guh feels better soon and none of us get the flu. Pray that Taylor can stay NED forever and Logan never deals with any of it. Happy New Year!!!
December 26, 2003 Day +268
Hello to you all on the day after Christmas. I guess it is time to get into a normal routine again. Taylor asked me this morning when he got up if Ho Ho came? I guess he was disappointed when he went in the living room and there was nothing new. He played really good today with all his new goodies. Logan slept the day away only waking a few times to be fed and changed. Taylor has yet to be bothered by my spending time with him. That is my biggest problem with having 2. I feel bad for not holding Logan more, but I feel I need to play with Taylor while I can. I know when Logan gets bigger and he is getting around it will be harder to sit and play with Taylor, so I guess I am doing the right thing. Anyway, Taylor has done well. I guess now that the holidays are over and things will get back to normal and we start taking Logan to Dr. apts with us and to the beloved Wal-mart, we will see how much Taylor really minds!
Today we got a little bit of disturbing news. Guh has the flu!! We hope she is feeling better soon, but we really hope that neither of the boys will get it. Jim and I both had the flu shot, but Taylor was not allowed to get one and obviously Logan didn't get one. Guh was here Friday-Sunday and again on Wednesday. Neither boys are acting sick. Taylor still has the runny nose and cough that brought us to clinic last week, but nothing new. I spoke with Meredith and she said there is nothing we can do now, but wait and see. Both she and Guh's Dr said that if they were going to get it they would be showing signs by now. I hope so!!!
Guh's illness also put a damper on our Christmas party. We all talked and talked and finally let Taylor draw 3 sheets of paper labeled with yes or no to decide if we would have the party without her or wait. We ended up having it anyway. We called her when it was time for Dirty Santa. We had a good time, but we missed Guh. We didn't want to stretch it out and give someone else a chance to get sick. We are all having lunch on New Years Day and she will get her gifts from us then and Taylor will get the 4 wheeler that Santa left for him at Guh's house.
Taylor and I cleaned up today. Well, I say cleaned up. We threw all the toys in Logan's room:) We will get to that when I am feeling 100% and I can figure out where to put it all.
December 25, 2003 Day +267
Merry Christmas to all!
Good morning. I hope everyone is having as wonderful a Christmas as we are here in the Watts house. We woke up at about 5:00 to feed Lo Lo, but Jim and I were not quite in the spirit of things that early! We waited until 7:30 when Lo Lo ate again. We woke Taylor up, so he was a little groggy at first, but it didn't take long to get into the toys. He was very excited! He got a basketball goal, a t-ball game, Elefun, gas pump, wiggle blanket and step stool and gum and little things in his stocking. He loves his play leaf blower the best of all. Figures the smallest, cheapest toy:) He usually uses his microphone stand to pretend he was blowing leaves, so he thought it was cool to have one like daddies. He has been so hyper. It is all a little too overwhelming, he has to much to play with. He is doing good with the basketball goal, he is 4 for 4! He loves the t-ball, but we better look out. He knocks the mess out of it. I can't wait until it is warm and it can go outside.
Papa and Maw Maw came to see what all he got. They also gave him a play house. It is in the playroom for now, but soon that to will go outside. He loves it. He wants us to get in it with him, but just doesn't realize that we are to big. We squeeze in and deal with it. Guh called and said that Santa left a blue and yellow 4 wheeler at her house. Cool! Pippy, Pop, Pam, Gary, and Peggy came over and we had lunch and opened more gifts. Taylor got play dough, clothes, and legos. He brought all down stairs to play in the house and play t-ball. He is having a blast!!
As for Logan, he is sleeping. He has snoozed through all the excitement. He didn't even wake up when the blower was going or the harmonica was playing. He eats every few hours and then he is set to snooze again. We got some great pictures last night of the boys in their Christmas PJ's. Taylor was holding Logan without realizing it and now he loves it. He held him again this morning. We put Logan in a stocking and he has his own Santa hat. He was such a trooper. He never cried or anything with all the dressing and undressing and Taylor trying to hold him. We fixed that darn tree, so we have lights for the pictures:)
I know I am ready for a nap, but I have a sneaking suspicion that Taylor is not going to agree with that idea. I hope you all had a wonderful Christmas morning and got all you wanted and more. God has truly blessed us this past year and for that we are so thankful. I am sure by this afternoon we will have many more stories for you, so check back. Enjoy the rest of your holiday!!
Please continue to pray for Taylor to continue to beat this disease. Pray for all the families that are missing a loved one today. Be sure to remember the reason for the season, don't take the Christ out of Christmas.
December 24, 2003 Day +266
Hello to you all on Christmas Eve. We are spending the day cleaning up and preparing for our first party. We will have Ca Ca's family over tonight. Taylor is soooo excited about Ho Ho coming down his chimney to bring him toys. I asked him if he remembered what he got from Ho Ho last year. I had to remind him that he got his gator. When I asked him what he thought he would get this year he told me a new gator. I think not! We will be celebrating Christmas with a dark tree. The lights died again and we can not get them back on. I have not taken any photos of the tree or Taylor by it, I was waiting to do that with Logan, but looks like I should have done it sooner. Oh well. We gave Taylor our old digital camera and let him run ramped. When it gets full we just delete the really bad ones. He is cracking us up. We have pictures of gifts, ornaments, the TV screen, our feet. He will take a photo of me holding Logan and it will turn out to be my arm and Logan's head. It is so funny, but he is so proud of them. We are going to save them and do a Christmas by Taylor album.
Yesterday after getting home and settled, Taylor was ready to play. I had to lay on the couch and he covered me up and put my arms over my head and put night night in my hands. He kept telling me to get in the doughnut. It took a while but I finally figured out I was getting a CT scan. He would show me his cup and tell me I could have tea when the CT was all over. He is so darn smart. Isn't it sad that when we play doctor we do it so realistically. Maybe he will grow up to be a doctor. He should breeze through medical school after all this. Maybe I could go with him:)
Well, the party was fun. There were so many people that were sick that we didn't have the whole family over, so Taylor was the only kid. He of course thought that was cool. He was the center of attention again:) He got a garage, stickers, clothes, books, a play house, Lincoln logs, airplanes and more. He opened Logan's gifts too. He got bath stuff, diapers, and formula. All his favorites. Logan slept through it all. I fed him once during the party and that was all. He woke up and looked around for a while. He didn't care to much.
Taylor got ready for bed and laid out cookies, milk and an apple for Santa. He even opened the fire place screen to let him in. He had to sleep with the blinds open so he could see Santa fly by. That was all that would keep him in the bed. He wanted to play not sleep. It didn't take him long to be sound asleep. I don't think he realized what was going to happen, but he was excited just about putting out all the milk and stuff.
Thank God tonight for all the blessings we have received this year. Thank him for Logan and Taylor's health. Ask him to be with all those that are going through this holiday season without their loved ones.
December 23, 2003 Day +265
We are finally home!! It has been a long day. We left home at about 7:30 and headed for Children's. We got there and got registered and I went to the CT dept. to see if they had a nurse to access him or if I needed to run to the clinic. She told me to head on to the clinic. We went down there and showed off some pictures of Logan!! Then we had to wait and wait. Not because Clinic 5 staff was putting us off, but because there were no needles to access him with. I am not going to think about why they did not order some yesterday since they know they will access people, but oh well. If that is the only trouble we ever have in clinic then we are in good shape! After about a 30 minute wait we finally got accessed. His skin is raw from the tegaderm and Emla, I guess the Accutane is making it more sensitive. Miss Ruth went ahead and drew his CBC, so that when we got done with the CT we would not have anything else to wait on. After that was done we went back up to nuclear med and waited about 5 minutes. We were called back and got him checked out. He usually will not drink his contrast. That is the stuff that makes any tumors or what not glow. They mix it in apple juice which he hates anyway and the contrast is bitter. He drank nearly half the can today without any trouble. What a big boy. It takes much longer to get a scan when sedated because they have to put him to sleep and monitor his breathing and that is all done after we wait on the Dr. to come approve it all. So when she suggested we try to do it without sedation I was game. He is not sedated for bone scans here in AL, but he is strapped to the table. Today he just laid there like a big boy. I could see his little eyes looking and taking in everything when they put him through the machine. I just laughed and called it a dough-nut tunnel and he got tickled and was fine from then on. He did move his head and cause her to have to do it again, but otherwise he did great. I am so proud of how big he is being, but it is sad too. No 3 year old should have to be so accustomed to medical treatment that he does it like a walk in the park. He is also now giving himself his meds. I draw it up in the syringe and hand it to him and he pushes it in. How far we have come since April when I had to push it through his TP tube or he wouldn't take it. After the Ct we went to the clinic to wait on the results of the CBC and the CT. Miss Ruth gave him a blue cupcake since he was so good. He lapped it up and then started on a bag of cheese nips. Soon we were in a room. Meredith came to talk to us and congratulate us on Logan. Dr. Berkow was in soon and he had great news. The CT was all CLEAR!!! PRAISE GOD!!! His urine markers were also normal!!! What a wonderful Christmas present. He said that we can restart the Accutane and just leave it at the original 80mg/day. The extra 10 is so small that it didn't matter. We will go a few days longer than normal since we stopped it for a few days. He said he had an eye condition called photophobia (no, he is not afraid of the camera.) It is caused by the Accutane drying out the eyes which is basically what the eye Dr. said. He said if it happens again to stop Accutane for a few days. Dr. Berkow had a student with him that he was explaining everything to. It was interesting on more than one account. He went into great detail as to how the Accutane worked which was good because I really had no idea. It is a maturation agent that will make cancer cells mature and not allow it to divide. That was it in a nutshell. The other funny part was that besides the Accutane explanation I understood every word medical or not that came out of his mouth and I was not in medical school:) We will have home health come draw the HAMA labs and I will have Fed Ex come pick it up. Thanks a million Meredith for scheduling that, it sure does make life easier!! We are free from the Dr. until January. Logan goes Jan. 7th, Taylor Jan. 14th, and me on Jan 13th. It will be another interesting week, but I can drive by then and it wont be so hectic.
I know it isn't technically Tuesday yet, but since I know tomorrow will be a long stressful day I am going to go ahead and tell you about the rest of Monday and I will update again late tomorrow with tomorrow's events. We will be getting a CT at 8:30 tomorrow morning. I thought the apt was at 7:30, but my reminder message said 8:30, so I may have to fight with someone if I get there and they say I am late. I tried to call and kept getting hung up on. He will get a CBC to check his counts since he was sick this weekend. He had one Friday and it was fine, but we want to double check. He will not get HAMA since there is no one in NYC's lab to get it if we mail it this week. I am going to try and wait for the results of the CT and CBC, but it will depend on how the day has gone and how we are all feeling. I tell ya, being a mother of 2 is stressful and I have only done it for a week:) I guess it will get easier when we are in the swing of things and flu season is gone and we can just take them both to the doctor.
Can you believe that we are at day 265, only 100 more and we are a year post transplant. That seems like forever, but when I think back to April and how fast the first 100 days went by, I know it will be here before we know it. We still will have a long ways to go, but that is a huge milestone for a cancer patient.
As for the rest of Monday. We took Logan to the doctor. He did not even need his billi rechecked since he looked so good. Dr. Petelos was super. We have not seen him since Oct. 9, 2002, the day he told us Taylor was anemic and that he thought something was wrong. He was furious today that no one told him there was an infant in the waiting room and that we had to wait for 10 minutes. By Greenvale standards that was short, but I guess with Flu going around he doesn't want them out there at all. Logan had gained up to 6 lb 14 1/2 oz. He has picked up from about a half an ounce every 2 or 3 hours to about 2 ounces every 3 hours. Dr. Petelos said Logan looked great and we go back to the well baby center on January 7th. Thank goodness I can drive by then and it wont be such a hassle for us all to shuffle our days to get there. He asked all about Taylor and said the Children's had kept him very up to date. Way to go Children's, NYC does not do so well at keeping them up to date. He said he prayed for us all the time and he is more than willing to keep Logan checked out to catch anything early. Logan has just as much chance as Joe Blow down the street has of getting cancer, but we want to keep him monitored just to be on the safe side. That is Logan's tuff luck, he has scared parents that will be way to over protective. One day he will understand.
As for Taylor he rode with us and he and Maw Maw sat in the car and waited on us. I did not want him being near anyone sick. I am so glad he stayed put since a sick kid was sitting in the well baby waiting area so she didn't get near the sick kids. Go figure!! He didn't complain to much. We got him Don Don's on the way home and he ate all his chicken nuggets while I fed Logan and then we all took a long nap.
Jim had to go to the eye Dr. today. He had a twitchy eye that was caused by stress. Go figure, we have stress:) Anyway, he talked to her about Taylor's light sensitivity and Accutane and she gave us some drops for day and gel drops for night. She said it really dries out the eyes and that is why he is so sensitive and his eyes bother him. That makes us feel a little better.
I meant this to be a short little update, but I am still rambling. Taylor has had the best time "driving" . We all have to pile on the couch and take turns driving to Don Don's. We have to follow all the safety rules of driving and riding. Is is so funny. We stopped at Don Don's and we got all our pretend food. I passed theirs back, I was driving and I put my pretend shake in the front with me. While I waited on my change, Taylor jumped up and drank my shake:) He is so big into pretend right now. I guess a year off work and I had forgotten how smart they are and what kind of stuff they can come up with.
Please pray for Taylor's CT results to be clear. Pray that his counts are good and he just has a bug and that it is in no way cancer related. Pray that Morgan's confusing scans are soon cleared up. Pray that Logan never has to endure any of this and thank God that he had a good visit today. Pray for all the families that have lost their babies and must go through this holiday season without them. Pray for all the kids still battling cancer and that all the kids in remission can stay that way. Don't forget to buy your cancer car tag when you go buy your regular tag for this year. If you have already gotten a tag then go by and get a commitment to purchase form anyway:) Be sure to check back later on and I will give the details of today!!
December 22, 2003 Day +264
Hello again! Well, last night was our first night without Guh here to watch Logan while we slept. Guess what? It was fine. Logan woke up every 3 hours on the dot. Not to bad. I fed him around midnight then I went to bed, Jim fed him at about 3:30 and then I fed him at 6:30 and Jim got ready for work. If it will always be that way it will be easy! Taylor cried out twice. I am not sure what Jim had to do for him, but when I went in there around 5:00 he was dreaming. He was asking to go "down play" his eyes were still closed. I just laid him down and he quit talking.
I got a wake up slap in the face with a rice krispie treat. Taylor threw one on the bed for me to open at 7:30, but once it was opened he sat there and ate it and watched cartoons while I went back to sleep. Around 8:00 our pediatrician office called and made us an appointment foe Logan's billi test. Hopefully since we are going at 12:30 and they close at 1:00 for lunch we will not be there to long. Yeah right!! They asked me Taylor's chart number and I had no clue. It has been 14 months since we have been to his regular pediatrician. Speaking of, he is still not eating really good, but is playing great. He is now asking for the light to be on all the time, so obviously it isn't hurting his eyes anymore, but he says he can't see the TV in the dark. It is so hard to tell what a 3 year old really understands and is making up plus adding a baby to the mix and trying to figure out what is just for attention and what is real. I guess we will always worry and until he can really tell you what is hurting and what isn't, we will worry double.
Yesterday was much the same as Saturday with the exception of Taylor feeling better. We just hung out and Guh did lots of laundry. We have done about 3 loads of Logan's clothes and we have only had him here 72 hours! Taylor never napped, but I did! Maw Maw brought us dinner last night and played with Taylor. Our Logan help seems to get sucked into Taylor, but that is fine. I do not want him to feel left out. He has been so much and has been the center of attention even more so than your average first grandchild. He has done really well. He helps us get things and has been picking things up that I couldn't bend to get. I am doing much, much better. I even played ring around the rosies with Taylor minus the falling down:) I usually only hurt while trying to get up from the bed. I get to stiff and it hurts. I have only had Motrin since being home and only once yesterday. So far I have not had any today. Hopefully I am done with it and on the way to feeling like my old self again.
Tomorrow we will go for Taylor's CT scan and after that I will run to St. Vincent's to get my staples out. It did not hurt at all last time, but you know we, I am scared:)
Please pray that Taylor's last scan due for this month is fine as is his urine test. Pray that Logan's bill Rubin is back down and we do not need to make any more special trips out for that. Pray that I am not a chicken at the Dr. and that I have healed nicely and I am also done with Dr appointments. Pray for Morgan as some of her scans were a little confusing. Pray for all the families that have lost their precious child and must celebrate this holiday without them.
December 21, 2003 Day +263
Hello all! I must say everyone in the house is feeling better. Taylor woke up at 5:00 and got in our bed and watched cartoons until he fell back asleep. We all woke up around 8:30. He seems to feel much better. He is playing and acting like a wild man. He also ate a whole pack of oatmeal and 3 glasses of tea. Maybe it was just a stomach bug. After our little scare last night, we were a little to anxious about getting those pending bone marrow results. We emailed the NYC Docs hoping that someone would read their email and we would soon know. Well, Dr. Kushner did. He said his BM's were clear of cancer! Praise God!!!! We still have the CT on Tuesday and yes, we are nervous, but I now feel a little better. Thank goodness Dr. Berkow will read the CT immediately and we will have a full report in.
We did find out very bad news last night that came right in the middle of my little breakdown and it made it all worse. Our dear little friend Jake passed away Thursday night. He was our roommate in NYC and the two boys had a blast in clinic. He was the sweetest little guy with the best parents. Please keep Jake's family in your prayers as they deal with this loss and the holidays. You can stop by and offer them some words of support at www.caringbridge.org/nc/hopefor
Please remember Taylor in your prayers. Pray he only had a virus and this is in no way cancer related. Pray that Logan will not catch any of it. Pray that the CT scan is clear as are his urine markers. Praise God for the good bm results. Please pray for Jake's family and all our other friends that have lost a loves one. Pray for all the kids still fighting this monster and pray that all the NED kids can remain that way.
December 20, 2003 Day +262
Our first day at home was fine. I slept late, well until about 9:00, but after being in the hospital and getting woke up at the crack of dawn, it felt late. We just hung out at home and Jim went to Wal-mart to get a few things. Important things like a sticker book for Taylor, he filled his up, and some nipples for Logan. We didn't have the kind that he liked from the hospital. He is a happy camper now! Guh had spent the night and she stayed until early afternoon and then she went home for a while. I stayed upstairs with Logan and Jim and Taylor played downstairs. We all did well with that arrangement. Logan is much harder to take care of than Taylor. He is so wiggly. I said all along that he moved inside of me way more than Taylor did and he still is moving. You can not dress him, he keeps his arms all tucked up at his chest and will not straighten them for you. He keeps his legs all drawn up and you can not get the diaper on him. He has pooped all over his clothes twice. Good news is that that poop is yellow meaning he is getting that bill Rubin level down. He is a very good baby though. He rarely cries and if he does he is just hungry or wet. He has a very hoarse little cry. If he is out and out screaming mad it is a soft little whimper. I guess that is a good thing:) After a few hours Taylor and Jim came back up and Taylor ate a whole can of corn. I was past ready for a nap, so I talked Taylor into laying down. He wanted to lay on the couch. He got all tucked in and then I noticed he had huge boogers in his nose, so I picked it for him. (I am turning into my mother) Well, my child is crazy, he fell asleep while I was picking his nose! I went to get in the bed and Taylor and I both slept about 3 hours.
Guh came back and cooked dinner for us and to stay the night again. Taylor started to get real puny again. He refused his dinner and wanted to be held. He was asking to go to bed at 6:30. He was just pitiful. He threw up and had to go take a bath. He seemed to feel a little better after that. He got in the bed and fell asleep, but woke up as soon as Jim left the room. He came back into the living room and just cried. We couldn't do anything for him. A few minutes later he was puking everywhere. He was real mopey after that, but he never puked again. We called the on call nurse and she said she was not worried about the vomiting and fever. However, she was very concerned about the light sensitivity. He cries if the light is on or if he is in the sun. Dr. Howard told us to discontinue the Accutane until Monday and see if that helps. That makes me nervous. He needs that to fight any cancer in his body, but it also could be affecting his eye sight. I hate this disease!!!! You just can't win for losing. He fell asleep laying in the floor watching TV. Jim moved him to his bed and slept all night.
I on the other hand was an emotional basket case. I had to go get in the bed and just cry. I had so many emotions. I am worried about Taylor and worried about Logan ever having it. How would we do it again? I had so many bad thoughts of relapse and tumors dancing around that I thought I'd be sick. I prayed and prayed and eventually fell asleep. I know most of that was from my post partum blues just happening to be at the same time as his being sick, but the two didn't mix very well.
Please pray that Taylor is all clean and clear of cancer. Pray that he never again faces the disease and Logan never has to deal with it. Pray that Logan's billi levels are down when we go back to the Dr. tomorrow. Pray that I make it on Monday all by myself with two kids.
December 19, 2003 Day +261
Home sweet home!! We were finally discharged around 9:30. The ride home was so much nicer than the 2 hour trip we made to Auburn with Taylor! Logan rode fine. He had just finished a bottle and been changed when the nurse came in with all the paper work. Of course any other morning the doctors had rounded by 7:30, but not today. Oh well, that is okay. Logan was a little jaundiced this morning, his billi level was 11. We have to go back to the pediatrician on Monday and have it rechecked. It is only on his face, if it starts to go down his body we will have to go back to the after hours clinic over the weekend. I hope we do not have to do that. We have had him laying in the sunlight all afternoon. He weighed a little less today than Tuesday. He was 6lb 12oz. He has eaten a good bit today. He was only eating about 3/4 of an ounce at each feeding and today he has had an ounce to an ounce and a half each time. That is good to since one of the symptoms of the elevated billi is lack of appetite. As for me, my incision looks good. I will go back on Tuesday to have the staples removed. I did not get a script for any pain meds. I am only on Motrin. I really only hurt when I am trying to get out of bed or if I stood or sat too long. Hopefully that will go away soon.
We got home around 10:15 or so and unloaded the car and got Logan settled in. Taylor and Jim went to Don Don's and got us lunch. I was starving , but a few bites and I was full. I guess that is a good thing:) Taylor liked looking into Logan's bed to see him. I was in the potty and Taylor busted in to tell me that Logan was still there. I didn't figure he was going to walk away, but I was glad he was on the lookout:) Taylor was acting puny and we took his temp and it came in at 101 which won us a trip to clinic 5. I had to Emla his port so they could do cultures. We found a babysitter and off we went. Yes, I went. That is an amazing feet for me if you had seen me at this point after having Taylor:) People asked me if I didn't have him. I was like yeah I had him, but I had to come to clinic, my baby is sick. The fever was gone by the time we got there, but he did take Tylenol. He weighed 29.1 which is 14ounces more than Monday. All that cake he is eating is paying off! His counts were all fine. He had a great ANC, so he should be able to fight off anything he gets. It is just very nerve racking with the flu going around and a new baby that also has no immune system in the house. I felt better to see the doc, but he is still puny and I am still nervous. He had another temp of 100 around 8:00, we gave more Tylenol and we will just watch him. They will call if his cultures do anything.
Please pray that all scans are clear. Pray that this fever is Accutane related and nothing more. I will admit I am scared to death, but I have faith that it is all okay. Pray that Logan does not get sick either and that his billi levels stay down and he is not bothered by that. Pray that the family can stay well and be able to get together on Christmas and not mess up any plans we all have. Better than safe than sorry, but I would hate for him to miss Christmas. Pray that we all keep our sanity during this time of adjustment. Be sure to thank God for all he has done for us, we have so much to be thankful for.
December 18, 2003 Day +260
Sorry that we have not been able to update. We can not update from the hospital and Jim doesn't always get to go home.
Yesterday Taylor stayed at the hospital just about all day. He did really well. Of course he is no stranger to a hospital. He played in the room and even took a nap while watching Lady and The tramp. He enjoyed handing us bottle and towels for Logan if we needed it. We got some cute pictures of both boys sleeping together on the couch in the room and of them in bed with me. Taylor likes to look at Logan, but doesn't really care to hold him. Maw Maw came to get him and they went back to our house for the night.
As for today. I am feeling great. I am only taking pain meds when I get up since I am so stiff when I wake up. I take it again at night after I have moved around all day. My feet are very swollen after walking around, but I know I need to. I am exhausted at night and the nurses wont take the baby to the nursery until midnight or when ever they finally get in there. They bring him back at 5:30, so I am ready to go home. I will get more sleep there:) Taylor, Papa, and Maw Maw came up for a few hours. Taylor again did well. He played good and ate a ton of cake and nug nugs. He looked at Logan a lot, but still has no interest to hold him. Papa finally got to hold Logan, but Taylor did question it. Pippy and Pop came by tonight. They brought Logan some new pj's that say "Lo Lo" which is what Taylor calls Logan.
Dr. Smith circumcised Logan today. He did fine and is healing nicely. Our nurse cut a little more of the umbilical cord off since we told her Taylor didn't lose his until he was 6 weeks old! Hopefully Logan will not hold on to his so long. He also had a hearing test and he passed. He is very jumpy. He startles very easily, so I assumed his hearing was fine.
Please pray that Taylor has all clean scans. Since we have not been home we have not gotten word on his bone marrows yet. He started his 5th of 6 rounds of Accutane on Monday. His dose was upped from 80 mg a day to 90 mg a day. This means that in the morning he has to swallow a 10 and a 40mg pill which stinks to talk him into swallowing 2 pills. Pray that they are clear and that his urine levels and CT is clear as well.
December 17, 2003 Day +259
Hi all. Last night was good. The nurse took Logan at about midnight so that we could sleep. He has been eating really good. Taylor had a very hard time learning to suck when he was born, but not Logan. He also had his first poop. He was ticked off when Jim changed him and put that cold wet wipe on him. I did not sleep well. I was very tired, but just couldn't get comfortable enough to sleep.
I am going to have to pat myself on the back. I have done really good with moving and coughing. I have coughed or grunted:) several times and doing great with deep breathing. I rolled onto both sides while trying to sleep. The nurse said she would wake me up if she came in during the night and I was still in the same position, so I did the rolling myself. I had a good deal of pain during the night after I rolled over, but it would end rather quickly. My nurse had said that since my 12 hours after surgery fell at midnight that I could get up and walk for the first time around 5:30. She didn't lie either, at 5:30 on the dot in she came and took my catheter out and helped me get up get to the potty. I did very well getting up. It did hurt and I got a little dizzy, but it was not to bad. I got clean clothes on and got back in bed. It was much easier this time around. I knew what to expect and that helped me to realize that it really does help if you move. I already am feeling better. I have gotten up again to use the bathroom and brush my teeth. I can not have solid food yet, so my breakfast consisted of, you guessed it, chicken broth. I can not wait until lunch.
Logan was brought back into the room at about 6:00. He has snoozed most of the morning, but he has looked around a good bit too. He ate a good bit, and ounce and a half. Dr. Denton, one of the pediatricians came by and looked him over. She said he looked fine and that she would see him tomorrow. He will get circumcised this afternoon.
Taylor fell asleep on the way home yesterday. He had a busy day. He got a baby Elmo that has a night night and a bottle that he feeds and takes care of. We asked him yesterday if Logan could have a night night and he said yes. We never really thought much more about it. Once he got home yesterday afternoon he was playing and he called Papa to come look. He had put a night night in Logan's crib. How sweet!!! Jim is fixing to leave and go get Taylor so he can come up for a while. We will update again, probably tomorrow.
Please pray that all of Taylor's scans and tests come back NED. Pray for Morgan as she prepares to have scans. Pray that Taylor and Logan both stay healthy and never endure the events of the last year again.
December 16, 2003 Day +258 "L-Day"
Well we did it. Jim and I got to the hospital at about 10:00 this morning. I got a room and started paper work. My nurse hooked me up to the monitor to keep up with his heart rate and mine. There were no contractions. I had not felt any, but was curious to see if there any small ones. I had a fever of 100.2, so we had to wait on Dr. Damrich to okay me to go ahead with the IV and acid reducing meds. He thought it was dehydration since I had not had any food since about 6:30 last night. They did a CBC to check my white counts to make sure they were not elevated and listened to my lungs. All was fine and my temp went back to normal after a little IV fluids. The anesthesia doc came in and explained how the spinal block worked. Finally at about 12:15 they wheeled me into the OR. I immediately got scared to death:) They did the spinal block first and I ain't gonna lie, it hurt like a bad word!!! He said the "bee sting" numbing shot would be the worst, but he lied. I jumped a foot when he gave the shot of the main med. Of course he freaked out since you are supposed to be still, but it hurt so bad. It was over pretty quick and my feet were tingly right away. They laid me down and got my oxygen started and got the drapes up. Once all that was done Jim was able to come in and hold my hand. He might have broken fingers because I was squeezing like a mad woman. I past the pinch test to see if I was numb. I was glad because with Taylor I felt it and it hurt real bad. Anyway, they were started as soon as I proved I was numb. I could feel the tugging and pulling, but no sharp pain. I did not like feeling those sensations, but it was just scary not painful. I could hear them cutting and suctioning and that too I could have lived without. They had a dad pass out and have to go to the ER, so Jim had to stay behind the curtain until they said he could look. He got to look when they brought out the head and soon the rest was out. It was 12:42 PM and Logan Riley was born. He weighed 7lbs and 1oz and was 19 1/4 inches long. They cleaned him all up and stitched me up. I was wheeled back to my room to recover and that was more comfortable than doing it in the recovery room. All of my tummy pushes to check the uterus were done while the spinal block was still in good working order. Logan was fussy until after he was bathed and dressed and he was fine. Taylor came in to visit. He has done well so far. He ignored him when he cried. He did call him "my baby" and looked at him. He held him for a minute, but it took us a long time to talk him into it and a lot of bribing. He gave him a evil look when everybody started to look at him and everyone could hold him but Papa. He has gone home for the night and was a little upset that Jim didn't go with him. I guess the true test will be when get home and he really takes up our attention. I think he will do okay. I hope!
As for me, I am feeling okay. I do hurt, but not like I did last time. I am not sure if I am really not hurting as bad or if it is managed better or what. I have sat up several times and coughed a few times. Not fun! I am doing a lot better with it all because I am determined to feel good when I get out of here. I think I will do okay. I am not looking forward to getting up and walking, but so far I have done well with moving. I sat up the first time at about 4:00. I felt like I did pretty good to be 4 hours after surgery. My dinner finally came in about 4:30. It was just delicious! Chicken broth and orange jell-o. That was the best chicken broth I ever had:) I am so hungry, but I can not have solid foods until 24 hours after surgery. They better look out at lunch tomorrow.
Well, I am about to go take a nap. I am all of a sudden very tired. I got my tummy full of that scrumptious broth and I am sleepy:) Logan is asleep with a passy, great huh. He ate for the first time at 3:45. He ate the recommended amount of a whopping 1/2 ounce. All is well and we are doing fine. We are at St. Vincent's in room 316. Wish us well and we will do our best to keep the page updated. It may be hard to do that since Jim will have to go home to do it.
Please pray that all scans are clear and that Taylor is able to remain in emission forever. Pray that he will adjust well to our new family member. Pray that Logan and I continue to do well and get out of here on time. Thank God for all he has done for our family and for getting chicken mommy through the surgery.
December 15, 2003 Day +257
Well, today was the last day we will spend as a family of 3. We made the best of it in our normal fashion. What did we do? We went to clinic. Taylor finally fell asleep last night around 9:15. He was just fowl because he was so tired. He was totally ticked off, but we do not know why. He got in his bed because he was in trouble and he was gone in about 10 minutes. He woke up at about 7:00 this morning. I was not ready to get up since I had been up since 5:40 when a wrong number caller called us 4 times in a row. I finally told her to pay attention to what she was doing and not call my house again. Anyway, he watched cartoon s on our bed while I drifted in and out of sleep. At about 8:30 he told me I slept to long and to get up. Fine!!! I got up and he ate breakfast and played while I got ready to go. We left and headed to Wal-mart for a few last minute needs and then off to clinic we went. He fell asleep on the way and slept through me getting him out and putting him in his stroller. That was not so amazing, the amazing part was that he slept through his blood draws. I had put Emla on his arm, I guess that is living proof that it works. The lab tech said that was the first she had ever had one sleep through it. He woke up soon after and we went to weigh. He was 28.4 pounds. That is down from 28.8 last month. That is not bad since he just had 3F8 which is known to decrease the appetite. All his counts were great. His platelets were 166,000 which is awesome after 3F8. He normally bottoms out, but since he started at over 233,000 he did well. He saw Dr. Berkow and was his normal silly self, but all looked well. We will go back on 12/23 for a CT scan and to draw HAMA blood. After that we will go in January for a check up. We were there much longer than anticipated so we missed our next planned event. We were going to go to a baby shower at Ca Ca's work and surprise him. We missed it since the Dr. was just entering the room at the time we were supposed to yelling surprise. Oh well. We stopped by afterwards because I had already told Taylor we were going and he would have been real ticked off if we hadn't. He ate some cake at Jim's desk and then as usual made the rounds collecting candy. He asked when we parked if he was going to dress up like Mike, his Halloween costume, I guess he remembers collecting boo coodles of candy that day. We went to sit at Guh's house for a while so we could meet Jim at the Oliver Garden when he got off. That was my choice for a good dinner for several reasons. I get to be NPO tonight and get to eat hospital food the rest of the week not to mention that was the last night out for a long while! We are back now packing up a few last minute things and putting the car seat in and doing that sort of stuff to prepare.
Nervous, yes!! I am nervous because I know what to expect, but also comforted by the same thought. I am worried about how Taylor will do with a brother as well as how I will handle 2 kids all day by myself. I am not the first to do it and I wont be the last, so I know I will survive.
Pray that Taylor's scans are clean and clear. Pray we all do fine tomorrow and adjust to a new baby in the house. Pray that neither Taylor nor Logan endures any of this again!
December 14, 2003 Day +256
Taylor woke up from yesterday's nap at about 6:00, so we headed out to look at Christmas lights. At first he said he didn't want to go then he decided he wanted chicken nug nugs from Don Don's. We let him "drive" in daddies lap around our block to look at lights then pulled over and strapped him in and headed towards bigger and better things, nug nugs:) He was hooked. He hated the interstate because there was no lights to look at. He liked passing over 4th Avenue because there were a few houses there and on McAdory School Road that had lights. We got to Don Don's and got nug nug's to take on the journey. He only ate 2 of them, but I think he is so exhausted that he just doesn't know what he wants. We rode through Riverchase and they had nothing. We went to Trace Crossings and found all kinds of good stuff. He loved it. He was pointing and telling us to look. He loves those gigantic blow up things and one house had a huge Santa in the window that waved. I think his favorites were right here at home. Our neighbors have a huge train and a Santa on a tricycle that cracks him up. While we were out we got a call to see if we wanted to meet Maw Maw, Papa, Jeanna and Bob for dinner. We asked the boss and he approved so we did. He again didn't eat to much, but he was trying to play and sleep:) He wanted to ride in Papa's truck so he rode home with them and he gave them the tour of our neighborhood and all its lights. They pulled in the driveway to drop him off and all of a sudden they backed up, he wanted to see the tricycle Santa one more time.
He was absolutely exhausted, but had so much he wanted to do. He had to show us all the toys he got in NYC once we unpacked them. He wanted to play with everything in his playroom. He wanted it all, but was running on empty. He was not grumpy though or maybe we just had more patience after a 2 week break:) At any rate we are so glad they are all home safe and sound and that we will not have to go back for a while. I was asked if that made me nervous. Boy does it!! I am so excited to be nearing the end of treatment period but really glad to end the NYC part of it. However, it is very nerve racking to think anything could be going on in his little body and we are doing anything to stop it. I know he is NED now, but that is no promise of forever. It would be more comforting to just treat all the time. Even if it were a round of chemo every now and then. That makes since to all the other cancer parents even though it probably sounds crazy to others. People ask if we are glad to get back to normal. Children's hospital, Dr apts, chemo's, shots, meds, ports, etc. that is normal. I have no recollection of normal before. As for his port being removed. We will speak with Dr. Berkow, but the Dr's here think it will be best to keep it another 6 months just to be on the safe side. It is not a big deal since you only have to flush it every 6 weeks. We will go to the clinic for an apt. once a month anyway, so we will be able to do that then.
As for today we slept late. That is a lie!! After staying up until 1:00 he was up at 7:00. I slept awful. He did not want to go to his bed and it was kind of hard to say he had to when we hadn't seen him in 2 weeks, but when I woke up at 3AM and was about to fall in the floor he had to go. He was back in 5 minutes and we just had to make due, more like Jim had to sleep at the foot of the bed. It was interesting. We got up and Taylor got a bath and played for a long time in the rain in fact he stayed so long that my shower was ice cold. Guh came to get the few things that were left in his luggage, but she forgot it:) We headed to the Camp SAM party around 1:00. He loved it and so did we. There is nothing that Camp SAM does that we do not absolutely love. We started by eating some wonderful desserts. We saw many friends that we met at the hospital and at camp. We saw a slide show of all the camp sessions. It was bitter sweet. There were fun and funny pictures, but some of those kids have since passed away or relapsed. Then the big event, Santa. Taylor was looking up at the ceiling because he was convinced that he was going to come through it to get in. We convinced him that Santa couldn't give away his secret of how he gets skinny enough to do that, so he would probably just come through the door. He was satisfied with that. He was the first kid to sit on Santa's knee and hug Mrs. Clause. He got a little pull toy dog that barks. He has one similar to it and loves it so he was so excited to get it. He had to pull it all the way to the car in the freezing cold. He held it and played with its ear all the way home. We have been telling him that Santa is on the roof looking to see if he is good or bad. He is totally convinced that it is the truth since he got a toy he loves. How else would Santa know he would love it if he didn't peak in from time to time:) Taylor's camp buddy and fellow Neuroblastoma fighter, Levi, won the grand prize, a TV. Way to go Levi! After Santa we left. I am not sure if it was over, but he still so sleepy that he was getting a little grumpy. He did manage to get a Auburn toboggan that the knitters guild donated and he signed up to go to the circus in January. Thank you Camp SAM!!!!
Back home we had dinner and cleaned and got ready to head to the hospital Tuesday. We also made Taylor a Christmas tree shirt with his hand prints. Not a big deal, but seeing as he misses out on that kind of stuff since he is not in day care, we try to do it. He loves to paint, so he really enjoyed it. He is excited to wear it. We go to clinic tomorrow and we will update late, after we get back. We will do updates after Logan is born, but they may be late or short. However, be sure to check in and see how we all are during this huge transition.
One last thing, time for me to climb up on my soap box. There was a speaker today at the party, a Miss Alabama contestant whose platform is childhood cancer and is responsible for getting the childhood cancer tag started. She said from the looks of it we will not make it and that tag that could benefit children like Taylor will not be produced therefore no money will go to research. As a parent of a child that has had cancer and a very stubborn one at that, I beg you to go out to your local tag office and fill out the commitment to purchase forms and pay the $50 fee. $41.25 of that $50 goes to Children's Hospital's Oncology department for research. Leukemia has come very far over the years with massive amounts of research. It still has a long ways to go, but tougher cancers like Neuroblastoma and brain tumors still need to raise their survival rates. The only way to do that is with research, but the funds are not there. Please buy a curing childhood cancer car tag and help raise money to fund that research. Maybe in the near future when a child is diagnosed with NB or relapses with it there will be a cure for it. All you have to do go to the tag office when you buy your car tag or make a special trip:) and fill out a commitment to purchase form and pay the 50 fee. You will get a receipt that you will show next year if the tag is passed and you will get the actual tag then. It is very simple. We need 1000 commitments and so far only have 70. Please for Taylor, Levi, Sarah Anne, Matthew, Ashton, Gracie, Todd, Ross and the many more in Alabama that fight cancer everyday.
December 13, 2003 Day +255
He is finally home!!!
I emailed Dr. Modak to let him know that I had rescheduled the CT scan date for Dec. 23rd. and I went ahead and asked him if he had read the MIBG films yet. He said yes and they are NED!!! Praise the Lord. That is a big test and a big load off to hear they are clear. We still have urine markers, CT, and bone marrows to hear about, but it is unlikely to see something on those and not the MIBG. I am not saying we do not still have a little anxiousness, but we can breath a little easier knowing the MIBG is good. Please continue to pray that the other scans are clear as well.
Last night Jim and I had a date. The kind of outing that was typical of us pre kids. We went to see Stuck on You at the movies. Very funny! Then we headed home seeing as it was 9:30. We got home and changed into our pj's and I was watching TV and he was cleaning his gun and going through hunting stuff. He decided he needed something from Wal-mart and that was that. Here it is, midnight, and we are re-dressing and heading to Wal-mart and why not follow that up with The Waffle House. We did run into to trouble there, something we totally could have lived without. A corvette and an 18 wheeler had crashed head on and the interstate was closed down. The know it all crowd in The Waffle house said it took 15 minutes for the police to figure out what kind of car it was, that is a sure sing of it being bad. Anyway, we enjoyed our good old greasy food at 12:00AM and then again headed home and changed. This time we went to sleep.
This morning I was awakened bright and early (6:30) to my cell phone singing Jingle Bells. Who was it you ask? Taylor, saying "pick me up pease". They were in LaGuardia waiting to board the plane. We got to the airport a little before 10:00 and he landed at little after 10:30. When we go Jim is always waiting in the window area and we wave at him before coming in. Our plane is so small that we do not go through the terminal thing, we just walk off the planes and up some stairs into the building. I guess he remembered because he spotted us before mama and Mary did. He was waving from his seat on the plane. That is good eyes!! He waved to us and the boys waved to Mary while they waited on the plane checked baggage to come out so they could get the stroller. We then headed over to where they would pass security and we could see them. He was so excited. He hugged us both and was a little shy, but was soon talking away. He blabbered all the way home about May May and snow and how it was gone. He saw Santa and got toys and choo choo trains and on and on..... It was the most wonderful sound. We got home and within 15 minutes my living room was a disaster and I wouldn't have it any other way!!! Jim and I went to the store alone. It started to rain just as we got him and we saw no reason to get him out in the cold and rain after having to be in it for 2weeks. He was perfectly content with all his toys anyway. We finally talked him into laying down around 3:15 this afternoon and Jim and I sacked out, but not Taylor. He watched Lady and the Tramp all the way through, it stopped, rewound its self and restarted and he fell asleep in the middle of it the second time, around 5:00. We were going to go look at Christmas lights, but if he sleeps to long I guess we will do that tomorrow.
He got home and saw all the gifts under the tree. He found one that had his name on it and just took the liberty of opening it before any of us had a chance to stop him. Luckily it was a dollar store pizza set that I just found spur of the moment and not one of his bigger items. He has not messed with it again. I am not sure if he thinks that all there is for him or what, but hopefully he will stay out of it. He hung up the new ornaments that we saved for him. Again they are all in the front on the bottom, but that is okay.
That is all we did. We have just hung out and played and marveled at how different he seems yet the same. He picked up like nothing ever happened, but we feel out of place kinda. He has gotten things out and put them back where he had left them rather than where I put it, in the toy box. He did look in Logan's room for his toys like that was a big surprise, but didn't say anything. He made sure all his stuff was in order before settling in to take his coat and shoes off and ask for white pud and tea. He is talking a mile a minute and silly as I have ever seen.
Tomorrow we will go to the Camp SAM Christmas party and Monday we will go to clinic to have a urine test done, blood work, and see Berkow. Tuesday is the big day. Taylor will be having spend the night company at his house during that event. We want to keep it as normal as possible especially after him just getting home. We will probably keep Taylor at the hospital during the day or good portions of it and then let him go home and have someone spend the night at our house with him. We will be limiting his outings this Winter as well. Not just because there will be 2 kids (not that that isn't reason enough), but because of the flu. He has not had a flu shot or any immunizations for that matter, so he will stay inside and away from crowds just as he did last winter while on Chemo. No reason to risk it when we do not have to. So this winter we have a double reason to ask that when you visit to please wash your hands before touching either baby. Thank you!!
Please be sure to thank Jesus tonight for clear MIBG results and a safe return home. Continue to pray for the other scans and test. Pray for all our friends battling cancer and families who have lost a loved one and must face the holidays without them. Pray that Tuesday is smooth sailing for us all.
December 12, 2003 Day +254
Only 1 more day!
Well, we made it. Our 2 weeks are up, thank goodness. I'll admit it was not as hard as I had imagined, but I did keep rather busy and when I was resting, I was dog tired, to tired to think about it. We have missed him though. It was great to talk to him, but to hear his little squeaky voice was hard too. I talked to him tonight. He was playing with another new Thomas train piece that he got at FAO Schwartz today. They had to wake him up once they got in, but he didn't mind when he saw where he was. He told us about the train and how it loaded fish into the other pieces. He of course was putting Cheerios in it. We got a good laugh from Guh's encounter with smarty pants. Last night he touched her leg and said "what's that, Guh? That's pat, you pat as a pig". Pat would be fat. She said they have laughed and laughed and I could hear him in the back ground just a cackling as she told me the story. We aren't sure where he got it, but it is funny all the same. Of course Guh is ready to hit the treadmill.
Yesterday's bone marrow aspirates/biopsies went well. He has only complained of pain when he had his diaper changed. He has, as usual, 4 huge bandages on his hips and they will be a PAIN to get off. We go to clinic here on Monday, so we will grab some whisk and hopefully by then he will have loosened them some in the tub. This morning he did his 3F8, the last one EVER, and then went for a cat scan. I spoke with Dr. Modak and he said we can have Taylor's port removed!!! No more "spare parts" or unfamiliar, infection causing things in his body. He still has the cuff that held the external line in. I would like that gone to so that we can completely take away that risk of infection, but I am not sure if they will take it out or not. We will discuss all this on Monday when we see Dr. Berkow. I can not believe we are ready to de-port. It is all so wonderful and frightening!!
Guh just called. He did fine with the last 3F8, still no pain or narcotics. The NP brought in his contrast, the stuff that makes him light up during the CT, about 10:00, but he was not done with 3F8 yet. He can not drink it until afterwards which meant he would run out of time, it has to be drank 2 hours prior to the scan. It could not be rescheduled for today and heck no we were not going to leave them there to do it Monday, so he will have it done here. I called good ol' Meredith to schedule him. He had to be NPO from midnight for no reason. He lost Guh this morning when he asked for tea and she said he couldn't have it yet and he said "pease Guh". They are back in the room and getting ready to pack. It stinks that they got out so early and could have made the flight that left today, but they opted not to change it. This way they do not have to rush to clean up and pack.
They have a car scheduled to pick them up at 6:00 tomorrow morning. Their flight leaves at 8:40 NYC time and lands in B'ham at 10:30. YEAH!!!! I know I am ready to see Tater and I know Mary's boys are ready to see her. I am glad to turn the homework back over:) No, it has been kinda fun to change the pace up, but it is different to deal with a 7 and 11 year old than a 2 year old. Although Blake and Taylor are 2 peas in a pod, so I got a glimpse of my life in 4 years:) As for our Saturday, we have to go to the grocery store. We were going to go, but since all we need is stuff for Taylor, we decided to take him so he can ride in the car buggy. We are going to try to do the Zoo Safari, we shall see. Sunday we go to the Camp Sam Christmas party. So, we will be busy the next few days, but that is good since after Tuesday there will be no more outings for a while.
Please pray for a safe return home and all clear scans. Pray that all goes well with Logan's delivery and that as we wind down, and come to a stop on the road called Cancer that we never again have to turn around and go back down it.
December 11, 2003 Day +253
Only 2 more days!!
We got an early wake up call this morning from Esther, the nurse practitioner in NYC. She needed us to fax her something giving Guh permission to sign his bone marrow consent forms. That was fine and Jim was still home so he was able to get her fax number and head on to work and send it. What made it annoying was that I asked several different people on several different occasions if I needed to send anything with them giving them permission to sign things like that and they said no because I had signed everything needed up front and they could do it by phone if an emergency came up. I also do not recall ever signing anything for the bone marrows, but oh well. We knew NYC would have to throw something in there to keep their strong record of "wonderfulness" up. Speaking of wonderful. He had his MIBG scan yesterday. He is not sedated for that in Alabama, but he is in NYC. Since he was sedated he had an oxygen mask and all on just in case he needed it. Well, the high tech, world known, treats the stars, MSKCC used a paper cup with a hole in it!!!! Now that is top of the line, high quality medical care! NYC, gotta love it.
As far as the scan goes it went smooth. He woke up several times while on the table. They give him Cloralhydrate, a liquid med to sedate him with a little Benadryl to help him sleep. It does not work for him, he always wakes up. I do not know why they don't give him prophonal or something that will knock him out. I guess they really just want him still, but B'ham's method for that seems easier than making them be NPO all day for nothing. B'ham just tapes him to the table and puts rolled towels all around him to keep him still. He does scream bloody murder the entire hour, but hey he is fine when it is over and he is not starving to death. I guess it all comes back to that high tech, top notch hospital policy of theirs. Of course this was Guh's first MIBG, so she wasn't sure of what she was looking at and even so we are just "armature doctors" and we just hope what we thought we saw was right. She said she saw a full bladder, but no other spots lit up. A MIBG is where they inject a radioactive isotope into the body 24 hrs before the scan and it will stick to any cancer in the body and light up when he is put in the machine. If nothing lights up then there was no cancer present. It also can help look a bone marrow disease. NB travels in large clumps, so when they get a "clean" sample of bone marrow, it could be because they did not get the sample from a spot that a clump was in. If you repeatedly get clean samples then you are more than likely truly clean or very limited in the amount of disease there. Now do you see why NB is so darn tricky and out of control!! The MIBG can light up shoulder blades, hips, knees etc, places that are highly concentrated in bone marrow if there is bone marrow disease in that area. That is why NYC likes to always do those scans in their facility rather than us do them here. They use a stronger isotope and they do 4 aspirates and 4 biopsies of the bone marrow where as B'ham only does 2 aspirates. NYC has a much better chance of catching NB in their sample. Now that I have rambled on and on about scans you probably didn't want to know about, I will move on.
We got more interesting news yesterday. They have Taylor scheduled for his make up days of the 2 3F8 doses he missed on 1/6. Meaning he will start GM shots in 3 weeks rather than 8. We have no idea how it will work. After 4 doses you move to an 8 week period at home rather than 3, but with it being make up days we do not know how it is supposed to go. I again, can not travel if he goes that soon. I have to wait at least 6 weeks after Logan is born. Jim will have more vacation by then, so it will not be to bad plus is will only be a few days rather than a full 2 weeks. Either way we have to send hi next sample of blood to check for HAMA on 12/23. I wonder how much that will cost to guarantee that it gets there on time during the Christmas rush? Guh and Mary are working on finding out all the info on that and you all know me, I will email Dr. Modak myself and ask again.
Guh finally called. Their day in clinic is over. He had his bone marrows this morning and then had the 3F8. Normally that would make for a long day because all of the sedation meds have to be out of his system before he can have any narcotics, but since he has obviously recalled his HAMA and is having no pain he did not need narcotics, so they just gave the 3F8 and he left. He is sleeping in his stroller since he did get Benadryl. They called me as they walked around the now much warmer NYC trying to find FAO Schwartz. I assume they found it. They took advantage of his snoozing to walk rather than take a cab. Cheaper and probably safer:) Tomorrow will be much the same as today, he will get a CT scan then 3F8. The that will officially mark the end of his 3F8 treatments in NYC. They can go pack and be ready to hit the road or air should I say.
I emailed Dr. Modak and he said that they had a meeting on Taylor yesterday and he will NOT make up the 2 doses missed due to holidays. He will stop at the 38 doses, so he will no longer get GM-CSF shots after tomorrow. We will still send HAMA blood draws to see how long it takes for him to lose this one. That is only for their study and will not bring him back for more treatment. We will also continue to travel every 3 months for about the next year to do scans. Our next trip will be mid March. My birthday will be spent in my most favorite city:) Last year we had just landed from Paradise, Disney World, but my actual birthday was spent at Children's doing a 24 hour urine collection. I must say even that sounds like more fun than NYC. However, NED scans will be a wonderful way to celebrate!!!
Please pray that all scans and BM's are clear of any cancer. Pray that the 4 rounds (what actually hurt) did its job in his body and rid it of any cancer remaining. Pray that as we wind down our treatment of this disease we never again have to turn back down this road. I hope it is one way road and we have reached the end!!! Please pray that they have a safe and on time flight back to Alabama. Pray that I am feeling well enough to soak in as much activity for him in the 3 days he is home before we head to St. Vincent's for Logan's birth. Pray that the delivery all goes well and mama is not a big chicken!! Pray that Taylor adjusts well to the baby. Pray for all our cancer friends that battle everyday. Pray for Jake as he continues to be in pain. Pray for Carl who has relapsed after 9 months post transplant. (Taylor is 8 months post) Pray for Jordan who has relapsed and has several tumors including one on his spine that is causing paralysis. While you are praying be sure to thank God for all he has done for us and will continue to do for us. Thank you to all of you out there who have been praying so hard for us and will continue to do so. We love you!!!
December 10, 2003 Day +252
Only 3 more days!!
We got interesting news today. I guess we just didn't fully understand it all. I will try to explain this so that it all makes since, so bare with me. When you get 3F8 you want at least 4 rounds. That is optimal. If you get to say, round 10 with no HAMA and then you HAMA after round 10 then you just quit. No need to keep testing since you got the optimal number of 4. If you HAMA before round 4 then you retest until you lose the HAMA and you continue. If you HAMA after 2 you would continue on until you got 4. Since Taylor got HAMA after round 3 and then lost it and this is round 4 he is officially done after this round. He has achieved the optimal number of 4, but since he got HAMA he will not continue to do more as he will recall the HAMA and it will not work. You have to have 40 doses and since he missed 4th of July and the day of the black out he will only have 38 doses, so we will return for 2 doses. We are more than likely going to continue to do scans there every 3 months. There isotope for the MIBG is different than that used here in AL. They also do a more detailed bone marrow test. I am not sure if they will do all scans in NYC or if we will continue to do bone scans and CT scans here in Alabama. Either way we will only spend 3 or 4 days in NYC every 3 months and then it will dwindle to 6 months then a year etc..
That was good news, bad news, etc... all rolled into one. It is rather scary to think that he will soon be off treatment. He only has 2 rounds of Accutane left, so in 6 weeks he will be off of that, he just had an immune test in NYC and in about 4 weeks we will know if he can come off his Accyclovir and Bactrim which are the only 2 meds he takes pertaining to his cancer. That is so Wonderful and scary!! As scary as it is, I truly believe it is God's way of answering our prayers of concern. We just had a conversation on what we would do with Logan when we returned to NYC. Did we really want to leave a 2 month old baby behind for 2 weeks, but then again did we really want to take a 2 month old baby on a plane and to the RMH for 2 weeks? UUGH, either way you look at it!! Now, we will only be gone a few days, so either way we decide to do it we can work it out. Also, with it being such a short amount of time, it will be so much easier for our "helpers" to get off and go with us. Now you all can imagine how crazy I will be with no treatment. I need that since of "doing something" to get me through the in between scan period. I know God will walk us through this. I Pray that we are done with this journey and we can live normal again. I pray we never have to walk this road again and that our next step in this journey is to help the new comers to this family. I hope that God shows us our next step soon. I am more than willing to speak, or do whatever to help other that are dealing with this new found lifestyle.
Anyway, other than that news, he had no pain which could mean that it is a HAMA coming on and it will be a while before he goes to make up those last 2 doses. He is going back to the clinic at 1:00 Eastern time to get ready to be put to sleep for his scan. He has been NPO since 8:00. He is so hungry and is begging to eat. It will be around 4:00 before he can eat. Poor baby. Please pray that this scan is clear!!!
In all our excitement yesterday with his NY Giant story, we forgot to tell you about my LAST prenatal visit!!!! I gained 4 pounds in which he says is baby. I again did not get checked as he says it doesn't much matter since I am having a c-section. Dr. Damrich did confirm my fears, the 2nd c-section is harder than the first due to scar tissue. It is harder to get up and move. We have several things planned that hopefully will help me get up and about. I have 2 kids to care for this time, so I have to get up. Pray that I am not a big baby and I get through this okay.
December 9, 2003 Day +251
Another day down and only 3 more to go. We are picking them up on Saturday morning at about 10:30. Yeah!!
Today he had no pain, but he did get a "just in case" dose of Dilaudid. He did get a shot today. We were pretty sure he would need one, it doesn't take long for that number to drop. He was finished very quick today and was able to go back to the RMH to play for several hours before he and Guh headed back to MSKCC to get his injection for tomorrows MIBG scan. He always wears his hospital ID bracelet all day, but today he wanted it off. So once they got back to the injection room they had to go back to the day hospital to get another one. It didn't take long and they were all done with the injection. Taylor picked a bagel and an apple. He had to think if he wanted a red or a green one. He ate it all too, he has been a P-I-G this trip. They stopped by the store and he reached threw his plastic stroller cover to grab a Reece's stick, so Guh had to pay, again. He weighed in at 13.1 today, he doesn't seem to be gaining, but he is eating. I guess when you eat healthy it doesn't add up as fast. I wouldn't know:)
He has been waving at his "pwends" when he sees them. I am so glad he made friends and I hate he has to leave them. He doesn't see many other kids here at home. Hopefully those kids will be around on our next journeys to NYC and he can maintain his friendships with them. He has also made a McDonald's drive threw out of legos and drives his cars up and asks if they need food. He is so silly. He is making his own sandwiches, just ham and bread. He is eating like a big boy too. I miss him so much. I can't wait to see him in the airport. I remember the last time we had been separated. He came with Pam and Eddie to pick Jim and I up when we went to Vegas. He was so little and just starting to limp, in fact he went to the Dr that night, for about the 10th time!! I can just picture this reunion... I will be bent over (best I can) reaching for him as he runs towards us and then he runs right past me and into Jim's arms....
Guh just called us. They just got back from another Christmas party. This one was with the New York Giants. Cool huh. One of the line backers was dressed up as Santa. Taylor has not napped today and he was so tired he could barely stand up to sing carols. He finally fell asleep slap in the middle of the party. The Santa/line backer took him from Guh's arms and held him for a picture. Taylor was sound asleep in his football pajamas, very fitting. Santa's beard tickled him and he swatted at it in his sleep... He is so silly!! He is sacked out at 8:00, so Guh and Mary are going to curl up and watch It's a Wonderful Life.
Tomorrow he gets his MIBG scan and that is about an hour and a half test, so it will be long. He will be NPO all day, so it should be fun. Tomorrow's update may be late depending on how long they have to stay. Pray all scans are clear!!!
December 8, 2003 Day +250
If you would like to mail Taylor something do so today. It will take until at least Thursday to get there. They will be leaving the RMH at 6:00 Saturday morning.
They got back earlier than I expected and caught me before I left so here is an update. He did not require a GM-CSF shot today. That is what makes Monday longer than normal. You have to check counts before you give the shot and if his ANC is over a certain number you don't give it. He will more than likely get it tomorrow, but he will have to check counts again, so they will have another long day. That is okay though since they have to have his MIBG injection at 2:30 anyway. Latisha will give him a shot if he needs it since Morgan will be getting bone marrows done. Pray that they are all clear!!!
He had no pain. He did that the time me and mama went and never had pain the 2nd week. However, the last time we went he had no pain on Monday of the 2nd week, but it kicked in by Wednesday so we do not really know what to expect this time. He is trying to play and they are trying to nap, we will see who wins that one. He starts his SSKI drops today, they are to protect the Thyroid from the radioactive isotope they inject for the MIBG.
That is all we have for today. I will update later if I talk to them again. Pray that all scans go well and pain comes back.
December 7, 2003 Day +249
Sunday was spent doing absolutely nothing. Jim left at about 4AM to go hunting and I snoozed until about 8:45. I got up and showered and sat and watched TV and then took a nap. I put the baby swing together and that was about the extent of any physical labor going on in this house. At about 5:00 Pam and I headed to Sawyerville to meet the guys for dinner at Buck's, this whole in the wall steak house that is the best. Isn't that how it always goes. Taylor called me while we were driving down there and immediately asked to talk to Papa. I had to tell him that Papa was at work because I knew that if he knew I was driving to eat that close to the hunting club he would be mad. He told me all about his new friends. He has been the little social butterfly this weekend. He has made a few new friends that he spent the day with in the playroom. He was about to go to dinner in the dining room and then take a bath and prepare to hit the 3F8 grindstone again. They are planning to go to FAO Shwartz Tuesday which is supposed to be a nice day. Wednesday the rain is going to kick in, but it should melt that snow that is all over. They will start the scans Wednesday. That should make for long days yet they always seem to go faster than you expect. Jim and I are so ready for him to be home. He has a ton of ornaments waiting on him to hang up. We want to try to cram in as much as we can over the 3 days he is home before I go to the hospital.
He has been looking at a Thomas the Train pamphlet that lists all the parts you can buy. He will study it for a while then go tell Guh. "Please Guh, I need dis". It is a good thing it is snowing or their room would be covered. It only takes on "please Guh" and she melts like butter.
Please pray that Taylor's scans and bone marrows are clean and clear of any cancer. Pray that they have a on time and safe flight home. Pray that Logan's delivery is safe for us both. Pray that we all keep our sanity with 2 kids and Christmas.
December 6, 2003 Day +248
I would not recommend mailing anything after Monday as it will take until Friday to arrive!!!
Let it snow, Let it snow. Let it snow!! Taylor, Guh, and Mary are playing in about a foot of snow. Wow!! It is real blizzard snow too. Taylor got his picture made, but it was so windy they didn't stay outside. They will try again tomorrow. It has quit snowing and it not supposed to snow anymore. It better be melting by Friday night so they can get out of there on time!! We finally got to talk to Taylor. Thursday night he started to cry when he overheard Mary talking to her kids. He wanted his Ca Ca. He asked where he was and when they told him in Alabama he said "no, my house in Ny Yuke." So we got to talk to him on Friday. He told us about the snow and when Jim asked him if he was going to go out and play in it he said "no, it's cold." He also told us about pooping in the bath tub. Fun stuff going on in NYC!!!
Saturday Jim and I slept late and then we cleaned some more. Finally our house is clean. We even had the carpet cleaned and I cleaned the ceiling fan, yuck! We went to the Sorority Christmas party. It was a little sad to have the party and all the kids seeing Santa and Taylor not being there. We called him and he talked forever. He talked to me, Jim. Papa. Maw Maw, Jeanna, Bob, and Dugan. He told us all about the snow and how it is white and the necklace he made. When we asked what color it was he said "red, green, red, green, red, green". and it says his name. He was very excited to talk to Papa. He is all fired up to get to the Huntin' club and ride his vroom vroom. After he would talk to one person he would want to talk to Papa again. I hope it is warm Saturday when they get here so he can go ride his vroom vroom at the huntin' club. We got our picture made with Santa and we got a ornament that had Taylor and Logan's names engraved on it. It was a nice Things Remembered ornament that says Make a Wish. Part of the proceeds goes to the make a wish foundation which is the organization that sends kids all over to fulfill their dreams. We are now home and doing nothing.
I am resting. My feet are very swollen. I made it so much further this time without that happening. I was about 5 months pregnant with Taylor when I had to quit wearing my wedding ring and my shoes didn't fit. Yesterday was the first day I had to take my ring off or that I noticed my feet swelling. They were fine when I woke up this morning, but I have been on them all day so they look pretty bad right now. I have zero plans for tomorrow. Jim is going to go hunting early in the morning and I am going to go meet them in T'town for dinner, but other than that I am sitting and doing nothing.
This week I will do the same as last. I go to keep the boys around 3:00. Luckily I will come home to a clean house each day. I go to the Dr. Tuesday morning. That will be my last prenatal visit, the following Tuesday I will be having a C-section. Fun!! I can not believe that in 10 days we will have Logan here. It seems like just yesterday that I was sitting in a room on the stem cell floor updating the page to tell you all that I was pregnant. Wow, time really does fly.
Please keep Taylor in your prayers. It has been working. He has had no fever (knock on wood) and needed no transfusions. Pray that all scans show his body as being free of any cancer cells, tumors, uptake etc. Pray that his bone marrow also comes back clear. Pray that this snow storm is over and that it melts enough to get them out of NYC Saturday morning. Pray they have a safe flight home. Pray that all of Morgan's scans are clear as well and that they too are able to get out of NYC and home safely. Pray for all our friends that are battling cancer. Pray that God gives strength to all the families that have lost a loved one as they start the Holiday season. Pray that Logan stays put at least until they get back home and that he is happy and healthy and never endures anything like Taylor has had to. Pray that Taylor never again has to endure it. Pray that Logan's delivery is safe for us both.
December 5, 2003 Day +247
The Strength of an Egg
by Juliet Freitag
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!
If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope. Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
UPDATE: Guh called back after Grumpy calmed down. He is now playing and they are hoping for a nap. Yeah right. He weighed in at 13.3 kg. He has fluctuated all week, but stayed in that 13 kg area, so he is doing great. He has not had fever (thank God) his counts are holding steady and no transfusions have been needed and has not been constipated. I am so glad that he has done well. He is not interested in the snow at all. He got very ticked off that it stuck to his cup and stroller. It is not going to be a 1 1/2 foot storm, only a few inches. Hopefully he will cooperate enough to get pictures of it. Last night the RMH had a build a bear like company come. He had 3 animals to choose from and he picked the elephant. You get a birth certificate so he had to name it. Mama said they must have named off about 40 names and he finally (all on his own) picked Bear. So, our little War Eagle fellow has a stuffed elephant named Bear. Go figure!! I do not think they have many plans for the wintery weekend. They may go to the pottery place, but I doubt they try to get back to Times Square in this weather. He is happy in the playroom, so that might be where they hang out all weekend. Sounds like loads of fun!!
Finally it is Friday. It has been a fast week for me and I am glad. Hopefully next week will go by fast as well and we will have Taylor back. I bet that it hasn't seemed quite so fast for them, but hopefully it hasn't been to bad. Next week will really seem long for them with all the scans and NPO going on. How do you all like the little story above. I found that on another site and it was so true that I had to share it all with you. That really sums up the feelings we really do have as parents of a sick child.
Today I get to pick up Taylor's Christmas pictures. I can't wait. I actually forgot about them until I was looking for a picture to put in a Christmas frame. As for the weekend we are going to do nothing Friday night. Just sit around. Saturday is cleaning day. I have done nothing at all in this house. I have to get it good and clean while I have the chance since I will be a little tied up the next few weeks, months, etc... Saturday night we are going to Maw Maw's sorority Christmas party. I hate Taylor will miss it, he always has fun and the number of kids keeps growing every year. He is also missing the Children's Harbor lighting ceremony on Sunday. He isn't missing everything though. Sunday the 14th we get to go to the Camp SAM party and then on the 22nd he will go to a Stem Cell reunion Christmas party. I plan on taking him and leaving Logan at home. I think I will need a driver, but I should be able to walk okay by then. Enough to manage that little activity. We shall see.
I just got word that they are done with this weeks treatment. He had some pain, but not near as severe as the last few days. He only required 2 Dilaudids today compared to 3 yesterday. I will have to write again later with more details. She had to get off the phone because of Mr. cranky. He is in a very fowl mood right now and wants total attention. In the midst of a narcotic induced rage it is best to just do as he says and wait for it to pass. So, I will get full details later. He did get his port de-accessed and the first thing he asked to do was take a bath. It was snowing really hard on the walk back. I hear a foot and a half has been predicted. I hope it is over by Monday and I really hoe it is over by Friday so that they can get home on time. Be sure to come back later to see the rest of the details of the day!!
December 4, 2003 Day +246
Isn't is funny how each phase your child goes through is the funniest. I hate to see Taylor grow up so fast, but each phase is as fun as the last. However, I assumed once he learned more the funny would go away, but I don't think it will. Last night as I was getting ready to help Blake, who is 7, with his homework, he just cracked me up. All he had to do was study for his spelling test and I asked him if his mom called them out to him and he wrote them down of if he spelled them out loud. He said "she says it and I say it". I took that as him spelling them out loud. He proceeded to say "for example, you say foot" and I did and he spelled it back to me. Then asked "do you understand?" it cracked me up, so we called out the words and he did quite well. I was so glad he was able to make me understand the process and we could get down to some serious studying:)
It was a crazy driving day for me yesterday. I tried to go to the bank, but had to leave. About the time I was going into the bank parking lot a power line fell and all power went out so the bank had to close. The big problem was the idiot who decided he was not going to g around the line that stretched across the road, but run over it. He ended up getting it wrapped around his tire and about pulled the entire power poll down until people started screaming for him to stop. I was stuck at the bank until the cops and firemen came to direct traffic away from the line. Finally I got out of there and just in time to get to Mary's house. The on the way home I had to wait in the middle of a traffic jam caused by a wreck. I am not used to all that. We lived less than a mile from work and then once we moved here I only worked about a week until I had to quit, so this rush hour driving is not my thing.
I talked to Guh again last night. I just had to give them his scan schedule. I feel a little silly telling you what the CT capho is. It is a cat scan which I knew that much it was the capho that was throwing me. That is chest, abdomen, pelvis, head, and orbits. I am assuming that he has to have a full CT occasionally for protocol because we normally do not do his CT in NYC. At least it will all be out of the way and we will not have to worry about a long day at clinic here in AL after Logan is born. We do have to back to get a urine test again. The one we did last month that we worked so hard for and even caught in a cup was not handled properly. The lab did a urinalysis rather than the HVA levels that detect NB tumor cells. I was a bit disappointed since I was wanting to know the results plus how much trouble we went through to catch it:) Oh well!! Guh and Mary finally got to experience Dallas Bar BQ. It is pretty good to be Yankee Bar BQ. Taylor loves the yellow rice and corn bread.
I finally got the call saying they were done. They waited to see if he would fall asleep but he was having no part of it. Yesterday they just laid down and finally he laid down and fell asleep. Today they tried that but he would sit them up and say "sit up". Mama just propped up and he said "no, way up". He was gone with Mary to get the stuff to make sandwiches and he got back about the time we were going to hang up. He had gotten some white pud while he was gone and was telling her he has a big pud, but it was really mayo. It made me sad to hear his little voice in the background. I miss him so much. I am so glad that he is able to go off like this and not freak out, but still I miss him. We have not talked to him because we do not want to upset him since he id doing so well.
He had a lot of pain today and required all 3 doses of Dilaudid and 3 doses of Benadryl. He is a little puffy and very splotchy with hives. He seemed to be in a good mood, but that is subject to change at any moment. If he will ever give in a take a nap, he will be better off as will they. Tomorrow is the last day for this week and starts the downhill slide. Tomorrow is supposed to be wet and snowy so hopefully they can get in and out quick and then stay inside. They may go to the Pottery store and paint some. It is just 3 or 4 doors down from the RMH. That way they can get out, but not have to go to far in the cold.
Please pray that the scans are all 100% clear and he can stay NED forever. Pray that the next week goes fast and we are picking them up at the airport soon. Pray that there is no weather that could delay their return. Pray that Logan stays put until they are home. Pray for all our friends that battle this with us.
December 3, 2003 Day +245
I just got word from NYC that 3F8 is over for Taylor today. He did have pain again and the splitting of doses of Dilaudid didn't really help to much. I guess they will just have to give the premed tomorrow. That will not alleviate the pain, but will help it some. He is ill as a hornet and is in a only Guh can help me mood. It is usually me, so I am not missing that part of the trips. His counts have dropped some, but are all still in the normal range. His plt count is down to 182,000 from 230,000. That is still a great number, but it stinks that his counts get bombed the way they do.
He is mister pretend right now. He loves to play Buzz. He is Buzz, Mary is Bulls Eye and Guh is Jessie. How funny!! Guh is also Ca Ca in the since that she has to let him ride her back and he will put her hands on his ankles and say "pick up, swing back forth". That is what Jim does to him. Guh is getting beat up on but loving it!! He is also enjoying playing in the dark bathroom (they are so afraid he will lock himself in) and the closet. He has been hanging up everyone's coats and his night night when they get in from clinic.
I have gotten a schedule for his scans finally. He will have his MIBG injection on Tuesday at 2:30. He will get the actual scan at 2:00 on Wednesday. That stinks because he will be NPO (no food) after 8AM. That means Guh and Mary are NPO after 8AM:) Thursday he will get the bone marrows done. We do not know a time yet, but he will be sedated, so hopefully it will be early. Usually we do it early then do 3F8. Friday he will get a CT capho. I have no idea what that is. I have never heard of it. I had asked about an immune function test, so maybe that is what it is. He will again be sedated, so again we hope it is early.
I have learned of 3 children with NB stage 4 relapsing over the last few days. One child has not even gotten as far as Taylor and the other is just a few months ahead of Taylor. He had no signs and his parents had even updated his page that they had no reason to suspect. Obviously I have written those same words, so it is a little scary going into this round of scans. Please pray that Taylor is still NED and he can continue to rest of the treatment he is on. Pray that the children that have relapsed can again conquer this disease and for good. Christi did not get her stem cells back yet. Pray she is feeling fine and they are able to concentrate on getting her to NED status. Pray for all our friends battling this with us. Also, remember all the kids that have passed on and their families. It is difficult everyday, but the holidays, a first for many, are here and I am sure that only makes it harder.
I will update later if I hear anything new. Keep those prayers coming!!!
December 2, 2003 Day +244
LATE UPDATE: I got a call from Guh around 11:15 our time. Taylor did have pain today. It was pretty bad because he did not get his pre-med dose of Dilaudid since they didn't expect him to have pain. It takes a while for that catch up dose to work if you don't get the premed. He will get it from here on out. Actually he will just get a catch up dose with is flush because his pain started very late in the treatment. It is something that has to be tweaked until it works just right. His heart rate got up to about 180, but he did okay and it got back to normal fairly quickly. They went back to RMH and he slept about 3 and a half hours. He woke up in a good mood, but quickly got snippy. He had lost a little weight, but that is expected and we do not worry while on 3F8 about weight to much. It was snowing during their walk to the clinic, but Taylor didn't care. He isn't a morning person anyway, but to get woke up only to get a shot and then to bundle up like and Eskimo really ticks him off.
Last night they went to a Christmas party at the RMH. He got his picture made with Santa and Pooh bear. They had already had pizza since they didn't realize dinner would be served. Oh well!! He is happy as a lark since those two don't mind sitting in the playroom. I on the other hand hate to sit down there. He finally called out for me, but only when the pain hit. I am glad he is doing fine without me, but it would be nice to be missed!! I have to say I am doing better than expected as well. I haven't been at home alone yet either, so my day may be coming.
I went to the Dr. today. I was so late. I was at the hospital on time, but they are redoing the parking deck so I had to park a million miles away in another deck and I got so turned around trying to take a hundred elevators and cross walks to get over there. I made it though. I didn't gain weight and my BP was fine. I probably lost a pound on the walk to the clinic :) I was prepared for an exam, but did not get one. He said since I am having a c-section even if I go into labor before the 16th, it doesn't matter how dilated I am. He said as long as I don't come in at 10cm and a head coming out he will do the C-section. I go back this coming Tuesday and that is it, the following Tuesday we will welcome Logan into this world.
After my appointment I ran a few errands and then just went and hung out with Drew and Blake. Today's decimal homework was more my speed:) I met Temperance for dinner and then went to a purse party. I got to see an old friend from work, it was great to finally get to see you again Cindy!! I got the cutest purse, just what I needed. Those of you who know me well know how often I change purses. It is a bad habit, but I can't help my self. That is about it for the day. I will update much earlier tomorrow or try at least.
Good morning. Some of you are reading this and others are not. We have contacted are web hoster to try and fix the problem. Some computers are not getting the new updates, but rather an old update. Jim has put a note in the guestbook and in email to the people on the email list that will give you a little help in trying to open the newest page. Pages are updated daily, so please share the news with anyone you know that can not get it to work and tell them to keep checking because it will eventually come through. Please email us if you continue to hear of troubles with it.
I am giving you an update of the rest of yesterday, but it will be late before we get more in for today's clinic visit as I have my own doctors appointment and will not be home until late. Guh called back yesterday afternoon and said that Taylor weighed 28.2. He normally weighs about a pound more in NY than in AL. I am not sure if he has lost weight (he hasn't eaten great the last week) or if the 2 sets of scales are finally a little closer together. Either way that is a fine weight for him. He measured just under 3 foot, he was exactly 3 foot last week here in AL, but again he was asleep and sliding down the wall, so I am sure that is not accurate, but then again that is about right, so it will do. He did an Albuturol breathing treatment before 3F8. He did them last visit before and after, but this time he will only do it before unless he can not keep his O2 stats up after treatment. He is not wheezy, but since he has a history of asthma that is aggravated by 3F8 they are doing it as precaution. He ended up wanting to nap at 5:00, so we will find out today if they were up until midnight.
As for my day. Jim got half a day off, so he went with me to stay with Drew and Blake. Wow!! 5th grade homework is tuff:) We figured out the "trouble" problem, but we did it using algebra and didn't know how to explain it to Drew the way the book was teaching it. Sad huh, we couldn't do it the simple way. It wasn't simple though, it was a work backwards strategy that was to fan dangled for me:) I got the 2nd grade math down pat:) Both boys did great at coming right in and getting it all done so they could go play. After that we came home and wrapped more gifts and watched TV. We ended up falling asleep early. I guess Taylor keeps us up late because it is normally after 11 before we go to bed. We have a night owl on our hands, but he gets it from his mommy. (when she isn't pregnant)
I have my 2nd to last prenatal visit today. I will get an exam so we shall see if Logan really has dropped any or if I am just letting my imagination run away. I am very uncomfortable so I think he has definitely repositioned himself and that is fine as long as he stays put for another 2 weeks. I am interested to see how much weight I gained. Last visit I had gained none in 2 weeks which was fine by me, but after Thanksgiving I am sure I gained this time. I have done much better with Logan that Taylor. I gained about 60 pounds with Taylor and only about 20 with Logan. Problem is I never lost all of Taylor's weight. I should lose after this one, who has time to eat with 2 kids. I am sure sitting in the den will help. I will be up and down steps between each of them wanting food, Taylor pottying etc. UUGH!!
Please pray that today's doctor visits go smoothly for both me and Taylor. Pray that Logan is cozy enough to not want to leave hotel la Kim for another 2 weeks. Pray that Taylor is able to remain fever free and problem free the remainder of his trip. Pray that Taylor has NED scans. Pray that Christi does well as she gets her stem cells back today and that it will help her achieve NED for the first time.
December 1, 2003 Day +243
Good morning! It is day 3 in NYC and day 1 of 3F8. I have to admit I am worried about this day. It is either going to be horrific pain due to a 2 month break or he will recall his HAMA and it will be no pain and not work. The confusing part is that I want both. Monday is always a long day in the day hospital. He will have to wait to see the Dr. and you also do not give the shot on Monday until a nurse checks counts, so that will add an hour to the day. I will update when I hear from them. I am a creature of habit. I got up this morning and went straight to the kitchen and drew up a dose of Accyclovir and there was no one here to take it.
I have nothing but time, so you will probably get several updates each day. I thought since I am bored I could share a Taylor funny with you. He is big into using toilet paper after he potties. Well, let me rephrase that. He gets toilet paper but he throws it straight into the potty. I guess he just knows I get it when I am done, but he doesn't know what to do with it. He tried to tear some off the other day to bring out to the living room. He also likes to bring you a piece and say "blow" since I am always making him blow his nose. He was going to make me blow so he was trying to tear it off. I am not sure if he couldn't' tear it or thought he had torn it, but he was just dragging loads of tp behind him. He had stretched it from the roll all the way to the top of the stairs before he realized it. That is a long way. Our bathroom is long since it has the tub and washer and dryer all on one wall then he had to go down the hall a little ways. It cracked him up when he realized what he did.
Speaking of nothing but time, I need to be cleaning. I really didn't clean last week. It hurt me not to, but I was soaking up Taylor time. Now that I have nothing better to do than clean I don't want to. I can do a real good job without Taylor's help and I just want to sit. Maybe after I get a day of rest and do nothing out of my system I will be ready to conquer the mess. It isn't bad really just tons of clothes to wash and I need to finish wrapping presents. We started that last night. I got a few done, but I am in no shape for sitting in the floor for long. That was nice to wrap without Taylor. He always sits in the paper and looks at the gifts being nosy. I did wrap one gift in totally wrinkled paper, but that is okay, it has character.
Guh just called me at about 11:45 our time, 12:45 NYC time. They are back and like I said the rest of the week will be faster. They saw the nurse practitioner and all was fine and he did great for his finger stick and shot. He fell asleep and then was asked to go get measured. He kept slumping down the wall like a little drunk. He finally got measured and I had so many questions that I didn't even ask what he weighed or how tall he was. Amazingly he is always taller and heavier in NYC:) He had no pain at all today, but Latisha told them it may be Wednesday or Thursday before pain kicks in and that is exactly how it went the last time we were there. He did fine with it and now he is back in the room eating his Wendy's happy meal and playing with his new Thomas train set. Guh said she could tell those monster maker narcotics were kicking in. He is getting frustrated when the train track isn't right and he keeps stomping and yelling hey at it. She said last night he played with it for hours and never said a word to anyone. He is also loving playing play-dough. I hate the stuff, so he only gets to use it in NYC. That isn't my carpet to clean up!! People have commented on his hair finally being all one length. They even got to play southern vs. northern accent with Dr. Kushner, he is a silly guy!! They also are sharing a room with Morgan, so he will have a familiar face on the other side of the curtain and a roomie who likes it dark like he does.
It looks like all is well in NYC. I will update again if I hear anything new. Please keep them all in your prayers. I know how "fun" those narcotics are, so lets pray they don't get to bad. Pray that this is working and it is the cure he needs. Pray that the trip remains uneventful and the weather doesn't get to bad. It is supposed to really get cold tonight.
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November 30, 2003 Day +242
One day down and 13 to go. I have to admit it has not been bad, but as I mentioned it is only the 2nd day he has been gone and I haven't gotten bored yet. Monday will be a good test since Jim will go back to work and I will be alone. I talked to Mama this morning and he did not cry at bed time, but neither did I. I must admit I fell asleep as soon as my head hit the pillow at midnight and I woke up at 7:30 in the same position. I got up to make me trip to the potty and went back to bed until 9:30. At 9:30 I got a call from NYC about the shot. I think they are trying to be sure that even though I am not there I get the full benefit of the excitement of these trips. They called to question the dose he gets it and I told them and when they met up with the wonderful person who is giving him his shot she said I was wrong. So, now I am freaking out thinking I have been giving him his shot wrong for over a year and I went to get Jim up. We got out syringes and calculators and calculated it all up. Needless to say I was wrong this morning, but have been doing it right all along. I guess I was still asleep. We had to figure out the number of viles we use and we use about 7.5 and if I had been giving that wrong dose it would be 4.5, so I feel better now and we called them back to tell them I was just drunk and it is okay. He got the crazy little dose this morning, but it will be okay this one time. Mama said that our shot giver is wonderful and he never even flinched. Thank you sooooooo much Allison!!!!
I have been meaning to tell you all that Taylor is in Ni Yook and he went on a pairpane. He has been cracking us up telling us where he was going and how he would get there.
I think Logan is trying to keep me in the excitement as well. He has dropped considerably. I know that doesn't mean he is coming out tomorrow, but it is a little nerve racking when you do not want him trying to escape until at least the 13th when they get back. I go to see Dr. Damrich on Tuesday. I never dilated with Taylor and was induced. I guess I will be something crazy like 3cm now!!
Jim and I went shopping today. We didn't get anything, but we got to get out and get our minds off Taylor. I did get to talk to mama again late this afternoon. It was a beautiful day in NYC and they got out and about. They took a taxi to Toys R Us and Taylor and Guh rode the ferris wheel twice. He got a Thomas movie and some cars and he has spent the afternoon playing and loving them. They walked ALL the way back to the RMH from Times Square while Taylor napped. He ate at his favorite NYC spot.... McDonald's. He will start treatment in the morning. I will update you all tomorrow as soon as I hear any word from NYC.
Please pray that he does well with this treatment. He has not even mentioned Jim or I, but tomorrow may be different when he gets pain. Pray that this separation and painful treatment is the cure he needs. Pray for all his scans to be clear. Pray for a safe trip and flight home.
Please continue to lift Taylor, Guh, and Mary up in prayer as well as those of us still in Alabama missing them. Pray for Morgan as she does 3F8 and works on healing that broken leg. Pray for Christi as she gets her stem cells back on Tuesday. Pray for all of our other friends still battling this and other cancers and pray those that are NED can stay that way forever.
November 29, 2003 Day +241
I know you are all glad to see I am finally updating. We have been soaking up Taylor time. We left him at the airport this morning after we all had breakfast. He whimpered a little when we told him I wasn't going. I think it was more to try and get his way than to really be upset. He gave us a hug and kiss as we left. I didn't cry then. They called when they got there and said he slept all the way there. People on the plane were commenting on how well he did. He loves to fly, so we knew he would do okay with that. I was afraid that bed time will be the hard time, for both of us!! I did get sad when I got home and started to pick up and came across one of his many night nights.
I went shopping with Maw Maw and Jeanna and got my mind off it. I came home to see that Jim and Dugan had gotten all the lights on the house and in our tree and Jim had a fire started. I took a little night and soon Chris, Temperance, and Christian came over and we had pizza and watched football, dreaming we were in Hawaii. I have done fine so far, but it has been 12 hours!! I have things planned on some days to keep me busy and others I will just sleep until time to go to Mary's.
I will update you all everyday as soon as I talk to them. Today they called to say they got there and then Taylor went to sleep. He didn't want to eat or drink and of course I was a worried mess. They called back around 7:00 and he was up and had been playing in the playroom and eating like a pig. They had a an activity planned to make ginger bread houses, but I am not sure that they went. They had a singer come in to sing for them, but they say it sounded like a dying cat, so they didn't listen. Mary also said it was chilly, but not freezing so the walk to the store was not to horrible. I don't know if they have any plans tomorrow, but as I said I will update on Taylor's progress as I know it and I will keep you update on me and Jim's progress too.
Please pray that he does well and his pain is minimal, but there. Pray that his scans are still NED. Pray for Christi as she prepares to get her stem cells back. Pray this is the answer she needs to reach NED status.
November 28, 2003 Day +240
Happy shopping. Taylor and I were snoozing quite nicely in our warm, snuggly beds as all of you were out shopping. This is the first year in forever that I haven't been in the middle of it, but I was not up to it this year. I had trouble sleeping, so I was thankful that Taylor slept until after 9:00. He was in a great mood today. We just played here at the house all day until it was time to go get Guh. Guh spent the night since we had to be at the airport at 6:00AM.
Pop and Pippy came over for a while to play. Taylor of course was a show out for them. Guh went to bed earlier than we did and Taylor went with her. He stayed in there about an hour and he busted out. He came out of his room and went right to the potty. I think it was more a ploy to safely escape the bed, but it was smart either way. He talked us into staying up with us. I bought him a puzzle that had a car that drove on it a week ago and he found it last night. He said "pwease momma" and I caved!! He loved it though. He finally got in my bed and watched Crocodile Dundee and fell asleep around midnight.
Speaking of smart, on the way to Guh's house he told me how to get there. You go over 2 coo coo tracks and up the hill. That was a pretty good explanation and it was the truth. Jim put lights up on the banisters of the porch. We are going to put up more, but that was all he had time for and we wanted Taylor to see some of it up before he left.
Please pray for their safe arrival to NYC and back home again in 2 weeks. Pray that Taylor does well with treatment and that he is good for Mary and Guh. Pray for all his friends that are there battling this disease with him. Pray that Christi does well on Tuesday when she gets her stem cells back. www.christithomas.com
November 27, 2003 Day +239
Happy Thanksgiving!!! Taylor spent the night with Papa and Maw Maw last night, so we got a night out. We went to Logan's (how coincidental) to eat. We finally got the computer ready to record our home videos onto DVD, so we spent the night (literally until 3:00) watching old movies. We saw our wedding video and rehearsal dinner as well as a lot of the first year of Taylor's life. I had forgotten about so much of that stuff. I remember thinking how big he was, but now looking back he was so not big. We got up to the movies filmed in the days between his diagnosis and surgery. That was very emotional. I see how sick he was and I had kind of forgotten, but it is good to see how well he is now. What a good Thanksgiving gift to see your blessing unfold before your eyes.
Once I stumbled out of the bed at 8:45, I started to cook my green bean casserole. I also watched the Macy's Thanksgiving Day parade. It was even better to watch and know where they were and recognize the stuff in Times Square. We finally were ready to go get Taylor and he tried to take all of Maw Maw's grocery to Guh's house. I guess he wanted to be sure that Guh had food. We got to Guh's and he was so excited to play with Blake and Drew. He brought his new remote control car to show off. He ate nothing, but oh well.
Soon it was time to go to Maw Maw's to eat again. This time Taylor ate a good bit. We went to see Peg in the nursing home. Taylor ate her plate that we made for her. He likes to go to the nursing home and act a fool!! We got home around 8:00 and we were all exhausted. We went to bed fairly early and we all slept great since we ate so much Turkey.
Please count your blessings everyday, but especially today on this day of Thanksgiving. Please pray for all of our friends and Taylor as they continue to battle cancer.
November 26, 2003 Day +238
I thought I would update early today since I didn't update until late yesterday. Are you proud that I am even up at 8:00 in the morning. I am not!! I feel much better than I did on Monday, but sleep is hard to come by these days. I sleep fine if I ever get comfy and fall asleep, but that is the hard part!! Once I wake up for any reason it is all over. I didn't want to lay and try to toss this big belly all over to get comfy, so I just got up. We plan to venture to the grocery store today and that is all I know. I do not feel like going anywhere else, but I am sure Taylor will rope me into it somehow. We will be on the go tomorrow all day, so hopefully we will just relax today. We are going to attempt to put the lights up on the house tomorrow. That will be Jim's job as I tackle the green bean casserole I have to bring to lunch. I know that is not a hard thing to prepare, but I do not cook, so it is a major project for me:) I am in charge of rolls too, wow, the responsibilities that have been placed upon me!!
I hope you are all counting your blessings this Thanksgiving. I know we are. We have so much to be grateful for. I can honestly say that last year we were thankful for a lot, but I think the shock of our child having cancer was still to new to really understand all we had to be thankful for. This year, however, we can look back over the past 13 months and see just how blessed we are. We are so thankful for every staff member at Children's Hospital that has used their knowledge to heal Taylor and their love and friendship to get us through it all. We are thankful for the many family members, friends, internet buddies, etc. that have thought about us, prayed for us, sent money, food, toys and everything in between. There are no words that we could tell you that would express our gratitude. We are thankful for MSKCC in NYC and the expertise that they have for this disease and the fact that they take on these kids from all over to heal them. We are so thankful for all the families that we have met. We now have friends from all over the world that have touched our lives in ways that we could never explain. I only wish I could say we know these people because our kids share a common interest not illness. Most importantly, we are so thankful for all the blessings that God has bestowed upon us these last 13 months. We have been so fortunate at how well Taylor has responded to all his treatment. We are not out of the woods, I guess you never are, but we have been given a chance to live life again as a normal (whatever that is) family. We have been given the opportunity to add Logan to our family. I wont say there isn't fear of "what if" going through our heads about having another child. This child has the same chance of getting cancer as any other child on this Earth. We have to just go on like we never knew it could happen (yeah right!) and let him lead a normal life. I am sure his normal will be so different from any other kid. I will be cleaning cuts with betadine and putting gauze and tegaderms over them, but hey, at least I let him go out and fall down. Anyway, thank you for all your support. We appreciate you everyday, but especially now during this holiday season.
Please continue to pray for Taylor. Pray that Jim and I get through this 2 week separation with our sanity and that Mary and Guh come back with their sanity. Pray that we are able to let Logan live life without always thinking the worst. Pray he never does have to endure even half of what Taylor has. Pray for all our dear friends that are dealing with the holidays without their precious child or relapse or knowing the end is near.
November 25, 2003 Day +237
Winter just might be here to stay after all. It is down right cold. That is a comforting thought as we prepare for another trip up north. Actually I think it is a bit warmer in NY today than here, odd huh. Anyway, not a lot happening here. We just hung out today and played and watched TV. Taylor went to the potty a whole bunch all by himself and if he happened to wet his pull-up he changed it himself and threw the old one away. I was impressed. He did not poop in his pants at all today. Hooray!!! No, he did not poop at all anywhere, but still it isn't in his pants. I guess since he seemed to have a bit of an upset tummy yesterday he didn't need to go today. Ca Ca had to come home and give him his meds. He forgot to give them. He will start his 5th round of Accutane when he gets back from NYC. I can touch it as soon as I have Logan, so it should not be such a pain to give after this round. He takes it okay. This round he has been swallowing the pill or at least chewing it enough to pop it and get the meds out of it and spitting out the shell. Hopefully I didn't jinx it by telling you that:)
We took some old home movies and put them on a CD rather than the 8mm camcorder tape. Taylor enjoyed it. We did our Honeymoon video. Taylor liked watching Disney World and he thought it was pretty cool that mom and dad were there without him. He saw the video of us leaving the wedding in Jim's old Jeep. Now they both want a jeep!! Boys will be boys. All our non-married friends better look out. That stirred up old feelings of revenge seeing that jeep all "decorated" like it was. For those of you who didn't know us then or didn't see the jeep, lets just say it was bad!! We went home with the top down and at one point we had to stop and un-wrap the toilet paper from around Jim's head!! We traded that jeep in with the words "Just Married" etched in the bumper.
There is really not much more to tell. We did a lot of nothing, just enjoying each other before we are separated and then become a family of 4. Wow!!
Please keep praying for all of us as we continue our journey to healing for Taylor. Pray for all our cancer family too.
November 24, 2003 Day +236
Winter is finally here, not here to stay I am sure, but maybe we will at least have a little chill in the air as we eat our turkey and dressing. Taylor and I have just played today and slept a lot. Well, I slept a lot. I have never been so tired. I could barely keep my eyes open and Taylor was having no part in a nap, so he just played in his room. He finally slept about 20 minutes, but that was the end. Last night Taylor had an accident that ended up half way up his back and all over the inside of his shirt. It was very runny, so needless to say today we just wore pull ups rather than clean 10 pair of underwear and that was smart since I have changed about 4 poopy diapers. He is doing well with tting in the potty, but he has no desire to poop there. I am assuming it is Accutane causing all the problems. He started his 4th of 6 cycles last Monday. Anyway, I am not sure why I am so tired. I am very achy and just all around uncomfortable. I am sure it has to do with being 8 months pregnant, but Lord I will die if this baby comes early and my mom and Taylor are in NYC. As helpful as it might be to have him away when we bring Logan home that is just cruel to send him off and him come back to a strange little person in the house. I am not having contractions or anything like that, but I am surely going to have to take it easy and not do a lot of walking and cleaning and stuff because I do not want to go into labor.
As for Taylor's hunting club adventure, he loved it. He ran his gator into a mud hole and was fascinated by all the people and their 4 wheelers. He liked Papa's camper and wanted to sleep there. He pouted for about 30 minutes of the hour drive home all because he didn't want to go home. He finally fell asleep. He was grumpy as ever when he got home, but it was understandable since he played at 150% of his energy level all day. Once they got home we loaded up the back of the gator with Christmas lights and headed out to put them on the house, but it started to rain about 5 minutes into it, so we had to stop. We came in and bathed and then just sat around and played until bed time. Taylor did get up and get a book, but he must not have read it long because all was quiet in his room in about 10 minutes. He slept until about 9:00 this morning. He has eaten a fair amount today. He goes some days where all he does is eat then he will go a few days and wont eat anything. I guess that is just a 2 year old for ya. We have no plans for this week other than Thanksgiving day. I don't guess I will even venture out on Friday since I am almost done and do not need to be out and about for long. Guh, Mary and Taylor will fly out of here at 8:15 in the morning on Saturday. I am not looking forward to that, but we have to do it.
Not much more to tell you about today. Please keep on praying for Taylor and his healing. Pray that this separation and all the many trips for painful treatments is ridding his body of this monster forever. Pray that Logan arrives on the 16th, not before, and is healthy and never endures any of what Taylor has had to in this past year.
November 23, 2003 Day +235
Well, here is Sunday and I am all alone. The guys are off on an adventure. They are gone to the hunting club. This is Taylor's first ever time to go since he was to young to go 2 years ago and sick last year. There will be no hunting this time around. Taylor was sure to load up the gator and Papa's 4 wheeler is already there and he is going to run the batteries and gas out of both before he comes home. He was so excited and he didn't even know where he was going.
This morning we went to Wal-Mart and bought lights to put outside. Taylor again is excited about it and doesn't even know what it means to put lights outside. I am going to spend today doing laundry and picking up around here and hopefully it will stay that way so that I really do not have to clean anymore until he is gone. I hope that we can do something fun this week before I ship him off. I am getting a little more excited. I don't mean excited to send him away, but to have a break. I will get to go shopping alone without him under foot. I don't mind taking him, but after a year of not getting out of the house without him it is going to be a treat. I will also do may last 2 prenatal visits alone and not need to look for a sitter. I know that I will miss him terribly even though I am looking forward to a rest. I will need a rest since only 3 short days after he returns we will have Logan.
As for Taylor's speech it looks as though he is going to get 2 more sessions. He will not have it this week due to the holidays then 2 weeks in NYC. It is cancelled the week of the 17th due to things happening at the center that does his speech the next 2 weeks are Christmas Eve and New Years Eve. Then he will have Jan. 7 and 14th. He will turn 3 on the 19th and he is no longer eligible after 3 years of age. He can go to a public school setting, but it is all ages in one room and that will not help plus he has not had immunizations and I am not going to subject him to the possibility of getting who knows what from public school. He is already doing 100% better than he was and I think he was just not ready to talk and now he is.
Please continue to pray for Taylor and his healing. Have a happy Thanksgiving and be sure to count all of your blessings!!!
November 22, 2003 Day +234
Hello all! It is us again. We all went to dinner with Papa, Maw Maw, Uncle Dugan, and Jeanna last night and then Taylor went to spend the night with Papa and Maw Maw. Jim and I went back home to clean and do nothing. I knew when I wrote I was not going to clean until he left for NYC that I was lying. I couldn't do it.
We slept late and I slept even later than Jim, I think it was near 10:30 when I got up. We got ready and met Taylor at the Galleria. We were going to take him home with us, but he had other plans, so he went back with Papa and Jim and I did more Christmas shopping. Guess what?? Only 2 people remain on my list plus a few Dirty Santa gifts. I am sure I can knock that out with all the spare time I am about to have. Jim was ready to head home and get busy watching football, but I wanted to shop more. I happened to discover that Guh and Nana were out shopping, so Jim dropped me off at Deals and I spent the rest of the day with them and they brought me home. Taylor was excited when Nana came to see his room and he showed off Lo-Lo's room. Yes, he already has a nick name, Taylor calls him Lo-Lo. Cute, huh? He had not had a nap yet, so we ventured to Food World for a few items and as planned he fell asleep on the way. We brought him home and tucked him in his bed where he slept until 7:00. He got up only to play with Christian who had brought his mom and dad to watch the football game. Taylor and Christian were so cute in their Alabama and Auburn shirts. Taylor did not share as well tonight as he has in the past. He was snatching things and hiding them in his room which he shut the door to keep Christian out. We try to tell him that Logan will not go home like Christian does, so he better get used to sharing, but he doesn't get it.
Thankfully our team won the ballgame. 364 days until we have to worry about that again!! War Eagle....
Please continue to pray for Taylor and the others fighting NB and other cancers. Pray that all upcoming scans are NED status still and that they have a safe and uneventful trip to NYC. Pray that Jim and I are able to cope with him being gone, really me!! Pray Logan doesn't want to come out before they get back, that might push me over the edge.
Thank you Mary and Guh for going to NYC. Thank you Andy and boys for letting mom go away for so long. Thank you Allison for giving Taylor his shots and thank you Morgan for sharing your mommy with Taylor. We love you all and couldn't do this without you!!!
November 21, 2003 Day +233
Hello all! Well, we made it through another week. The weeks just fly by so fast. I am sure that the two weeks he is gone to NYC will not move quite so fast. I thought I would go ahead and update you all for today since we are just going shopping and nothing to exciting should happen. We again got a very late start. I woke up at 9:30 and Taylor slept until about 10:30. He woke up and went to the potty and then wanted to eat, so I guess he feels fine just catching up on sleep. He took a bath and played in the "rain". He got his teeth brushed, but was none to happy about it. He is dressed in his Go Go, Auburn jersey ready for tomorrows, oh so exciting game. We are going to go to Wal-mart and get some things for NYC. I want to do it while the weather is nice, next week doesn't look as nice as today.
I wanted to share a funny thing with you that Taylor did last night. Have you all seen those Biorre nose strips. It looks like a big piece of tape that you put on your nose. I used one last week and Taylor commented that I had a boo boo and he kept kissing my nose. That was funny enough. Well, last night he found a roll of silk tape or medical tape that is white like the strips. He asked Jim to give him a piece. Jim thought nothing of it since Taylor likes to put tape and band aids on his cars. He tore a piece off and gave it to him not looking to see what he did with it. Taylor is soon giggling and saying his all famous "watch me". Jim looks at him and immediately sends him to show me. My nut child had stuck t tape over the bridge of his nose like I had done with the strip. He was so funny walking around copying me.
Please continue to pray for us all as we prepare to go through 2 weeks separated. Pray that Mary's family adjusts well also. I will play Mary for 2 weeks and help the boys with homework and what not. I hope there is no math, Drew is in 5th grade, I am not sure I can remember that stuff!!! I want to thank Mary for agreeing to go and her family for letting her leave you for 2 weeks. Please pray that all scans are clean and clear. Pray for all our friends out there that battle with us.
November 20, 2003 Day +232
Another busy day. It was a busy day after a restless night. We put up the tree and Taylor had fun doing it. He has hung things all over my house and don't dare try to move it, so we have things hanging in places you wouldn't normally put them, but if it makes him happy so be it. We are having light troubles and of course you know they start after the tree is up and decorated. Who knows, all I know is I am not taking it down and starting over so we may or may not have lights this year!! Anyway, I fell asleep quick last night and slept like a log until 4:00 when Taylor woke up looking for his night night. That was all she wrote. I tossed and turned, under the covers over the covers until well after 6:00. Of course it is nights like those that allow the mind to wander to those places it has no business being. I got worried about sending him to NYC without me. Will he feel abandoned? Will he understand why I am not there? Will he do all he is supposed to do for Guh? The list goes on and on.... I think the 2 week break is going to be good for me especially since we will have 3 days before Logan is born once he gets back. I will have time to get things clean and rest up. However, how will I function without him. Our days have be me and Taylor for a year now. He has spent 3 nights away from home in the last month and that is it in a year. I am not sure how much fun it will be after a day or so.
Okay, enough of my complaining. Meredith called at 9:30. Thank goodness she did because we were still snoozin'. We got up and got moving then. I got ready and took him to Burger King so he could get a Cat in the Hat Happy meal. I then took him to Guh's where he stayed while I went to my Dr. visit. I had to run by Children's and pick up some prescriptions and get needles for those lovely shots. I visited with a few people and then headed to the doctor. It was a pleasant visit. I learned I gained 0 pounds in the past 2 weeks and my blood pressure was back to normal. It was high last week and that is what caused us to induce Taylor. I had been on bed rest for about a month and still had high BP. So, I was glad it was normal today. We are watching it to make sure it stays good, but I only have 3 weeks to go. Yahoo!! It seems like just yesterday I was sitting in stem cell updating that I was pregnant. Wow, time really does fly. Anyway, I had a 3rd 4D ultra sound. That too was pleasant. Mr. Logan is fully head down and ready to come out. I was told that he would not flip, but he did. Last week he did a huge flip flop of some sort and it felt like a circus going on in there, I guess we know what he was doing. I also felt like he was no longer breech since the kicks were more in the side. I didn't think he was head down, but he is and I am getting punched now rather than kicked. He was also turned so we could see his face. Finally!! The placenta blocked his mouth in all but one shot, but we did get a smile out of him. He looks like Taylor. He has his nose and it looks like he has the same chin, but that was hard to see due to that placenta wall in the way. We will not get another look since we did finally get a shot. It was pretty cool to see a picture that clear of an unborn baby. We got a good body shot as well. Jim will put some on here to show you all as well as the link to Taylor's Santa photos. I go back to the Dr. on Dec. 1st.
We are now home and just looking at the mess. I plan to let it sit until Taylor is gone and then I will have something to occupy me plus I want to play with him all I can. Hopefully, we will have great weather and we can go out and do some fun stuff this weekend.
Please pray that Taylor is still in remission and has clear scans in NYC. Pray they have a safe trip with no complications while there. I pray he has no fevers and if so it is not inpatient worthy. Pray that I do not lose my sanity while he is gone or when there are 2 kids in the house. Pray the delivery goes well for us all and that Logan is healthy and never endures anything like Taylor has. I will get a spinal block rather than an epidural. My epidural (all 3 of them) never took with Taylor and I was put to sleep. I am a little nervous to try the spinal for fear of it not working, but at the same time fear that it will work. I did not have a problem with being asleep and I am a little nervous to be awake during the c-section. Long story short, pray I do not flip out!!
November 19, 2003 Day +231
What a day!! It has flown by because we have been going non stop yet we haven't left the house. I got a wake up call around 8:45 from Jim telling me that Dr. Modak emailed us and Taylor is HAMA negative. That means he will go to NYC for round 4 of antibodies. Well, then I was all in a tizzy. I was so scared of him being there for Halloween and missing out on the fun here and now I am sitting him worrying about them scheduling during Christmas and Logan's due date and all that. Well, I immediately jumped up and got a shower and got on the phone calling people to line up a trip all the while waiting on Latisha to call with a schedule for us to come. Meanwhile, Taylor had speech. I didn't pay much attention since I was mentally packing bags and teaching mama and Mary how to give meds and use Emla and the whole nine yards. He did good though. He colored a Turkey and traced his hands and feet to make an angel. He played with the balls, Mrs. Potato head, veggies, and waffle blocks. He does not have waffle blocks and has never seen them to my knowledge and therefore played for quite a while with that toy. He started getting silly towards the end. He will not have speech the next three weeks due to Thanksgiving and NYC. The next week is when Logan arrives, so I am not sure if he will have it them or not since I have no idea where Taylor will be. He will only get speech sessions until he is 3, so he will not have many more sessions. He has really picked up so we will not be sending him to sessions at public school. I think he had it in him all along, but was slow at getting it out. Logan will probably talk 90 to nothing by 8 months. Lord help me, I hope he never learns "watch me".
Anyway, by the time speech was over Latisha had emailed and we are to be in NYC on Dec. 1 meaning we need to travel on the busiest travel day of the year. I immediately got on the phone to our social worker and Jim online to Delta. We waited about 2 hours on the social worker to call and finally just called Delta and lined up the travel plans ourselves. Taylor, Guh, and aunt Mary will head to the Big Apple on Nov. 29 and come home Dec. 13. Tickets were 900 dollars to travel on Sunday, so sorry guys, but you gotta stay in NYC 1 extra day! I have also emailed Dr. Modak again to schedule Taylor's scans during that time. I will let you know as soon as I know. I am not sure how I feel about all this. I must admit I am a tiny bit excited to get a 2 week break especially with Logan soon to arrive, but I am also scared to death. I am so scared of how lonely it will be for him to be gone 2 weeks. I think it would be one thing for him to go on a long vacation without us, but it will be hard to be here knowing what they are dealing with up there. I am assuming it will be quite painful since it has been 2 months almost since he had treatment but then again if he recalls his HAMA it will not hurt. I am scared he will freak out when he doesn't have Jim nor I there. He always cries for Ca Ca at some point while we are gone and this time he will not even have me. I miss Jim terribly when we are gone. Even if we have had a fight or he was bugging me before I left I will miss him, so I know it will be so hard to have Taylor gone. I don't know how Jim did it and he had to have both of us gone for 2 weeks. Guh has been before so maybe she will know the routine well enough to keep him calm.
So, we are all set on travel and what not. I have been busy writing a book of instructions on everything they need. I feel like a Granny doing that, but it is a lot to throw at a person that doesn't do it everyday and to throw a Narcotic induced hellion in on top of it all is just torture!! Jim doesn't know it yet, but we are putting up the tree tonight. I had all intentions of doing it Thanksgiving night, but since Taylor will be gone 2 weeks of December, I want him to enjoy it some what. As for the potty, again I say, UUGH!!!! He pooped again, thank the good Lord, it was a hard ball:) and he wet the floor. He could have cared less about the poop, but when he wet the floor he kept saying "sorry, love you". How can you be mad at that? Potty training is also a concern. I do not want to quit when he is really doing well, but how will he do in NYC. Yes, he could do it at RMH, but it is way to much to ask of any of them to try it at the Day Hospital or for him to try and go in a urinal, so we may lose a little ground there, but that is okay. I am just Thankful he will be here for Thanksgiving, Logan's birth, and Christmas.
Please pray that Taylor's upcoming scans are clean and clear. Pray that they have safe travel to and from NYC as well as a safe and uneventful stay in NYC. Pray that it is not to unbearable for me to be without him or vice versa. Pray that he does not give them to much trouble and that all goes well for them. Pray there are no delays in getting him back home. Pray that since he is starting with such great counts that there will be no need for any transfusions while there. Pray for all of Taylor's friends and the friends that have lost a loved one.
November 18, 2003 Day +230
It was a lazy day here in the Watts house. We were up fairly early, but didn't do anything, It was a gloomy day, but thank goodness the severe weather was a dud here. It got very windy for all of 5 minutes and that was it. It was just enough rain to be good sleeping weather. We have a skylight in the master bedroom and it is real good sleep weather when it is light rain and hits that. Taylor had to be put to bed again today for pooping in his pants. He has pottied great all day, but pooped twice. I have asked him 100 times if he needed to poop and made him sit a ridiculous amount of times, but no matter what he poops in his pants. I ask him where he is supposed to tt and he says the potty, but if you ask where you poop he says pants. UUUGH!!!!! It is so frustrating. We have no dirty clothes, I guess that is a plus I will never have piled up laundry again since I have to wash 10 times a day to keep undies clean. I put him to bed with no passy. I thought maybe that would kill 2 birds with one stone. He is punished for pooping in his pants yet maybe he will learn to live without the passy. He cried and then got out of bed to play legos. He always does this and then will climb in bed when he is ready. I guess I fell asleep because I never heard him come out of his room and go to the living room and get a passy. Sneaky little booger!!!
We went to Golden Rule with Chris, Temperance and Christian. Taylor loves to go places with "the baby" and his mommy. They came over for a while and Taylor would share real good for a minute and help Christian up and stuff and then get ticked and start snatching stuff. We tried to tell him that Logan will not go home like Christian does and he better get used to it. It should be fun once Logan is big enough to play, hopefully by then Taylor will be ready to share a little better. We made our rounds in Wal-Mart. Didn't need much, but you can never have to much Wal-mart.
We will find out tomorrow the results of the latest HAMA test. I'll let you know our plans when I know them. Please pray that Taylor remains cancer free forever. Pray that our friends that also are in remission stay that way and others can reach NED status soon.
November 17, 2003 Day +229
Well, we made it to Target and had pictures done. We were actually very early. I assumed that traffic would still be hectic, but it wasn't. The guy said he could take me early, but 2 people with earlier appointments came in and he had to do them first. It didn't matter though since Taylor was having a blast. There were 2 other boys there and they were both 3, so they all were the same age and played well. It was odd to see Taylor playing with other kids. At first he just stood back and watched and flinched when the little boy touched him. Soon the little boy was pushing a play grocery cart all over and saying how fast he was. Well, it didn't take Taylor but a second to see that that was a cool game. He found himself something to push and they were off. They raced each other, they ran in opposite directions and crashed each other. They were having so much fun. Taylor asked politely if he could use the grocery cart and the boy said no, Taylor just shrugged and continued the game with the toy he had. The little boy was an Auburn fan and was wearing orange and blue and they had a conversation about Auburn. We are sure it was about Auburn but the rest of it is a mystery to us all. It was so wonderful to see him interact with another kid and not shy away or back down and let himself be pushed around.
Soon enough it was his turn to have his pictures done. I was so nervous he was going to freak out on me, but he did great. He smiled in every picture. It may be crooked and it may have his tongue in between his teeth, but there were no goofy faces or tears. He was his normal little ham self and would pose himself before the guy had a chance. We looked at the proofs on the spot and ordered them. We will get them back on Dec. 5th. I can hardly wait, it has been a while since we had a frame worthy picture. We left there and headed to the Galleria. Again I was nervous as to how he would handle Santa. Last year was ugly. He was in the hospital with chemo dripping and screaming his head off, but we got the picture. This year he walked very slowly (there was no line, so no time to chicken out) up to Santa, sucking on his finger since I took his passy. He talked with Santa for a minute and Santa gave him a book then that sneaky Santa lifted him and snapped a photo. He is smiling a uncertain smile, but it is a smile and no tears. We are going to try and go back after Logan is born and do one of them together. We shall see how that turns out. We will also go back for a non Christmas, family photo after Logan is born.
We stopped at Don Don's for lunch and Taylor ate chicken nuggets. He spilt his tea all over the living room and as I was cleaning it up he pottied all over the place. Uugh!! This potty training was much easier when it was at work and I didn't have to do it 24/7. Oh well, he will get it.
Please continue to pray for Taylor and his healing. Pray for Jake, he is having pain again and that may mean disease progression. Pray for all our other cancer friends as well. www.caringbridge.org/nc/hopefor stop by and leave Jake a message.
November 16, 2003 Day +228
Happy Sunday! Taylor was up at 9:00. I was awake but not ready to get up, so I was laying in bed. I heard him come in, but I never saw him. After a few seconds I looked for him and he was laying in the floor on his tummy propped up on his hands. I don't know what he was doing, I guess just waiting on us to get up. I went ahead and got since I had plans to go shopping. He was laughing and pointing to Ca Ca's foot that was sticking out of the covers. Simple pleasures! Soon he was giving Jim his glasses. I guess that was his way of saying get up. I got ready to go and Taylor decided to hang out with Ca Ca. I left to a cup being thrown at the door for leaving. Oh well. I went to Guh's house and we went to eat and shop. We ended up meeting Jim and Taylor at the Galleria. I got more Christmas done. I think I have 4 more people to buy for, yahoo!!! Taylor rode the carousel 4 times. He was mad the first time because the frog he likes to ride was not there. They had changed out all the animals for reindeer. He didn't like that idea. He rode it again with Guh, who hated rides of any sort, and was ticked because he picked a stationary reindeer that didn't go up and down. He said "more again, please Guh" and that was all it took. Even though she hates the motions of it she went again and this time got a horse that moved. Guh had to leave to get to church, so Jim took him one more time to ride a sleigh this time and giver her a chance to slip out. She may have slipped out and avoided a scene at the moment, but he did notice and did ask where she was for a very long time after that. We headed home after yet another stop in the diaper changing station. He fell asleep in the car, but quickly popped up when we got home.
Tomorrow we will go (again) to get his Christmas pictures made and then we will go to the mall to get one made with Santa. That is the good thing about not working, we can get that simple stuff out of the way without dealing with the weekend crowd. He said today when he saw Santa he wanted to sit on his lap, but I am sure the truth will come out tomorrow. I am still worried about how well he will cooperate for pictures period. He always did so well and is a ham at home for us, but he has not had professional pictures since Easter of 2002 and we tried fall pictures at school about 2 weeks before he was diagnosed. He was still little then and had seen so many Dr's and stuff that I guess he was scared. Hopefully he will not be scared tomorrow. I have tried to talk to him about it and I guess if worse comes to worse I can use the Target angle and bribe him with buying toys!!
There have been 70 childhood cancer tags purchased so far. Still 930 to go, so keep passing the word!!! Continue to pray for Taylor and his complete healing. Pray that once we finish treatment we will never again walk this road, but help others who will walk it soon. Pray that the money from Lunch for Life and the tags will raise enough money to find a cure so that Taylor and his friends never take chemo and Accutane and the such again and that no other family will ever be told that their child has a 30% chance to beat a disease. I guess we may never prevent cancer, but we can cure it if we keep researching, look how far they have come!!!
November 15, 2003 Day +227
I know it is Sunday and I am just now updating, but we have been on the go as usual. Saturday Taylor chose not to sleep as late as normal. Turkey!! I cooked french toast only to find out he didn't want it, but french toast sticks. Taylor went to Tannehill trade days with Maw Maw and Papa. He rode the train, a horse, and jumped in the moonwalk. He was running full throttle all day and he wore out the grandparents. Jim and I went to return my quilt hooks to Babies R Us. The lady at the customer service desk had already started an exchange transaction and asked me to wait while the lady shopped so that she didn't have to mess up the register. I was like....um, heck no!! She had 2 bags worth of stuff to return and she was off shopping for an even exchange, I wasn't about to wait on that. So, she got all ticked off and started banging buttons and clearing out the register. Oh well!! We also hung all of the pictures and shelves and what not in Taylor and Logan's rooms as well as put all the boxes in the attic. I guess it could have waited since the tree will have to come down in a little over a week. I am so ready to get the tree up and decorate. I bought Logan's first Christmas ornament today and it will be ready to pick up tomorrow, I had his name put on it. Needless to say, he better be here on the 16th. Anyway, Taylor got home and said he wanted to eat, but he didn't. He was grumpy as could be due to no nap and was being very ugly. He took a bath and played in the rain better known as the shower. He loves it!!! Just because we had had no excitement for the day he felt the need to give us some. He pooped in the tub!! I just cleaned all his bath toys and Jim cleaned the tub and it had to be done all over again. Yuck!! He could have cared less, he was still not ready to get out. He did get out, kicking and screaming. He got over it soon and played in Logan's bed while we hung stuff in there. Once we were done we went to watch TV. He got ticked off about who knows what. Jim ended up putting him in his bed around 8:30 or so and he screamed about half a second and fell asleep. He was gone for the night. I used that time to finish laundry and read and Jim caught up on sports and the such.
Again, not an exciting update, but that is okay. Please continue to pray for Taylor and all his cancer friends and their families.
November 14, 2003 Day +226
BY Linda Nielsen
Cancer is such a scary
No matter how itís spoken.
Peace of mind taken for granted,
Can be crushed and forever broken.
But together we could fight this!
Itís an enemy from
Stinking oh so randomly,
Tomorrow it could be you,
For yesterday it was me.
So together we should fight this!
While science is
My heroes still are dying,
Some treatments just arenít working,
But still we keep on trying
And together we will fight this!
Research is the magic
Itís what we want to see,
Nothing less than a cancer cure,
Would mean so much to me.
For together we have fought this!
Iíll take support from
To really see this through,
So peace of mind for all of us
Can start off fresh and new.
And together we will win!!!
I do believe that the new total for the car tag is 60. We still need 940, so don't forget to pre-purchase your tag and remind your friends to do the same. Lunch for life is still going strong. No new total has been posted, but it is still growing from the latest post of 125,000 dollars.
Today has been rather boring I guess you could say. Taylor was up around 8:30, where is that sleepy head that was sleeping until 10:00 last week?? He had french toast sticks again. He loves those things. He is currently sleeping because he got in trouble and had to go to his room and in turn he fell asleep. He was told to go to the potty and try to poop and tt, but he instead went to his room. He came waddling down the hall with droopy drawers and I knew something had happened. I went to see where he did the deed and he pointed to the floor. It was dry as a bone, so I asked again. He just looked at me. I then noticed that his blanket was making a tent over his bed and when I moved it I saw why. His sheets were drenched. I was not mad that he wet his pants, but that he went to play when I told him to go potty because I knew he had to go. We changed the sheets and put on a pull-up and he sat in his room. I heard him get up and play and I told him to get in bed and shortly he was asleep. He has not pooped all day and I hope he is not holding it. He sat on the potty for about 30 minutes. We bring it downstairs with us so that he doesn't have to try and get upstairs. He was watching Rollie Pollie Ollie. He didn't do anything, but he had a ring around his butt. I think I will cry if I get him all potty trained and he regresses when Logan gets here. I really don't think he will. Out of all the kids I have had none of them did. Taylor is his own person though, so we shall see.
We do not have plans for the weekend. I am sure we will find something to do. I have a few things I need to return. I bought quilt clips at Babies R Us for $15 and then found them at Wal-mart for $2.50. I also thought of a few gifts for the people left on my Christmas list. We need to get the stuff back in the attic, no we have not done that yet. We also need to hang pictures in Logan and Taylor's room and downstairs. I guess this cold weekend will be a good time to do all of that.
Please pray for Taylor and his healing. Pray for that of all his NB and cancer friends. Pray for the families that are about to begin the holiday season without one of their precious loved ones. Pray for those that will be newly diagnosed in the coming days. 48 children are diagnosed with cancer everyday!!! Pray for little Gracie as she again battles her disease. Pray for Christi as she gets her stem cells back and pray it gives her NED status for the first time ever. If you have time go out and buy the December issue of Good Housekeeping. It has an article about Alex Scott who has been fighting NB for about 6 years or her whole life.
November 13, 2003 Day +225
Our day started out to early and rough. I got up and cooked Taylor some french toast sticks. I then went to wake him up which was not an easy task since he again decided that he would get out of bed and play until way to late. I wanted him to be done eating by the time I was ready so that I could dress him for his pictures and go. Well, Taylor had other plans. He went back to sleep while I took a shower, so with 15 minutes to spare we were pottying, cramming food in his mouth and dressing. Finally he was ready and we headed out the door. I stopped at the door and made a mental note that I had all we needed. I got to the car that was unlocked than God because what I thought was my keys hanging on my finger was really his passy. I could not crank the car or go back in the house. I had to call Jim and he had to drive home and let us in. I had already rescheduled the pictures by then. I was to ill by then to go deal with it. Plus when I called to tell them I may be late she said that she had no more appointments and it was a special day and it was swamped. They have a nativity scene and people are taking pictures in several costumes. I did not care to be there in the middle of that anyway, so we just rescheduled for Monday. Of course Taylor cried and cried when Jim had to go back to work. I know he doesn't understand why he came home for 5 minutes. He is now happy again and playing. He is mad at me because I put a door knob cover on the door to the stairs. He goes up and down 100 times getting things or just because he is mad. I am tired of jumping up and down to get him off the stairs, so I covered it so he couldn't open it. He has figured out that he can not get it open and he is pissed off. He doesn't need or want anything from upstairs he just wants to go up and down.
He pooped in his underwear 2 times yesterday. I did not enjoy that too much!!! I must say that is one aspect of teaching 2 and 3 year olds that I do not miss! It is easier to deal with when it is your own kid, but not much!! He didn't even get upset about it. I didn't get on to him since he has just begun this process, but I was none to happy about it. I was really none to happy about how I discovered the first accident. He wanted me to open a Little Debbie Christmas tree cake which he calls a house cake. Anyway, I had my legs crossed and he sat on my foot like a horse which drives me up the wall as it is. I said Taylor you are wet and told him to get up so we could go change his undoes. Well when he got up I could clearly see he was not wet, but rather poopie and it was all over my foot. I was thankful at that moment that I was a preschool teacher and that I had been pooped on and puked on many times because other wise I would have been so grossed out. We took care of the matter and discussed where to poop although I guess it went in one ear and out the other since he did it again later. Oh well, he is getting there. I do still have a month before Logan is here. Today he is wearing a pull up since we are in the basement and I locked him down here:) He woke up dry and used the potty before we TRIED to leave. He pottied again after we came back in and changed clothes, so he is doing pretty good.
I am in a cleaning mood so I better go and tackle this playroom before the mood leaves me. Please continue to pray for Taylor and his 100% cure of this monster in him. Pray for all our other friends as well. Please remember Gracie as she begins to fight again and Christi as she starts the 2nd step of her experimental treatment. www.caringbridge.org/al/gracie www.christithomas.com
November 12, 2003 Day +224
Another late update!! We had a late night and an early morning so when we finally got home after 3:00, we both crashed. Clinic was fine and I feel much better even though it is not scan time yet. Taylor fell asleep in the car last night on the way to the grocery store. After begging to go, he and Ca Ca got to sit in the car. He slept through us putting groceries in the car and Jim carrying him and a bunch of bags in the house. We put him in the bed and considered him out for the night. Wrong!! He woke up around 8:30 and that was that. At 2:15 I finally had to just give it to him and he finally went to sleep. His room was clean when he was put to bed at 10:30, but it is a disaster now after his 4 hour free for all play time. Thank goodness he is afraid of the dark and wont leave his room. I got a grumpy boy at 8:00 this morning. We got to clinic a little late, but it didn't matter. The lawn man was just starting to do the yard as we were loading up. He had to watch him ride his little sprayer contraption. He was loving it!! Taylor had to have his port flushed, so he was creamed and got accessed rather than going to the lab for a arm poke. He didn't cry at all and it has been 6 weeks since he has had his port accessed. We drew blood for HAMA and lab work. We also had to get urine. He is normally bagged and I just assumed he would be bagged today. Ms. Cynthia handed me a cup and I thought yeah right! We decided to give it a try since we have been going on the potty. We went to the potty a million times. I guess that is why it didn't seem like long before our lab work was back. He just was not going to go in that cup. He was sure to inform everyone that mommy did that in a cup:) Anyway, finally I got Christi and told her to bag him and lets get it over with. Well, he wanted no part of that bag. He decided then that he would go in the cup. He was standing up with me holding that little cup for him and he went. His cup runneth over!!! Christi and I had to make the swap and catch the rest in the bag she had gotten out. It was very entertaining to us all. Taylor was grinning from ear to ear and he got a tootsie pop from Cynthia for doing it without being bagged!!! We finally got a room and we read and did all kind of things while we waited. His pants were a little big and then having no diaper padding was not helping any. His toosh was hanging out and when Dr. Berkow commented on it, he calmly said "butt crack". I had to laugh, but was so embarrassed.
He checked out great! He was exactly 3 feet tall and was 28.8 pounds. That is a tad over 1 pound that he gained. He had 4, 590 White blood cells. Normal is 4,000-11,000. He had 230,000 platelets and normal for that is 150,000-400,000. We are in the lower normal ranger for both, yahoo!!!! We went to mail off his HAMA sample and we will find out next Wednesday rather he will go to NYC for 3F8 or just scans. We will do a CT here after he does scans in NYC. We will not do a bone scan since you normally do a MIBG as a follow up to any abnormalities on a bone scan. That would be like working backwards.
Please pray that Taylor remains in remission forever. Please pray for Gracie. She has PNET, a brain tumor. She has just finished her radiation a few weeks ago and had a MRI yesterday. It showed 2 new spots and she may need more chemo or another transplant. Please pray that she can beat this cancer and that her family finds that strength and peace to get through the next leg of the journey. www.caringbridge.org/al/gracie
November 11, 2003 Day +223
Once again I am late with an update. There is really nothing to update you on. Today was the same as the weekend. We all slept very late. We met Papa at McDonald's and ate and Taylor played on the play equipment there. It was very busy in there since school was out. Taylor stayed on the baby slide that was off to itself. He had that to himself. He steers clear of big kids, I guess since he was never around other kids much. Jim and I went to do more Christmas shopping. I am almost done. I have about 5 people left and I am all done. I am ready to get it wrapped and all, but that will have to wait until after Thanksgiving when the tree comes down from the attic as well as the Christmas paper. Can you believe it is already November. It seems like we just had Thanksgiving and Christmas the other day. What makes it stranger is that in April when we were sentenced to a life of quarantine due to stem cell transplant, I thought 3 months would never pass and here is over 6 months later.
Tomorrow we go to clinic. Please pray that all counts and weight are good. We will not schedule scans until next week when we find out HAMA results. He will go to NYC for MIBG and bone marrows no matter what, but he will get all his other scans here. I am so ready to get them done. I will never make it through the yearly visits. I can hardly go a month without wanting scans. Maybe I could ask Santa for a MIBG machine. Taylor has eaten like a horse, no fever, no diarrhea, played fine etc. But yet I can still find 100 reasons to worry. I really think it is all in our heads and we are just scared with the time between scans and treatment. I guess life will always be this way even with poor Logan. He will probably see the Dr. more than your average child. I have already told our Oncology team that I will have Logan's urine checked every 6 months. Urine has a chemical in it that measures the tumor cells and NB in the body. It is an easy test that could show signs of cancer. You better believe my kids will be experts at peeing in a cup!!
Speaking of peeing, Taylor has been gone all day today so he didn't use the potty. He is doing fare. He enjoys getting to put a sticker on the chart and he enjoys the hoopla that comes with it, but he is really not interested. He will periodically ask for a diaper. I have diapers, but I hid them so he can not get them. He has to wear the underwear. He has "noassatall" syndrome and therefore his little undies sag. He looks just about cute in them.
Well that is it for now. I will update tomorrow with lab results and such. Please pray that Taylor is in and will remain in remission. Pray that his HAMA results turn out to be what is best for him. Pray all scans are clear and clean of cancer. Pray for all our friends that fight cancer with us.
November 10, 2003 Day +222
Hello all! Today was a lazy day for Taylor and I. We slept until 9:30. I do not know why he has been sleeping so late, but I am not complaining. I guess sometimes I do worry that he isn't feeling well, but I am just chalking it up to the fact that he will not go to bed at night until very late. He has been using the potty today. He has 3 stickers on his chart. He is proud of them, but has had no interest in using the potty. He will use it then ask for a diaper. He had 2 accidents, but didn't seem to care. He had one in his room and came and got his vacuum to clean it up. The only reason I knew that he had an accident was because I went to see what he was cleaning. I do not think he realizes his is a toy. He only gets it out if I have out the big vacuum or if he makes a mess. I knew if he got it out he had done something, I just figured it was more like spilt Cheerios or something. We played with the magna doodle and read most of the day. He is really big into the Cat and The Hat right now. I guess just because it is the new thing it is all over the place. He pulled out all the Cat and the Hat books and we looked at them. A few were to long and he would leave, but he liked most of them. He finally took a nap around 3 and got up about 5:00. He woke up dry, but didn't want to potty and ended up with another accident. I think he gets the idea behind it, but is just stubborn at times. We went to Wal-mart with Guh. He got ticked off that he couldn't stay and play.
I know these updates are getting boring for you all, but isn't it great!!!
I talked with NYC today and he will go to NYC for scans in December even if he does not get 3F8. That will only be a 3 night stay at most. If he does get 3F8 he will get scans while he is there. Either way he will be home for the C-section. Logan will be born on December 16th. That date was fine for Jim, so we will have a new addition at home for Christmas. I will come home on the 19th or 20th. Hopefully, I will be feeling a little better by Christmas. I think it will be easier to get over this time since I know for sure it is not the end of the world and I am not going to die from pain:)
Please pray that Taylor remains in remission and he is able to finish the 3F8 and if not that that was the best way for him. Pray that he has gotten all he needs to fight off the cancer and never allow it to return.
November 9, 2003 Day +221
Latest total for lunch for life is $125,000.00
If you didn't read Friday be sure to go back, it is full of news you will want to know!!
Sunday was fairly uneventful. Taylor ended up wetting his underwear last night and it really really upset him, so today he had no desire to wear them. I should have let him be yesterday. He did not get a nap and it was after 10:00 by the time we got home so he was real tired. He was downstairs playing and he just forgot. He was so upset. He went to Papa's house today so we could go Christmas shopping. We were going to go to the Titanic thing at the McWane Center, but we decide to shop instead. I need to get it done so that I am all done and have free time in December. We are done with Taylor and it is all hidden away. I got a few more people crossed off the list as well. I scheduled an appointment on Thursday for Christmas pictures. We should get them back on December 2nd. I am so excited. Last year he was not able to get any done, so he has not had professional pictures since Easter of 2002 when he was only 15 months old. We will go back in January and get a family picture done. I wish I had one from last year, but there is no point in getting one done a month before Logan gets here. Besides, what woman in her right mind wants to be photographed at 8 months pregnant???
Taylor stayed with Maw Maw and Papa today. He got a bike. He likes it a lot, but he does not peddle you have to push him. I think he gets nervous when the training wheels wobble and he leans from side to side. They say he was a character today and I am sure he was. He is playing in the playroom now as I do this. Jim and I have cleaned up and put more things away for Logan. His dresser is done and upstairs. We have a few things to hang up. Taylor got some little clings for his walls. They are of cars and other transportation things. He was so excited to see them since I hung them while he was gone. He said "cool mama".
We have done so much yet there is still so much to do. I guess that is life!! I better run so I can finish picking up and bathe Taylor. Well, I will probably really just sit here and watch this movie, but who'll notice.
Please pray that Taylor remains in remission forever and never has to endure this monster again. Pray that his friends are able to beat there disease as well. Pray for the families that have lost loved ones to this disease.
November 8, 2003 Day +220
If you didn't read Friday's update, be sure to go back and read it. It is full of news like the babies name and c-section date!!
Today has been very lazy yet very productive at the same time. We all slept late as we had another late night. We finally got up and moving around 9:30. Taylor had his diaper changed and Jim asked him if he wanted to not wear a diaper. He said yes. We figured that he would be wet in no time, but that maybe that would let him know how this whole thing worked. I asked him 100 times if he needed to potty. He told me no and I finally made him sit on the potty. He sat and sat and did nothing. I let him up and we continued to tell him if he felt TT or poo poo coming to go to the potty not in his pants. After a while we got busy and forgot about it. I was in the babies room and I saw Taylor go running down the hall. I thought nothing of it. I soon heard the music that the potty makes after you potty. I thought No way!! I went in there and there he was pants down, grinning ear to ear. He had pottied in the potty!!! We made a huge deal out of it and clapped, yelled, danced, high fives etc!!! Well, after that he was on the potty every 5 minutes. However, he did go back and potty later and a little poop escaped. We made another huge ordeal out of it and was sure to reinforce the fact that if he felt more coming to sit on the potty. Well sure enough about 10 minutes later he went back to the potty and finished his poop in the potty. He was so happy!!! He did get upset a little. He dribbled on his undies while he was trying to get on the potty, he didn't even have an accident just a dribble. I went to get him more undies and he came running in saying "I'm sorry mama". He felt bad that he wet them. We made sure to explain that accidents happen and he is not in trouble. He felt better as soon as he saw all the new underwear in the drawer and he got to pick out a pair to put on.
He went with Papa for the afternoon to visit Peg (Jim's Grandmother) in the hospital. He put on a diaper for that excursion, but we are ready for tomorrow to see if our potty training luck continues. It would be so great to bring Logan (how do ya'll like that, a real name) home and him be the only one in diapers. Although it is also nice to go out shopping and not have to hold a lanky 3 year old over a public toilet while they dribble out that one little drip after they screamed they HAD to go.
After the Auburn game is over we will be heading out to Michael's, Wal-mart, and the grocery store. Taylor is getting a prize for his potty efforts today. As for the trip to Michael's, I am all artsy crafty right now, but it is soon becoming clear to me that I am one of the people that should have just paid the 30 bucks for the rubber made bucket that the talented person painted on. Jim and I painted cars, airplanes, helicopters and rockets on a laundry hamper and it became very clear that we are not artists or painters. We also finally put the first coat of stain on the dresser and again it is clear that we are not painters. It is a little streaky and different colors. Hopefully the second coat will help.
Please continue to pray for Taylor and that he is able to remain in full remission forever. Pray for Peg as she struggles through yet another hospital stay for a blood clot in her leg. Pray for Taylor's friends that battle cancer everyday.
November 7, 2003 Day +219
I know it has been 3 days in a row that I have delivered late updates, but we have been busy bees. Today we went to Christmas Village with Temperance. Taylor was very good, but bored. He was also sleepy. Seeing as it was well after midnight before he fell asleep and we left at 9:00 this morning. He ate Sonic french toast sticks for breakfast and wanted more. We found our way downtown and started our shopping spree. The spree ended in a few hours with us both only buying a $1.00 wooden car. Not bad huh? We found a ton of things we just loved, but it was so over priced and some of it we can do ourselves. For example 20 dollar rubber maid boxes with names on them. I think we can do those little projects ourselves. We went to lunch and then to Babies R us where we spent the money we didn't spend earlier!! I felt better to see that they did not even have pj's in a 0/3 size to match the ones I bought Taylor. See, I knew what I was doing all along!! We then ventured over to Hobby Lobby where we priced the things we would need to make all those idea we got earlier. I guess we probably never will, but you never know.
Okay on with the news. I hope you all will get this news since I am writing so late on a Friday afternoon. Last night we named "Bubba". I knew there would be so many personalized things I would want that I couldn't get if he had no name. So, drum roll please.... Bubba will be Logan Riley. No, it is not because it won the poll. It is my favorite, not so much Jim's, but that is what we agreed on. Our other news is that Dr. Damrich's scheduler called and since I was not home she set up my C-section and told me to call if It wouldn't work. She only had spots on Monday, 12/15 and Tuesday, 12/16. Dr. Damrich is off the 15th, so she made it for the 16th at 12:30. Jim does not have that day off, but hopefully it will not be a problem since she has no other slots open. We will discuss it this weekend and I will call her Monday, but it looks as though we will have Logan join us on December 16th.
Please pray that Taylor is still in full remission. It has been a month and a half since last scans and it is getting to the worry point. No, we have no reason to be worried it is just what we cancer parents do. You have to worry all the time. He is due for another round of scans in December. We go to clinic on November 12th. He will see the Dr. Berkow as well as have his HAMA blood drawn and his port flushed. He only has to have it flushed every 6 weeks and since he didn't go to NYC and use it we will have to flush it. I am actually glad. This way his clinic nurse will draw all his labs and HAMA blood. The lab is always a hassle to deal with about the HAMA since they do not understand it and our hospital can only order it by writing it on the sheet since we do not do this test here and it is not in the system. They do it, but it bothers them to do it and it usually happens after we call clinic to have them write it down or okay the fact that it has to be done. It is much easier to just have clinic do it. That was a very long winded, run on sentence, but you get the point.
Anyway, back to the prayer requests. Please pray that Taylor is still in and can forever remain in remission. Pray for all his NB friends as well as all his other cancer friends.
November 6, 2003 Day +218
Our little Taylor is growing up!! The past 3 nights he has gotten into his bed and watched a movie and has fallen asleep. Last night he was really big. He got out of the bed after about 10 minutes. I thought we were done with the big boy deal and he would be soon crawling into my bed. He went back to his room and played with his legos for about 20 minutes. I heard him call me, so I went in there to see what he wanted fully thinking he was coming back with me. I found him in his bed all covered up and waiting on me to put in a new movie. He picked Charlotte's Webb and he was soon asleep. Yahoo!!! As much as I love him I am sick of him in my bed and having to move him. It especially stinks when I fall asleep first and then have to stumble my already out of proportion, half asleep body to his room while carrying him, 3 dogs, a frog, 3 night nights, 1 mine and a cup. He also stayed dry for 12 hours!! Did he potty when he got up?? NO!!! He sat on the potty and just would not do it. He eventually got mad and threw himself in the floor. I don't know why he wouldn't go, I guess he is just not ready even though I am. I bought him some rubber pants and I think I am going to just put him in them and let him get wet and see how long it takes that way. We all know he hates to be dirty or sticky, so I think he might just figure it out a little faster if he is having to be messy!!
I said I would share some of the cancer stats and Children's Hospital stats for you all and I will. I know most of you do not want to hear it, but it really shows the importance of the car tag, lunch for life, etc. and having funds for research. Before 1950, children with cancer had a 10% chance of survival. By the mid 90's that chance went up to 75%. Those are encouraging numbers and shows that progress can, has, and will be made. However, Neuroblastoma has the lowest survival rate of all childhood cancers, it is around 30%. NB accounts for 7% of diagnosis and 15% of deaths. Cancer affects 15 out of every 100,000 kids age 15 and younger. Childhood cancer is the 6th most prevalent cancer.
Now on to some numbers on Children's. 95% of childhood cancer patients in Alabama are seen at Children's. The funds from the car tag will help all of these kids. They see 250 outpatient kids per week, 30 stem cell/bone marrow transplants per year. They have a wonderful staff made up of docs, nurse practitioners, pharmacists, social workers, RN's, psychologist, and data managers. All of these people help to gather info and what not to raise awareness and research for these diseases. All of the new info may never lower the diagnosis numbers, but it will raise the survival numbers. As those numbers rise the hopes of parents like Jim and I, goes up!!!
I went to the doctor today. I had another 4D ultra sound, but didn't see anything. The baby is facing my hips now, laying on its side, but it had both hands, cord, and a foot covering its face. We will try again on November 20th when I go back. All was fine with the baby. He weighs about 5 pounds right now. He had very long legs she said. Taylor does too, so I guess I will have 2 tall boys. Dr. Damrich turned in my chart to the scheduling department and we will get a call soon to schedule my C-section. I can schedule it as early as December 17th. I will take the earliest date and time available. I want to be home as long before Christmas as possible. Taylor got very quiet during the ultrasound today, when I looked to see what he was doing, he was in a sea of gum wrappers. I have no idea how many pieces he had eaten, but he was happy doing it. We had lunch with Guh at her work. Taylor loved seeing everyone and being the center of attention. He ate chick-fil-a and he did pretty good with it. He ate oatmeal for breakfast and pudding or white pud as he calls it. We are stuck on vanilla this month last month it was chocolate.
November 5, 2003 Day +217
I know you are all wondering what we are up to that has caused this update to be so late. We have been all over today and we are just now getting in. Taylor slept until 10:00 this morning. Of course he does it on a day I had to be up and ready. His speech teacher came by this morning. He was not near as cooperative today. He was wild and got bored quickly. He did remember that he wanted to play with the veggies first and he did after that he played with a mister potato head. He did well with that and he named the parts as he went. It was all down hill after that. I think it is time for a change in toys since he remembers them all. We had to cancel next week. We have clinic at 9:00 and there is no way we will make it back home by 11:00. Brandi said that was fine since he was doing so well.
After Brandi left we got in the car and headed off to do our running around. Half way to Wildwood and Taylor said he wanted to eat chicken with Ca Ca. It was only 12 and Jim doesn't eat lunch until 1:00, so we got Taylor a chicken nugget happy meal and he had most of it gone by the time we met Jim. He of course cried when we left, but he got over it fast since we were going to Wal-mart. We went to Babies R Us and bought a few things for Taylor and Bubba (his new name, it is better than #2!) Anyway, you can tell I am not used to having 2 kids. I bought Taylor some really cute Christmas pj's then headed to Wal-mart and there decided to get Bubba a pair. Why did I not get matching ones??? I did get one thing matching, I got some "I'm the big brother" and a "I'm the little brother" shirts. I can't wait to see them in them. We finally made it to Wal-mart and Taylor got a baby etcha sketch. He loves it, but can only make a straight line and it ticks him off. We finally got out of there and headed home in the rain. Guh came over and we went to the Cracker Barrel to eat. He and Guh have been neck nots or connecting the dots on the magna doodle.
Last night I went to my baby shower given by Xi Beta Xi. I got some nice things and Taylor loved going through it all when I got home. We put most of it away today and when the dresser gets ready we can clear out the floor. Thank you Xi Beta Xi for the shower and all the lovely gifts.
Please continue to pray for Taylor and that he is able to beat these disease in the first try and never have to battle it again. Pray that his friends that battle this and other cancers are able to win their battle as well.
November 4, 2003 Day +216
Our Tuesday was much better than Monday. We did the same stuff as yesterday, but we were both in a much better mood. Taylor played in the living room rather than dig through all I have drug out. I was also able to get the huge pile of to little clothes out of his room and into a box and that allowed me to rearrange his room a little and he stayed in there checking it all out. He has eaten all day. Of course it was Cheerios out of a medicine cup, but it is food. He also had some of a grilled cheese, some ham and some tater tots. Last night he ate all of a hamburger. He had not eaten a lot the past few days so we were glad to see him picking back up. Slowly but surely the house is coming back together as boxes are being emptied and re-filled as we weed through the things we need now and later. I am still stumbling across things I didn't remember or that I loved. I have been laughing at myself all day. The other day me and my mama had a conversation about how we can remember the dumbest things. I have been separating the clothes into piles by sizes and hanging them or putting them back in boxes. I would know what size something was just by remembering a day he wore it and how old he was, yet I have no idea what I wore yesterday.
Speaking of remembering crazy stuff. I know what I was doing this time last year, do you? I was at home, alone and sick. I had doctors orders to stay away from Taylor and his hospital room for 4 days. This is the time period that all his hair fell out. I came back to the hospital after my time away and he was bald. That made it all to real for me and I had a hard time dealing with it. Now to look at a picture of him with hair is funny.
Today we settled a place in Dr. Petelos' office (Taylor's pediatrician) for baby number 2. We tried to get a dentist appointment for Taylor and his funky teeth, but they say they can not see him until he is 3. I have a call in to Meredith to see if that is so since he has been being seen by these dentists for a year due to chemo. Odd that you have to be 3 to see a dentist, but no age limit to lethal chemotherapy. Oh well!! We also got the info in the mail for the camp SAM Christmas party. Taylor missed it last year because he was inpatient getting Chemo, so we are so excited to get to go this year. We also ordered his gold ribbon for the Childhood cancer tree in Children's Harbor and we will attend a tree lighting ceremony for that. We did get to see that last year since it was just across the street from the hospital. Taylor was on a round of Chemo that was not a 24 hour drip and that allowed him to escape from 4 tower and watch the lighting of the big tree. Taylor also had a ribbon on the tree in Washington DC last year. I guess they will have one again this year. I hope so. Also in our mailbox was a sheet that had statistics about Children's Oncology dept as well as childhood cancer in general. Tomorrow we will share the numbers with you and the importance of buying a childhood cancer car tag.
Please continue to pray for Taylor and all of his friends.
November 3, 2003 Day +215
Hi all! Sorry that I am just now updating at 10:00 at night, but it has been a long day. Taylor and I have not gotten along so great today. I have been so busy cleaning baby bottles, washing clothes and putting as much of the babies room together as I could. Meanwhile Taylor was pulling out everything, jumping in the piles of clothes that lined the hallway and being very whiney and defiant. He has not had a nap and neither have I, so we are both grumpy now. Tomorrows plan is to do the same thing, but hopefully it will be smoother tomorrow. At least tomorrow I will get a break at the end of the day. Maw Maw's sorority is giving me a baby shower, so I will get a night out and get to get some goodies. I am very excited!!
I have had fun going through all the stuff. I have found some of my favorite clothes that Taylor wore and others that I didn't even remember. I did remember how much I hated washing all those bottles the first time and I hates it just as much this time, but it is done and all put away. I got the bed all made and the closet organized with some clothes in it. I still have 2 or 3 loads of clothes to wash and go through. We have to stain the dresser, so all that stuff that will go in it is just sitting in the floor. Taylor has been in the baby toys and having more fun with them now than he did when he was little. He has not asked to use a bottle yet, I guess he will do that when he sees the baby do it.
Really not much to report today. Taylor and I just need a nap!! We did have a nice lunch sitting outside at Sonic and yet another trip to Wal-Mart. I will do my best to update earlier tomorrow, but if I don't it is just because we are busy or maybe sleeping!
Please keep Taylor and his friends in your prayers. Also remember our friend Christi. Christi also has NB and it was non-responsive to chemo and 3F8, so she is now starting MIBG therapy. She is the 3rd out of 3 children in the US doing this trial. Pray that it is the answer she needs to finally allow her to reach NED status. www.christithomas.com
November 2, 2003 Day +214
New pictures have been added, finally! Some pictures are from New York, some from Camp Sam, and some leading all the way up to Halloween. Click here to see the new pictures.
We would like to start today by saying a HUGE THANK YOU to all of you involved in getting Taylor (and us) tickets to Toy Story 2 on ice. We got there about an hour before the show started. We found our seats that were literally 2 feet off the ice. We could have touched the characters as they went by had we wanted to. After we found our seats Taylor and Jim went up to check out all the goodies on sale. You name it and they had it. He looked at swords, cups, dolls, everything, but in the end he picked ANOTHER spinny thing like he got at Disney World. He loves those things. He came back to his seat and ate his popcorn and looked at his program. Finally it was show time. Taylor was a little frightened at the beginning. It started out dark and had a few pops of fire and Zurg was kind of loud. After the lights came back up and he was able to see what was going on he loved it. It did get loud and dark again, but he didn't mind. He did have one problem, he was freezing. We finally bought him a t-shirt, but since it was way to big it ended up almost being long sleeved, so it warmed him up a little. There was an intermission and he sat through it with no complaints. He actually cleaned (literally) his popcorn bowl. He wanted more, but we were able to distract him. The second half was equally as fun as the first. The first half had an eighteen wheeler that crashed when the characters went across the street. It even lost its load of toothpaste. The second half had a great airport act that was full of silliness. Taylor loved it. He wasn't one of the kids that danced around and sang, he is to shy for that, but he did point and oooh and ahhh over things. The characters were great. I personally liked the pig the best, Taylor says he liked Buzz best. Slinky dog was cute, I can only imagine how hard it must have been to get 2 people skating as one to pull that off. It was a great show!!! We were very pleased with how well he did. He never complained or got restless.
We waited around a few minutes to let the crowd thin out. We finally made our way out and it didn't take to long until Taylor was sacked out. He slept thru quite a bit. We went to the furniture store where we bought the dresser for the babies room. It had a nail hanging out the side and the wood was all chipped up, so we exchanged it for another. It was no big deal, but Taylor managed to sleep thru them taking the old one out and reloading a new one right behind his seat. We then headed to dinner and he slept thru us waiting to be seated and dinner as well. He slept as we loaded him back in the car and all the way to Food world. He woke up when I got out. He probably would have gone back to sleep except for the fact that he loves to ride in the car buggies and he knows where to go to do it, so he had to get out and come inside.
We are now back home where he did eat some of his noodles we brought home for him and he is playing cars. He is getting to where he plays like he is parking them and they take turns driving and they even crash. He will throw in sound effects. If he comes across something with a Toy Story character on it he will bring it to me and tell me bout the day. We got lots of photos and will post them, eventually:) Be sure to go look at the new pictures that did get added last night!!!
We do not have much planned for this week. In fact all we have planned it to go to the Dr. for me on Thursday and probably go to the Christmas Village with Temperance and Christian one day. We need to be cleaning, but we will just see how far we get with that!!!
Please continue to keep Taylor in your prayers as well as all his friends.
November 1, 2003 Day +213
Finally an update!! Yesterday Christian and Temperance came over and we all went to lunch. Taylor shared really well with Christian except his horse balloon. We went in separate cars and Taylor was very concerned about where the baby and his mama was. He was relieved to see them when we all met back up. He wanted them to go with us the rest of the day, but since we were going to Ca Ca's work we couldn't take them. We went to trick or treat with all of daddies work friends. His Mike costume had a candy pouch and he got soooo much candy that he looked like he had huge hips the way it was loading down the suite. We had to bum a bag off someone to unload him a little. He still managed to load it up again. He never did fall asleep in the car, so we went trick or treating running on empty, but he did fine. We got home and Guh was already here. We played outside for a bit then headed in to light the pumpkin and get dressed and ready to head out. Papa and Maw Maw dropped by dressed as Tigger and a dalmation. Taylor went to a few houses in our neighborhood. He rode his gator, but that was a bad idea. He didn't want to get off to go to the doors. There wasn't much going on in this area, in fact we had a whopping "0" trick or treaters. We ended up leaving and going to Papa and Pippy's neighborhood and trick or treating there. There were a ton of kids there, so it was better. He took his bike then, but he again didn't want to get off. He did good after he realized how it worked. By about 8:00 we were done and we went to Papa's to look at the stash. He took ALL the smarties out of the bucket and fed them to Molly. He has eaten a ton of candy. That isn't like him, but hey it is calories and his teeth are already rotten! We finally talked him into going to get him some real food. He was to hyped up to eat before we went out. He ate some fries and then he fell fast asleep. He actually slept all night with out asking for mine, tea, or night night. He slept until 9:00.
As for Saturday, after we watched my new favorite, House Rules, we did our running around. We went to Taylor's 2nd favorite, the dump. We then took him to Guh's to hang out while we went to do our running around. We went back to get him about 4 hours later, but he was not ready to go. He played ball, raked leaves, rode his bike, and everything else you could think of. He finally gave in and left. He fell asleep in the car and slept until 8:30!!! He left to go stay with Papa and Maw Maw and we will get him early in the morning so we can go to Toy Story 2 on ice. He doesn't know what it is, but he is excited to see Buzz and he loves the commercials for it.
We will be sure to tell you all about Disney on Ice tomorrow. I am sure that is going to be fun. Hope you are all having a great weekend. Can you believe it is November 1st and it is 80 degrees. I tell ya, Alabama is crazy. Taylor had a sweat suite to go under his costume and we were scrounging to find something cooler to wear. Who'da thunk you would sweat on Halloween.
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October 31, 2003 Day +212
BOO!! Happy Halloween!! We are looking forward to going trick or treating tonight. Taylor had so much fun last night. He fell asleep finally around 2:00 yesterday. I started dressing him around 2:15. He stayed asleep until I got ready to pick him up and take him to the car. His costume was to big to wear in the car, so he just had on the feet to it at the time. He was groggy and whiney until he looked down and saw his feet and he started to laugh. He went back to sleep in the car, but the sun was too bright and he couldn't sleep. We got to the carnival and he turned into Mr. Shy. He wouldn't walk, he wanted to be carried and he just stood at the games and looked and didn't play. He did laugh when Papa threw the bean bags in the holes, and the basketball in the goal. He did go fishing and he liked that because he "caught" a motorcycle. He had tickets in his goody bag to get sweets, popcorn and hotdogs. Well, low and behold the sweet shop had rice crispy treats. We soon headed out to look at the big fire truck and then to the other building for more games. That building was a little more his speed. He loved the duck pond. He did that game several times. He was catching on to the fact that candy and toys came after you played!! He was loving the goodies!! He didn't want to do the ring toss, but he liked making everyone else do it. He and Papa did the cake walk, but didn't win a cake. He didn't care though since he got another goodie bag of candy. He then went to get his fortune told. Wow!! She said he would grow up to be a lawyer and take care of all of the family. He would get everything he wanted for Christmas and his team would win the SEC championships. Sounds good to me!! He got a horse balloon from Q T Pie the clown. He thought that was pretty cool. He also managed to collect about 10 other balloons. They were all decorated with pumpkins and witches. When we got home we let them go so that Janie, Austin, Jessica, Deanna and all our other friends that have gone to heaven, would have a Halloween balloon. Taylor, as usual, was a little leery of letting them go, but he didn't mind since we assured him that Austin and Janie were going to catch them and hand them out to their friends. He watched them go as far as he could but it was dark, so we didn't see much. They didn't have a lot of helium left, so I hope they are not in the driveway when we go out.
Once in the house he really liked dumping out all the bags and going thru all the goodies. He has eaten a ton of suckers. It has to be chocolate or root beer, yuck!! He tried several things, but didn't like them. Smarties got the ugliest face out of him. He fell asleep shortly after 9:00 and slept until 9:30 this morning. He was so tired, but he played hard and had so much fun. He did great with the costume also. He didn't complain about any of it. He wore the feet and the hat the entire time. I hope he will do as well tonight.
We all went out to dinner after the carnival and Pippy was at the same restaurant. Taylor had a good time going from Papa's table to Pippy's table. He had everyone drawing and looking for passies and everything else. He got a little grumpy towards the end of the meal, but that was to be expected.
Well, that was about all the excitement we had. We are ready to do it again. Jim has said he will put new pictures up this weekend. I will update again tomorrow with all the fun we have tonight. For today, we have no plans. We will be sure to take a nap, so we will not be grumpy. I have the batteries all charged in the camera and video camera, so be sure to check back this weekend to see it all.
October 30, 2003 Day +211
Hello, it's us again!! I am really writing just to tell you all that it will be tomorrow before you all know how much fun we are going to have tonight at the carnival. We will be home late, so I will just fill you in tomorrow. As for today's update, Taylor is having fun this morning. He is eating cheerios. He has quite a method going. He has a small strainer that he found in the kitchen (God knows I don't use anything in the kitchen) and he fills it up then "drinks" the cheerios out of it. He also has a chip clip that he got last night while trying to tie his night night around his neck like a cape. He is now using it to pick up one cheerio at a time and drop it in his mouth. He has been eating for an hour, I guess it takes a while to get full eating one cheerio at a time.
I didn't fill you all in yesterday about our head bumping experience from the night before. Meredith, Rhonda, and all of clinic 5 will be proud that we did not call them. Taylor was sitting in a chair in the den rocking back and forth and he rocked a little to hard and slammed his head into the stone poll. He screamed bloody murder. He had a nice knot on the back of his head with several little red dots. The bump is gone now and he is left with a red spot. He was fine after he got over the initial shock of it. I on the other hand worried over it all night. His platelets were high at last check, but you never know when they may drop and simple things will make you go batty after some of the things we have been thru.
Please pray that Taylor is able to continue to win his battle with NB. Pray that all our other NB friends can over come it as well. Morgan, Trey, Carter, Laura, Tyler, Jay, Kaitlyn, Hannah, Harrison, Austin, Christi and the list goes on. Pray for our Alabama friends fighting cancer as well. Ally, Levi, Todd, Tyler, Amber, Sophie, Sarah Anne and again the list is to long to keep going.
October 29, 2003 Day +210
Good afternoon!! Hope you all had a happy hump day. Taylor slept until about 8:45 this morning. He did not nap yesterday, so I guess he was extra sleepy. He had speech this morning. He did great. He managed to play with the same toy for about 15 minutes where as last time he went through her whole bag in the 30 minute session. We were proud to tell her that we had really worked on things he had not known last week. Unlike last week he was able to tell her square, triangle, and circle. He also picked up brown and pink in his color vocabulary. He played with pegs that you stick in a board. This helped him learn colors as well as the words in and out. He pushed them out from the back until it was empty all the while picking up on all the words. He then played with a shape sorter that did colors, shapes and since he was hitting them in with a hammer, he learned the difference between hitting it hard and soft. He also did a puzzle. He got a little bored with that since he didn't know all the animals on it. He was done as soon as he did the ones he knew. He played with balls the rest of the time and even cried when she had to leave. He wasn't done digging around in her box of toys. He got over it quickly and she was able to get out.
After she left we headed to Guh's house to have lunch and then to Rite Aid to get his medicine. We decided it would be easier to get it there rather than going all the way to Children's and having to go in the deck and all through the hospital just to get one script. Taylor fell asleep on the way home. I knew there was no way he was staying asleep if I tried to bring him in the house, so I drove the most out of the way I could imagine. In fact it took me an hour to get home, but at least he got an hour nap. As soon as I pulled in the garage he popped those eyes open and started talking 90 to nothing about riding his vroom vroom.
We stayed outside for about an hour. He rode the gator, the little bubble mower and the bike. He was cracking me up with the bubble mower. He tried to drive in the grass and between his weight and the thick grass it just couldn't go. He got off of it and tried to see why it wouldn't go. He found that in the grass in front of him was one long strand. He matter of factly pulled it out and tossed it to the side like he had solved a great mystery. Although he was a little ticked when it still did not go. Needless to say he did not ride it anymore. Looks like that one will be sitting and waiting on number 2 to be old enough to take it for a spin. He resorted to hitting a small soccer ball with a tennis racket, golf style. He then decided it was time to clean up and go around back to the swing set. There was a monster spider web on the slide so we didn't slide. He just played on the swing. He always is sure to tell you to go slow. Well, I grabbed him by the feet and pulled him up then let him go and he just cackled like he was on a roller coaster. After that we had to do it that way every time. No more slow for him. He finally agreed to go in. Bugs were swarming us and he doesn't need to be out to long being on the Accutane. He is now playing cars and ball and everything in between in the playroom.
Tomorrow is going to be a big day for him probably equally as big as Friday. We will dress up in costume and head to Maw Maw's work and join the fun at their little carnival. He has no idea what it is he just knows he will dress up and he has been ready to wear that Mike outfit for a month. Last year we were inpatient for the first time with neutropenia and he did not get to go out and trick or treat. He felt awful on Halloween and even though he did dress up as a football player, he slept most of the day away, only going on a few wagon rides around 4-tower. Papa did drop by in a big Tigger suite. It was very funny, so be sure to wave and not laugh if you see a Tigger driving down the road:) As for 4 Tower, we have candy for you again, we are just to lazy to bring it, so it will be a little late as you will have to wait until clinic day next week!!
Please continue to pray for Taylor and his complete healing as well as that of all his cancer friends. Please pray for all of those who have lost a loved one to this disease and remember those who do not know yet that they will soon be walking this path known as cancer.
October 28, 2003 Day +209
Our Tuesday has been just fine, hope yours has too. Taylor normally cries when he wakes up or will bring EVERYTHING that he sleeps with pillow and blanket included and climb into my bed and go back to sleep. Not today, today I heard him in his room playing legos. He did not come to me until he decided he was thirsty. He chose to have biscuits today rather than cheese toast. He did eat 3 biscuits. His lunch was not as good, but he did eat a little. Last night at dinner he ate 3 chicken nuggets and green beans. I can't wait to see what he weighs in November, he has really done some eating this past week or so. We did some laundry, cleaned the baby bed, and hung curtains in the babies room. He is still a little concerned about who will sleep in the bed. He keeps asking where he sleeps. I told him in the fire truck bed, he pointed to my belly and said baby sleep, so maybe he is getting it. He has gotten to where he will rub my belly at night until he falls asleep. The other night he was laying his head on my belly and rubbing it and the baby kicked, he jumped up and stared at me like I was crazy. He now always wants you to watch him lay down and kick since I told him the baby was kicking. After we did all that we went to drop off some stuff to our friend from Children's. Alexis. It was great to see you guys, you are looking great Alexis!!! Taylor rode his bike for a few minutes in the driveway. He also rode his bubble mower. He got it when he was barely one and never really understood how to work it. At Christmas when he learned to drive the gator, he learned to ride the bubble mower too. Its batteries died and the charger was packed up, so he just never rode it anymore. We found the charger this weekend and charged it up. I got it out for him this morning and he rode it, but he is so tall he looked goofy. He feet hang off the little pegs to rest them on and he can hardly steer because his knees are in the steering wheel. He had fun though.
Last night Jim carved our pumpkin. Taylor stuck his hand in but wouldn't pull out any gook. He does not like to be sticky or dirty, so that was not a project for him. He liked looking at it once it was done. He painted some small pumpkins the other night, that was more his speed. He has a water colors paint book that he loves, so we have done a lot of painting the last few days.
Medically Taylor is great. Obviously eating well and drinking like a fish. He is still on Accutane, he will finish up on Sunday. Only 3 more rounds to go!!! His face is pretty red and dry. I think he may be allergic to the shay butter. His face was worse last round and we kept him greased up all the time. This time we have just used baby oil in lotion form and it seems to be doing a good job of keeping him moisturized. I hate he can't use the shay butter, I liked the beach smell! He has a few bumps in his groin area and his privates are red. He always complains of it hurting while on Accutane, so I am guessing it must burn or irritate the skin when he urinates it out. He also has about 10 poopy diapers a day, but that is normal for us during the weeks of Accutane. After Sunday things should clear up. I hate the way he looks and peels during this, but the side effects could be so much worse.
Again there was not much to tell you. I would like to ask you all to sign the guestbook, it is very reassuring and comforting to see all the people that check in on Taylor. Please continue to pray for Taylor and all his friends.
October 27, 2003 Day +208
I want to start today by telling you all that over 90,000 dollars has been raised for Lunch for life. They are still accepting donations, so please keep passing the word. Very little money is given to childhood cancer and even less is designated to neuroblastoma. There is no cure for this disease and that is very bad news for children like Taylor and parents like Jim and I. Please donate to this cause in Taylor's honor so that someday we can say there IS a cure for neuroblastoma.
Also, I want to tell you that during the months of August, September, and October only 33 curing childhood cancer car tags have been purchased. We only have one year to get 1000 of these purchased for the tag to be printed next year. The 50 dollars will go the UAB/Children's hospital no matter if the tag is approved or not, so it is worth filling out the commitment to purchase tag even if you don't get the tag. So, again I ask you to please go fill out a commitment to purchase form where ever you get your car tags. This to will help find cures for childhood cancer.
Now that I have jumped down from soap box I will tell you about our day. We started out with a good old cheese toast breakfast and then we got ready to go. We went to Walmart, the bank, and to the post office. It was finally cool enough for Taylor to wear the yellow sweatshirt that Taylor picked out all by himself at Old Navy. He asks to wear it everyday, but it has been to hot. He was so excited to put it on, I know it will be an out and out war to get it off of him tonight. He is upset that he can not go outside to ride his vroom vroom. He does not understand that it is getting cold and he can not afford to get sick. He has done a lot of crying about it, but he will have to deal with it. We also went through the car wash. We were driving down the road and he just asked to go to the car wash. It was a simple pleasure that I could grant him and that my car was in desperate need of. He got upset again when then water washed off the soap bubbles. He wanted them to stay. I got the cheap wash that didn't include getting the car dried off. Well, that ticked him off as well. Not that he new that the car could have been dried, but he didn't like the fact that I used the windshield wipers to dry mine some, but that he had to have water drops on his window. uhggg!! He is easy to please, but easier to piss off!!!
Today was a pretty boring day, isn't it wonderful!!! I am very happy to say that I have had a normal, boring day. Please pray that we have many years to come filled with normal, boring days. Pray that Taylor's cancer friends are able to beat their disease as well.
October 26, 2003 Day +207
Hello all! Hope your Sunday was a great one. We had a nice one, especially that extra hour of sleep!! We cooked pancakes for breakfast, but Taylor wanted his old standby, cheese toast. We spent the morning cleaning out more of the garage. I now have my car parked inside, but Jim's side is still not fully cleaned out. We cleared out a lot today and could have finished it, but we got lazy and quit. I guess we have been without the garage for so long we are used to it, plus we got one car back in. I unpacked several boxes of blankets and sheets that go in the babies room. We still need to redo the closet in that room and then I will get all the tiny clothes out. I also need to pack up all of Taylor's to little stuff that is in his closet now. They go through clothes sooooo fast. I was excited going thru all the baby stuff. I was seeing stuff I forgot about. I still want a girl, but I am excited about getting to see another little boy in all the little outfits that were my favorites. I would put Taylor in an outfit until the buttons were popping off if it were one of my favorites. Taylor also found his old baby blankets and has been carrying them around all afternoon. I hope they do not get added to the collection of things we gather up to leave home.
This weekend marks the anniversary of the first time he came home after surgery and round 1 of chemo. That was a scary weekend. We had to change the broviac dressing ourselves and he would scream bloody murder. It was the first time we had to give shots and we didn't do it, we had Maw Maw come give them. He had a feeding tube in his nose, so we had to learn how to use a pump and we carried a pole around the house. That is how he got started sleeping in our bed. He never once tried to get out of his own room until the feeding tube!!! We were afraid he would get up and not realize he had a pole or tangle up in the wires hanging from it, so we just put him in our room. He had a blast playing and looked at all his toys like it had been more than a week and a half since he had seen them. However, it was only 3 nights and we were sitting in ER at 5AM with a fever and looking at our first neutropenic admission. What a difference a year makes!!
Not much more to tell. We have no plans this week until Thursday. We are going to a carnival at Maw Maw's work. He has no clue what Halloween is, but he is ready to dress up like Mike. I think he will have fun. Friday night we will probably trick or treat fairly early and then let him open our door to the kids that come by. He will enjoy that just as much.
Please continue to pray for Taylor and all his friends that also fight this battle. We ALL appreciate your thoughts and prayers and know that they are being answered!!
October 25, 2003 Day +206
Our Saturday was busy and not busy at the same time. We went to Pop's for a while this morning. We sold a few more things. We then headed out on a search for a dresser and new mattress for the baby. The dressers we liked were WAY to expensive, so we went to the unfinished wood store and found one we like, now we just have to wait for payday to get it. I didn't think a baby bed mattress would be so much, so we will have to wait for payday for that too. As soon as we get those items we can start putting that room together.
Taylor has been eating like a hog!!! We went to Ruby Tuesday's, his new favorite. He ate 3/4 a grilled cheese, half his fries, 2 chicken fingers, and chocolate tall cake. He ate equally as well today. I guess you should all buy stock in rice crispy. Milo's tea and Ruby Tuesday. Those are the things his diet consists of.
That was all we did today. It was busy going all day, but not busy since we didn't have to rush or spend money!! I went to the grocery store while the boys slept:) We are now just sitting around and Taylor is playing. We still did not finish the garage. I think we have hit a cleaning burn out stage. We may do it tomorrow if it isn't to cold or raining. Don't forget to change all your clocks and get that extra hour of sleep!!
Please keep Taylor and all his cancer friends in your prayers.
October 24, 2003 Day +205
Hello to you all on this beautiful Friday. Today we went to Pop's house to have the yard sale. We did pretty good. We still had people coming, but I knew I needed to get Taylor out of the sun and heat seeing as he is back on Accutane and he needed a nap. I drove around until he fell asleep and then stopped and got my pregnant self a chocolate milkshake. I came on home and of course he woke up. He is laying on the couch watching George Shrinks and I hope he will fall back asleep soon. He needs a good nap. He didn't get much of one the last couple of days.
He spent the day riding his bike and pulling his wagon that we tied to the back of the bike with a rope. He loved it. He kept jack knifing it and it would just crack him up. We ate our lunch at the picnic table and he thought that was cool. He dropped a fry and then buried it, I said he probably thought he had to to keep the pigeons from attacking since the only other picnic he has had was in NYC. He dug toys out of the yard sale stuff, but was good to put it back. He got a little upset when a little boy starting playing with and bought a few things and he was upset that a man bought a ceiling fan, but he got over it. The city garbage truck came by and stopped. Taylor wanted to go with them and stand on the back of the truck like the men were doing. No fear!!! He was not ready to go, but he was asleep in no time, so I know he needed it.
We will go back tomorrow for a little bit and we will also finish up the last of the basement. Last night we put several HEAVY!! boxes in the attic and took a few full of baby things down. We have a little more to go up and few to come down. I am sure I will have more yard sale stuff as soon as I go through those boxes, but they will have to wait until next years sale. We still need to clean up the playpen and swing and stuff and get it out of the garage and put a few tools and bikes out of the way and we will be done. YEAH!!! We will get to park inside!! Just in time for winter weather.
I talked to Children's today. Unless we have problems and need to go to the doctor, we will not have to go back until November 13th and then we will do a CBC, chemistries, draw the HAMA and see Dr. Berkow. Until then we have a few fun things to do, but no medical stuff, not for Taylor anyway.
Please continue to pray for Taylor's complete healing and that of the other children fighting this disease. Pray that baby number 2 is happy and healthy in there and turns over by Nov. 6th so we can get a look at the face.
October 23, 2003 Day +204
I guess I will start today by telling you how much fun Taylor had yesterday at Pop's. We got there at about 2:30 and stayed until 6:00 and he played non stop as hard as he could the entire time. He rode his bike, the golf cart, he picked tomatoes, he picked up leaves and hickory nuts, he swept the driveway, he blew bubbles. You name it, he did it. He was dirtier than he has been in a year!! He was sticky and had dirt stuck to him, food all over his face. He looked like a normal 2 year old!!! He left in Guh's car and was asleep before they got to the end of Pop's street. He slept through her going through the drive through at Sonic and carrying him to his bed. He slept for a little over an hour in his shoes and all that filth. We hated to wake him up, we think he would have slept all night. However, he had to have his accutane. It is a pill that we squeeze the stuff out and it is to thick to go through a syringe, so we had to wake him up to eat and take it. He also got a bath. Once he got the bath he was wide eyed and bushy tailed. It was after 11:00 before he went back to sleep.
We got up this morning and he ate cheese toast. This was a big thing for us because normally he just eats the cheese off of it, but today he ate all of it. Once we got ready and I finally wrestled him and all his things out the door, we left. Taylor has gotten harder to get out the door and it is partly due to the growing amount of "security" items we need. When he was very little he found night night, soon he had 2. At that time he used one at home and one on the go. Once he was sick he only wanted the original night night. Not long after we got night night we had to get a purple frog like Aj's. That was all we had for a long time. Well, now we are back to having both night nights and frog. He has a brown dog named Max that we go through spells with and take it all over. While cleaning the basement we found a black lab stuffed animal. He loves it since he is so big into Molly right now. If that were not enough he has now found a little blue frog that we have added to the list. We have to wait until he has gathered all of this before we can go. Once he has it all gathered up we have to take it from him so he can walk down the stairs. Anyway, I am not sure why I went off on all of that. I guess it was just funny and frustrating to us to go through such a long routine to get out the door.
Once we got it all together we headed towards Weatherly. That is the other child care center owned by the people I use to work for. We went for a visit with them as well as a few people that use to work with me that now work there. It was a nice visit and fun to see them all again. Taylor had a blast. He misses being in a setting like that. He played for about 10 minutes in the room by himself. We went outside and he played on the playground. He was a little intimidated by all the kids, but he jumped right in. The little girls were very motherly and helped him climb the stairs and would yell at everyone to get off the slide so he could slide down. He got a little upset when they tried to carry him and walk him all over, but he still had fun. The girls looked completely shocked when they learned that Taylor could walk, they were 4 and much "older" than Taylor:) We had to promise to let him come back and play another day. I know he would love to be back in daycare, but we are not ready to go there yet!!
We also had to go to the doctor for my prenatal visit and a 4D ultra sound. That is the one that is supposed to look like real pictures. Well, just as we predicted he was face down, so I have a nice "real" picture of his "boy parts" and back of his head. Today was the first day his legs were spread and there is NO doubting that it is a boy. We also learned that he is breech. He is not angled feet down, he is basically standing straight up, looking at my back. I thought he was because when he kicks it feels like his foot is going to come right out of me. Him being breech is not a concern for us since we know we are having a c-section. We learned that the baby weighs in at about 3 and a half pounds. It was neat to hear since my mom told me that I was born at 32 weeks and weighed 3lbs and 5oz. So, I guess he is right on track seeing as I am 31 weeks and 2 days. I got a flu shot today. Taylor's docs recommended Jim and I get one since Taylor can not have one. I am not sure why our other cancer friends have been allowed to get them, but we should be fine since we will have a new baby when winter hits and wont go anywhere for sure. I was told I will run a low grade fever and my arm will hurt tomorrow.
That was about it for our day. We came home and continued to organize and clean up. We are now almost done!!! By Saturday we should be all done. YEAH!!! Please pray that Taylor's maintains his health and remission!! Pray for all our cancer friends.
October 22, 2003 Day +203
Everything is okay in the end. If it is not okay, then it is not the end.
Well, Taylor is still positive for HAMA. We will send another sample of blood in 4 weeks and go from there. It looks like we will test again on the 18th of November. That will also be the first week of his 4th round of Accutane. So, we are guessing if he is negative this time we will go back on Nov. 30 and come home on Dec. 11. That works out nicely since the baby is due to be taken the week of the 13th and then we will be guaranteed him being here for Christmas.
The doctors somehow know based on the HAMA levels when the child will lose the HAMA, so I guess his HAMA levels grew since we are waiting 4 weeks this time rather than 2. Again, I guess I have mixed emotions. I am not upset to be sending him back to NYC with out me and I am not sad that he will not endure the painful treatment. However, at the same time it is hard to know he needs it to get better, but can't get it right not. Oh well, I still stand firm with the fact that God is doing what is best for Taylor and us. I was not as upset this time as I was 2 weeks ago. I guess the initial shock of it hit last time.
Last night we took all of our yard sale stuff to Pop's house. Taylor is so nosy he was having a blast just looking at Pop's stuff. We will go back today and help set it all up and price what didn't get priced. Taylor is looking forward to it, so he can ride the golf cart. Yesterday someone suggested that I donate the left overs to The City of Hope. It just so happens that when I asked Pop what he was going to do with what was left over (he said he would take care of it) he said to donate it to the City of Hope.
Today has been another day of cleaning. We are about done with it. It looks better than it did and we have weeded through closets and basement and all, but it is still a mess and there is more to go through. I guess I better go do that, so we will be all done and can sit back and relax.
Pray that Taylor is and will continue to win this battle. Pray that God is indeed looking out for Taylor's best interest with the HAMA. Pray for all our other friends that fight this and other cancers and illnesses.
I have not seen a total for lunch for life in a while, but the last count was well over 80,000. Please continue to spread the word and lets get the total higher!!!
October 21, 2003 Day +202
On this day last year we were dealing with our first round of Chemo. Taylor was beginning to feel better from surgery and he even ate something, a raspberry moon pie. Yuck, I guess if you haven't eaten in a weak you will eat anything. He was riding all over the place on 4 tower only stopping occasionally to vomit. He was not near as bothered by those little episodes as mom was. We have pictures on him around this time period and he was still fat and still had a head full of hair. Now he is so skinny. I often wonder what he would look like had he never gone through this. He is a very tall little boy, so he probably would be a skinny guy anyway, but who knows. It is funny how scary that first chemo was and after that it was just second nature to go in for chemo. You know the routine. We knew when he was going to get sick and what to do to stop it. He got used to it and would barely even slow down when he was sick. By the last 2 rounds he didn't even get sick.
Yesterday was yet another busy day. I got a good bit done in the garage and Jim and I did more once he got home. Taylor went to Wal-mart and out to lunch with Papa, that got him out of my hair to clean. We had to go out to eat and then bring him home with us because he refused to come home. He had a blast once home. I had unpacked toys that never got unpacked from the move and toys he had on the stem cell unit that I wanted to wash before he got them back and just never got around to it. He played good as gold for about 2 hours while we cleaned. He of course conked right out at 11:00 when we finally fell into the bed. He was up much earlier this morning than I cared to be up, but oh well.
We are having a yard sale at my Pop's house this weekend. We have lived 2 years of our lives with most of our stuff packed up and you forget you have it, so it is easy to get rid of when you run across it. We had a ton of clothes and pictures and stuff we no longer wanted, so we will just sale it. Pop had a ton of stuff to, so we decided to give it a go this Friday and Saturday and then give it to Hannah Home. If you need clothes or shoes come on by!!!
Please continue to pray that Taylor maintains his remission status forever!! Pray that his friends that battle this disease with him to beat their disease as well. Pray that Pop gets the healing he needs from his treatments. Pray for all the families that have lost a loved one, young or old, to this and other illnesses.
October 20, 2003 Day +201
Happy Monday! It is a nice day out, actually I am burning up. I have been cleaning out the basement. There isn't a lot I can do since I can't lift the boxes. I have gone through what I can and separating the garbage from the yard sale stuff from what we will keep. It has not been fun. It is amazing though what you will get rid of when you don't want to find a place to put it. I have seen more spiders than I care to see. I have been taking the broom all around the room with me, just in case!
We started Craputane...I mean Accutane this morning. This is his 3rd of 6 cycles. Accutane is an acne medicine, but it supposedly makes neuroblastoma cells turn into regular cells or die off rather than turn to an active cancer cell. How they decided that, I have no idea, but I am glad they did. He will take it twice a day until November 2nd. I am assuming he will go to NYC then if he is HAMA negative, but that is just my guess. There has been no mention of when we will return from the NYC NB team. So far Taylor's skin has done well with the Accutane. Last round he had a little pealing over his lips and his nose, but it was not bad and cleared up with just baby lotion. I hope he can continue to handle it that well.
October 19, 2003 Day +200
Today is another milestone for us. Today we reach day 200 post transplant. Day 100 was the day Taylor could quit wearing his mask and go places again. He was allowed back outside and we rejoined the outside world. Today is day 200 and though it is not an official milestone noted by doctors, we note it as special. We have hit the 100 mark twice and Taylor has done beautifully!!!
As for today, we did not accomplish any of what we set out to do. Jim did however, with the help of Uncle Bob, get the fans and electricity going. Stick a fork in it, the room is done!!!! It was an all day job for the guys, so Taylor and I went with Guh to our favorite place.... Wal-mart. Granted we did just go last night, but you never get all you need in one trip. I am sure I will discover something tonight that I need and didn't get. We got home just in time to see them finishing up. Taylor rode his gator and made plans with Pop to go to his house this week and ride the golf cart. We will get to the basement and babies room at night this week, I guess. It wont take to long if we just dive in and do it. For those of you who have not seen the basement, it is not a dive we are eager to make. It is a disaster down there. Maybe by the end of the week we can finally use the garage. Just in time for winter.
Well, that is about it for today. Nothing to exciting which is always a good thing. We do not have plans this week other than his speech therapy on Wednesday and my doctors appointment. Now that the scanner is here maybe I can get Jim to share the 4D photo with you all.
Please keep us in your prayers. Pray that Pop's medication will clear up the fungus in his lungs and he will feel 100% better. Pray for all of Taylor's cancer friends.
October 18, 2003 Day +199
Busy, Busy that is what we have been. I started taking the lighter toys and things down stairs yesterday. I tell ya, it didn't go as smoothly as planned. Taylor wanted to be in the opposite place as me and seeing as he is not allowed to go up and the stairs alone, I spent the majority of my time bringing him up and down. Once I finally got enough down there to entice him to stay we were okay. Then I started to see a trend. There was a bigger mess every time I came through the door. We came up stairs to get a drink at around 5:00 and wait for Jim to get home and help move the big stuff down. He went to the playroom to play. I do not know where he thought I was getting the toys I was bringing down, but he freaked out when he saw how much stuff was missing. I do not know that he is going to take to kindly to watching the baby bed and all that go up into the babies room AKA playroom to him. I think he will like the idea of having us and the toys all in one room, but it will take some getting used to. We have decided to keep the door at the bottom of the stairs. It may be a bit of a hassle to go through 2 doors to get the kids and groceries and such in, but we think it will be necessary. We plan to put a door knob cover on the door so that a certain someone doesn't get the idea that he can come and go as he pleases.
We went to Aunt Mary's and got a dresser that they are no longer using and we are going to put it in Taylor's room. We went to Guh's and just robbed her blind. We took er love seat, recliner and book shelf that she had in the basement. Now we have a finished den with furniture. We put the book shelf in the babies room and we brought the rocker from Taylor's room in there. Tomorrow we will bring up the bed and start going through clothes and what not. That will require cleaning out the basement and we are not looking forward to that. There are boxes down there that never got unpacked from when we moved a year ago. Anyway, we will cross that bridge tomorrow. After we got all the furniture in and settled we headed to Wings with Papa, Maw Maw, and Dugan to watch the Auburn game. Taylor was good as gold during lunch and ate great. He was a little confused as to why everyone was yelling and screaming and he gets in trouble if he yells in a restaurant. He did not test the waters though, he stayed quiet. Taylor had not had a nap, so me and him left the others there to watch the game and we headed home. He fell asleep in the car, but woke up as we pulled in the driveway. He went bonkers. He has a tendancy to only want Jim to take him out of the car, but since Jim wasn't with us we had a problem. I finally (after using all those little techniques I learned in school) just drug him out kicking and screaming and sat him down to gather all of his night nights and frogs etc. He took off running up the driveway yelling no at me. So I had to go get him and carry him like a sack of potatoes into the house. Little devil!!
After all the commotion he was fine and we started to finish cleaning out some junk in the old playroom. Guh got here shortly after we did and Pippy showed up after her. Taylor was having a blast showing them his new set up. Jim and I went out to eat and shopping since Guh was here. We were not gone to long and we all sat down stairs and enjoyed our first evening in our new room. It was nice. Jim should be very proud. Seeing as we had no money to build that room and we have been building bits and pieces since we moved in here. We want to thank Pop for painting, Papa for the stone work and helping with the framing, Chris for frame work, and Bob and Pop for the electricity.
We still have lots of cleaning and arranging to do to get things back on order, but that will come soon enough. I have to admit, I am exhausted after doing what little we have done, so it may be slow go, but it will get done. I have noticed that this pregnancy was easier in terms of knowing what to expect and not worry over every little thing and I have been so busy with Taylor that I often do not even think of it, so it has flown by, but I have not been as gung ho to get things arranged and ready for this one as I was with Taylor. I was ready for Taylor's room to be put together as soon as I knew he was a boy. Oh well, We wont let him be naked or go hungry, so I guess it can get done when it gets done.
Please continue to pray for Taylor and his complete healing of the cancer. Pray that his cold gets better and goes away soon. Pray for Morgan, who did get home on time, but has to sit around and can't play with a broken leg. Pray that Jake and Christi are seeing some disease shrinkage from their latest chemo tx. Pray for our friend Roberta who lost her Father this weekend.
Sadly we learned that yesterday morning, Justin lost his battle with NB. Please remember to keep his family in your prayers. www.caringbridge.org/ny/justinarmenio
October 17, 2003 Day +198
THIS IS A
GOOD WAY TO LOOK AT LIFE!
Accept that some days you're the pigeon,
and some days you're the statue.
Always keep your words soft and sweet,
just in case you have to eat them.
Always read stuff that will make you look
good if you die in the middle of it.
Drive carefully. It's not only cars that
can be recalled by their maker.
Eat a live toad in the morning and nothing
worse will happen to you for the rest of the day.
If you can't be kind, at least have the
decency to be vague.
If you lend someone $20, and never see
that person again, it was probably worth it.
It may be that your sole purpose in life
is simply to serve as a warning to others.
Never buy a car you can't push.
Never put both feet in your mouth at the
same time, because then you don't
have a leg to stand on.
Nobody cares if you can't dance well.
Just get up and dance.
The early worm gets eaten by the bird,
so sleep late.
When everything's coming your way,
you're in the wrong lane.
Birthdays are good for you; the more
you have, the longer you live.
Ever notice that the people who are late
are often much jollier than the people
who have to wait for them?
If ignorance is bliss, why aren't
more people happy?
You may be only one person in the world,
but you may also be the world to one person.
Some mistakes are too much fun
to only make once.
Don't cry because it's over;
smile because it happened.
We could learn a lot from crayons:
some are sharp, some are pretty, some
are dull, some have weird names, and
all are different colors but they all
have to learn to live in the same box.
A truly happy person is one who can
enjoy the scenery on a detour.
Happiness comes through doors you
didn't even know you left open.
Have an awesome day, and know that
someone has thought about you today....
Hello to you all on this rainy Friday. I tried to sleep late since it was so dark out, but Taylor had other plans. He was ready to play. He is full of energy today. His nose is still running, but not near as bad and his cough is only bad when he first wakes up. It is only 9:30 and tornado Taylor has destroyed the living room and he is still working at the rest of the house. His playroom is so awful that he has moved into my room. I haven't bothered to move any of it as we are moving all the toys this weekend and getting the crib and stuff out for the babies room. I have a ton of washing and stuff to do as everything is either stored in the basement or attic. I need to pack up Taylor's too little stuff and get out all the baby stuff. It sounds fun and boring all at the same time.
Last night Taylor was a crazy man. He was running like a mad man until he fell asleep. He rolled into the wall while singing a Wiggle song, he hit his head while climbing on the bed and the list goes on. He just cried a second then moved on. He did not eat well yesterday. I cooked dinner, but he wouldn't eat it. Finally around 9:00 I was begging him to eat and he decided on corn. He ate an entire can. I knew he was hungry, just to busy to sit still and eat.
I talked to Meredith and Dr. Berkow about his teeth. We will make an appointment to have them cleaned and he will probably require a lot of work. Chemo basically rots the teeth and he had a few spots that needed to be watched closely when we went for transplant. After that he couldn't brush his teeth for a while and now he hates toothpaste. His teeth are just plain nasty. He has a black spot on the back side of several teeth. He also chipped his front tooth last week when he fell and it may need to be filed down to keep from bothering his tongue. I do not know what all they will do, but I am sure we will make several trips to the dental clinic for work. I also asked about his immunizations. Dr. Berkow feels we should wait a year after treatment and to ask MSKCC as well, so I will put in a call to Dr. Modak and see what he suggests. We have no plans to put him back in day care any time soon, but he does get out and about more and is around more kids and people, so we wanted to check and see when that should be done.
Well, not much happening today. We are not going anywhere since it is so rainy. We will just hang out and do nothing. Since we are going to be rearranging things and making a mess this weekend I am not going to even try and clean up. Good excuse, huh? We hope you all a great weekend and your team wins the ball game. War Eagle!!
Please continue to pray for Taylor and all his cancer friends as they fight this battle. Pray that baby number 2 remains healthy and never has to endure what all Taylor has had to endure. Pray that my c-section and recovery goes smoothly. Pray that Morgan is able to come home today and that he leg heals quickly. Pray for a new friend Justin who is Taylor's age and is losing his battle with Neuroblastoma www.caringbridge.org/ny/justinarmenio
October 16, 2003 Day +197
Wednesday Oct 15th
Day 14 total for Lunch For Life $80,017!
I wanted to share with you Taylor's learning experience for yesterday. It was late afternoon and the sun was shining right into the windows in the living room. You could see the dust floating (it must have been a fluke, there is definitely no dust in this house, yeah right!!). He was so amazed at it. He was running through it and trying to catch it. I can vividly remember being at my Meme and Pop's house when I was little and seeing the dust float around in the den as I was waiting for breakfast to cook. I remember my Pop telling me it was dust and it was always there and that you only see it when the sun shines on it. I told Taylor that and he went on a search for more. That must be the boy in him because I don't remember ever looking for more.
Yesterday was the one year anniversary of Taylor's tumor removal surgery, the official beginning of treatment. That was a hard day. We had to be at the hospital very early. Everyone was there. I think about half the waiting room was there for Taylor and us. It was like a big party with all the food we had passing around. Although it was not a fun time, it was a nice gesture and we were so glad that so many people came to support us. We went into the day thinking that this surgery was to tell us what stage he had. We assumed since it had not been long since he presented symptoms that he was a lower stage and it would be easy to fix. Little did we know that they already knew the stage and was just removing the tumor and doing his first bone marrow biopsy and aspirate. The surgery didn't take as long as they had predicted. It was about 3 hours. Dr. Barnhart came out to tell us that he was able to remove all of the tumor and leave his kidney. We were so glad, that was a huge step to remove all of the tumor in one shot. We asked what stage it was and he was shocked, he thought we realized that it was a 4, the worst of the stages. We were shocked all over again. We had not really expected it to be that bad. He had 50% bone marrow involvement and uptake on his skull, spine, and femurs. Uptake is bone involvement. To look at the scans is amazing. You can see the uptake disappear in small amounts until it is gone. He spent that night in the special care unit. You can not stay in the room with them all the time there. We took turns in there and one of us would sleep in the floor of the waiting room. Finally at 4:00 AM I called my mom and was like you gotta come up here and let us go sleep. We were back at the hospital by 11:00AM. I got to hold him that afternoon. It was so awful. He had tubes in his nose, that broviac had just been placed, he had a huge incision on his tummy from the tumor removal. He had all the sensors on him and wires coming off of him that beeped if you moved him wrong. He didn't let me hold him but a minute and wanted to lay back down. Later that night we moved up to 4 tower where we stayed for 2 weeks. He took a week to recover from surgery and then started his chemo. By about the 3rd day you would have never known he was sick. He was running full speed and giving 4 tower their first glimpse of what Taylor was all about.
There is nothing going on around here today. We are cleaning and doing laundry. Well, I am cleaning and Taylor is dragging out. He is already on about his 4th rice crispy treat. That is all he will have. I guess we will deal with it because if I take those he just doesn't eat. He was 27.7 pounds yesterday. He is just kind of hanging out at the 27 pound area. He will not go up but he doesn't go down either.
Please continue to pray for Taylor and all his cancer friends. Pray that Morgan's brace comes and she can go home to North Carolina as scheduled. Pray That Jake is handling chemo well and it is kicking NB butt!!!
Just a little FYI for you all. I am sure you have all noticed that the name poll will not let some people vote. It has something on it that only allows you to vote once. However, it doesn't recognize that people in the same company are different people. So, once one person at Amsouth or Blue cross etc. voted it will not let anyone else from that company vote. You can leave us a message on the name poll page and leave your vote that way. We are having so much fun seeing which name is in the lead. We are not going to tell you our favorites until later. We don't want to persuade any votes!!
October 15, 2003 Day +196
He's My Son
by Mark Schultz
I'm down on my knees again tonight
I'm hoe'n this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone,
he's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
And he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son
Hi again, how are you all? We are good. Taylor isn't coughing near as much, but that nose is still running rampant. I have a touch of a sore throat myself this morning. I certainly hope I do not get anything. I stayed sick when I was pregnant with Taylor and it was miserable since I couldn't take much of anything. I am getting to the part of this pregnancy where I can not get comfy. I got a new pillow last night and it helped a little, but I really want to lay on my tummy and it just doesn't work. Only a little over 10 weeks to go!! That seems so short yet soooo long! Okay back to Taylor. He is playing just fine this morning. He took a great nap yesterday and woke up in a better mood. He watched Charlotte's Web in his room and played legos, but when it was time for bed he climbed right in my bed. He was gone in a few minutes and I moved him to his bed. He woke up at about 5:45 and came back to my bed. He usually doesn't come back, but today he did and it just figures it would be today that he has a problem. His diaper fell off. I am not sure why or how, but my bed was soaked and his diaper was bunched up at the knees of his pj pants. It was great!
Brandi came today for his 30 minute speech session. He had fun, but he got bored fast and would just walk away or start going through her stuff to find something new to play. He did well though. She would move her stuff and tell him to clean up and he would. (hmm.. that doesn't work for me) She would give him a choice of 2 toys and he could pick which to play first. Once he picked they would play. He picked a shape sorter first. This was a good test of his color and shape knowledge. She would hold up 2 and ask him if he wanted the blue or red or the triangle or circle. He knew all the colors, but only star, circle, triangle. He knows more if you just ask him to point, but he can't recall it on his own. She said that was fine at his age. He is her only child that knows how to match the colors. They worked a picture puzzle and he knew most of what was on it. Race track threw him off and he refused to say baby (wonder why?). The thirty minutes flew by and he had fun. I thought he would be shy or silly, but he wasn't. He did have to go get her a hat from the play room when he saw a picture of a hat in a book and then he brought her a banana. That was okay though because he ended up eating it. I thought he was going to cry when she left, but he didn't. He has already asked me when she was going to bring her big box back, so I think it will be good for him. He needs to play with someone other than Jim and I sometimes.
We went to clinic at 1:00. We had labs drawn for a CBC and had a tube drawn to send to NYC. We will know in a week if Taylor is positive or negative for HAMA. We were not in the waiting room long, but we sat in his exam room for about an hour and a half before we saw a fellow, we didn't even get the doctor. I know it was because Taylor was just being seen for a runny nose and he was not in an great need for his doctor, but it was frustrating as I had several questions. Oh well! Taylor's counts were normal and his platelets were 197,000. The normal range starts at 150,000, so we are on the low end of normal, but to be in the normal range is great. His lungs are clear and all the gunk is in his head. The fellow said to just let it run its course, that no OTC drug was going to do anything to it. I hope time is all it needs. I has played well all day and even ate fairly well, so I guess he will be fine. She said as long as there was no fever and vomiting he was okay and to call if those two things occur. You can tell she doesn't know me very well:)
We got to see Sarah Anne and her mom and sister today. We never bump into each other at clinic. Taylor and the girls just kind of looked at each other, but they did pose for some pictures. It was nice to see you guys!!! We also ran into miss Carol that lives in Pippy, Papa, and Maw Maw's neighborhood. Her grandson was admitted today with bronchitis. Please keep him and the family in your prayers. We know how scary and uncomfortable it can be to have to stay at the hospital. To bad he couldn't go to 4 tower.
We went to mail off his blood samples and now we are home. Taylor fell asleep just as we were getting off the interstate at the hospital and again just as we were getting off to go mail the blood, so I have woke him up twice. He is very grumpy. He is laying in the floor, so maybe he will fall asleep. It is really to late for a nap, but he needs it.
Please pray that his cold will clear on its own and we do not make anymore trips to the doctor because of it. Please pray that we can continue to beat this disease. Pray that all our cancer friends can win their battles too. Pray for all those families who have lost a loved one to this and other diseases. Pray that Morgan gets clean results from her latest tests and that she is able to leave the hospital and head home soon.
October 14, 2003 Day +195
As of Tuesday, Oct 14th, the
Lunch for Life total is $73,632!!
As of Sunday, Oct 12th, the Lunch for Life total so far is $67,143.00!
Hello all! We are having a do nothing day. Taylor woke up with a nasty cough to go along with his already nasty nose. I called clinic and went ahead and got an appointment with Dr. Berkow for tomorrow. I don't think it is anything to worry about, he has no fever and is playing fine, but I would rather have it checked out to be safe. Meredith said we could give him Dimetapp until we see him, He isn't eating great, but he did have cheese. He ate all the rice crispy treats in the house and the box we bought at Sam's is still in the car. I refuse to bring them in because that is all he eats. I want him to eat something else today before we go back to all rice crispy treats.
Last night Taylor took his gator over to Papa's. He was equally as funny riding the gator off the trailer. After we dropped off all of the yard stuff, we all went to eat. We left the gator in the trailer. Taylor was worried about it. He cracked us up during dinner. He kept taking Maw Maw's hand and rubbing his face with it. We could not figure out what he wanted her to do. Finally, he stuck her finger in his ear. We asked him if it itched or hurt and he said no. He then pointed to a quarter and we realized he wanted her to pull a quarter out of his ear. Uncle Dugan had pretended to do that earlier. When she grabbed the quarter from the table he immediately took it and pointed to the ear. He really thought it came from his ear. We were scrounging for money he couldn't see us get to pull form his ear.
Yesterday Jim hung up Taylor's wall mount for his TV. We got it for Christmas and was going to put it in the playroom so he would have more floor space. Once we decided to build the room we were going to put it down there, but we decided to put it in his room. He thinks it is cool that he can watch Blue in the bed. However, it was not cool enough to make he sleep there. We did the usual and let him fall asleep with us and move him. He wanted to watch his movies in my room, but we put his DVD player in his room as well. Maybe it wont take him long to realize that it is all in his room now and he will stay in there.
Taylor definitely does not feel well. He is as grumpy as they come. He will be playing and all of a sudden just throw everything and start to cry. He had me make him a pallet in the floor and he will go lay down every now and then. He ate about 1/3 of a bowl of noodles. He has had 3 glasses of tea, so at least he is drinking. He still has no fever and his nose seems to be running less and the cough has actually gotten better since he woke up and got moving around. I still would rather have the doctor check him out. He is doing to great to let a cold get him down. We have to go have lab work anyway, so we might as well be seen. I am very excited to know what his platelet count is. It was 130,000 on 9/30. I just know they will have sky rocketed into normal after 2 weeks!!
Please pray that Taylor still
has great counts and that he can fight whatever this cold is. Pray he continues
to win the battle against cancer. Pray for Morgan as she recovers from her fall.
It was originally thought that her leg broke so easily as a result of
neuroblastoma in her leg. The preliminary results say that is not the case, but
they are still waiting for the full results. Pray that it is indeed not the
case. Also pray that the 3F8 she continues to get even though she just had
surgery on her leg, doesn't hurt her to bad. Pray for Jake who started yet another round of chemo yesterday. His last
round took him several weeks to recover from. Pray his body can handle this and
rebound from it and that it gets rid of the cancer.
October 13, 2003 Day +194
Don't forget to take a vote on the name poll!!
I hope those of you that were off today had a nice break, we did. Those of you who worked, we thought about you. We slept late again and took our time getting ready. We headed out for a day on the town. We started with a trip to the dump. Sounds fascinating, doesn't it. Taylor loves it! After that journey we brought our trailer home and then got an oil change. My car was making an awful noise that we thought was the fan belt, but it was just low on oil. Thank goodness the oil change fixed it. One less worry. We headed off to eat at Bert's on the Bluff. Taylor was non to impressed with the veggie lunch he had. He didn't eat but about 4 bites. Oh well, what do ya do? We went to Babies R Us and got a baby book for baby number 2. I can go ahead and get some stuff put in it and have a head start on it. We found a few things for Christmas that we have hidden away. We went to Sam's and got the biggest box of rice crispy treats we could find. It seems as though we are constantly going to buy them. We made homemade ones last night. ( I made them, Taylor had no interest.) Taylor didn't like them. He threw the homemade one down and got one out of the pantry. Oh well, I tried. We went to buy the car tag for my car and a tag for the trailer. We did not know that you had to bring the trailer with you to be inspected, so we still don't have a tag for that. Taylor fell asleep in the car so we went as far out of the way to get home as possible. He woke up just as we were getting off the interstate. He rode his gator and swung for a while.
We are going to bring back a lot of stuff that we borrowed from Papa. Jim has the trailer hooked up and told Taylor he could drive his gator on it and take it with us to bring all the stuff back. He popped the gator in the faster gear and stepped on it. He hit the trailer ramp at full speed and laughing all the way. He is all boy with no fear!!!!
That is about it for the day. Wednesday we will have a speech session with Brandi and then go to clinic to have a CBC and another HAMA draw to send to NYC. We will find out the following Wednesday if he is still positive or if he lost the HAMA. If he has lost it we will discuss when to return for round 4 of 3F8. Please be sure to read the prayer requests below as we have added some friends to it that need your words of support right now.
Please remember Taylor in your prayers. Pray that he continues to win his fight against NB. Pray that his runny nose is just allergies and not anything serious. His counts are great, so pray that he can fight it off on his own. Please pray for our friend Jake. Jake has been having a lot of pain and his disease has progressed. You can drop by and visit Jake at www.caringbridge.org/nc/hopefor Also, remember our friend Morgan. Morgan fell and broker her femur bone. She had surgery Saturday and is recovering at MSKCC in NYC. You can drop by and offer her some words of encouragement at www.caringbridge.org/nc/morganbarnes
October 12, 2003 Day +193
Today we all slept late and took our time getting ready for the day. We headed to the Galleria to ride the "round and round" or carrousel. We ate at Ruby Tuesday since we were there. Taylor ate a good lunch, but when the chocolate tall cake came out, he took over. He was covered in chocolate, but he was sure to put on a few pounds! He was very enthused with the way our tea glasses stuck to the little paper coaster they give you. He laughed to the point of drawing attention. Our waiter ended up giving Taylor a whole un opened pack of coasters. Just what I need is a million paper coasters all over the house! Taylor rode the carrousel and spent 50 cents on a tennis ball. The oddest things excite him.
He is now riding his bike and bowling and I am about to clean the upstairs while he is away. Please take a minute to take the name poll that Jim put up. People keep asking if baby #2 has a name. No, he doesn't and we are having a hard time deciding. You all can help us by clicking the link at the top of the page and voting. There is a spot for comments as well.
Remember that the lunch for life was extended!!!
October 11, 2003 Day +192
Happy Saturday. Today Taylor, Guh, Aunt Mary and I went to Wal-mart and the new Kohl's. Taylor fell asleep in the car so we drove around for a while to let him get a nap. He played at with Drew and Blake today and had a blast being with other kids at their house. He was destroying the play room, but loving every minute of it. He also talked her into popping some popcorn. He managed to talk Guh into a car from Wal-mart plus a giant sized rice crispy treat. He spent several minutes or hours so it seemed, in the toy section.
Last night Papa and Maw Maw came home from their vacation. We met them for dinner. Taylor wanted to go home with them, so he did. He also ate like a champ. He ate almost all of his fries minus the ends that he breaks off. Today at lunch he ate chicken fingers again and ate all 3 of them crust and all. We normally have to peal them, he is not normal!! He has done well with eating this weekend. He has a runny nose and I am beginning to think he is allergic to the dogs. That is not good since he wants Molly to come live with him so bad. His nose is all clear, but it is running like crazy. We go for labs Wednesday and I am going to see if Berkow will just go ahead and see him and then we wont have to go back on the 28th. I also need to talk to him about seeing a dentist for Taylor's rotten teeth and when to re-immunize him. I don't want him to catch anything now that he is able to get out and about again. All his shots were up to date when he got sick, but when you receive a transplant that wipes it all out since it kills your counts.
That is all that has been happening around here. This is a long weekend for Jim, so we may do something fun. Maybe Tannehill or bowling or something. If you have a 3 day weekend have fun and be safe.
October 10, 2003 Day +191
The current count for Lunch For Life is: $50,282.00!
How I (Jim) remember that day... The day started off early. It was my turn to take Taylor to the hospital. We had taken so many days off with so many trips back and forth to the doctorís office, and Kim had run out of sick days. My mom went with us and we got there around 7:30am. It was raining that day, just like it is today. I remember them strapping Taylor to the table, he looked like a mummy, and screamed the whole time. They broke the scan up into two parts, with an hour break in between. After the first part was finished, we left the hospital and took Taylor to IHOP in Wildwood for breakfast since had hadnít had anything yet that morning. He ate extremely well, more than he had in a few weeks. I called Kim and left her a message that the first part was over and he was good as gold, minus the screaming of course. We made it back to the hospital and completed the second part. We were then told to wait while the doctors went over the scans. About thirty minutes later, they came out and said there was what looked like fluid around his kidney, so they wanted to take a look at his kidney with an ultrasound. I didnít think much about it and they didnít make a big deal out of it, and Taylor had already had about 4 ultrasounds on his hips to check for fluid build-up. When the technician did the ultrasound, she saw a mass right next to his kidney, and for the first time, tumor was mentioned. I freaked out a little bit, but the technician said it would also just be a pocket of fluid. I called Kim immediately and told her to get to the hospital ASAP, because they thought they had found a tumor. We were sent to a room to wait while the doctors went back over the scans and ultrasound. Then, thatís when we got to meet Dr. Berkow for the first time. He told us what he had reviewed and what he thought it was. Neuroblastoma. Cancer. 30% survival rate. These are the only three things I remember in saying to us. I held together while he told me these words I thought I would never hear, especially not on an 18 month baby. When he left, I broke down. I have never cried so much or so hard in my life. Taylor sat innocently in his wagon. I was floored, devastated. Kim arrived about ten minutes later; I was still face down, crying when the door opened. I didnít even look up. I will never forget what came out of her mouth for as long as I liveÖ She screamed NOT MY LIFE, NOT MY BABY. She was also floored, and knew before anyone could tell her. She collapsed over me repeating not my life, not my life, not my life. I donít remember much of rest of the day after that point; itís all in the past. Now we live each day, thankful for that day and thankful for one more day with Taylor.
There are many events that the world will never forget. Things like Kennedy being shot, Elvis dying, 9/11, etc. Well, for us October 10,2002 will forever be etched in our memories. I remember that day as if it were yesterday. They say you forget the bad things, but I remember every bit of it. It was a Thursday. I had on khaki pants and a Morningstar shirt. I had on a pair of socks that to this day I have never worn again because they would not stay up and they drove me bananas all day long. It was movie day in my classroom, so the kids were sitting quietly which was good since Nicole was gone to meet the moving van at her new house and I was nervous about Taylor and Jim being at the Dr. I checked the messages on my cell phone right before we went outside and Jim had left one telling me they had finished one part of the test and were eating breakfast and then they would go do the other part. We went outside for a while and then came back in to get the girls ready for dance. I was holding Brooke and helping her get her dance outfit on when Jim called back and asked me to come to Children's hospital. He said they found a tumor on the scan and they were finding out if it were cancer. I about lost it. I just cried and cried. Sweet Brooke just hugged me. Little kids are so great about that. They can comfort you like there is no tomorrow. She probably just wanted to go watch the movie with her friends, but I was holding on to tight. I called Lisa in to the room and explained that I had to go. I called my mom, but couldn't find her. I just started calling numbers with the Blue Cross exchange until I found someone that knew her and went to get her. We left within an hour and headed to the hospital. By the time we got there we had calmed down and decided that it was not cancer because his blood work just the day before had been fine other than anemia. We finally found Jim and when I walked into the room and saw Taylor asleep in a wagon and Jim with his hands over his face, I knew what they found. I didn't know it was Neuroblastoma or that that was the most incurable beast, but I knew we were fighting cancer. The rest of the day was spent doing lab work, going over treatment plans, and signing consent forms. We were finally home around 6 or so. Then we began calling people. I called Kim G. one of my kids mom and also a grief councilor. I fell apart over the phone, but she brought me back. She told me to take it one day at a time and if I couldn't do that to take it one hour at a time or even one minute at a time. That was the best advice I could have gotten. I do have to go minute by minute at times, but I get through it. We get through it. Jim may want to add his own take on the day. He was the one in the room when Dr. Berkow actually said those horrific words. That started a weekend spent doing anything Taylor wanted since we knew he would be limited to his outings after chemo began. He had his surgery the following Tuesday and once he was recovered enough from the surgery he started chemo. He never even came home in between. I actually wanted it that way. It was worse than a new baby. I felt so helpless at taking care of my own son. He had IV lines and broviac lines that I didn't know what to do with. Look at us now, we can flush lines, hook up TP feeds, give shots and disguise meds like no one else's business. I never wanted to be a nurse, but looks like I got to anyway. I didn't even have to go to school for it.
The past year was not all we had imagined it. It was very hard and we learned things we never wanted to know and we have seen our 2 year old endure things no one should endure, but especially not a child. We have also met wonderful families and doctors and nurses that we love dearly. I remember sitting in clinic 5 that day and the first clinic visit after chemo and being so afraid. I didn't talk to anyone and I didn't know what to expect. Now we bee bop in and talk to everyone. Taylor knows the routine. He is shedding his shoes when I sign in so he can get back there to Cynthia to weigh and then get a sucker. Those are the only kids Taylor knows and those are my days out. That is where I catch up on my gossip and what not. We all discuss concerns and all too, but we have many a good laugh. It was the same on 4 tower. We had no idea where the coke machine was, where the linens were, what to do when he threw up all over his sheets. It was horrible. Then I find myself crying on the last visit. I had spent many a late night at that nurses station talking with nurses about nothing imparticular, just adult conversation. I had fun on stem cell too, but you just couldn't get out and about like you do on 4 tower.
I am ready to put this behind us. I am ready to go back to work and see Taylor doing normal boy things including school and ball games. I do know that we will be a nervous wreck on the day they say we do not have to come back for 6 months or a year. We feel the need to keep on treating and scanning to be sure that we are in the clear. However, we know that the staff of Children's hospital and you all with the help of God will get us over that hurdle too.
Today I went to the doctor. Finally this baby is face up. We got a good look at a perfect face and all 4 chambers of the heart. I tried to get her to do the 4D ultra sound today, but she wouldn't. We will go back on the 23rd and do it then. He better still be face up. Insurance does not cover the 4D, so I want a good shot. I am going to be so mad if I pay for this and get a shot of the back of his head.
FOR LIFE UPDATE
--Kristin Connor (mother to Brandon)
Dr. Modak emailed yesterday. We will send blood again on next Wednesday and se if he is still HAMA. He will start Accutane on 10/20 until 11/2. I am assuming that that will keep us here the week of Halloween because they can not take the Accutane and 3F8 together. That is a good thing because I really want him to go trick or treating and have a fun Halloween.
October 9, 2003 Day +190
As I was walking down
life's highway many years ago I came upon a sign that read:
Heavens Grocery Store.
When I got a little closer the doors swung open wide and when I came to myself I was standing inside. I saw a host of angels. They were everywhere Standing everywhere. One handed me a basket and said "my child shop with care." Everything a human needed was in that grocery store and what you could not carry you could come back for more. First I got some patience. Love was in that same row. Further down was understanding. You need that everywhere you go. I got a box or two of wisdom and faith by the bag or two and charity of course, I would need some of that too. I couldn't miss the Holy Ghost it was all over the place and then strength and courage to help me run this race. My basket was getting full, but I remembered I needed Grace and I then chose salvation for salvation was for free. I tried to get enough of that to do for you and me. Then I started to the counter to pay my grocery bill, for I thought I had everything to do the Master's will. As I went up the aisle I saw prayer and put that in, for I knew when I stepped outside I would run into sin. Peace and joy were plentiful, the last things on the shelf. Song and praise were hanging near so I just helped myself. Then I said to the angel "now how much do I owe?" He smiled and said "just take them everywhere you go." Again I asked " really now, how much do I owe?" "My child" he said, "God paid your bill a long time ago."
One of our faithful Taylor followers sent this to me yesterday. I thought I would share it with you all. Isn't funny how God always sends you people or things when you most need them. Tomorrow marks the 1 year anniversary of Taylor's diagnosis and we would not be where we are today without God and all of you. I remember the day he was diagnosed so vividly, but I will share that tomorrow. I do however remember today just as vividly. It was a Wednesday and I was at work. I had on blue jean shorts and an orange t-shirt with a witch pin on it. I had one child out on the playground that would not go away and play and she was really starting to work my nerves. I don't remember anything in particular bugging me, but I was annoyed at something. I got a phone call from Dr. Petelos, Taylor's pediatrician. He was very adamant that I bring him in right away. I was again annoyed because I had already missed so much work and really thought he could just tell me what he wanted. He wouldn't so I had to use my lunch break to take him back to the doctor for the millionth time. I remember Taylor was eating rice when I went to get him. I didn't have time to let him finish and that was to bad since he was barely eating anything anymore. We got to the Dr. and he came right in. He immediately moved our Nov. appointment with the arthritis Dr. to the next week. At this point we thought he had Juvenile rheumatoid arthritis. He did some blood work a while before and it showed Taylor to be anemic, so he drew more to see if it was a fluke or if he was. He was still anemic. He then drew several more labs to see if he was truly anemic and needed to be put on iron supplements or if he was just sick and it was casing him to be anemic.
He said he would get back to me with the results, but that this was probably the answer to it all. He was very tired, grumpy, pale, and lethargic. He said all of that was symptoms of anemia. I went back to work thinking that finally we had an answer and soon we would be back to normal. Boy was I wrong.
Now that I have you all thinking back to what you were doing a year ago, I will tell you what we did yesterday. Taylor and I went shopping. We just wanted to get out for a while. We went to Kids R Us and Taylor found a rack of Wiggle shirts. It was a tuff decision for him. We had about 10 wiggle shirts layed out and him staring at them saying hmmm while scratching his chin. He finally decided on one and it was not the one I would have bought had I been alone, so I guess it was good he was there. He found a Blue's Clues shirt too. He was very excited about it all. He is worse than any girl when it comes to clothes. (he gets that from his daddy) Thank goodness he took a nap today. He didn't yesterday and he was an ugly little thing after about 5:00. Daddy had to work late and we were home alone. Taylor didn't care for my choice of corn dogs for dinner, so he had... yep, you guessed it, rice crispy treats. We cleaned up the living room also for the millionth time.
Please pray that We are in the race for beating this disease forever. Pray for all our cancer friends and families that are also in the race. Pray for Pop and his healing as well. Pray that we lose our HAMA in 4 weeks and return to NYC and that this delay does not cause him any harm.
October 8, 2003 Day +189
As of today the Lunch for Life total is $30,762.00
This is God.
I'm going to handle all of your problems today.
I will not need your help.
Enjoy the day.
This is a quote I have had to read several times today. Dr. Modak emailed last night and Taylor is HAMA positive. We will not be going to NYC this Sunday as planned. As you all know we have had mixed emotions about this anyway, but now that we are being told he can not get the treatment this month, it is a little hard to swallow. I really wanted to get 4 rounds in before we hit a HAMA road block. We will send another blood sample in 2 weeks to see if he has lost the HAMA or not. If he has lost it we will return to NYC and get the 4th round if not we will continue to send blood samples until he does lose it. I must say that last round I was disappointed to have to go, I guess I had just told myself he was positive after having no pain. This time his pain was sporadic so I really didn't know what to think, but I assumed we would go. I am afraid we will have to go back after 2 weeks and that will ruin his Halloween and his visit to see Toy Story on ice. I also can not fly after the next 2 weeks and that will really put a strain on finding 2 people that can miss work as well as on Jim and I to not have one of us with him. I know all of these things are small in the big scheme of things, but still stressful. I have prayed and prayed that the results be in Taylor's best interest, but it is hard to see. I know it will work out, but I hate the wait until I find out why it went this way. I don't really consider Taylor off treatment since he will eventually return, but I am not ready to veer from the course that was planned. I need things to work out the way they were planned so that I can stay focused. Now I will worry about every little thing just because we didn't do it all as planned.
Latisha (3F8 nurse) called this morning and told us what we already knew, but added that a meeting would be held and that in that meeting they would find out from Dr. Cheung when he wanted blood samples from us. He knows based on the HAMA level when they should lose it. I do not know if Dr. Modak already knew Taylor's level and said we would test in 2 weeks or if that was just his guess. Latisha will call us back to tell us. She will also tell us when to start the next round of Accutane. She wasn't sure if we stayed with 2 weeks off and then waited to return to NY or if we start Monday (after 1 week off) to let it take the place of 3F8. I hope we get 2 weeks off as planned. Those Accutane weeks are a pain in the butt.
Please pray that Taylor is not going to be any weaker in his battle because we hit this road block. Pray it doesn't hinder his already made plans for later in the month. As I said before these things are small, but he missed all the fun stuff last year. We were inpatient at Halloween. These are the years that it is the most exciting and fun and I want him to experience all these things. Pray that it all happened this way for a reason and we will understand that later. Pray for all our other friends out there fighting the cancer monster.
October 7, 2003 Day +188
As of today the Lunch for Life total is $30,762.00
Our total is growing. There are only 3 more days left in the lunch for life campaign, so please pass along the info to anyone you see and maybe we can get that total to sky rocket!!! Also, don't forget to pre-buy your curing childhood cancer car tag when you renew your tags. We need 1000 people top commit to purchasing it in order for it to pass. As of the last total we heard there has only been 33 purchased. We do have one year to do this and it has been 2 months, so pass the word on to all your Alabama friends and family. The web site for more info on the tags is still posted below.
Last night Taylor and Jim stayed home. Taylor was a very good boy for daddy. He ate all his noodles and a ton of rice crispy treats and even cleaned up all his toys. Jim called me at about 10:30 to see how far I was from home. I was actually turning into our subdivision, but I asked why he needed to know. Taylor could hardly hold his eyes open, but he wanted to wait for me to get home. I came in and Taylor was curled up under the sofa table, he was hiding from me. He jumped out and scared me. He was then pining off the walls, not in the least little bit sleepy. Finally after 11:00 he gave up and went to sleep.
As for mommies night out. Temperance and I went to a jewelry party at my old bosses house. It was so good to see her and others that I use to work with. We had a great time, thanks Lisa for the invite. Taylor was excited when I told him we would go see miss Lisa and pick up our goodies when we get back from NYC. This will be the first time he has seen her or a non cancer child since he was diagnosed last October. It should be interesting. We have actually been told he can be re-immunized and return to daycare, but the thought scares me. He always caught every little cold there was and I really do not want to deal with winter colds on top of a low immune system. Plus the way his platelets jump around he would look like a walking bruise. Maybe in the spring when it warms up and he is a year post transplant. Maybe when I have 2 kids to chase after my fears will ease just out of shear craziness!
Today Taylor and I slept until 10:00. I actually woke up earlier, but was enjoying just laying there and being lazy. Taylor finally woke up at 10:00 and was immediately ready for rice crispy treats and Wiggles. He is playing very nicely today, making a huge mess. I hope he knows he is cleaning it up and he is not going to get to throw it all in the floor of the play room. We are going to go to Wal-mart to get more rice crispy treats and whatever else we stumble upon. You know you can not go to Wal-mart and come out with what you went for. We usually come out with stuff we didn't need and forget what we came for.
Please continue to pray for Taylor and his success against the beast known as neuroblastoma. Remember us as we wait for the results of the HAMA test and as we make our way back to NYC. Pray for all our cancer friends. We lost a friend last night from NB. We met 13 year old Jessica in NYC back in September. She was a very sweet girl and we are very sad to hear of her passing. Please stop by and offer her family support www.caringbridge.org/mn/jessicalynnnielsen/
October 6, 2003 Day +187
As of today the Lunch for Life total is $20,027!
Thank you all so much!!
Hello again on this rainy Monday. Well, it was rainy on our drive home, but not a drop has fallen here at the house. We had to go get some prescriptions from the pharmacy at Children's Hospital. I was going to visit 4-tower, but I knew I would never get Taylor out of there and we had a few other things to do. It didn't matter though because we still got to see a bunch of our old 4-tower nurses. We saw Wayne and Jessica. He gave them both a BIG hug and even gave Wayne his passy. My how things have changed in a year. He used to stuff his passy in our pockets if he saw Wayne coming. Then we saw Courtney. He gave her a hug too. I guess he was just all hugged out by the time we ran into Beth and Christi. Sorry!! It was great to see you all!!! We stopped by the bank and ate lunch with Jim. We got to the restaurant first and when Taylor saw Jim coming he stood in the booth (we had a window seat) and yelled hey Ca Ca as he waved like a mad man. I don't know if Jim heard him, but all of Tin Roof Bar BQ did.
That is about the extent of today. We are home now and he is eating his 900th rice crispy treat and watching Dragon Tails. Thank goodness it is not Blue's Clues or Wiggles. We are just hanging out. Mommy gets another girls night out!!! I am so excited. I have had a bunch of those this 3 weeks at home. We have no other planes this week until Friday when I go back to the doctor. I am down to those lovely visits every 2 weeks, so you will probably hear a lot more of those stories now. Are you excited? I don't really tell you all much about little man #2 who still does not have a name. He is making up for all the time I could not feel him kick due to my placenta. He is much more active than Taylor ever was. I do sleep better however (knock on wood). Hopefully we will pin point an exact c-section date in the very near future. I am sure the Dr. will be very easy to work with since we are working around NYC and Christmas.
Please continue to pray for Taylor and his continued success. Keep passing the word on about the lunch for life. Keep Pop in your prayers. Pop has started his 3 month round of meds for his lung fungus. Hopefully that will be the end of all his problems. Please remember all our cancer friends. Last but not least. Pray that the HAMA results come out in Taylor's best interest. If we go to NYC pray we get there on time, have an uneventful trip with full power:) and we get out on time and safely land back home!
October 5, 2003 Day +186
Grand Total for "Lunch For Life" thus far is $15,240.00!!
The above was the total as of
yesterday. That is awesome and it was only day 4!!! The goal was 10,000 in ten
days. We already got that lets see just how close we can come to what it would
equal if we all followed the directions exactly as it was explained. Sample of
what one person could do is found below. As you can see the day 4 total is
already surpassed. That means so much to all of us NB parents.
Day 1 1 person asks 5 friends to donate 5 dollars Total: $25
Day 2 Those 5 people ask 5 of their friends to donate 5 dollars Total: $125
Day 3 Those 25 people ask 5 of their friends to donate 5 dollars Total: $625
Day 4 Those 125 people ask 5 of their friends to donate 5 dollars Total: $3,125
Day 5 Those 625 people ask 5 of their friends to donate 5 dollars Total: $15,625
Day 6 Those 3125 people ask 5 of their friends to donate 5 dollars Total: $78,125
Day 7 Those 15625 people ask 5 of their friends to donate 5 dollars Total: $390,625
Day 8 Those 78125 people ask 5 of their friends to donate 5 dollars Total: $1,953,125
Day 9 Those 390625 people ask 5 of their friends to donate 5 dollars Total: $9,765,625
Day 10 Those 1953125 people ask 5 of their friends to donate 5 dollars Total: $48,828,125
Today we went to the pumpkin patch in Hayden. It was so much fun. Taylor had a blast. Once again, Camp SAM out did themselves. Thanks camp SAM we had a blast!!! After eating a great picnic lunch. (Taylor ate about 6 rice crispy treats for lunch) We headed off to the petting zoo. Taylor petted a donkey, but wasn't real sure about it. He didn't care to touch any of the other animals, but he did like the cows. We then went to the pony rides. He got on it and about the time it was time to start walking he backed out. He didn't want to go. We don't know why. He rode a pony at Tannehill when he was real little and he rode a horse too. I guess he is old enough to be scared now. Anyway, we went on a hay ride that took us to the pumpkin patch. We got to walk around and pick our own pumpkin. He loved the hay ride and he liked the pumpkins, but he was upset that daddy had to carry the pumpkin back to the car and not him. We took a break then and went to get a cold drink and some more rice crispy treats. We went to get his face painted. He picked a bat, but the people had a hard time drawing it. It took several tries, but he stood still for all 15 minutes of it. He hasn't even asked for it to be washed off.
We left around 3:00. Taylor wanted more rice crispy treats, so we stopped at Food world to get some. Of course he wanted cheese, tea, and gummy snacks too. We finally made it out of the store but only to pass Don Don's or McDonald's. We stopped to get him something since we knew he wouldn't like what we were cooking. He ate it then headed out to ride the gator. We are now watching a movie we rented and he is conked out on the couch. He had a long day, but a fun day.
Please continue to pray for
Taylor and all his friends. Please continue to pass the word about the
lunch for life campaign.
http://www.caringbridge.org/il/johnkwasinski/ please check out this web site. John also has NB and his mom did a great job of explaining the lunch for life campaign. Please donate 5 dollars to this fund and ask your friends to do the same. It would mean so much to not only us and Taylor, but all the families we have come in contact with that also fight this disease.
October 4, 2003 Day +185
Happy Saturday to you all. We have been busy. Last night Taylor had a first. Well, a first in a year anyway. He spent the night with Papa and Maw Maw. At first he wasn't real sure about us leaving him there, but he got over it fast and had a great time. He really likes Molly now. For those of you who do not know, Molly is our black lab and she went to live with Papa and Maw Maw while we lived in an apartment. We had all intentions of getting her back when we moved in our house, but Taylor was diagnosed 2 weeks after we moved and we didn't think he needed to be around a dog with low counts and a broviac line. Molly never really cared for Taylor anyway since Jim and I had her for several years before Taylor even came along. Now that Taylor can eat good food and throw a ball they are becoming fast friends. Taylor talks non stop about his dog or black dog coming to his house. When he calls her he just yells dog. He enjoyed feeding her last night and checking out all the toys that he hasn't seen in a long time. He doesn't forget anything either. He picked up where he left off a year ago. We thought we may get a call or special delivery at bed time. He is not good at going to bed period much less in a strange place and it has been a year since he spent the night away from home other than the hospital and NYC and he always had mommy and daddy there. He did good though. He slept all night and woke up with that good ole Taylor energy.
We met them at the Cracker Barrel this morning to eat and then he went home with us. He played outside when we got home. He rode his gator and played on the swing set. He wasn't ready, but we made him come in and get a bath and nap. He was not going to a wedding with me without a nap. He got in trouble at bath time. He didn't want to brush his teeth and refused to open his mouth. He likes to leave the water running and play with the stream of water while he bathes. Normally I would not allow this, but seeing as he couldn't even bathe for almost a year of his life, I let him have a little fun. Anyway, I turned it off and told him he couldn't play in the "rain" until he brushed his teeth. I guess he didn't care for being threatened because he dumped a cup of water all over me. He had a under water pop on the butt and then he had to get out and brush his teeth. It really ticked him off to get out before the water was gone. He fell asleep after that since he was mad.
He woke up just in time to play with Guh and eat a bowl of oatmeal and get dressed. He was looking all sweet and innocent in a pair of khaki pants and a pale yellow shirt. He told us to wait on him and he took off toward the play room. We thought he was getting a toy to take with him, but he came back with an Auburn hat on and sun glasses. He was so proud of his cool dude outfit that we didn't have the heart to tell him to take it off. He did let us take it off of him when we got in the church. He is a cool dude with manners. He was good as gold during the ceremony. He colored in his little notebook and watched the candles. He was ready for cake. He ate an entire piece by himself and wanted more. We left before we saw the bride and groom leave, but Taylor was getting a little wild. We went to eat and then to Wal-mart. He again was good as gold and we bought little cup cakes since he was still asking for cake. Of course once home we realized that the cake had sprinkles in it and he wont eat it. Picky picky!!!
When Guh dropped us off at home guess who was here. Papa, Maw Maw, Dugan, and Molly. It was dark, but Taylor rode his gator and chased Molly anyway. After about 15 minutes I made him come in and he was none to happy about it, but he got over when he remembered that Guh had gotten him an umbrella and cup cakes at the store. He is so tired right now he can barely hold his head up, but he is still playing. He is watching Auburn football and playing with our two fake pumpkins.
We will update tomorrow after the pumpkin patch. Please continue to pray for Taylor, Pop and our entire cancer family. AS for Pop, it was found that he has a fungus growing in his lungs. He will take a 3 month treatment for it. That is all I know right now. Thank God for Taylor's success and that Pop finally has an answer and it is a fairly simple to treat problem.
October 3, 2003 Day +184
~ The Littlest
by Cheryl Jagannathan
Mother of Robby Putnam, Leukemia SURVIVOR
The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads.
Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.
We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell.
So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars.
For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!
Hello all! Here we are at Friday again. Taylor has proven himself to be mister independent today. We knew all along that he was, but today just summed it up. Our appointment for our IFSP got changed to 10:00 rather than 1:00 which was fine, I just had not had a shower yet. It was 9:00 and I was running around trying to get at least half way ready. I jumped in the shower and left him to watch TV. I came out and he was in the living room floor with a huge box of peanut butter capn' crunch next to him, a bowl full of it in front of him with a big pink spoon in it. He was eating away and minding his own business.
Brandi got here at about 10:00. He remembered her last visit and was expecting her to have a big box of toys. Not today, today was all about me and her filling out paper work and getting his goals and stuff ready. He will begin speech therapy next week. He will get 30 minute sessions each week unless we are in NY and then we will skip. He will work with Brandi until he is 3 years old then he is either turned over to the school system or to a private speech therapist. We may not even do any more after he turns 3. His delay was so small that we may get all we need before then. We will cross that bridge when we get to it.
Yesterday was a crazy day for Taylor. He was a pure old whiney hiney!! He pitched a royal fit when I gave hi milk rather than tea. I had to make tea. Once it was made I gave him a cup full with ice in it. Well, he didn't want ice so he threw the cup and his passy and started banging his head on the floor. It was awful. I put the cup in the fridge and he went to bed without his passy. He screamed, but oh well!! He woke up a much happier person. He rode his gator for a little bit when Jim got home. When it got dark he bundled up and went outside to lay on a blanket and look at the stars. He did not care to much for laying down, so he stood. He got bored real quick and came in to bowl in the basement.
He is almost done with this round of Accutane. He will finish up on Sunday. He still looks great, no pealing or redness at all this time. I do not know if we are just keeping him coated good enough to stop it or if it will get worse with each round. This weekend will be fun. Tomorrow we will be going to a wedding. Lets all hope that Taylor will sit quiet and not disturb things. Sunday we are going to the pumpkin patch with Camp Smile a Mile. He doesn't know how much fun he will have, but we know he will love it. We can not go to the grocery store without him looking at the punks or pumpkins to you and I. Tonight we are taking his fire truck costume back to Old Navy, he prefers the Mike costume. I am sure we will end up in Wal-mart if he spots it. That is all we have planned. He is eating like a pig!! He ate constantly yesterday and has done the same so far this morning. I am getting tired of fixing food, but has to be putting on the pounds and he needs all the pounds he can get.
We will update again tomorrow night and let you know how he did with his 2nd wedding adventure. The first was not pretty. He threw a hymnal in the floor. He was only 13 months old, so maybe he will do better this time. Please continue to pray for his complete healing and that of all our cancer friends. Pray that we are all able to stay well this winter and NYC is not to rough on us with the snow and new baby too. Pray that Pop is healing from his surgery and will be back to normal soon.
October 2, 2003 Day +183
ANNOUNCEMENT OCTOBER 2, 2003
We are joining with other neuroblastoma parents in an effort to help Taylor and all of his friends who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. For children who are diagnosed after one year of age there is no known cure for this disease. The survival rates are pathetic.
Pediatric oncology research receives almost no funding. The NCI granted pediatric oncology $30 million dollars last year. This was to research all types of juvenile cancers. Breast cancer alone receives this much money from NCI. Of this $30 million, neuroblastoma research gets a very small percentage.
We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.
You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Taylor Watts in the following ways:
* online (it is a secure site) by clicking on this link LUNCH FOR LIFE
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
PO Box 6635
Bloomingdale, IL 60108
Thanks so much for helping us find a cure for this horrible disease. I just hope it comes in time to save Taylor and all of his friends who are fighting this monster with so much strength and courage.
Hi! Not much happening around here today. We are just hanging out and we will AGAIN clean the living room and kitchen. The bug man rescheduled and will be coming at 3:00 today. Other than that we have no plans. We had dinner at Guh's house last night. He followed the normal protocol for those dinners. He ate a few bites of what was on is plate and then asked for noodles. He ate most of it though. He had fun plying with all the toys it has been a year since he has seen. He also went to Papa and Maw Maw's last week to check out their toy stash. He always ends up bringing stuff home with him!! I can't wait until he has the full go ahead to go where ever he wants and we will unload all the noisy toys to the grandparent's houses:) We got home around 9:00 and though he could hardly keep his eyes open he didn't wander into bed until about 11:00. While we were getting out the car he discovered there were stars in the sky. He really liked them. I guess we will have to go out tonight and look at them again.
I talked with the Viacord, a company that stores new born cord blood, about saving baby number 2's cord blood. We looked into that when Taylor was born, but it is such an expensive procedure and we were so sure we would never need it. I remember when Dr. Berkow mentioned transplant Jim and I both thought back to the day we decided not to save that blood. I wanted to save this babies in case Taylor were to ever need it again, but again couldn't afford it. I had decided just to donate it to the registry and that way it would be used for another needy child. I was talking to another parent in NYC that just had a baby and her middle child has NB. She was able to have her cord blood saved for free due to the other child already having a need for it. She gave me the info to CBR where she saved hers. I called the Viacord company first since that is who St. Vincent's uses. They have agreed to collect and store the blood for free. It is not necessarily a match for him, but it can be stored for 20 years and we can take it out for us or any family member that may ever need it. I of course hope and pray that we just store it and never use it, but it is there for all of us if the need arises. They will test it when they collect it and let us know if it is match for Taylor. They said that the new baby would not be touched in the testing process where as the CBR company did a bone marrow biopsy on the baby. I was dreading having to put the baby through that after seeing how much it hurts Taylor.
We will update again later if
something fascinating happens. Other wise just know that no news is good news.
Please continue to pray for Taylor's continued good health and that of all his
Here is how you can help raise awareness for pediatric cancer, and raise money for Children's Hospital Birmingham. If we can get enough people to sign up, you will be able to get a Alabama Curing Childhood Cancer Car Tag or Learn more at the State Website. Please click here to read more about this wonderful cause.
If you would like to be included on a mailing list, and receive an email every time Taylor's Page is updated, please click here. Every time a new update is made, you will receive an email. If you have time, I urge everyone to take a quick minute and write your congress person about the importance of the H.R. 2021 bill, please click link to continue...
October 1, 2003 Day +182
What Cancer Cannot
Cancer is so limitedÖ
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit.
Today Taylor is officially 6 months post transplant. Wow!! We have made it half a year out of transplant. It does not seem like that long ago since we were gearing up for the big day and suffering through its aftermath. All in all it wasn't that bad, granted I hope to never do it again, but it wasn't as bad as expected. Most kids we have come in contact with have relapsed in the first year out. Of course we have met others who were in remission as much as 9 years before relapse hit, but in most cases it was one year. We feel as if we are half way through that first difficult year. That doesn't mean if he gets through a year and stays in remission he is home free, it is just is a milestone in the NB world.
We will not meet with Brandi today. She called a little bit ago and said she has been sick and we decided to do it Friday. Taylor had great counts and probably would have been fine, but it was better to be safe than sorry. We rescheduled for Friday afternoon, so I will let you know how it went then. Thanks Brandi for working with us on that one!!! I think today will be a stay at home day other than the noodle run we need to take. We are fresh out of noodles and that is not going to be good when Taylor is ready for lunch.
Taylor is in the playroom cooking for me. He is a busy little bee these days. He is liking this weather to, he knows enough to know I can't say it is to hot to go out. Smarty pants!! He and Ca Ca rode the gator outside yesterday and had a blast. He likes to pick up the leaves in the yard. He likes to do it one by one and put them in a bucket, then he likes to dump them out all over the driveway, so much for cleaning up. We are still doing the normal of watching Blue's Clues and The Wiggles a million times a day. It is starting to get old, but he loves it. He is big into coloring these days and playing with his handy dandy notebook.
Please pray for Taylor's continued success in beating this disease. Pray for all our other friends battling NB and other cancers as well. Please pray the Pop is recovering from his surgery and that the findings of the biopsy are easily treated. We thank each and every one of you who check on us and pray for us everyday. It is your support and prayers that have gotten us through the last year. Please remember to sign the guestbook or at lease leave your name, so we know you were here.
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