Quick Jump 3rd Quarter: 2003: July August September
September 30, 2003 Day +181
Today was a long day, but a smooth day. We arrived at the hospital at 7:30. We were registered and ready to go by 7:45. I just happen to pass a nurse form the CT room and asked her if anyone could access his port and the answer was no. So we headed down to clinic 5 to get his port accessed. It took about 15 minutes and we were back upstairs. Ruth went ahead and got his CBC drawn and she said she would draw the HAMA labs when we came back to get his port de-accessed.
We went back upstairs and sat in the waiting room. The nurse had brought him his contrast which is what makes any tumors or cancer light up on the scan. Normally he just gets it injected in his IV, but they tried to get him to drink it today. He drank about a third of a can of apple juice with the contrast mixed in. He doesn't like apple juice anyway, so it was a double challenge to get it down him. He used to get an IV in his hand to inject the contrast with due to the fact that they push it with a machine and it can blow up the tubing on the broviac lines. Now that he has a port he can have it injected through that, I guess the port is stronger than the broviac lines. He is usually put to sleep with a injected medicine, but since he has been getting the oral Chloral hydrate in NYC, they gave him that today. It isn't as strong a drug and they are a little easier to wake up with the oral med. He went right to sleep and slept right through the scan. Once it was over at 10:00, we had an hour before the bone scan. He hates that scan. They basically mummify him on a table while it goes around it and looks at him. Since he was asleep and had had no trouble breathing, they let him sleep and hoped he would sleep through the bone scan. He actually woke up as they were strapping him to the table, but he did not even whimper. He layed through the 30 minutes scan just as happy as could be. They were impressed. They said kids do not wake up from sedation on the table that happy. They also have done every MIBG and bone scan he has ever had in B'ham and they know how much he hates it. I guess he is just getting use to it all or growing up.
By 11:45 we were back in clinic 5 waiting to be de-accessed. It was a very slow day in clinic today. Dr. Berkow had time to go look at his scans then. HE came in and said the CT scan is showing No Evidence of Disease (NED) and the bone scan was perfectly normal. Praise God!! We have now completed the entire battery of tests and he is still in remission. Dr. Berkow went ahead and examined him since he was there. All looked great. Taylor decided that during the exam would be a nice time to let out a huge toot. He was drunk as a skunk and laughed. Dr. Berkow even laughed saying he had 2 sons who also made bodily sounds. Taylor did some dancing and being silly in his drunken state. However, as it wore off he turned nasty. Thank goodness he fell asleep in the car.
Taylor's lab worked was all in the normal or low/normal range. His platelets were..... drum roll please..... 130,000. That was up from 86,000 on last Tuesday. He still has 2 weeks before 3F8 starts so hopefully he will have great platelets going into that. It is a good thing that his platelets are so high seeing as last night he tried to knock his front teeth out. He was running and fell and hit his chin and bit up and busted his gums between his front two teeth. IT looked awful last night, but it looks better now that he has drank and washed off all the blood. Thanks Rhonda for getting me through that one!!! Dr. Berkow looked at it and said the gums were bruised but fine. We may need to have his tooth ground down where he chipped it so that it wont cut his tongue. He needs to go to the dentist anyway. His teeth are so yuck after chemo. He had a few spots that we had to watch closely before transplant. I am sure they are worse now and many more. Dr. Berkow told us that is why God gives us a set of teeth we lose, so that you can knock them around for a few years and not worry about it.
We stopped and mailed the HAMA blood to NYC, We will know next Wednesday of we will go to NYC for round 4 of 3F8. Tomorrow we will have Brandi from the ARC program come to do his IFSP. I will update with the findings as soon as I can.
Please pray for Taylor's complete healing of this disease. Thank God for the blessings we have received thus far and for the remission status we are still holding on too. Pray for all his friends that continue to battle with him. Pray that my Pop is doing better and will find out results of his tests soon. He was discharged from the hospital today. We were going to see him, but Taylor fell asleep. We will try again tomorrow.
September 29, 2003 Day +180
Here we are again, back on Monday. Today was not to bad for a Monday, it went fast anyway. I woke up at about 10 after 7:00 and was about to get up and get ready so I could let the bug man in. He saved the day. He called and asked if he could reschedule. I was so glad since it was cold and I did not want to get up. I went back to sleep and got up at about 8:30. I got ready and ate breakfast and everything and Taylor was still asleep. I went in his room at 9:15 and his eyes were open. I do not know if he was awake and just laying there or if I woke him up by opening that squeaky door of his. Either way he was in a great mood and popped right up and let me dress him. Last night we had an awful time getting him to swallow his pudding slash Acutane. I assumed this morning would be bad too. Luckily he asked for oatmeal for breakfast and I was able to slip it in there and he never knew. Only one more week of this cycle, maybe he will forget about it on his off weeks and not fight us next time.
We left early to go get gas. We got cracked up at the gas station. There was a huge bus letting off all these old folks and a group of ladies came up to me while I was pumping gas and said that they were having a contest while they were on their road trip and she showed me this list of stuff they had to find or get pictures of to win. One of them was a person in a car waving at them. She wanted me to get in the car and wave to her. I did and she took my picture. As soon as she took it a man walked up and got on to her for cheating. She thanked me and then the group walked away arguing over rather or not that was cheating or not. It was funny.
After that adventure we headed to St. Vincent's for my doctors appointment. The nurse says I gained 11 pounds, but I think she was drunk. I felt as though I had lost, but if I gained it was not 11 pounds. I have maternity clothes that are to big, so I know I don't weigh what she said. She said it was the same as what I weighed the day Taylor was born and I can promise you that is wrong. Oh well, I go back on 10/10, so we will see then. I had another ultra sound to see the face, but guess what, it is still stubborn and is face down. I turned over and tried several positions and still couldn't see the face, so I will get yet another ultra sound on the next visit. I asked her to show me the boy parts because we just can not see it on the last ultra sound. She got a shot looking straight between the legs and it is all boy for sure. Dr. Orso said that was good for business and I will be back in a few years. I told him not to hold his breath.
After that Taylor wanted to go see Guh at work, but she had a meeting, so we went to see Ca Ca at his work instead. Taylor liked the candy drawers at all the desks and as usual he made out like a bandit. We are now home and just hanging out and loving this great weather. Taylor is ready to go ride his gator, we have to wait for the sun to go down some since he is on the Acutane we try to stay out of the sun as much as possible.
Tomorrow will be a very long day, but we will update as soon as we get back. Please pray that all the scans are NED and that the HAMA test works out in Taylor's best interest. I have to put it that way because I am not sure what I want from that test. You all understand that. Pray for my Pop as he is still in the hospital and pray for all our cancer friends.
September 28, 2003 Day +179
I hope all this makes since. When I go back and do more than one day at a time, I get all mixed up and run it all together. Anyway, here goes. We all finally stumbled out of bed at 9:30 this morning. We got dressed and ready to go, but first we had to tackled medicine. I brought pudding and a spoon for taking the Acutane, but I forgot to bring something to puncture the pill with. He took both of Saturday's doses by swallowing the pill mixed in with the pudding. He actually figured out what we were doing last night and spit it all out, but we managed to get it down him. That was not the case today. He spit out every bite we gave him. Jim finally went to try to puncture it, but it was so wet from him gumming it that it exploded and we had to waste it. Oh well, it was nice while it lasted, but I guess we are back to popping it.
We went to the aquarium and Taylor loved it. He liked the turtles the best even over the frogs. He saw snakes and sea horses that he enjoyed. He liked to look at the fish in drive by fashion. He did like the gift shop where he bought a stuffed turtle. It again only took an hour to go through as we were there at opening time. We were going to go the Kids Discovery Museum where they have hands on painting and a jungle gym, but we opted to do that later since we knew we would never get him out of there. We let him watch Blue's Clues on the lap top and that kept him mesmerized the entire trip home. He fell asleep right as we were nearing our lunch stop, but we stopped anyway and he ate a fair amount. He picks and chooses which meals he will eat good. He usually pigs out at one meal. We got home around 2:30 and just sat around. He is in the basement riding his bike and bowling. We need to unpack, but you all know I like to do that days later.
This week will be busy. We have to be up and ready to let the pest control man in at 8:00. I have a doctors appointment at 11:00. Tuesday will be the real long day. We have to be at Children's by 7:00 for a 7:30 CT scan and a bone scan afterwards. We will go to clinic to draw his HAMA labs when he is awake enough. Wednesday he will get another visit from the speech therapist to plan his IFSP. This will determine what services he needs and how much.
Please continue to pray for Taylor and that he is able to stay NED forever. Pray for all his friends and Pop as they battle different illnesses. Pray that all scans are NED. Pray that baby number 2 continues to develop properly and never has to endure what Taylor has.
September 27, 2003 Day +178
Today I will start with the excitement we all had last night. Taylor went to ride his gator while Jim blew the leaves out of the drive way and I cleaned out my car. Taylor rode on the lawn mower with Jim to pick up leaves in the yard. After they did the yard work they had a race. Jim on the lawn mower and Taylor on the gator. Taylor is a mean racer. He was bumping into Jim and cutting him off. It was so funny. He did flatten one of the lights that line the driveway, but he didn't break it and we popped it right back into place. I got it on video, so maybe soon we will put it here. He is getting good with the gator. He likes to ride in between the trees and when he gets in a tough spot he just pops it in reverse and goes back a little until he can get by. Not bad driving for a 2 year old.
Now for our trip. The day started with a bang!! We were up by 5:00. We let Taylor sleep while we loaded up the car and put the car seat back together, I had taken it apart and washed it. We got Taylor out of bed at about 6:15 and took him to the car without ever waking him up. That is when we hit the first bump in the road. We have a remote for the car doors as most of you probably do. Well, when we were ready to load up the car we just pushed the button to unlock the door and never grabbed the keys. When we got in the car and were ready to go we both assumed the other person had the keys. Well, we were now locked out of the house. We opened the garage door, but the door that leads up the stairs was locked, so we couldn't get any further. It was fun. Jim ended up having to break in. We were in the house, door put back together, with keys and on the road by 6:40. We stopped to get ice for the cooler and then just drove. We waited to eat until Taylor woke up. We grabbed McDonald's through the drive through. Well, they went through the drive through, I went in to potty. I met them on the flip side...Taylor cracked up. He knew they dropped me off on one side of the building and I came out just as they were getting the food through the window. Taylor just laughed and laughed, however, he did not eat. We were in Rock City by 9:30. No strollers allowed and that 27 pounds is heavier than one would think. He enjoyed it. It was nice since we got there as is was opening, it was not crowded and we were able to walk at a good pace and not be waiting to take pictures and stuff. He liked certain things and not so much others. He loved putting his head in the little circle cutouts of cartoon characters. In Disney World he would have no part in those things and this time he wouldn't leave them. He found a pop gun that he couldn't live without yet hasn't played with:) He wasn't real sure about the Fat Man's Squeeze either. It was tricky getting through since he wouldn't walk and Jim had to get through without bumping his head. It only took about an hour to go through. After we left there we drove into down town Chattanooga and looked around. We went to the hotel and checked in just in time too, a horrible thunder storm came through. We lost power, so we just took a nap. Well, we took a nap after we calmed Taylor down, he was pretty scared of the thunder. We all woke up a little after 5:00 and got ready to go to the aquarium and eat, but we soon found out the aquarium closed at 6:00. We went out in search of food. We navigated Chattanooga pretty well to now know where we were. We ended up at O'Charley's, the only thing without an hour wait. He ate all his fries with his new found love, ketchup. He also ate all of his 2 rolls.
When we left there he asked to go to none other than Wal-Mart. Well, we looked and looked and looked and looked until we somehow stumbled into Wal-Mart. He had a blast. They had there power wheel toys out and he had to sit on them all, thank goodness they did not run. He found a Halloween costume there. They had a much better selection than our Wal-Mart here. He is going to be Mike from Monsters Inc. He tried it on and it so cute. We went back to the hotel after that and layed around. Unfortunately at 1:15 AM, Taylor was still wide awake. I finally just gave up and went to sleep my self. I woke up at 2:30 to go potty and he was asleep, so I guess he finally gave up soon after me.
September 26, 2003 Day +177
Hello all, sorry today's update is so late, but today has been a day of talking on the phone. We have solved problems, made appointments, changed appointments and everything in between. We have done a lot of nothing else other than talk on the phone. We went to the bank and to the store to get Pop a balloon. Pop, my granddad, had surgery today. They took a biopsy of the inside of his ling this time. He is ICU recovering, please pray they do not find anything in the biopsy. We went to the hospital to see him, but missed visiting hours and Taylor couldn't go back in ICU anyway. He cried in the car because he didn't get to see Pop. He picked out 2 get well balloons, but has claimed them as his own, so sorry Pop!! He fell asleep in the car, so we took a little drive. I came home after a bit and he of course woke up as we were pulling in. He is now watching the Wiggles.
Last night Papa and Maw Maw came by and played while mommy went out with Amanda. Mommy has had several nights out this week. Those nights are always fun!! Ca Ca and Taylor always have fun too. Taylor has been very busy today playing and having a great time. He has been very good today. He has even eaten a good bit today. He threw me off yesterday with his lunch selection. He asked for hot beans. I took out a can of green beans and baked beans, but that was not right. I had no idea what he wanted. He eventually got fed up with me trying, so he asked to be picked up and get it himself. He pulled out a can of CORN!!! So just FYI if you are ever at my house and he wants hot beans that would be corn. Go figure.
That is all of the news from the Watts' for today. We will update as soon as we can. We are going out of town this weekend, so we may not get around to it until Sunday. We will get some new pictures up soon. Well, that is easy for me to say, I don't have a clue how to do it and I am speaking for Jim. So let me rephrase that. I will ask Jim to put up new pictures!!
Please pray that Taylor is able to remain cancer free forever. Pray that Pop is okay and home soon and that they do not find anything serious. Pray for all of our cancer friends.
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...
September 25, 2003 Day +176
I emailed Dr. Kushner and Dr. Modak in NYC about the results of last weeks bone marrows and MIBG scan. I am to inpatient to wait for them to call me. They both emailed back with the same news (that's always good, that they agree) both tests are negative for any neuroblastoma. Praise God!!! We still have to do a CT and bone scan on Tuesday, but the marrows and MIBG are the most important, that is why NYC only did those two. I can't say we will rest easy as we wait for those results, but at least we will rest a little easier knowing that those 2 are clean!!! We will draw HAMA blood on Tuesday as well and we will find out the next week if we will return to NYC in October. We are supposed to draw labs on Thursday, but I don't want to drive to the hospital everyday next week, so we are drawing on Tuesday and whatever happens will happen!! Pray that that is okay!!
We went to Guh's house for spaghetti last night. As usual he played all during dinner then chowed down while we cleaned up. He was having a blast with his new medical cart. He doctored us all up and now we feel better.
We will not be laying floor anytime soon. All 5 boxes were damaged and unusable. That really stinks since we are so close to being finished. Oh well!! We are going to take Taylor to Rock City and the Tennessee Aquarium this weekend. We wanted to give a vacation since he was stuck inside all summer, but since he is on Accutane and can't really be in the sun and can not swim in the ocean due to transplant, we opted for Rock City. I think he will like the little elves and stuff.
Please continue to pray for him and his continued success at beating this disease. Pray for Pop as he tries to find out what he is dealing with. Pray for all our NB friends: Carter, Morgan, Jake, Chris, Christi, Laura, Jay, Amit, Sophia, Sarah, Levi, Tyler, Harrison, Trey, Austin and the list goes on. Also remember all our B'ham friends: Todd, Tyler, Gracie, Amber, Sophie, Sarah Anne, James, Ally, Broxton, Alexis.... As you can see there are just too many names in this list, so what does that mean.... Buy a curing childhood cancer tag!!!
September 24, 2003 Day +175
Here it is Wednesday again. The time sure does fly when your having fun:) We moved into our house one year ago today. What a year it has been. Some of our projects we had in mind got done and others got put on hold. Had Taylor been diagnosed a little sooner, we probably would still be living with Guh. It has been a hard year, but oddly enough looking back it was not near as difficult as I had envisioned when he was diagnosed. That is not to say that it was not extremely hard to see my baby go through chemo and transplant, but it was not the sickness all the time you see on TV. Now we know TV exaggerates things. This time last year we had just finished painting the whole house. Guess what? It needs it again. Taylor learned to drive his gator in the house at Christmas since it was to cold outside. That is not a good activity for walls!! We had just bought new furniture and we were ready to settle down into our normal, grown-up life. Well, I guess we definitely got the grown-up part, but not so normal. That is the funny part about it all, this is normal. I would not know what to do with myself if I did not got to the clinic once a week. It was even hard to leave 4-tower on our last inpatient stay. I was very glad to leave that phase behind, but all those nurses are now such great friends as are the other families. As odd as it is to imagine, I am sure I will miss NYC when this part is over with too. (Nah!!)
Speaking of projects, the last 5 boxes of our hard wood flooring came in today, so our new room in the basement is nearing completion. Finally, all the toys will go downstairs and the baby will have a room. We got a call at 6:45 this morning telling us it would be delivered today. I didn't really care at that early hour. The FedEx guy called at about 8:30 and asked for directions, he called back just a few minutes later and said he was in an 18-wheeler and he could not get in the subdivision. I had to go meet him at the Flying J to get it. I had the option of having him deliver it to a smaller truck then to us, but we have been waiting on these last boxes forever. Taylor and I had to go get laundry detergent anyway, so we met him. I felt crazy driving up in the truck stop side of the Flying J. Taylor on the other hand had a blast watching all the big trucks.
I have spent most of the day trying to clean up and get the laundry done, but it hasn't been easy. Taylor is now in the "watch me" stage. I spend most of my time watching him stand on one foot, make a crazy face, or whatever other silly thing he has picked up. It is so funny. He is really catching on to things quickly now. We really have to watch what we say and do now because about 5 minutes after you say it or do it, he does too.
Taylor and CaCa had a nice boys night. They had to go buy noodles for dinner and Taylor did a little shopping. We just went to the grocery store, but obviously I did a poor job. Jim said he pushed the buggy and picked out everything that was bought. We now have 2 cans of green beans and 1 can of beanie weenies. We have about 6 packs of noodles, cookies, pudding, gold fish and macaroni and cheese. Out of all that junk he only eats noodles and pudding. oh well!! He had a blast and he has told me all about it a million times. He also has told me about his crash with the buggy. I don't know what he hit, but he found it funny. I also had a great time. I bought something for over my bed and I got to do it while visiting with the very 4-tower nurses we have now become so close to. It was great to see you guys!!!!
Please continue to pray for Taylor and all his scans!!! Hopefully we will find out tomorrow about the results!! Pray for my grandfather. We still do not know the source of all his problems. He had a lung biopsy last week. They had to slit his throat and go in that way. He was admitted to the hospital yesterday due to dizzy spells he has had since the surgery. Pray that he is released soon with no problems and that he finds the answers to what is ailing him and that is can be fixed.
September 23, 2003 Day +174
Today we went to Clinic to see Dr. Berkow. Taylor, as usual had a blast. He got mad at the child life lady when she took his Connect 4 game to swap it for a more age appropriate puzzle. He loves Connect 4, so he was none to happy with her. Clinic was not to long today. He did great when she drew blood from his arm, but it left a nice size bruise today. His counts are looking good. His hemoglobin was 9.2, so he does not need blood. We assume that Thursday's reading was just a fluke when it read 8.1. His platelets have jumped from 63,000 on Friday to 86,000. That is still low, but they are climbing faster than normal after 3F8, so that is good. He said Dr. Berkow's name, well he actually said Berpow, but he tried.
After clinic we went to the courthouse to renew the Mustang car tag. I also filled out the commitment to purchase for the childhood cancer tag. It is very easy to do. Just tell them you want to do it and they fill it all out for you. You can put up to 4 cars on one sheet, so you are not there filling out paper all day. You do have to pay the $50 per tag at that time. The money will go to UAB/Children's for cancer research regardless of rather or not they get 1000 people to buy the tag. The tag lady said it was refundable if the tag did not pass, but you would have to deal with UAB to get it rather than the DMV. As long as the cancer research gets the money rather than Jefferson county, I don't mind not getting refunded. Moral of the story, when you go get your tag renewed, fill out the form and help raise funds to research childhood cancers, so that one day no child will look at such dismal prognosis of cure.
Tonight is guys night. I am going to Miss Rhonda's house for a girls night and the boys will be left here all alone to play and make a mess I am sure. I still have not finished he laundry, but that can be tomorrow's task as we have no plans for Wednesday.
Please continue to pray for Taylor's healing as well as thank God for the blessings we have seen so far in this journey. Pray that all scans come back clear of any NB cells. Pray for all our friends that are still battling this disease. Please remember all the families that have lost the battle. We found out today that Cliff, another 4 tower friend, past away over the weekend. Pray for his family as they begin the next phase of the journey.
September 22, 2003 Day +173
Happy Monday to you all!! Today was clean up day for me and Wal-mart with Papa day for Taylor. I was able to put away all he had managed to drag out in a little over 48 hours as well as unpack our bags. I am washing clothes now and then I will be done with this trip to NYC. Our suitcases have never had a home. When you have a kid on chemo you always keep a bag packed for those unexpected midnight trips to the ER. Now that we are going to NYC we just keep the necessities packed and add clothes at the last minute. We are scheduled to go back to NYC October 12-24th. We will draw his HAMA labs on Oct. 1 and find out on the 8th if he is negative or positive and if we will go to NYC for round 4 of the antibodies. Believe it or not, I want to go. Four rounds is what it supposedly best, so I hope to finish at least 4 before him developing a HAMA. Besides after that round we start on 8 week cycles and that will be much easier to deal with than going every 3 weeks.
Tomorrow we will go to clinic to see Dr. Berkow. Taylor will have labs drawn to be sure that he doesn't need blood. They just want to check since we thought he needed blood on Thursday and then ended up not needing it on Friday. He will also have a check up with Dr. Berkow just to see how everything is going. Hopefully it will not take to long, I have had enough of hospitals lately. We will also refill his Gm for next time we go to NYC and his Accutane. He started cycle 2 of that. Hopefully his skin and bones will tolerate it as well this time as last time.
Taylor has been keeping us on our toes tonight. He is really into Blue's Clues and he has now figured out how to say smart in sign language like Joe does. He was showing Ca Ca when he got home. Joe also says thank you in sign language. While Taylor was showing Jim his sign language I asked him how do you say thank you. He looked at me like I was crazy and said "thank you". We just laughed at him, he was so matter of fact about it, like we were the silly ones. He also made us laugh at bath time though we had to hold that one in for a while. He was playing in more water than he has ever played in and having a grand old time. He all of a sudden decided that he would pour the water out onto the bathroom floor. We got on to him, but it was very hard not to laugh. He was just looking so innocently at us, but we could see the wheels turning in that little bald head of his.
Please continue to pray that Taylor is nearing the end of his treatments forever!!!! Pray that his body and skin can tolerate this Accutane and that it is also ridding his body of NB forever!!! Pray that his counts are recovering normally and he will not need any blood products to help him out. Pray that all his friends are being cured as well. Pray that we have a great 3 weeks at home and all goes well for the next trip to NYC.
September 21, 2003 Day +172
Taylor was up at 7:15 this morning. I doubt it is necessary to tell you that Jim and I were not ready to get up at that time. We did however get up and got ready to go to the Cracker Barrel. We always need good ole southern food after 2 weeks up north. It was a long wait, but worth it. Taylor was ready to go before us and I told him to finish eating. He proceeded to tell me, "no, get a box." He is to smart for his own good. We went to the grocery store and then home where Taylor napped for several hours. When he woke up we went to the nursing home to have dinner with Peg. Taylor had a blast with Uncle Dugan and a wheel chair. He was cackling so loud that I am surprised we didn't get thrown out. Taylor ate 3 cupcakes, no icing!! He came home and ate a bowl of pasta. He is doing so good with his eating.
It is now 9:00 and I know you are all ready to shoot me for just now updating after 3 days, but it has been busy!! Please continue to pray for Taylor's success in beating this nasty disease. Pray for all his friends that are in the battle as well and for the families that have lost the battle. Pray that the Lord allows him to be HAMA neg. or pos. based on what is best for Taylor. Pray that number 2 is still happy and healthy and will never endure even half of what Taylor has. Pray that Taylor never endures it again.
September 20, 2003 Day +171
Today was full of fluke mishaps that worked in our favor!! We got up at 5:30 and finished packing the few things that we had to have over night. We were in the lobby by 6:30 to check out. It is normally a fairly lengthy process, but today I just handed in the key and that was that. I guess since it was so early and we didn't have to wait on anyone to go check the room. Anyway, we thought we would be there for 30 minutes killing time until the car pulled up. The car was there early. At 6:45 we were driving down 1st Avenue towards the airport. The driver dropped us off in front of an empty check in line and we went to get our bags checked and then to get some food. Well, the ticket guy outside said there was a problem and that we would have to go inside. We go inside and find that that is where all the people were. There was a lady there trying to get people to check in over the phone rather than stand in the line. We told her we couldn't since we had a problem. The guy said we needed a certificate for Taylor. She looked it over and said that he was mistaken. He did not see Taylor's ticket and thought we were trying to fly without a ticket for him. That mishap allowed us to use a special phone that connected us to a agent that printed out your boarding pass and your luggage tags and you just walked up to the desk and got it all. She was also able to get us on a 8:25 AM, direct flight!!!!! We did not have time for food since we went form 2 and a half hours to kill to less than one. It is usually 100 dollars to change tickets, but it was only 25 this time. We are assuming that is because there were only 12 people on our 50 seat plane. So, by 9:55 (30 minutes after our scheduled take off to Orlando) we were to be landing in B'ham. As it turns out we were about 15 minutes early. We still had all day to kill, but it was to be done at home rather than the air. Taylor did well on the flight. He slept the first hour of it and then woke up. He ate a banana and played with his airplane. He never made a peep to disturb any of the other 9 passengers. He saw Papa and CaCa waving to us from inside the airport as we were coming off the plane. We headed for home where we played outside for a while before we headed to Hoover for a haircut. We had them even out the hair. She did the best she could. The short side was still not long enough to be buzzed evenly, but it is close enough. She said it was the first ever buzz cut she had done on a 2 year old. He had a hat on when we walked in, so it was kind of funny to see her expression when she was prepared to cut and then he took his hat off and had half a head of hair. He did great. He has always done good with haircuts, but he is older now and it has been a year since he has had one, so we were not sure how he would do.
We went to a cookout for Maw Maw's (GMom's new name) sorority. He had a blast playing on the hammock and feeding the gold fish. He really liked the big Harley that was there. He was gone by 9:00 in fact we all were. It was a busy day, but we are so glad to be home!!!
September 19, 2003 Day +170
Today was very long day. We arrived at clinic at 7:15. We had to tell Taylor that the hospital was having food to keep him from pitching a fit when we went past McDonalds. We did 3F8 as scheduled and he had no pain. I hate that since it means you are more likely to HAMA, but it worked out good since they don't like to sedate the kids with all the narcotics in them. Since he had no pain he had no narcotics. That didn't speed anything up though. We sat in our room for the rest of the day minus the hour we went to the playroom. His battery died in his pump and there was only one plug in the playroom and it didn't allow him to go where he wanted to go, so we went back to the room and watched TV. We were done with 3F8 by 10:30. He required a good bit of oxygen today. I think it was really the way he was laying with his neck down, but we had to keep giving him oxygen anyway. Finally Ester came to clear him for anesthesia, his lungs were totally clear when she listened, so he will not need nebs once we are home. He was scheduled to be put to sleep at 2:45 and go to MIBG at 3:30, but it kept getting pushed back. Finally ay 4:00 he went down to MIBG. I stayed behind since I can not go in the room. They had to call clinic and have me come down. He woke up and they couldn't get him to calm down enough to go back to sleep. It took about an hour to do the scan. He woke up with 16 seconds left to go. That worked out good since it was now 5:00 and it was time to close clinic. Since he was awake we just had to wait for them to de-access him, thankfully there was no waiting on him to wakeup. We headed straight for Subway and McDonalds. He was NPO all day and so were we. We were so ready to leave there, but all in all it was not a bad day just long.
Once we got back to the RMH and devoured our dinner, we started cleaning and packing. By 9:00 we were all packed and bathed and ready to go. Taylor was unpacking toys faster than we could get them packed. Finally I just hid it all until he fell asleep and then packed it up. Taylor fell asleep fairly easily after such a long day. We have a car coming at 7:00 in the morning to head to the airport. We fly out of NYC at 10:35 and land in Orlando at 1:07. We leave Orlando at 2:00 Eastern time and land in B'ham at 2:35. We are so ready to be back down south!!
As for yesterday. We had to go back to the hospital at 2:00 to get his injection of radioactive dye for the MIBG. We got there only to find out that he was supposed to take SSKI drops and they never gave it to us. We had to go back to clinic and have it ordered and then give him a dose before he could go back to the nuclear med department to get the injection. The clinic also never gave them his height and weight. They called to get it and they gave the right height, but gave them 11.9 as a weight. He weighed 13.1 that morning. The nuclear med lady called to ask Ester why she gave that weight. Ester's answer was that he got fluids and that made him weigh more. Well that is a nice answer, but it has been months since he weighed 11 kilos and he was weighed 3 hours before he was even hooked up to fluids that day. Ester is also the person who forgot to sign the Accutane prescription last month!! Anyway, we got it all worked out and we headed in to get his injection. Well, in walks Matthew, the radiology safety guy. He was full of fluff. He is paid to walk around with a radar gun and tell you how much radioactivity a person is giving off and how close you can get to that person without being in danger. He told me I needed to stay at least 1 foot away from Taylor. Like that is going to happen!!! He said I would have to sit right on Taylor for 50 hours before getting harmed by the dye in him. So it sounds to me that I was not in much danger.
Please pray that the scan and BM's are clean of NB!!! Pray for all our cancer family. See you in less than 24 hours!!!
September 18, 2003 Day +169
We are almost done with this round!!! Thankfully we were able to do bone marrows at 10:00, so we only starved him a little while. He was good about it though and didn't cry, but he did ask for a dough nut and tea. He was checked out by the NP first and they were concerned with the cough. They called the anesthesia doc to see if he wanted to give an IV med that temporarily dries up drainage so that it wouldn't complicate things, but he opted not to since it was asthma and allergy related. He did great and was awake as soon as it was over. We d not get to stay in the room, so I don't know how they got him awake, but he was only in recovery for about 5 minutes. We started 3F8 immediately following. He did 2 neb treatments again today. There is no more wheezing, but still a junky cough and runny nose. They feel it is allergic reaction to the GM. We have to go back at 2:30 to get his MIBG injection. That shouldn't take but a few minutes. Tomorrow will be the last day and it is only fitting to end it with a bang. He can eat up until 8:00 and then he is NPO until his 3:30 scan. He will be put under general anesthesia at about 2:00 and they will remove all the dressings that are on his 4 biopsy sites. I am glad they are removing those and I wont have to try to fight him later. The MIBG scan is over an hour long and it is freezing cold, so it will make for a long day combining nebs and 3F8. He did have pain again today, but not to bad. He had a little trouble keeping his oxygen levels up and was freezing and that was all due to the anesthesia, but it was taken care of with oxygen and hot packs.
We are trying to get as much history out of these trips as we can. We have visited the Statue of Liberty on the 4th of July, we made it through the black out and we were here for the 2nd anniversary of 9/11. Now we are going to ride out hurricane Isabel. It is not supposed to get to bad here, but they are saying tomorrow will be rainy and windy. Winds are predicted to be 40-6- miles per hour. We wont have to walk to the hospital tomorrow, we will just get blown. It is supposed to be gone and clear by Saturday, so hopefully we will have no troubles getting home. There are 3 hour delays at LaGuardia today due to weather. I hope all that is cleared up by Saturday morning. We have to get a connecting flight, so we do not need to be delayed. I have no idea how it all works, just get me to Alabama.
Last night the RMH had Italian food catered. Taylor ate pretty good after he fell out of his chair. He busted a blood vessel in his leg. We called good ole Rhonda and Rookie to see what to do. He has plenty of platelets and he is fine. We let the NP know today just incase she wanted to see it, but she didn't.
Well, that is all we know today. We will update tomorrow as soon as we are out of there. Please continue to pray for Taylor and all of his friends. Pray that we are able to get home on time and safely.
September 17, 2003 Day +168
Here is a poem that all of us that are now a part of the cancer family can relate to all to well. I thought I would share it with you all as it is a perfect description of how we all feel the days before and after scans as we wait for those results. The very results that can change our lives, again. It could be wonderful news and no action is needed or it could be the dreaded news that you must start again or there is no hope. No parent wants to here those words, so that is why we ask that you join us in a vigilant prayers to cure not just Taylor, but all of these innocent children battling for their lives. We also ask that if you are in Alabama or another state with a car tag that supports childhood cancer, that you buy that tag and support Taylor and all his brothers and sisters of his second family, the cancer family. It is a small price to pay to help raise funds for research and awareness of these tragic diseases that hurt our kids. There are mountain climbers and runners running for breast cancer, but very few are aware of the high numbers associated with children's cancers and that is sad. I am beginning to sound like the man on the feed the children commercials, but it is so true. We who are not faced with these situations do not realize how every little bit really does help, but believe me it does help. Enough of my preaching.... read the poem and the update is under the poem. Only 3 more days!!
A Sleepless Night
Tomorrow our lives could change again
Will the scan be clear, will the tumor return,
now... or never?.....
We try to smooth the ups, the downs,
Its been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
Tomorrow we'll sit while the bangs and clicks,
surround us.......engulf us
staring down the tunnel, waiting for the films,
that free us..... or damn us,
The probation could last for another four months
Or find us retreating behind false fronts,
That we take out tomorrow to hide the anguish,
around us..... within us,
Tomorrow our lives could continue on course,
or falter.... get altered
It's amazing to think that one simple test has,
Such power.....such impact,
To the world around us the test date comes,
one after another......eventually numb.
To the fact that tomorrow could leave us again
Tomorrow we hope that the treatments have helped,
change things....delay things,
Are there further treatments that we can survive,
do we want them?.....can we stand them?
Has the cancer been killed: Or does it lie there in wait?
Will it show up tomorrow? Or some much later date?
Tomorrow a crossroads, or merely a rest stop,
on a journey.....to eternity
Tomorrow our lives could change again
Tomorrow our world could be turned upside down
tossed asunder....it's no wonder
That we dwell in the past, trying to recall the way
That we made it through "tomorrow"
when it was yesterday
And why we hope to face tomorrow again and again
Today was day number 3 of this week and it is over. Only 2 more days of treatment and we will be done for this trip!!! We were up early today and at clinic by 7:00. Everyone wonders why we go so early. It is because Taylor likes to sit at the little table and eat and play and if we are not early he doesn't have time for that. That is the one thing he enjoys there, so why not let him do it. He sleeps through treatment, so he misses the story tellers and clowns. Anyway, we stopped to ask if a CBC was ordered since we have had such problems with that and guess what, it wasn't ordered. Dion put in the order and we went on our way. It was 7:30 and he was already in bed watching TV and finished with his CBC and all his other morning rituals. He weighed in at 29 pounds. He has gained enough to change the dosage of a few of his meds. Oh boy, more meds to make him swallow. He really does good now with his meds, no fighting anymore. He got two breathing treatments today. He is crackling in the upper part of his right lung. He sounds better, but will continue to get 2 a day for the rest of the week and we may or may not need to continue at home. He did much better today. We told him the breathing tube was a fire hose and an elephant trunk and he played around with that and let us do it with no complaints. He was asleep for the second one and it upset him at first, but he went back to sleep and didn't fight it. He did have pain today. That is good, but still confusing as you wonder if there is something in there or just a HAMA playing around in there. It all goes back to the poem. You get comfy right after scans then by the time it is time to do them again you have found a hundred reasons to worry again. One reason we can not quit this trial is that we are not ready for no treatment. I know that sounds crazy. Yes, we are ready to go back to normal and quite pushing meds and harmful toxic and painful treatments in his little body, but at the same time if we are always doing something it is a little reassurance that you are fighting anything that may be lurking in there.
We talked to Stacey, the lady who makes appointments for sedation and such. We are on schedule for BM's at 1:00 tomorrow. That is bad since he has to be NPO, nothing to eat until it is over. She may have an opening for him at 10:00, so we have to be there at 8:00 and she will know by 9:00 if he is going to get to go back at 10:00 or 1:00. If he goes at 10:00 we will do 3F8 after he is fully awake and has the Prophafal (SP??), sedation meds, out of his system. They can not mix that with his Dilaudid. If he is going to have to wait until 1:00, she will know at 9:00 and we will go ahead and do the 3F8 and then go back for the BM's when he is done with that and has had time to get some of the Dilaudid out of his system. He is also scheduled to get his MIBG injection at 2:30 tomorrow. It will be a long, hungry day, but it wont be to bad. I will try to update, but with all the guessing that will be going on tomorrow I may not get a chance to.
Last night RMH had Dallas Bar BQ catered. It was so good. We ate out on the terrace and had music and art and a tattoo stand. It was almost like home. We were eating ribs, corn bread, rice, baked potatoes and listening to The Devil Went Down To Georgia. I have never cared for that song, but some good ole, Southern, country music was much needed. Taylor ate a plate of rice, but it took a while since he was playing in the new play house that is on the terrace. He loved it. It looks like Santa may have to bring Taylor the log cabin that Toys R Us has. Anyway, he was playing very nice by himself and then some older boys came in and started climbing in and out the windows and getting on the roof. They never ran him out, but he jus stood back and watched. Soon they ran off to bigger and better things and I looked up and saw Taylor standing in the Window!!! He didn't cry when I flipped out and started yelling to get down, but I don't think he will try it again. He decorated a bandana with buttons and jewels. He also got a Lion King Tattoo on his tummy. I do not know why the tummy. I tried to get it on his arm, but he wanted it on his heart. That was to close to his port, so we opted for the tummy. He is very proud, but it is rubbing off since it is under his clothes. He is going to be mad when it is gone. Today was barnyard hayday at clinic. He got a sheriff hat and a big, horse balloon. He already got a big hat balloon that we have to take a picture of everyday. He pretends to be wearing it and then says "mama, pick pick". I guess now we will get a pick pick of him riding the horse. He held the balloon right in front of his face on the walk home, so we thought he might miss McDonald's but no such luck. He ate almost half the burger (he calls them boogers) though, so it was worth the stop.
Well, that is it for today. We will update as soon as we can tomorrow. Please pray for clear scans and complete healing. Pray that hurricane Isabel is not to much trouble for us here and does not hinder our flight home. Pray for all of Taylor's friends that battle this battle with him. See you all in 3 days!!!!
September 16, 2003 Day +167
In reality today was no longer than normal, but in the slow motion it seemed to go in, it took forever. Just like last Tuesday the CBC was not ordered. Since he got blood yesterday they did not want to draw from the line, so we had to wait for orders to be put in for the finger stick and got pushed to the end of a now long line of people waiting and we had already been there and hour. Cat finally just came and got us and brought us to the lab and had them do us next. He did have to get a shot. I do not know what his ANC was, but it was lower than 20. That is fine, his ANC is still really high, it just wasn't high enough to escape the shot. Today's shot really knotted up his leg and he screamed the whole time over the boo boo on his leg. He never had pain from the 3F8, but his heart rate was in the 140's due to all the screaming he was doing over the leg. He is coughing a lot and has a runny nose. I really feel it is outdoor allergies and such since he is always this way in NYC, but not at home where he is seldom outside. Tori, the NP said she would talk to Dr. Kushner about putting him on Zithromax to take care of it. Dr. K came in to listen to him for himself and agreed with me that it was allergies causing his asthma to flair up. He had us do a nebuelizer treatment and I assume we will continue them for a while, no one really said. He hasn't coughed anymore, so maybe it did the trick. I was a little upset that they did not order a chest x-ray, B'ham always orders one just to be on the safe side that there is no pneumonia in there. I feel strongly that there isn't since he is notorious for getting these little asthmatic episodes when he is sick. I am also not complaining that I didn't get to spend even more time dealing with MSKCC x-ray techs, but it is always comforting to see a clean chest x-ray. I am sure they will order one if this doesn't clear soon and if they don't I can call good ole Meredith:) Taylor was asleep when we started the nebs, but woke up and went crazy until it was over and then carried on over his leg some more. We finally were done by 10:45. It was no longer than any other day and we even added an hour wait for the Gm, but it felt like years sitting there fighting him. He is still in his stroller and hopefully taking a nap since he didn't sleep off the Benadryl in clinic. He never got Dilaudid, so hopefully he will be a sweet boy when he wakes up, if he is asleep.
Tomorrow we will see if pain kicks back in. I do not really expect it to and I really want it too. Since we have decide to continue on with this, I want to do it the right way and get at least 4 rounds in before he gets a HAMA. Hopefully, if he is developing one he will lose it like last time and be permitted to come back in 3 weeks. After that treatment we will start coming every 8 weeks and that will be much easier to swallow than every 3.
Please continue to pray for NED status of all scans done here and in B'ham over the next few weeks. Pray that the hurricane does not hinder our flight home and that we have a safe flight home. Pray that the week continues to go by fast so that we are headed south before we know it. Please pray for all of the families we have come to know in person and via the internet as well as those we have never met that fight this battle with us everyday. Only 4 more days!!!!
September 15, 2003 Day +166
Today was a long day, but a good day. Taylor got his finger prick and then we headed to the room. After sitting forever they came and told us we were in the wrong room. They usually do not change your room, but I noticed several people in the wrong room. It worked out for the best since the new room gets PBS and the other didn't. He missed his Clifford and Dragon Tales last week. We were ready with our shot this morning, on Monday you do labs first to see if you give it or not. We have never not given it, so it was a total shock to see his ANC was 26.1 and he did not need a shot. (the cut off is 20.) Thank goodness they said the GM was still okay to give tomorrow, so I did not have to throw that .52 away. That would have hurt my feelings bad!! Dr. Kushner said that he would probably drop by morning and need one tomorrow, but to hold off again until they check. It didn't hurt any of our feelings not to give it and it wont hurt them tomorrow either. He did end up letting his hemoglobin drop to 7.6, so we got the pleasure of staying for a transfusion today. It wasn't that bad, he only got 130cc, so it took about 2 hours. He was very good today considering we were there for 6 hours. I did get to see Dr. Kushner and I asked him about the pain issue and residual tumor cells. He said it probably just meant that he had enough HAMA to hold off the pain, but not enough to show up in the blood work. Taylor had no pain today, so we do not know if he will later or not. Kushner said it could go either way. He said it could be he is developing another HAMA and will not hurt or it could be that he had a rest to start developing a HAMA, but not enough of a rest and he will hurt mid week again. I don't know. It is all crazy, but if it works, that is all that matters.
After we finally left we went to the 3 Star diner for lunch and probably dinner too. Taylor of course ate nothing, but he did eat 1 1/2 dough nuts while in the hospital, so I guess he is good. He did not lose any weight over the weekend and he did not eat!! Go figure.
I think we have gotten ahead of the groundhog!!! This morning the milk truck was there and the man was sweeping the side walk, but the linen truck was gone, but he pulled up as we crossed the street. He was about 2 minutes late. He ruined our routine:)
That is all for today. I will update as soon as I can tomorrow. Please pray that this is the treatment that will cure Taylor of this disease. Pray we are home in a flash and it is a safe and uneventful flight. Pray for all of Taylor's friends. Pray that all his fevers and aches and pains are 3F8 and GM related and not anything more.
We will see you all in 5 days!!!!!
September 14, 2003 Day +165
Well, today was much better than yesterday. It was warm and sunny. We went to Toys R Us and rode the Mr. Potato Head on the ferris wheel. Taylor picked play dough as his toy. Fun!!! We then went over to Planet Hollywood to eat dinner. We forgot the sweet tea. The waiter was great and said that they had sweet tea. Well, it was that lemon junk and poor Taylor just shuttered with every sip. He finally gave in and drank milk. Our cab driver was so nice. He talked with Taylor and asked what he wanted to buy at the toy store. The driver on the way back took us right to the RMH door rather than leaving us at the corner. It was a much more pleasant ride than the Friday night experience.
Taylor never took a nap, so he was rather grumpy by 7:00. He took a bath and complained of his tt hurting. I do not know why, but if it continues we will mention it. He complained of a tummy ache all day as well. He finally went to the bathroom and it was a ton, so I guess his tummy did hurt.
He finally gave in and went to sleep around 10:00. That was about the end of the excitement for the day. The lab was closed when I came down, so I never updated, sorry. We did play down here for a while and Taylor left kicking and screaming. He did arts and crafts again. This time he made book marks and door hangers out of foam. He just likes to paint with the glue.
We start another week of 3F8 in the morning. Please pray it goes smoothly and is over in a flash. We are so ready to be home. All the rain on Saturday just prolonged the day. Pray that we have a safe and on time flight both from here and from Orlando. We do not have a direct flight this time. We get to go further south. We were supposed to go that way on the way up, but because of the mix up we didn't. It is a good thing, because I would have had a hard time not heading to Disney World instead of MSKCC.
September 13, 2003 Day +164
Well, it is finally the weekend, but it is a dreary one. It is only 70 degrees and raining here in Manhattan. We have been in the room all day. Taylor played in the greenhouse on our floor for over an hour today. There was a little girl out there that he enjoyed playing with. He was so funny copying her. She was about 9 and he did everything she did.
Last night we stood for 20 minutes to catch a cab to Outback. We finally got one and he didn't want to take us the entire way, so we had a little shouting match until he gave up and just took us the whole way. He didn't want to do it because the traffic was bad and I told him that was his job! Needless to say we just walked the 20 blocks back. It was a little cool out at that time of night, but not to bad. Taylor ran another fever last night and is doing so again today. I just keep giving him Tylenol and praying it is gone by clinic time. His nose is runny and beginning to be green. That is not good, so I hope that is cleared up by Monday too. If they try to admit me I will be on the first plane outta here with or without 3F8. I swore I would never go inpatient here again and I meant it. He is playing fine and finally ate fairly well today. He has finally pooped. I know you all wanted to know that. He has not gone in several days and it was a mix of constipation and not eating. He is probably screaming now. I got tired of waiting on him to fall asleep and I knew the lab was probably going to close soon, so I just walked out.
We hope that tomorrow is nicer weather so we can get out for a while. We will start on Monday with the last week of antibodies. We will do scans on Thursday and Friday and head home on Saturday. Please pray that all scans are NED and that we have a safe flight and an on time flight. Pray that this week goes by in record time with no complications. We can't wait to be back south. Only 7 more days!!!
September 12, 2003 Day +163
Week one is over, it is all down hill from here on out. Taylor had a very fast day today. His hemoglobin level went up to 8.4 (it was probably diluted) so we did not have to stay for a blood transfusion. He should go up over the weekend since he will continue getting shots and not get antibody. He got 2 doses of Dilaudid. I don't think the pain was any worse, but we did it different today than usual and it didn't work as planned. We gave the Dilaudid with the flush thinking it would kick in and not have to much pain, but it didn't kick in so he got another dose when the pain hit. He seems to be catching on to the game. He was screaming boo boo as soon as LaTisha started the 3F8. His heart rate was normal, so we do not know if he really had a pain or was just saying it. Our roommate yells for meds the entire time, but he is older and understands it. Taylor is pretty darn smart though, so maybe he is just playing us all! Speaking of our roommate. He gathers toys while in NYC as fast as Taylor does. His mom brought a bag full of toys to donate to the hospital, but she let Taylor pick something first. Of course he wanted the entire bag. He finally settled on about 10 hot wheels cars and a few bigger cars and a fishing game. He had a ball in clinic with his loot.
He is very grumpy today after getting 2 doses of the monster maker medicine. Hopefully it will make him sleepy and he will nap sooner than the 4:30 time he picked yesterday. Last night we woke him up around 7:00 and went to the 3 Star Diner for a dinner of breakfast foods, my favorite!! We went to the Rainbow store for Tylenol since he again had a fever that disappeared over night. Taylor picked a garbage truck and a school bus to buy with his money (that he conveniently didn't have:0) He also got a marker and stamper set that he had a blast with last night. Thank goodness he is de-accessed now and can get a bath tonight. He is covered in paint, glue, and markers.
As for the weekend we hope to go to Toys R us to ride the ferris wheel and to the park. We will eat at Planet Hollywood, we get frequent flyer miles from eating there. That is all we really have planned other than to finally sleep late!!! We will do our best to get to the lab to update. If not I will call Jim with the details, so be sure to come back and check. Don't forget to sign the guest book!!!!
Pray that Taylor is 100% cured from this disease. Pray we continue to have a smooth trip and we have a safe and on time flight to B'ham on Saturday. Pray that all scans are clear of cancer.
September 11, 2003 Day +162
It is starting to be like the movie Ground Hog day around here. Every morning the same Linen service truck is parked at the corner and the same man is washing the sidewalk in front of his shop. We go to McDonald's every morning and the man now how our drinks ready and waiting because he knows what we want. I guess routine is good!
Well, day number 4 is out of the way and we did have pain again today. It hit a little sooner than yesterday, but still towards the end. He had a bit harder of a time this time. His heart rate hit about 153 for a while. LaTisha said it was because it took a few days to get the 3F8 into the body and to the residual tumor cells. I have emailed the Doctor to see if he can further explain that. I pray that that is just how it all works and that by residual disease she does not mean he still has cancer in him. All the kids have pain, so I am assuming that it is just how it works, but still it is scary to hear it put that way. I guess pain is really good at that point then because you know that 3F8 is getting in there and working its magic!! Taylor's counts are beginning to drop. His WBC are down from 20.1 to 17. and his plts are down from 112,000 to 78,000. He also dropped his hemoglobin levels from 9.4 to 8.6. Today they went ahead and took some blood for a cross and type so that they have it if he does need to get transfused tomorrow. His labs were taken from his line today rather than from a finger stick and they say the line drawn labs are diluted from saline and heparin and cause them to be less accurate. I pray that tomorrow's labs are higher and he does not need to be transfused.
He asked to go to McDonalds on the way home and of course did not eat what he ordered. He was so ill from the meds that he is awful. The manager at McDonalds gave him a gold dollar to put in his money bucket that he is now carrying everywhere he goes. He of course proceeded to drop the bucket all over McDonalds, but they helped him pick it all up and get it all back in the bucket. We came back to RMH and tried to take a nap, but he is not interested. He refused to let me come to the computer lab without him since the playroom is down here too. He is now playing, but I told him when I was done he had to go upstairs and he could go kicking and screaming if he wanted to. This time it is easier to ignore him since I now know that all if the limping, fever, attitude and such is med related and goes away as soon as we hit southern soil.
Last night we walked to Wendy's for dinner. He refused to eat his because he did not want to eat at Wendy's, he wanted to eat at his big house aka RMH. We came back to the RMH to play bingo, but it never happened and we do not know why. We waited 45 minutes until Taylor had had enough and was asking to go upstairs, so we did. He finally fell asleep around 10:30. He did have fever again as he has had the past few nights. As usual we gave him Tylenol and it was gone by morning, so again we did not even mention it to clinic. He is 98.6 on the dot everyday at clinic and you can't ask for better, so I am not to worried. His nose is running a marathon, but it is clear and counts are great, so we are not worried about that either. We have decided he must have outdoor allergies. He never goes outside at home and here we are out and about most of the day and he only has a runny nose here. He did get a runny nose Saturday at his party and he was outside all day long. I will discuss it with Dr. Berkow when we get back to see what he thinks about my assumption.
Today is the 2nd anniversary of the 9/11 terrorist attacks here in NYC. It is a normal day here, but they did say that the weather is identical to how it was that day. It is absolutely wonderful outside. It is about 75 degrees and you actually need a jacket in the shade. It is so nice. They had a memorial service at ground zero, but that is all. Nothing is really going on around the city. We did hear on the news that they will not rebuild there other than a memorial to the lives lost that day. They say that want later generations to think this generation thought more of the lives lost that day than the building space or commercial success. That was Gulianis" speech the present mayor, Bloomberg didn't comment that we saw. New Yorkers do not like Bloomberg. Okay, now that I have updated you on the NYC news I will go.
Please pray that Taylor is still NED and will remain so forever. Pray he does not need a blood transfusion tomorrow. Pray that the rest of the 6 treatments go smoothly and are working miracles in his body. Pray for our new friend Tyler who was admitted. Pray for all our friends that are battling NB and other cancers. We will see you all in Alabama in 9 days!!!
September 10, 2003 Day +161
Day 3 is out of the way. Today everything went smooth as silk. We were in our room by 8:15 and hooked up and started on 3F8 by 9:00. He slept through everything and as soon as the second flush went in and it was time to be disconnected and go home, he shot up yelling "boo boo" and his heart rate went up to the 130's. That is not a lot, but pain is pain. He had some Dilaudid and was back to normal in 5 minutes. We do not know why he would get pain mid week, but hey it means it is working and that is all that matters. They will start him with Dilaudid tomorrow just in case and we will see how it goes. They will judge rather or not to do a HAMA test on Monday based on the rest of this week. Hopefully he has pain and we do not need to test for HAMA. I know it is crazy to want pain, but that is the sign of the antibody doing its job. He is a little grumpy from the Dilaudid, but otherwise fine. He ate half a cheeseburger and some fries. He is now in the playroom, but I hear him yelling, so things must not be going according to king Watts' plans!
Last night the Central Park Zoo came. They did a puppet show that Taylor enjoyed. He sat with his new friend Carter. Carter was much more cooperative in doing the hand motions and what not, but Taylor did pay attention. They passed around sent jars that Taylor turned his nose up at and they passed around a jar with a whole in it for the kids to stick there hand in to see what was inside. Taylor passed on sticking his hand in the black whole. Can't say that I blame him. It only had feathers in it, but you never know. They did bring 2 live animals. It was 2 huge hissing cockroaches from Madagascar. They were so huge and ugly. They let the kids and parents touch them, but we all passed!!! You all know how Taylor feels about bugs. He then went to make a frog mask out of a paper plate and tissue paper. They got to paint the glue on themselves and needless to say his is STILL drying as we speak!!
For dinner I walked to Dominoes and go a pizza per Taylor's request. He ate 3 pieces, so I guess he knew what he wanted. He finally fell asleep around 10:30 last night. I guess we will do that again. He is very sleepy from the pain meds and Benadryl, so maybe we can get him to take a nap. I need a nap today, I am very sleepy today for some reason.
Tonight is Bingo night. We will go if Taylor is not to grumpy and if not we will hang out in our room and watch more Wiggles and Blue's Clues.
Please pray that tomorrow and the rest of the time here is uneventful and painful (I know that sounds awful). Pray that nothing crazy happens here in NYC or anywhere for that matter on 9/11. Pray that we return home safely on the 20th. Pray for all our friends both new and old that are battling cancer.
September 9, 2003 Day +160
Another day down and 8 more to go. Actually it does not look as though we will finish this cycle since again Taylor had no pain. We did not give any Dilaudid at all today. He slept through it all since he was given benadryl and is still sleepy. He just ate some oatmeal and a cracker and climbed back onto the bed and is watching Blue's Clues, finally something different from Wiggles. I hate that he is not getting the benefit from the 3F8, but at the same time once your body gets HAMA it means you have kind of built a fighting system of your own. You want to get 4 cycles for the best benefit, but since they have set the number at 4 and don't follow the kids that don't get 4 we really don't know if 4 is the magic number, so maybe he got all he needed. We will finish this week and get a rest over the weekend then draw HAMA labs on Monday to be tested on Tuesday. We will not finish next week if he is positive. He will still have scans though, so our departure time will not change. Today was long again due to the fact that the NP never put in orders for a CBC and he is supposed to get one everyday, so we waited an hour and a half only to be told he wasn't getting one. We finally got to the bed area to be told he has to have a CBC, but they drew it from his line in the back rather than sending us back out to the lab. Hopefully tomorrow all will be ordered properly and we will get started on time. We were still out by 11:00, so it didn't really slow things up to much, just frustrating.
Last night we headed to the 3 Star diner to eat dinner. Taylor fell asleep in his stroller around 4:30 and he was out for the night!!! I woke up at about 3:30AM and he was lying there watching TV, he never made a peep and eventually went back to sleep. I woke him up around 6:45 to get dressed and get his GM shot. He was in a great mood, maybe he just need 14 hours of sleep to function! I can't believe he is still sleepy after all that, but oh well. He did have fever last night!!! It got as high as 101 and we gave him Tylenol and within 30 minutes it was back to normal. He had no temps at clinic today, so we never mentioned it. We feel very sure that it is GM and 3F8 since he was perfectly fine all 3 weeks and just boom he gets a fever and a cough. They say that GM gives them what is called a GM cough, so again we are pretty sure that is all it is. He is still cool as a cucumber, so pray it stays that way. I forgot to tell you all his counts yesterday. He had 20.1 WBC, wow that is high!! and ... drum roll please....112,000 platelets!!!! One of the 3F8 nurses was out of town last time we were here, but is back now. She stopped us to tell us she had her cup full of sweet tea. Our first visit here we left our extra tea with her when we left because she wanted to try it. We got her hooked. See we have made a difference in NYC!!!
Today we got to meet Carter, our NB friend for Pennsylvania. It is always nice to meet the people you have come close to via the internet. We are hoping to hook up with them this afternoon to have some fun.
Please pray for Taylor. Pray he has no more fever or problems and that he got the benefit needed from the 3F8. Pray for all his friends. We have to friends Matthew and Carter doing scans now to test their eligibility for the antibody treatment. Pray they are NED and get in the program.
September 8, 2003 Day +159
First day of antibodies is over. Today was a long day, but not to bad. It started off with off with a bang. Last night as we went to set the clock we learned that it did not work, so I called the front desk to see if I could get a clock. She said no, but she could give us a 6AM wake up call. Thank goodness we called Eddie and my mom to get them to call us because the RMH never called. You know me, I was furious that they can not do anything right, so I called the desk at 6:30 and told them to get me a clock if they could not be responsible enough to do the wake up call. He got all defensive and refused to say his name, like I couldn't walk downstairs and see who was there!! He called me back a few minutes later to apologize for not doing it, but he was in the bathroom. I do not care, you could call when you got out!! So, I told him he could talk to the manager or I could. As of now nothing has been done, so I guess nothing will. I have had my feel of this place. We have no remote to our TV and I am not so lazy that I can not get up, but they should have the proper things in the rooms. Our freezer shelf was taken and so we used another one and now that room has been filled and we have no freezer space. The list goes on and on. It is all small, but it just gets so annoying when day after day of every trip is filled with such madness.
As for the treatment. We were at clinic by 7:30 and eating breakfast. I don't know what method they used to call people in for a finger stick, but we were last to go even though we were the 3rd people there. So, it was after 8 before we even got that far. We then went to the exam room to be checked out by the NP. All was fine, so we headed to the bed area to get ready to start. They came in and said that we could give the GM. I did not bring it because last round I brought it and ended up throwing it away because they ordered it and gave it to him without ever asking if I had any. Well, today everyone questioned why we did not bring it. They have new rules every round!!! So, we had to wait for Dr. Kushner to come in to right orders so they could order it and then wait for pharmacy to fill it then wait an hour after it was given to start 3F8. Dr. Kushner wanted to see us, so back we went to the exam room and he re-examined him and said all looked great. We went back to the bed area to get his port accessed. The Emla had been on 2 1/2 hours. We were told last time it lasted 4 hours this time they say it lasts 2 hours. See what I mean about new rules. Anyway, he did not seem to be to bothered by the process. Finally at 11:05 (our normal departure time) we started 3F8. He was given the pre med dose of Dilaudid, but never needed any other because he had no pain. The feel sure he did HAMA, but lost it before the blood sample was taken. He seems to be recalling the HAMA. If he has no pain all week they will do a HAMA test on Tuesday to see if he is indeed immune to the antibody. I guess we will not finish the week if he is and I do not know if they can move up his scans and get us out of here any sooner or not. I am here now, so I hope he is not HAMA and that this daily trip to clinic is working not just a waist of time.
Taylor slept most of the time and woke up right at the end of his flush. He started eating french fries that were given out at the free lunch stand. He got ticked off though because they had macaroni and cheese on them. We sopped at McDonald's on the way back to RMH to get him a happy meal and he was chowing down when I left to come update. He seems to be in a good mood still, lets hope he stays that way!!
I will do my best to update. It is often hard to get in the lab, so bare with me. Please pray that our non-fun excitement is over!! No fevers, constipation, HAMA etc..... Pray for all our friends including a new friend we met today. Tyler is 3 1/2 and also has NB. Pray for his mom too, she is here from Chicago with Tyler and her 6 month old baby and she is all alone. She is a brave one!!!
September 7, 2003 Day +158
What a day, and it's only 9:45 in the morning. We got our tickets again through the social worker. When she gave Kim the tickets, she went over the flight times and such. She told us the flight left this morning at 9:25 AM. Well, we got to the airport at 7:45 AM this morning (plenty of time for a 9:25 flight) only to find out that their flight left at 7:00 AM. After looking closely at the E Ticket, the 9:25 AM time was the arrival time in Orlando (they had to fly through Orlando, which ended up being the cheapest tickets). We were floored, shocked, upset and mad all at the same time. You can imagine how Kim felt, I saw the tears fill up in her eyes immediately when I told her the flight had already left. Add to the fact that all of the Oklahoma fans were flying back home, the airport was a mess, and most flights out today were overbooked by 30-40 people. We really did not know what we were going to do. About the time it was our turn to go to the ticket person, I saw the supervisor that helped us last time we flew up. Being the desperate people we were in that situation, I flagged him down. At first he didn't remember us, but after seeing Taylor's bald head he remembered. God works in mysterious ways, and it was truly a blessing that he was there that day. He wasn't able to get us out to Atlanta at all due to the crowd of OK fans leaving. After looking and working on it for about 15 minutes, he was able to get them on a direct flight to New York that left at 10:20 AM. We owe so much to this person. We did have to pay to have the tickets changed, but at that point, we really didn't care, as long as we were able to get Taylor to New York in time for treatments in the morning. They will still fly home Saturday the 20th through Orlando, but we are so happy that things could be worked out by this person. I'm not sure when Kim will be able to update, but I wanted to let you know all that happened today.
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. 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...
September 6, 2003 Day +157
I will start today's update by telling you all what we did yesterday. Taylor finally woke up around 9:30 and ate a little of the McDonald's that Guh brought. They left to go to Wal-Mart and then to her house to spend the day. They played and watched the Wiggles and napped and did all sorts of things. Of course he got a surprise in Wal-Mart. He was playing with a Caterpillar that has letters and colors on its feet. When he hit the G it said Guh. That was amazing to him since he didn't realize that it was sounding out the letter rather than saying her name, so they bought it. Ca Ca picked him up after work and they came home to play outside. We played on the Gator and with little cars in the driveway. We even went for a walk down the street with Taylor on his bike.
As for my day. I got dressed and headed to Children's. I got our meds and needles that we will need in NYC and then I waited patiently for Kay to get all our ticket info changed so that we get to come home on time. We will be home by 4:30 on Saturday the 20th. I can't wait! Taylor's poor legs are already looking awful and he has only had 4 shots so far and has 13 left!! I am not looking forward to more pain and more "Angry medicine" or Dilaudid. Anyway, after I got our tickets, I headed home to clean. I had a nice system going. I would put a batch of our car shaped mints in the fridge to harden and go clean a room and come back to dump that batch and start again. I finally had the entire house clean with the exception of the playroom. I didn't even no where to begin. I finally just drug it all out in the hall and just started picking it up and taking it to it's home on the shelf. It didn't take near as long as expected, but it took long enough. I found a few things that I put in the yard sale pile. I could have found a lot more had I really had time. I was just finishing up when the two guys came in.
After we played outside we went to get sonic and then we started getting ready for the party. Taylor had a bath and then we put him on the couch to snuggle and watch cartoons while we baked and decorated the Bob the Builder cake. That turned into an ordeal. Our oven decided that that would be a good time to act up. After over an hour in the oven the cake was still liquid. The oven was stone cold!!! We played with it for a long time and finally turned it off and back on again and it worked fine then. We finally got the cake baked and we started the long job of icing it. We mixed all our colors and experimented a lot with colors and finally after about an hour and a half Bob was complete. He looked pretty darn good, too. We finally crawled in the bed around 12:30.
This morning we were up early getting ready and doing last minute things. The Spider man moon walk was here by 9:00 and all the balloons followed shortly. Taylor was a little skittish at first, but once he finally got in the moon walk, he had a BLAST!!!!! He spent all day outside in the moon walk to on the Gator. He did not want to come in. He was a little upset when the man came back to get the moonwalk. He was in it jumping and had to get out. He didn't cry though. He didn't eat at all until about 2:00. He was to busy to eat. We had a great time with all our guests and Taylor got some nice things from everyone. Thanks guys!!!
He was so funny. He was sitting on our ottoman while Jim sat in the chair behind him. Taylor was opening gifts while Jim opened cards. One card had money in it and Taylor looked around to see the card and he took a double take at the money and grabbed it and folded it and put it in his pocket. I taught him well! He did not want to let us hold it while he went outside, so we had to trick him. We told him we would fold it better so it would fit real snug in his pocket and we traded the big bills for two 1's. He was none the wiser, but I don't think that will work for to long. We had a great day and we owe it all to you. It was very special since he had to miss his birthday due to low counts and chemo in January. It was also so special that he could have so much fun and be so active and "normal" after all he has been through in the past 11 months.
After everyone left he continued to play outside until he could no longer hold his head up and had to come in and take a nap. He is rather grumpy tonight, but I would be too if I had played as hard as he has. It is 10:00 and he is bathed and sound asleep on our bed. Our bags are packed and ready to head out tomorrow morning. We take off at 9:25 AM.
Please pray for Taylor's continued success in his battle against NB. Pray that we have a safe and uneventful (no limping, fevers, and narcotic uglies) trip. Pray we keep all our power, too!!! Pray that all his upcoming scans are clear of any cancer. Pray that we are home safe and sound in 2 weeks. Pray for all our friends that battle this or other illnesses.
September 5, 2003 Day +156
Well, we finally made it to Friday. Taylor is going to Guh's house so that I can clean and do my last minute running around with out him. That will make it go much faster. We probably wont give another update today since we will be so busy. We will be sure to update tomorrow and let you know how his post transplant party goes. Taylor went to bed well after 10:00 last night which could be why he is still asleep at 9:15 this morning. It does make me uneasy for him to sleep so much, but he is not feverish, so I will not think about it. Easier said than done!! He went down stairs last night with Jim. Jim was laying out the new flooring and was letting Taylor play with a few scrap pieces of wood and a hammer. He walked to the garage side of the basement fore a minute and when he came back he realized the hammering he heard was not from the scrap wood. Taylor had been "helping" and hammering the freshly painted wall. It is nothing that can't be sanded and repainted, but I say we just leave it. It will give the room a homey look and be a reminder of all the help Taylor put into the project.
I have a silly story to share. How many of you have seen Toy Story? Well, I am beginning to believe it isn't so far fetched. When I was still working we had a little boy that always brought a Buzz Lightyear doll. One day when my co worker went inside to change a diaper she came back outside and said that it was talking. I thought she was crazy and didn't think twice about it. Well, when you work with a potty training group you spend a lot of your outside time, inside. When it was my turn to go inside for a potty break, I heard that silly thing just sitting there talking. I went to see if it was left on and it had a pull string. Hmmm?? Well, last night as I was stumbling down the hall towards bed, well after midnight. I heard a noise in the playroom. I stuck my head in and it was Taylor's remote control car, the one named RC from the movie. It was going back and forth. Now I know that it is probably low batteries acting silly or buttons getting caught and such, but it was so funny that it is always a Toy Story toy that acts crazy. If I find out after 25 years of living that toys do come to life, but don't pick them selves up I will be ticked off:)
As always, please pray for all our friends that battle the battle everyday. Pray that Taylor is just fine and we stay in remission forever.
September 4, 2003 Day +155
Well, it is another day. Today has been a little odd for us. Well, not really odd, but worrisome. Taylor has been limping since yesterday. I assume it is Accutane, but he doesn't do it all the time, so I can't tell if he hurts or is playing. That is the trouble with him being so young. He doesn't really tell you things. He said he leg hurt, but when I asked him to point to it he pointed to the top of his foot. He limps occasionally when he first stands up then occasionally while walking. He is walking on his tip toes too. I tell him to walk normal and he gets silly and starts flopping his legs out then I can't tell what he is doing. I assume we are okay, but it still bothers me. He has been mopey today and not wanting to eat. He has not eaten a lot the past few days. He started the GM shots last night and those tend to make his legs yucky. Please just pray that all is fine and he is just reacting to the Accutane and GM shots and that he is over it soon. Things like this are always a concern, but after the past week of hearing about 2 NB relapses and 2 NB deaths it is hard to digest.
Pop came over with his golf cart and Taylor had a blast riding it around the neighborhood. He helped Pop sweep and he played outside for a few minutes and he seemed to be fine, so who knows. I guess he is being 2! We have no plans today but to clean and get ready for Saturday's party. Taylor is going to go to Guh's house tomorrow so that I can do some last minute party preps as well as go to the hospital and pick up needles and syringes and our plane ticket info from the social worker.
Taylor just ate almost all of a pasta bowl and is now watching The Wiggles. He keeps laying down, but he wont go take a nap. I think he is ready to outgrow the nap thing, but I am not ready to let him yet. Well, I better go so that I can clean and pack. Modak calling and telling me to head north added about 25 pounds of pressure to me. I am trying to figure out what to leave out and what to pack and plan Taylor's party. I hate stress!!
Continue to pray for Taylor and his complete healing. Pray for all his friends too.
September 3, 2003 Day +154
One year ago today we were cruisin' around Las Vegas in a purple PT Cruiser. We were soaking up all we could on our last day in that fabulous, non-humid city. We were ready to come home to Taylor, that was the longest we had ever been away from him. We were ready to get home and start painting our house and get moved in. We were dreading work, but little did we know that in a little over a month after our return we would be faced with the biggest obstacle of our lives. Here it is a year later and I feel we have successfully jumped that hurdle. I know we have more to jump until we are finished with the race, but we have come so far. I remember on DX day the feelings we had. Feelings of how could this happen and how would we get through it. Now it is kind of the same, but we are asking how DID we do it. We did it with the awesome people at Children's and all of you prayer warriors.
Dr. Modak called this morning. He said Taylor is HAMA negative. I have mixed emotions on the issue, but I will be there with bells on:) We will leave on Sunday and come back who knows when. The 3F8 will be over on the 19th, but we have to do scans, so we will stay a little longer. Hopefully we will breeze though this thing with no pain since we did last time and still came out negative. I can deal with no pain. We shall see. Dr. Modak should call us back with a schedule for scans. Meredith is checking to see if Dr. Berkow wants other scans because NYC is only doing marrows and MIBG.
Meredith called and Dr. Berkow did want to do a CT scan and a bone scan as well as check catecholamine on September 30th. So, we will have a full work up and not get off schedule. NYC only does marrows and MIBG differently, so it is fine with me that that is all they want to do there. I assume we will stay until at least until Wednesday the 24th to do scans, but Dr. Modak acted like they would try to do them during 3F8, so we could leave. That suits me just fine!!
We did the speech evaluation today. It turned out that Brandi and I graduated together at Auburn with the same degree. We never spoke last names and such during all our talks, so it was a pleasant surprise to see an old AU friend at the door when I opened it. Taylor was accepted into the program and will have to wait until October to be started due to traveling. He will be seen 30 minutes a week. After he turns 3 in January he will be turned over to the school system if he still needs more help.
Please continue to keep us all in your prayers and all our other friends that fight this battle.
September 2, 2003 Day +153
Well, we made it out of clinic in an hour and a half. That wasn't bad at all. What was bad was stumbling out of bed at the crack of dawn to get to our 8:30 apt. only to remember while I was in the shower that I changed the apt. from Wednesday at 8:30 to Tuesday at 9:30. We got there and had labs drawn from his arm. He hates to have the tegaderm pulled off and he whimpers when she pokes his arm, but he never really cries. I know it doesn't hurt with Emla on it. One day I think I am going to put some on me before I go to the Dr. just to see how well it really does work. We went down to get the prescriptions dropped off and then back up to clinic to wait. We didn't wait but about 15 minutes. We went back to our room and only waited long enough to read 2 pages of Taylor's favorite book, Wendy Goes to the Doctor. Dr. Berkow came in and checked him out. He looked fine. His white count had dropped a little, but he is off the GM, so that is normal. His platelets were up to 79,000. I wish they were in the hundreds, but at least they are going up. His crit was 25, so no transfusions needed. He weighed 26.8. That was down an ounce or two, but no big deal. He didn't eat a lot this weekend, he was to busy. We will go back in 2 weeks on the 16th if we are not in NYC. If we do go to NYC then we will see Dr. Berkow when we get back. We will find out tomorrow about the HAMA test and rather or not we will head north on Sunday. I do not want to go, so I am not to upset by the fact that we are more than likely positive for the HAMA, however, if we are going to continue with this treatment I just assume finish the proper way which would be to not have HAMA. Oh well, I know that God knows exactly how we feel about this, so I will deal with however it turns out.
We will update again tomorrow and let you all know how the speech evaluation goes and about the HAMA.
Please pray for Taylor and all his friends.
September 1, 2003 Day +152
Hope you all had a great holiday. We did after we got through last night. Taylor woke up at about 2:30 and decided that was a good time to pitch a fit. After he threw everything off his bed he took a flying leap off the bed and started banging his head on the floor. We have no idea why. He got over it and got in our bed and didn't fall asleep until after 4:30. He Had leg cramps again, not like the night before, but enough to keep him awake and restless. Accutane causes bone pain, so we do not know if that is the problem or if it is still from all the running he did over the weekend. Tomorrow will be the last day for the Accutane for 14 days. If he goes to NYC he will have to wait until after the 3F8 is over to start the next round of Accutane.
We got up this morning around 9:00 and Taylor was in the best mood. We went to Lowes and got some stuff for downstairs and then we just hung out at home until 3:00 when we headed to Guh's house for a cookout. Taylor ate noodles instead of chicken, but at least he ate. We all sat around and talked and played some darts. Taylor, Drew and Blake played with legos and cars and everything in between. He had a blast. He pitched another fit on the way home because he realized he left his tea at Guh's. Thank goodness he was quiet after Jim told him he would turn around and go back. However, we were just shutting him up, when we pulled in our driveway he flipped out. He settled down when he found some Reeses Puffs cereal. He is now watching The Wiggles while laying in the bed. Hopefully he will fall asleep.
We will go to clinic for labs and to see Dr. Berkow tomorrow morning. Hopefully it will be a quick visit. I am already dreading it. Taylor is covered in bruises. I hope he got them from being outside this weekend and not due to dropping platelets. On Wednesday Brandy, from the Hope Program, will come do another evaluation on Taylor's speech. We should know then if he will qualify for the program.
Please pray that Taylor remains in remission for ever. Pray for all his friends as well. Please pray for our friend Meagan's family. Meagan lost her battle with PNET, a brain tumor, over the weekend. Pray that her family finds the strength to get through the coming days. Pray for the other families that lost their little ones to this nasty disease. www.caringbridge.org/al/meagan www.caringbridge.org/al/austin www.caringbridge.org/al/janiesims Remember Jake, Christi, Chris, Levi, and Katia as they continue treatment.
Back To Top
August 31, 2003 Day +151
Well, we are saying goodbye to another month. August 2002 was one year ago. One year ago yesterday we closed on our house and flew to Las Vegas. We spent the weekend in Sin City and spent Labor day in California at the Auburn USC game. As much as it sounds the same as this past weekend, it was so different. Different in that we were still a normal family that was one step closer to that all important, American dream. The week before we left for Vegas we took Taylor to the Dr. with a bad case of the runs and a slight limp. We left him that Friday afternoon thinking he had a virus. We returned the following Tuesday to find out that Taylor had continued to feel poorly while we were gone. That weekend was the beginning of a very long journey to diagnosis. It is now a year later and though we have had a very rough year, I can honestly say that this August was better than last. Better because we know why he was limping and we know that we did everything we could for him. It is better because for the moment anyway, we have beat the odds and won the battle. We still have a long way to go with treatment and we still have the fear of relapse to live with, but for now (and forever we believe) we have a healthy, "normal" two year old. For that we are thankful to God and all of you!!!
Taylor has a full layer of peach fuzz on his bald side now. We are hoping that within a week or so we can go have it buzzed to one length and soon we will see a normal hair do again. He is full of energy today. We attempted a nap for several hours and never made it. He was determined not to nap and he won. He is now playing and eating popcorn. He is a popcorn lover!!! We have done a lot of nothing today. I did a load of laundry and Jim cleaned out the new room, it is now ready for paint and flooring and we will be done!! As soon as the room is done we will move all the toys and get that room set up for the new baby. Speaking of new baby, it needs a name. Why not run it by all of you. We like Logan Riley, Tucker Riley, Trevor Riley, Sawyer and that is all we have come up with. What do you think? Any ideas?
We hope you all have a wonderful Labor day!! Keep us all in your prayers and all our friends too. Here are a few more sites of our friends. www.caringbridge.org/al/ally Ally is 1 years old and fighting ALL. www.caringbridge.org/al/gracie Gracie is also 1 and has recently finished transplant. www.caringbridge.org/al/alexislindsey She is in remission from Medulloblastoma and is doing great.
August 30, 2003 Day +150
Gone to the Auburn/USC game! War Eagle!!!!!!
What a long day, but it was a blast. We left home around 9:00 and got to Auburn with no problems and surprisingly little traffic. After we jumped the curb for a parking spot, we headed to our spot and set up our new tent with sides and all for "Accutane Boy". He has not been allowed outside in so long, that he was content just playing around the tailgate spot. He had no idea all the fun was yet to come. We walked to the athletic museum and walked around and then went for a very long walk to meet the Watkins. The walk was well worth it. These are the totally awesome people who arranged our flights to NYC last time so that we did not have to drive to Atlanta. They welcomed us into their gorgeous RV and we sat around and talked and had a great time. Papa and Ca Ca walked back and got the car, so that Accutane boy and prego didn't have to walk back. We stopped for some Guthrie's and then took it to our tailgate spot and rested. I stayed behind while they went to Tiger Walk. It was so crowded, I don't think Taylor knows that any players went by, but he enjoyed the music and all anyway. He wanted to walk back, so he did and it was about 3 blocks. We rested some more, infact Taylor and Papa went to the truck to cool off in some air conditioning. Soon it was 4:00 and we headed to meet the wonderful family that gave Taylor, Jim, and I our tickets. We are so appreciative of the tickets that were in the most wonderful location..... shade!! We were on the shady side of the field with the upper deck covering us, so we were set. When we lived in Auburn I babysat for Jeff Thompson, the head gymnastic coach. He, his wife and 2 kids had the seats in front of us. It was wonderful to see them and Taylor enjoyed playing with the bigger boys. Taylor watched all the pre game stuff, but was asleep not 2 minutes after kick off. He slept all through the 1st quarter and could have slept longer, but we woke him up repositioning him so often. He had just enough nap to be raring to go, so up he got to dance and shake shakers and eat nachos. We stayed until there was a little over 6 minutes left in the game. He was good as gold never cried or acted out at all. Once we were back at the tent we changed him into some dry, non sweat covered clothed and got him some dinner. We hung around an hour or so waiting on traffic to die down a little. We saw a ryder truck knock the mirror off a Mercedes. The guy didn't care. I guess if you have that kind of money and you are willing to leave it parked in the street it is okay if it gets sideswiped. Oh well!! We left at about 9:45. Living there for 5 years and knowing 101 back roads was sure helpful. We beat all the traffic out to 280. It was a little slow go on the 2 lane part, but once it hit 4 lanes it was smooth sailing. We were home by 12:30. Taylor never missed a beat while moving him into the house and I think Jim and I were sound asleep by 12:45. I woke up at 2:45 with the most painful leg cramp. I shot straight up from a deep sleep and was instantly in tears. I finally got it to quit hurting and went back to sleep. Exactly one hour later, Taylor shot up with instant tears rubbing his legs. Poor little guy. I know he was exhausted.
We know Taylor is a true Auburn fan. While he was asleep they played the fight song. In his sleep he had his little hand formed like he was holding a shaker and he was just a shaking that arm.
Though we had a terrific weekend and had a chance to be "normal" for a day. We know all to well that we are not normal anymore and probably never will be. While we were off having fun we had many friends inpatient or preparing for the next step. Please keep them all in your prayers as well as Taylor. Also pray that our friend Todd who was released from transplant on Friday continues to do well. Here are a few sited you all should look at and offer support. www.christithomas.com Christi was diagnosed almost one year ago and is unresponsive to chemo and has never been NED. www.caringbridge.org/nc/hopefor Jake is having a very hard time recovering from his 25th round of chemo. (Taylor has had 7 rounds of chemo) www.caringbridge.org/al/todds Todd is a teenager who just underwent transplant with donor cells. He is Boston and we all know how it is to be so far from home. www.caringbridge.org/fl/chrisbecker Chris recently relapsed for the 2nd time and again faces more chemo. Unfortunately there are many more. Please remember all families that are facing this battle. Some do not have websites or maybe I do not know them, but they still need all our prayers to get them over this hurdle.
August 29, 2003 Day +149
TGIF everyone. Today we went to Wal-mart to buy a canopy to sit under tomorrow at the Auburn game. Talyor can't be in the sun, so we had to get something for him to be under. He is so excited to be going to "go go go". I am not sure how long he will last, but he will enjoy it. This will be his first football game. We met Ca Ca for lunch and ran into some old friends. We ran into parents from the day care I worked at before Taylor got sick. It was so great to see you Wade and Missy! I had to call Meredith today. Who'da thunk it, me call Meredith. I am so used to flushing his broviac myself that it never hit me that he would need to go get his port flushed. If he continues going to NYC on schedule that will be adequate time to flush it without having to do it here. It needs to be flushed every 8-12 weeks. If we get off schedule we will do it in clinic. Not a big deal, but it just all of a sudden hit me today that I had no idea how that worked.
Taylor is now trying to take a nap. He will not fall asleep. I don't know what we are doing tonight, but we are leaving early tomorrow to head to Auburn for the game. It will be very late when we get home, so we will probably not update until Sunday. Everyone have a great/safe holiday weekend. War Eagle!!
Please keep praying for Taylor and all his friends that are also battling cancer.
August 28, 2003 Day +148
UPDATE: They still couldn't tell. Those stubborn legs are still crossed up. It took 4 tries with Taylor, so I guess we will keep trying. We have to get another one anyway since the baby is face down and she could not get a good look at its face. I go back on September 30th. The good news is I do not have gestational diabetes. Three of us drank the sugar water and then came back an hour later to have our finger stuck. You have to be 140 or less not to be diabetic. The first girl was 147 and the second was 163. I was a nervous wreck thinking I was going to have to prick my finger everyday and live life without my coke and chocolate. I was 95, thank you God!! He knew how much I need those sugar items.
Well, I guess we will try again next time. Please keep the prayers coming for Taylor and his complete healing. Also remember his friends Levi and Chris that have relapsed with NB and his friends Christi and Jake that are still undergoing chemo to reach NED status. Oh yeah, one more thing. It's a boy!!! I know, I know that was a rotten way to do it, but hey I had to have a little fun with it. I thought I would cry, but I didn't. The dr. told me to have a 3rd, I told her not to try and conjure up business with me, there will be no #3 coming outa this body!! Well, at least we don't have to buy all new clothes or bedding. All is well with it and we really do get another one on the 30th due to it being face down.
We have several prayer requests this morning. The first one is for our friend Levi. We met Levi and his family at camp this summer. In fact his brother is the child whose hands we "borrowed" for our family tree when Taylor refused to get his hands dirty. Anyway, he is one of the 3 kids that have been treated at Children's with Neuroblastoma. He is a year post transplant and has recently found out he relapsed and will begin chemo again and possible do antibody in NYC. Please keep him and his family in your thoughts and prayers as they again start down the cancer path. Pray that he is quickly put back in remission and is able to stay there for years and years and years!!
Also, we are heading to the Dr. for mommy today. Pray that baby number 2 is healthy and developing correctly. Pray that it is not stubborn this time and we are bale to see the gender no matter what it is, although you all know my feeling on that. Also, I do the diabetes test today. Pray that is normal I do not have gestational diabetes. I could never function as a diabetic, I NEED coke and candy to much!! That is also why I NEED to lose 30 pounds, but as I said I can't function!! Ha, nice try, huh?
We will update as soon as we are home with any info. Please remember all our friends, but especially those in desperate need right now...Levi, Christi, and Jake.
August 27, 2003 Day +147
Today we headed off to clinic to have labs drawn. He had a CBC and his HAMA drawn. It took forever to convince the lab tech to draw it. Last time he still had his broviac, so his nurse did it, but this time she was to take it from his arm when she took all the rest. She didn't want to do it. We had to go get a clinic 5 nurse to come over and tell her to do it. Anyway, she did it and we are waiting for the FedEx man to come and get it. We waited on his lab work so that I could check on his platelets. They were only 60,000. They did go up, but only 2,000. Dr. Berkow said just be glad they went up and stop worrying, so I will.
We also talked to Kay about our tickets. She said to go ahead and buy them and if we end up not going she and Dr. Berkow can write a letter to the airline and get the fee to change the date waved, so Jim and I will do that tonight. They are already 600 and something per ticket. We will get refunded for 2 of them, but will have to buy the third. So, If anyone has any Delta frequent flyer miles that you would be willing to donate, they would be greatly appreciated. Delta takes donations in increments of 5,000 and it takes 25,000 to buy a continental US ticket.
Last night we went to dinner at Guh's. Taylor did not eat to much during dinner, but while she cleaned up he ate a cup of corn, 1/2 cup of green beans, and 2 slices of ham. Once we got home he ate another whole bowl of pasta. He has turned into quite the little pig. He weighed 27.7 this morning and was 35 inches tall. So far today he has had a cup of strawberry applesauce, a pack of tater tots, and a whole bowl of pasta. He is gonna hit the big 30 mark soon and I can't wait.
We got an odd package in the mail today. NYC sent us all the scans that Children's sent to them when we first went to NY. I wasn't sure what to do with it so I called Meredith (of course) and she said they are copies and we can have them. It was very interesting to see all the scans side by side. You can actually see the progress that was made all the way up to the clear scan in May. It also has the radiologists write up in each one and that was interesting to read. I had never seen the original diagnosis scans since I was at work. I kind of wish I had never seen it, but as long as the next scan said it was all clear I guess it was okay.
We saw Mrs. Linda from Camp SAM today. We are registered for Family camp in September. We are also scheduled to be in NYC that weekend, but if he has HAMA we will go o camp instead. I would much rather be at Camp SAM having some fun rather than be in NYC.
Keep Taylor and all his cancer buddies in your prayers. I don't know if any of you have heard that Clay Walker song that says "I can't see how this world can put a man on the moon, but we still need a place like St. Jude?" That is a great question. Please pray that someday very soon, we don't need those places. Or at least that we are sending our kids there for cures not trials that may or may not work. I know that these trials are how we will get the cure, but I hope they figure out which one is the cure soon.
August 26, 2003 Day +146
Today was another stay at home day. We have done absolutely nothing. We are both tired and have layed around all day. I took a shower and got dressed thinking that I would wake up and feel like doing something, but no such luck. Maybe tonight I will clean up the mess that Tornado Taylor left in the living room and playroom. We have pretty much stopped cleaning the playroom since as soon as the room downstairs is finished all toys will go down there. I do need to at least clear a walking path in there:)
Taylor ate very little this morning and another side effect of the Accutane is loss of appetite, so I let it slide. I guess he just didn't want oatmeal because at lunch time he ate an entire pasta bowl by himself and has had about 4 sugar wafers for a snack. He has not drank a lot today, but other than that he is doing pretty good. His face is starting to get really dry especially on the left side. It burns to put the lotion on it, but we make him. He took a bath this morning because he wanted to play with his boats. It was bath day, so I let him and at least I got it out of the way and wont have to do it tonight. He has to bathe with Dove moisturizing soap, so he doesn't smell "baby sweet" oh well. At least he doesn't feel like a lizard. He always sits on his potty chair before a bath but nothing ever happens. Well, today it happened and it happened in a big way. He pooped on the potty!!!! Yahoo!!! I really think it was already there and had just not fallen into the diaper yet and it just happened to fall in the potty when he sat down. However, we made a huge deal out of it and hooted and hollered all over the house, so maybe now he will at least have some interest in sitting more often.
We are about to head out to the Dollar Store. I need to get some of those things you put on door knobs to keep kids form opening them. Taylor has been brining me stuff from the bathroom closet all day. He has only brought me a thermometer, a band aid, and a glove, but that closet is full of all his and our meds plus broviac supplies, syringes and needles.
Tomorrow we go to clinic to have blood drawn to ship to NYC to test for HAMA. FedEx will come to the house between 12 and 3 to pick it up. I just thought the post office was high, FedEx is $25 for a box that wont even register on the scale (he had me put it on the bathroom scale). As you know we have mixed feelings on the 3F8. We will be continuing, so we would kind of rather just go ahead and stay on schedule and get the first 4 behind us, but at the same time a HAMA would give us a break from travel, treatment, and give his platelets to come up. So, you know the ropes, pray. pray. pray!!!
Well, I guess you can say we had a little excitement today. He is bouncing off the walls now because he just found his wallet. Anyway, please remember to pray for Taylor and all his friends both young and old, near or far that are battling cancer. Pray that a cure to NB is found soon and that he never has to endure more chemo and such after he completes this protocol. Pray that number 2 is growing and developing on schedule and is born healthy and never has to endure anything his/her brother has endured.
August 25, 2003 Day +145
Today is Monday, again. I know days don't really matter much to us since we are home 7 days a week, but it really does. It gets old staying home everyday. It isn't like I am rich and can go to the mall and spend money!! Anyway, I did not want to get up this morning. Not after last night. Taylor refuses to sleep in his bed. One of the side effects of the Accutane is nightmares and I assume that is the problem. Anyway, he is in our bed again and right under me. Well, he was gracious enough to let me stay in the bed, but he brought ALL his toys to my bed and played. I finally just got up and fed him, again! We did nothing all day until daddy called to see if we would meet him for lunch. We went to the Olive Garden and Taylor ate about 4 pieces of bread, but none of his pizza. After we ate we went home. We were going to go to the Halloween store and Mal-mart, but he was being a crab apple, so we came home to nap. Again it was me napping and him playing.
Jessica from the National Childhood Cancer Foundation called and told us to buy 2 tickets to NYC and then call her back and she would refund us as well as our next 2 months of money to spend in NYC on taxis and such. Well there is a catch. We will not know until next Wednesday if we will go or not, so I don't want to buy tickets and be stuck with them. So, who knows what will happen this time!!! I hate this. I was praying for HAMA for a break, but at the same time praying for no HAMA so that he will get all the benefit from it. So, now I am just lost!! I hate this.
Also, Brandi from the Hope Program called and she will come out next Wednesday to further evaluate him. He is qualified based on speech, but she evaluates him on 5 other things. So, more than likely he will start therapy sometime soon. I am not really sure how it will work. We will find out all that on Wednesday.
Well, again that is it for the day. It was not exciting, but those days will come later in the week with our clinic visits and my diabetes test and ultra sound. Are you all still thinking pink? Really we want happy and healthy, but you know. Until tomorrow.....
Keep praying for the complete healing of Taylor and all his cancer friends.
August 24, 2003 Day +144
Today was another do nothing day, well do little day. We slept until 8:45, wow!! We got up and cleaned and watched TV and such. I went to a wedding tea for a few hours and left the boys to do boy things or watch the Wiggles. When I got back we went to... yep, you guessed it, Wal-mart. You could go everyday and still not get all you need. When that was done with we came home and Taylor and I played ball in the driveway while Jim cut grass. Now we are just hanging out inside and while Jim and I could go to bed, Taylor is full of energy.
Nothing big to report and as usual, we like it that way. We have no plans for tomorrow, so there probably wont be much to report. However, I will be back sometime tomorrow to fill you all in on whatever does happen. It is very therapeutic to me to write on this page. I am able to get out all my happies and crappies.
Please remember to keep praying for Taylor and all his friends from all over that are battling this disease. Pray that number 2 is healthy and developing all it needs to right now.
August 23, 2003 Day +143
Today was full of goofing off as was last night. When Taylor and I layed down to take a nap he asked if Ca CA would take him to "malmart." A Wal-Mart man is a man after my own heart!! So, when Jim got home off we headed. We went to Costa's for some good pasta, pizza and awful service. We were all three thirsty and Taylor had no high chair or booster seat and could hardly reach his food. We finally left there and headed for Taylor's requested stop and he had a dollar in hand to spend. We ran into Misty, one of Taylor's old teachers and a coworker of mine. It was great to see someone from work. Once in Wal-Mart Taylor went right for the balls and then to the bike isle. We ended up with a Blue's Clues movie. We have already watched it a million times.
We slept until about 8:30 this morning. We went to the Waffle House. That was my craving before we went to NYC, but it was always to crowded, so this time I got it. Although, it was not worth it. We were there over an hour waiting on food. They were very behind and Taylor let everyone know his disapproval of the situation. He was fine after I went and got Night Night out of the car. We went back home after that and G-mom came and kept Taylor while we went to Old Navy and Babies R Us. We looked at the double strollers. Wow, those things are like SUV's. There is no way I could push that thing and not take a few racks or peoples feet with me as I went by. It was so long, I would need an intercom to tell the kid in the front to sit down. It was also very heavy. We have two strollers, so we don't really need a double one, but I know there will be days that I am in clinic or what not with both kids and Taylor does not walk if he doesn't want to and that could get ugly. Oh well, we will see. We came home and took a nap until 6:20. We will probably be up all night, but that is okay because we need to finish cleaning up. That is what we had planned to do after shopping, but slept instead. I don't see anything wrong with that, do ya'll?
We had dinner with Chris, Temperance, and Christian. Taylor and Christian enjoyed each others company. Christian stared at Taylor's fries and burger and Taylor stared at his baby food. The dietician had suggested giving him rice cereal to put on the pounds, but I though there was no way he would eat it. Maybe I was wrong. We are all home safe and sound now and just doing nothing.
Please remember to keep Taylor and his complete healing in your prayers. Pray that we will be able to see the gender of baby #2 on Thursday even if it isn't a girl. However, no need to quit thinking pink! Pray baby number two is healthy and doing okay in there. Pray for all our friends that are battling this disease and all the families that have lost the battle.
August 22, 2003 Day +142
Today was lab day. We had to go to Children's just to get blood drawn to check and see how the Accutane is effecting his calcium, phosphate and liver functions. There was a little confusion as to who would draw the blood, lab or clinic nurse. We kept getting sent back and forth while they decided who would do it. We finally went over to the lab and had it drawn. Taylor is so greasy from all the shea butter lotion that he is coated in that his tegaderm wouldn't stick to his arm. Accutane causes the skin to peal and that is why he is greased up. His body looks fine, but his lips have red spots and his cheeks are getting dry. I have been putting lotion on those spots, but not as much as the rest of the body, so I guess we need to do that. He isn't complaining about it, but I am sure he will soon enough. We still do not have a mine, so maybe that will help some. Anyway, the Emla worked even though the tegaderrm didn't. With all the confusion he ended up wearing the Emla for an hour. That is fine over his port, but over his arm it not only numbs the arm, but the vein too. She had to dig around for it since it wouldn't pop up. I guess the cream worked because he didn't cry. I would have been going bananas, but not tough man!!! All his counts came back fine, so we were on our way. We went up to 4 tower to see Meredith and Rhonda. We went to eat lunch with Rhonda and Rookie. We enjoyed it guys!
After all that excitement we went to the Galleria to meet daddy. Jim at lunch while we watched. Taylor rode the carousel a few times and then we headed for home. It is a little to late to take a nap, but I need one, so I think I will push it anyway.
That is it for info on us today. Isn't it great how boring and normal our days seem to be. We will update later in the weekend. Not much will be happening since Taylor can not be in the sun. Please keep us all in your prayers as well as all our friends also walking this path.
August 21, 2003 Day +141
Today is a wonderful day for us. Not just because we are at home and have no running around to do, but because we can finally exhale that breath we have been holding in for over a week now waiting on the bone marrow results. It is such great news that those marrows were negative for any NB. That was the one test that I was worried about. We will get the whole battery of tests in September. Again, we will hold our breath, but it will be a little easier then knowing we have had these good results and have spoken with our Dr's about all our concerns. Today is a wonderful day for us, but a hard day for several of our friends. Do you all remember us mentioning Claire wife and mom who lost her battle with ALL in June. Today would have been her and her husbands 21st anniversary. Please drop by and offer him and his family support. www.caringbridge.org/al/claire Today is also the one year anniversary of Austin's diagnosis with AML. Please stop by and offer his mom and sister support on this day. www.caringbridge.com/org/al/austin On a happier note, today is the one year anniversary of our friend Amber's remission. Please drop by and congratulate her. www.caringbridge.org/al/amber
Taylor is being CRAZY today. He has been up since 7:00. He is in a wonderful, silly mood. However, he is so silly that he is not minding and I am having to chase him to change his diaper and he ran away after lunch without cleaning his face and I now have a spaghetti stain on the couch. Just little things, but enough to run me ragged. He is now asleep in the living room floor. He has played so hard today he will probably sleep a while. He has eaten really good today as he did yesterday. Daddy has to work late tonight, so we are going to go out with Guh.
We have come close to getting rid of mine (pacifier). All of his mines have holes in them and so they collapse when he sucks on it. He hates it and wont suck it, but we refuse to buy any more. He has slept the past 2 night without one and went all day yesterday without one. Today he has found an old fashioned, all rubber one that he is using. It looks crazy because it has a handle that is longer than the part in his mouth. He is used to a round one so he doesn't realize that the little notch is for his nose and he sucks it upside down and his nose wiggles. It is very funny, but I hope he doesn't get attached to this one.
August 20, 2003 Day +140
UPDATE: Dr. Modak emailed us with the results of Taylor's bone marrows. They are NEGATIVE!!! That is such great news. Keep those prayers coming, as you can see they are working!!!
Today we went to clinic. I was very anxious to see what his counts were. Of course since I was anxious it took forever!!! We were there 3 hours and 1 and a half of that was spent sitting in the exam room waiting on Dr. Berkow. He had a urine bag put on first thing and then weighed. He was 27.3 pounds and 85cm or 35inches tall. He is getting so tall and finally gaining to weight. He weighed 27 pounds the day he was diagnosed, so we have finally gotten back to that number now we will only go up. He had labs drawn from his arm and he didn't like it. He didn't cry, but he whimpered and wiggled. I think he is like me and I am backwards and not afraid to admit it. I would rather have my finger stuck than have my arm stuck any day. We sat in the waiting room and colored and looked at pictures that were taken at Camp SAM. He loved looking at pictures of himself and all the new friends he made. He remembered a lot of the things he saw, he looked at the book for about 45 minutes. He usually holds his urine when he is bagged, but today he went right away, but he also pooped. Figures huh!! Ruth came to get the bag, but it leaked all down his back and shirt. Of course I didn't have another shirt, so I washed it off best I could and we just dealt with it. We ended up having to bag him again since we lost so much of the first bag. He again went right away, but again he pooped!! This time we didn't lose any, so we should have results to the test soon. Last time his urine test was normal lets pray this one is too!!! Dr. Berkow finally made it to us and did an exam. He said all looked good, he even found a few hairs growing in on his bald side. Yahoo!!! His counts were in too. Ready, drum roll please, platelets were 58,000 up from 38,000 on Thursday. That is great news for us that it is more than like just 3F8 related and not marrow disease. We still do not know the results of the marrows, so keep praying for clean results. His white blood cells were 4.62 which is 4,620 and 44% of those are infection fighting and that is great !!!!! I got some news today. Not necessarily bad, but it should make for interesting days. I am not to change his diapers unless it is absolutely necessary. Well, it will be necessary since it is just me and Taylor at home all day. I tried to talk Richard, a NP, into coming over every time I called to do it, but he wasn't interested:)
We left the hospital and went to the Galleria. Why you ask? This morning Jim gave Taylor a dollar to use at the vending machine at the hospital, but he had other plans. He said "me round and round" meaning that he was going to use his dollar to ride the carousel. We ate lunch and waited on daddy. Daddy and Taylor rode the carousel and then visited daddies work while mommy went to the dentist. No cavities. I still need to get my wisdom teeth out. but that will have to wait since I am pregnant. I must say I am not too disappointed to have to wait. Unfortunately 2 of them are crooked and will be hard to get out and painful, but they are damaging the teeth they are pushing on, so I have to get them out. YUCK!!!!
Well, that is all the news for today. We will go Friday to have his calcium checked and that is all. It should be short and sweet. We should get results to BM's soon, but keep praying that they are clean for NB. pray that all our tests that we will get next month are also clear of NB.
August 19, 2003 Day +139
Finally a day at home to do nothing. Well, we did something, but at least we did it at home. We slept until 8:45 and it was great. Jim had to be at work early and forgot to get the Accutane ready. I can not touch it since I am pregnant, so we had to call Dugan to come open the capsule and squeeze the meds out onto a spoon of oatmeal. Taylor never even knew it was there. Thank goodness!! Pop came by to play for a while. We haven't seen him in a while and I asked how his treatment for his prostate cancer was going. He looked shocked that I didn't hear the news. When he went to the hospital for testing they said he did not have cancer. We have no idea what he does have, but not prostate cancer. He has 2 polyps in his lungs that he will have biospsied Thursday, so I guess he isn't out of the woods yet.
We cleaned up the kitchen and living room and started the millions of loads of laundry. Of course Taylor already has the living room a disaster again and I only did 2 loads of laundry, so we still have tons to do. Jim has a friend that works for Liberty National. He stopped by to go over a cancer policy that will cover me, Jim and the new baby. We also looked at a policy that will cover burial expenses if Taylor should need it and if he doesn't when he is 22 it will be paid up and will be turned over to him for life insurance coverage. He is going to come back and go over it all with both of us.
That is the end of the excitement for the day around here. I like days like that. Tomorrow will busy. Taylor has an appointment at 8:00 and I have a dentist appointment at 2:00.
Please keep Taylor in your prayers. Keep my Pop in your prayers as he continues to have tests done. Remember all our friends and their families that are in this battle with us.
August 18, 2003 Day +138
I know I am home now and should not be having to say what a day, but NYC is still getting to me even over all the miles between us. I have two prescriptions to have filled and was going to have to get them rewritten since they are from NYC and Children's can not fill them. I thought he would need a platelet count done, so I was going to go get it all done. Well, his purple spots that are a tell tell sign of low platelets went away, so I called and they said we could wait until Wednesday at our regular clinic day to do it. I decided to just go to Rite Aid and fill his Accutane because he needs to start it asap, so that the 4th day falls on a weekday and he can get his calcium checked. Anyway, I called Rite Aid to be sure they could take it and that they had enough to fill it before I went over there. I went through the drive through to drop it off. The lady helping me looked confused and I thought it was due to it being from NYC and that she didn't know if they could take it. She went and got the pharmacist and came over to day they couldn't fill it because it wasn't signed. I just started to cry. He thought I was mad at him. I assured him I understood that he could not do it that it just added to the mountain of frustration I already had with MSKCC. I called Ester in NY and she called the pharmacy to see if she could call it in or fax another scrip. Well, in most cases you can, but not with Accutane since it is such a dangerous and strong drug. She is fed-exing a copy to the Rite Aid. Well, that put us starting on Wednesday which would make day 4 fall on the weekend, so I ended up haveing to go to Children's anyway to get it rewritten and filled there so we can start tomorrow morning. I called Rite Aid to tell them not to fill it when they get it. She offered to call Ester and tell her not to send it, but I told her not to. Lets just let her do a little work since it was her screw up. So, we have the meds and are set to start tomorrow and have his calcium checked Friday.
It all worked out for the best anyway because Dr. Castleberry was there and I was able to go ahead and talk with him about our concerns. He didn't come right out and say yes or no on rather to quit, but he did explain things and give his opinion on some issues and I got enough from him to be able to make a decision. WE are going to check his plts weekly and look at the pattern they take and that will tell us if it is just treatment related or permanent harm. He feels it is 3F8, but I am still anxiously awaiting those bone marrow results. If he does have HAMA that will give us a better look at how they come up. Dr. Castelberry is great as is all our docs here, but he knows all the docs in NYC very well and that helped when talking to him because it wasn't just a name to him. He knows these people and their work and though he didn't give many any gossip (darnet) he did give me the help I was after. Thanks a billion Dr. C.!!!!!
We went to the Cracker Barrel with Mary and had a yummy lunch. After that we headed to Children's. As usual Taylor was running a muck in clinic. He found a football and all the nurses and nurse practitioners playing. He was even getting Dr. Castleberry sidetrack from our talk, he was quite impressed with Taylor arm and his ability to throw the ball so far. I know Jim is proud of that!! He has been very good today. I figured he would be awful after having me for 2 weeks and daddy for one day. He cried when Jim left this morning, but he has been fine the rest of the day. Fine except for when we had to leave nurse Christi. HE cried when she stepped on the elevator. The pharmacist asked if I was his sitter picking him up from his mom. He died laughing when I told him that I was his mom and she was his nurse. That is just proof that our docs and nurses are so much nicer than those up north. You would never catch the nurses in NY in the halls playing football.
August 17, 2003 Day +137
Even after going to bed after 1Am, Taylor was up at 7:15 this morning. We told him to just go to the playroom and play, but he was so excited he wanted us up too. Since it is law to follow a kings orders, we got up. We didn't do anything but watch Buzz and the Wiggles. G-mom came over and kept Taylor while Jim and I went out for a bit. We went shopping and out to eat at Superior Grill. When we got back we took Taylor outside to ride his Gator. He had a blast. He came back in and fell asleep at 5:30. We would rather he not nap that late, but he couldn't keep his eyes open. He woke up at 7:00 and went back outside to play. He took a good bath last night. He had such a good time actually getting wet. We let him soak really good, so that the primapores on his hips would fall off, but they didn't fall off. It is going to be awful having to get 4 of those things off. I wish they would put something else over the spots. We are going to clinic tomorrow to get some prescriptions rewritten and filled, so I will snag some whisk and work on it.
Not much happening around here today and that is fine. Please keep Taylor in your prayers. Pray that the low plts are due to 3F8 and not neuroblastoma in his marrow. Pray that his friend Morgan who was hospitalized with fever and limp is just reacting to the Accutane and not relapsing. Pray for our friend Christi and Jake as they continue to take chemo to reach NED. Pray for all our other cancer friends out there.
August 16, 2003 Day +136
We got up at 7:00 and re-packed what little we had gotten out of our bags. We walked to the 3 Star Diner and ate breakfast. We had scheduled a car to come get us at 5:30 Friday night and of course it didn't come, so we called the car company to see if we could get one out at 11:00 and thank goodness we did. At 11:15 we were finally headed to the airport. The driver was very nice, but not so much a good driver. He religiously strattled the center line so that he could dart to which ever lane was clearest. We passed the Uhaul rental pace and cracked up because that was our next step if our flight got canceled again. We had no idea how to get to Alabama, but if someone could just point us south we would have figured it out. We got to the airport and it was a mad house. We stood in line to check in only to here that to check in at the outdoor terminal you had to arrive 3 hours before the flight. It was 8 hours before our flight. He carried our luggage inside for us since we whined and moaned about it and stood inside to check in only to here that it can only be done inside at 6 hours before. We sat on a window sill for 2 and a half hours waiting to be checked in. There were people everywhere and no bathrooms or food on that side of security. It passed much faster than we imagined and at 2:30 on the dot we headed back up to the now cleared out check in desk. Finally on the other side we ate at Chili's and just savored being that much close to boarding our southbound plane. It was 4:00 before we headed to out gate to wait again. Our gate had a billion flight leaving from it and it was a mess, so we went to a different gate to wait. It soon was full since the flight to Tampa that was scheduled to leave there at 5Pm had been pushed to 7, 8, 9, 11 and finally all curfews were lifted and they were told they would fly whenever it came in and would not be canceled, they finally went at 12:15am. Our flight was on schedule all day and though Taylor wouldn't nap and he was spitting all over everything, he was good. At 7:00 mama went to buy a drink and came back with the news that our flight had been delayed to 9:45. We were nervous then that we would get canceled if it got pushed back any further. At about 8:30 we moved to another gate that we could hear announcements from our gate. We ended up boarding at about 9:30. We were so excited. We were all buckled in and Taylor was settling in to finally go to sleep. The captain came on and introduced himself and we thought we were on our way. Well, we weren't, his announcement had more to it. We were informed that the airport was now closed to all incoming and outgoing planes due to a security issue inside. We would be updated soon. Everyone on the plane was in shock and grabbed a phone and started dialing. I can only imagine what chaos struck NYC on 9/11 after the chaos I have seen in a power outage and a security issue on the plane. It only took about 15 minutes and we were taxiing out to the runway. Taylor was asleep before we even taxied out and slept until we woke him up in B'ham. We had a smooth flight as far as really bouncy turbulence, but it was like riding down a bad stretch of highway. We hit every pothole in the sky.
Finally at about 11:15 we got off our plane and since it is so small we literally go down the steps and walk to the airport. We saw Ca Ca, G-mom, and Papa looking at the window and waiving at us. We were home by midnight. Taylor was off and running by then and played with everything and watched the Wiggles. I had a anniversary surprise waiting on me. Jim had redone the kitchen. We have new lights, counters, sink, faucets, light covers. You name it. Thank you Ca !!
It is now Sunday and we will do an update for today later. We are so glad to be home. Thanks for all the prayers that got us home.
August 15, 2003 Day +135
Deja Vou I know, but what a day!!! I will start with the blackout of 2003 as it has been named. Thursday afternoon I went to the computer lab at about 3:45 and checked emails and then went up and checked the regular mail. Taylor had gotten a card with $5 in it. (Thanks Jimbo and Joy) I went back to the room to give it to him and he was very excited. He has a wallet now and is all about money. In fact when he saw it he immediately had a plan. The day before we had gone to the rainbow store and he got a black and a blue toy 4 wheeler. He had wanted a red one too, but we told him no. Well as soon as he saw that $5 he looked at me and said "red vroom vroom?" Well at that same moment the power blinked and then just went off. We thought nothing of it and decided to walk to the store to kill time. Once out on the street we realized all the power was out, but still assumed it was a traffic accident or something normal that happens back home. It didn't occur to us at that point that all the power is under ground and that wasn't possible. We walked on to the store only to find it barred up like most everything. We were so shocked. They can laugh at us southerners for shutting down due to snow, but at least we are not afraid of the dark! They were completely paralyzed. Nothing had generators. All the grocery stores had to start giving away perishable goods and threw away millions of dollars of food the next day. We soon realized something big was happening we just didn't know what. People parked on the street had their radios on so people could here them, so we stopped and listened and realized we were in the middle of a historical event that would be funny later, but insanely awful at that particular moment. We made our way back to the RMH and sat in our room with the door propped open to get some air circulating. It really never go too hot and we never used air at night anyway, so we were okay. The RMH has generators and the elevators worked and a few lights in the dining room and living room worked. Most people sat in the lobby and listened to the radio.
We were beginning to get very hungry. We had planned on getting a pizza on the way back from the store, but obviously couldn't. Later that night the pizza place opened up, but it was a line a block long and we were afraid to be out there after dark. People slept all over the streets and drank themselves crazy. We popped open our cold cans of Chef-Boy-R-Dee spaghetti and ate it cold. Now is when we figured out 100% Taylor is rotten. He didn't want his food cold, he wanted it in the "mike mike" to get warm. Well, mama just sat it in there and gave it back to him and he ate the whole jar!! After we ate our gourmet meal we sat in the living room and just listened and waited. Taylor was bored and tired, so we went upstairs and went to bed. Taylor went to bed, but we stayed up staring at the clock waiting on the 1AM arrival of power, that was being estimated, to arrive. We tried to call people, but the phone service to RMH was down and the cell lines were jammed with calls, so we just sat in the dark wondering how frantic ya'll were here and wishing we could get to you to get an update at least. We finally went to sleep and woke up at 6:00 to find we were still in the dark.
We had no idea what to do as far as going to clink and we couldn't call. I went to the lobby and asked if they had heard any info and her answer was for me to walk down there and come back and report to the others. What ever!!! I don't give a hoot if they go or not. We went back up to the room and got ready. There was no hot water and I about froze myself taking a shower in the pitch black, but I did it. We walked down to MSKCC only to find that Bessemer Caraway could have functioned better than that!! No elevators in the part of the building we were in and no one, even employees, knew how to navigate the hospital in a different way than they were accustomed too. Finally I went to the info desk and called the day hospital. They said there was no 3F8 at the time and to go back to RMH and they would call us if we were needed. I hung up and looked at mama and instantly made up my mind I was done with this round. I was not coming back at who knows what time to get it. I called back up and asked if someone could de-access him. We figured out how to get up to the PDH and headed that way. I got there to have a little Minnie mouse, sounding lady tell me I would not fly out tonight. I told her I didn't care, I still wanted to be de-accessed and I was leaving that hospital. They said to hold on. A few minutes later another Dr came and told me had had spoken with Dr. Modak and he had given me permission to leave. I told him I wasn't asking for permission, I was telling them to de-access him, so I could go. If he didn't want to I would just take him to Alabama with it in and have it done here. He had a nurse do it a few minutes later. We did it in the nurses lounge because for some stupid reason they had light in there, but not in the patient bed area. They moved recliners into the waiting room to do the procedures. It was a mess, I have never seen a hospital be crippled that way. They were having to discharge people that could leave without harm and I bet that killed them to let someone go without getting to pump them full of Vancomiacin for a week for no reason:) The cafeteria didn't even run, there was no food for inpatient or out!!
On the way back to RMH we found a store that was open and we bought some cokes and snacks and went back to RMH to sit. We heard that the west side and Brooklyn had power and we were just waiting for us to get some. Finally about 10:30 it came on. You just heard the people in the RMH and the streets cheer. We spent the rest of the day on the phone trying to see if we would get out of NYC at 8:30. It looked good until about 4:00 when they finally cancelled everything due to no security systems were up. La Guardia still didn't have full power. I went down to update at 5:00 and he threw me out at 5:15, so that is why you never heard from us. We tried everything to get out, but it was not going to happen. We had already cleaned and packed everything. We threw away all our soap and shampoo since it was about empty and it would be one less thing to carry home. So, we were in a bit of a bind and the stores were not operating fully yet. We did find a solution, we bathed and washed out hair with Palmolive dish detergent. We smelled great! We slept on top of the comforters and got out as little as possible. It was a rotten night of sleep, but we got through it.
August 14, 2003 Day +134
Only one more day. In less than 48 hours I will be in Alabama, in my house, in my bed!! Yahoo!! Today was good. Finally an update that is good. We asked not to take any Dialudid even the pre med since he had none yesterday and was his normal sweet self instead of Satan's spawn. They agreed and all went smoothly and he is in a good mood. He seems to not be feeling real good, but he did sleep during treatment and I woke him up moving him to the stroller, so maybe he is just tired. Today was uneventful as far as 3F8, but you know nothing is uneventful for us totally. It all started with a cramp in Taylor's leg. He was screaming and grabbing it. I know that GM shots cause leg/bone pain, so it could be that, but whatever it was painful. He fell asleep during all that. Cat had just started 3F8, do we were wondering if the pain was back, but you could see his little foot was all flexed up in pain and it ended in about 5 minutes, so there was no 3F8 pain. I was holding him while he had the cramp and since he fell asleep I just held him. I felt my leg get warm and I felt him and he wasn't wet, so I thought I was just hot. Well, a few minutes later I thought my leg was wet, but I thought it was probably just a sensation from it going to sleep holding him for so long. Well, it wasn't. He peed all down my leg and foot, made a huge puddle in the floor, soaked his pants and my shirt. He got the bed sheets soaked just in the few seconds I layed him down to change him. He stayed asleep through it all!! We had to wad his pants up into a rubber glove because we had no bags to put it in. It was so funny and of course nurses are coming in and out and just thinking it is hysterical. After that we were done and were allowed to go back to RMH at about 10:45. I did ask for a copy of his counts. His counts were good, but plts are down again to 38,000 from 51,000 on Tuesday. I am guessing that doing bone marrows yesterday played a little part in that, but it still concerns me. I am so ready to get to B'ham and pick the brains of Dr. Berkow and Dr. Castleberry.
Yesterday Taylor woke up around 2:30, right about the time I started to feel sleepy. He woke up in a great mood and we spent over an hour in the playroom before going back upstairs to eat huh huh or oatmeal. He ate 2 packs. By then we were ready for dinner, but since he wasn't hungry we went to the 3 Star Diner and ate instead of getting pizza. When we got back we played in the playroom until it was time to go to the dinning room and have cake and ice cream for a birthday party. There was a karaoke machine and Taylor had the best time dancing while the big kids sang. After the party we played bingo. Taylor ate popcorn while we played. Guh was the first to bingo, beginners luck, and Taylor picked a Blue's Clues drawing board and played with that the rest of the game. We finally went back up stairs around 9:00 and got ready for bed. Tonight's plans are to eat take out and pack, pack, pack!!!! We are so ready to get packed and head to the airport. We have a car coming to get us at 5:30 and our flight leaves LaGuardia at 8:30. We will be in B'ham by 9:30 tomorrow night.
Please keep praying for Taylor and his complete healing. Pray yesterday's marrows are clear of any disease. Pray that his upcoming scans are as well. Pray for all our friends fighting this monster and remember Morgan who had scans yesterday.
August 13, 2003 Day +133
I know ya'll are tired of hearing this, but I will say it again, what a day!! We started the day as usual with a stop at McDonald's and then walk to the day hospital to eat and wait to start the check in process. When I signed him in they told me he was getting sedation, I was like what??? They had called yesterday afternoon and left a message with the RMH who in turn didn't share the message with us. So, we knew nothing of it. Luckily we had not fed him, but he had had a few sips of tea. It was 3 hours after those sips that he was finally sedated, so it didn't matter. He was a little confused as to why we hid breakfast and his tea. Luckily it was Hawaiian day in clinic and he had plenty of distractions. He is doing much better this time than he did after the first bone marrows he did here. He woke up in about 20 minutes which is also a record for him. He was so hungry that he ate both of his cold hash browns when he woke up. We were told he could get 3F8 after he was completely awake because the sedation and the narcotics have caused problems before. We thought that meant we would be there all day, but we weren't. We went to his bed at 10:30, right after the marrows. He was done by 11:45 or so. He was given no Dilaudid pre med just in case he still had the prophanol in his system. He again, had no pain, so he has had no narcotics today at all. Our roommate had no pain either, but I suspect they are both going for HAMA. I have decided I don't care. If he has HAMA I think it is God's way of helping us make the decision or at least giving us a break from it all.
He and Guh are asleep. It figures that the day that he is on a sedation sleep I am not sleepy!! We plan to have pizza for dinner since he has been so good for such a yucky day.
Yesterday we did go to the park. He had one melt down, but he was so tired it was explainable. We took our dinner and ate it at a picnic table. He ate more than half a burger and most of his fries. He never asked to play until he was done. That's pretty good for a 2 year old. He had a blast. He had Guh and her white pants on the curly slide and the monkey bars too. It was very funny and it's all on video:) He dropped a french fry and within a few seconds every pigeon in Manhattan had swarmed our table. It was not a very comfortable situation! When we got back he wanted to go to the playroom, so we did. He played in a tent all by himself for about 45 minutes and then walked up stairs with no hassle. Of course he fell off the bed and walked funny. Not really a limp, but odd. He would only do it for 3 steps or so then be fine. After looking at his legs we noticed his left leg goes in from the knee down and he walks on the inside of his foot. I have never noticed before, but that doesn't mean it wasn't there. I didn't see him walk today since he was surfing. Here in NYC the kids stand on their IV poles and ride rather than walk with it. He thinks that is the coolest thing, so clinic 5 nurses don't be surprised when he begs for a pole. He seems to be fine though. As if that didn't have me worried enough. He fell asleep in my bed and when I tried to move him he woke up. I put him back in my bed and he rolled over and fell right in the floor. Oh well, you can't win for losing!
I got the best thing yesterday, a card from our 4 tower nurses!!! Thanks guys, that really made my day!! Just a note to go with that. I was on my way to the kitchen for a drink and I stopped at the mailbox first. I was so excited that I got mail form 4 tower that I forgot the drink! Another little side note for Wayne, the 'tude is ROTTEN!!!
Please remember us in your prayers as well as all our friends that are battling this disease. Also, we met a new friend today. Grayson, a 2 month old, is being tested for several different things to figure out what is growing behind his eye. One of the tests is for Neuroblastoma. Pray for him and his family who are from Long Island, but he has a uncle in good ole Birmingham.
August 12, 2003 Day +132
Well, another day down and yet still confused as ever. He again had no pain, but again neither did our roommate. She is just coming off HAMA, so we are wondering if they are both developing a HAMA or if it is just a light week. No one knows, of course. We started our day as usual just much earlier today. We were back at RMH by 11:00. Taylor was very pleasant for the most part today since we have a bribe now. There is a park right across from the hospital and he wants to go. We will bring him there after dinner tonight IF he has behaved all day. From the looks of things right now we will not be going:) He would dry it right up if we reminded him of the park, but when it came time to go he lost it. He was trying to put his shoes on by himself and couldn't, so he flipped out and there was no stopping it. When we got in the room he wanted to go play in the play room, but didn't want a dry diaper. I am tired of fighting it, so I just spanked his butt every time he rolled over. I then left to come update and left him screaming, sorry Guh!! He was soooo mad at me for leaving. About 10 minutes later they appeared in the lab with a tissue for me. He is now playing and happy. Hopefully that is the end of it. He has only had one Dilaudid today rather than the normal 2 or 3, so I don't know how much the meds are playing in it all.
yesterday turned out to be the worst day ever. He cried and pitched holy fits over everything until finally Guh and I both just got in the bed and ignored him. He finally cried himself to sleep in the floor. When he woke up we went to Outback. He had a fit there too:) We walked 20 blocks back to RMH, I think Guh is trying to kill me. I am an Alabama girl, I don't walk here and there. Anyway, Taylor walked about 10 himself before being carried. He went to bed much earlier than normal, so maybe that is the key.
I keep forgetting to tell you all the funniest thing. Saturday we all ate at Times Square. The taxi's passenger side window kept fogging up on the outside. The driver tried to wipe it off, but couldn't so at a red light, that happened to be green, he got out and went around to wipe it from the outside. Taylor looked up and said " where da man?" It was so funny. Luckily there was a street fair and traffic was sitting still, so no one hit us or blew us away with horn honks.
Remember us in your prayers. It is too late for any mail to get to us here, so if you have anything please send it to Taylor's mailbox at home.
August 11, 2003 Day +131
Well, today was good and bad. We arrived at about 7:15 and did our usual breakfast thing and weighing in and such. His weight was down to 26 pounds, but hey, he has pooped 2 pounds worth over the weekend. We got in our room at 7:55, at 9:35 we were still sitting with nothing hooked up, no shot given or anything. Finally she accessed him since his Emla had been on 3 hours. She gave the shot at a little before 10 and then we started the hour wait to give the 3F8. Cat is still out, so the Tori, another NP, gave the 3F8. It worked out good since we wanted them to look at his legs anyway. She said that the GM will do that and not to worry as long as it wasn't tender or hot. It isn't, so we will just keep giving the Benadryl to keep it from getting to bad. Only 4 more days of shots anyway. We finally started the 3F8 and it was a total breeze not one single pain and no hives. He did not get any extra pain med or Benadryl. I am not sure if that is good or bad. If he gets HAMA then we do not return which would suite me just fine, but at the same time I would like to make that decision myself, not be forced into it. It may be nothing at all though, our room mate had no pain and required no extra meds either, so maybe it was just a lighter batch made today. Who knows!!! We were home by 11:45 and eating our 2nd batch of McDonald's for the day. Taylor ate half h is burger and a good bit of fries.
I have had it up to my ear lobes and back down again with him. I wish I knew if it were the terrible twos or what. I feel guilty thinking I am punishing him and it is all meds or cancer returning, but at the same time he wasn't acting this awful at home, so again, who knows!!! He took several trips to the bathroom yesterday to sit and ponder whatever his little 2 year old mind was pondering. He has had his night night and mine taken away. He has had his toys out in the garbage and the list goes on. His fits last forever and they are over nothing. We fight for everything that gets done from getting dressed to taking meds to just looking at him wrong. It is awful plus being here and worried if it is something bad or what and then being a hormonal mess anyway. Lord help me!!! He is in the playroom now happy as can be so hopefully nothing will set him off in the next little bit.
Tonight our plans are to eat peet peet, anything to keep the king happy. We will probably go to the corner market to buy yet another banana, we go several times a day to buy 1 single banana. That is all he will buy and he loves to pay the guy, so we just keep going back. Of course it doesn't hurt that they also sale baked goods and ice cream!
Please keep praying for Taylor healing and that all his upcoming scans are clear of any disease. Pray for my patience and his attitude. Pray baby number 2 is healthy and don't forget the pink issue:) Pray for all our other friends in this battle with us.
August 10, 2003 Day +130
We have had an easy Sunday. We slept until 9:00 and then went to eat breakfast. We found the Rainbow store which is sort of like a Fred's. Now we are in the play room again. We plan to just hangout here today and rest and get ready for the week ahead. It is all down hill from here only 5 more days.
Last night Taylor's legs were very red all around where he gets the shot. We called the urgent care Doc and she said to give Benadryl and keep an eye on it. If it were hard, hot to the touch, tender, or he had fever then he needed to be seen. None of those symptoms were there, so we just gave Benadryl around the clock. It is still red today, but looks much better. I of course called B'ham and checked things out with them. They said the same thing just they call it a reaction rather than infection. Benadryl would be used to treat it and switch from Gm to G-CSF. I do not know if they can do that with the 3F8 protocol or not. I also quit putting Emla cream just in case he was reacting to that. I gave the shot today and we will see what the clinic says tomorrow about it. I swear it seems like we come to New York and the bottom just drops out. If it is going to go wrong it is going to do it up here. I know B'ham gets tired of hearing from me, but I just trust them so much that I need to hear things from them to calm me down. So, I apologize for driving all you on call nurses crazy, but get used to it!!! :)
We all went to Planet Hollywood to eat last night. We found out we get frequent flier miles when we use or American Express card there, so off we went. We caught a cab to RMH and Ca Ca used it to head on to the airport. He had to leave last night because all of today's flights were almost full and he had a slim chance of getting a sand by seat. He arrived home last night around 10:30. We miss him already. When we got out of the cab and he stayed Taylor just screamed "my Ca Ca." He was over it once we got to the playroom. Taylor had several fits last night and today, but we are chalking it up to meds and terrible twos.
We will update again tomorrow after clinic. Hopefully it will all be good and will consist of a time for bone marrows.
Please continue to pray for us and Taylor's healing.
August 09, 2003 Day +129
Today is Saturday. We all slept late, well later than normal. We got up and got ready and headed to the 3 Star Diner for breakfast. Taylor ate french toast and bacon. We then went to Toys R us and rode the ferris wheel. Taylor used his own money to buy a few cars and a carrying case. Guh went into Tiffany and Co and got some perfume. We are now resting and are going to go out for a early dinner in a little bit.
Yesterday Jim and I went out to eat just the 2 of us and Taylor stayed here and napped. He slept from about 2:30 or so until 7:00. He was not ready for bed last night when the rest if us were, but he did lay and watch cartoons. Taylor has pooped several more times, but is still having some trouble. It is getting better. He fell last night and has a huge bruise on his knee. He did fall hard, so hopefully his plts. are okay and it was just due to a hard hit.
Taylor had us in stitches this morning. He bought some Scooby Doo band aids and that is what he picked for his shot this morning. When Jim put it on, Taylor pointed to Scraggy and said "Dugan" We laughed so hard. Taylor also got a bath today. He can not bathe when he is accessed so he hasn't bathed in the tub this week. This was the first bath he got that he was able to get his new port and stitches wet. He had a blast. We got a few minutes on video. We finally had to use a wisk to get his sterri strips off his stitches this morning. It would not fall off. He tends to hang on to things like that. He was 6 weeks old when he lost his umbilical cord stump. Oh well!!
Please pray that Taylor is being cured of this disease and that we are able to make the right decision regarding his treatment. Pray that Ca Ca has a safe flight back home tomorrow and us too on Friday. Pray that the bone marrows are scheduled for Thursday and do not hinder us getting to the airport on Friday. Pray for all of Taylor's friends and their families that have cancer. Pray for all the families that have lost a loved one to cancer as well. We will see you all soon only 6 more days!!!!
August 08, 2003 Day +128
Today was a better day. We again were started late today. The computers were down so they wouldn't draw blood until they could print labels, God forbid they have to write anything!! We finally got hooked up around 9 and on 3F8 by 10:00. Taylor made it half way through the flush and he got some pain. He cried a lot like he was really hurting, but then his heart rate never got over 147, so we don't know how bad it really was. We asked that they put on file that he is CMV negative, so that that blood is always ordered. Well, the answer we got was that they do not test that and if the kids get CMV they will treat it. Well, that is INSANE, so I was telling her to let it be known I WILL NOT let Taylor get positive blood, he will just go without getting the transfusion. Dr. Kramer Kramer asked to see us a little while later and explained that they do not routinely test for that because this is a cancer only hospital and they only give CMV blood. That makes perfect since, but of course no one can explain that at the time you are freaking out. She also said she feels the low plts are a mix of radiation, 3F8, and Gm-csf. Who really knows. All 3 Dr's here have gave a different answer.
We finally got back to the room around 11:30 or so and of course he has no desire to nap. He is watching videos and laying around, but no sleep. Last night we ate free pasta dinner here at the RMH. Taylor ate 6 pieces of bread. We also got a surprise visit late last night. Ca Ca flew in a day early. He actually came early because I was a basket case yesterday. I called him from the hospital after the blood incident and was just boo hooing, so he left and headed this way.
I talked with our wonderful, fabulous, awesome, nurse practitioner at home about the situation and we have a plan. We will finish this round of 3F8 and return next Friday. On Wednesday the 20th we will meet with Dr. Berkow and or Dr. Castleberry to discuss what has happened and where to go next as far as stopping this treatment now or finishing up the initial 4 rounds. (We have some concerns about the 3F8 study and its' effects on Taylor's longterm platelet/blood count). We should do a bone marrow biopsy here before leaving, but if not we will do it in B'ham to rule out the possibility of it being cancer in the marrow keeping the plts low. We have scheduled scans for Thursday the 21st. If Dr. Castleberry does not feel it is necessary to scan we will cancel them. If you remember, Castleberry is a specialist in the NB field and is at Children's. Though he does not work with the 3F8 he has done extensive research, so we will trust his opinion on the matter.
Please continue to pray for this situation and they we are able to make the best decision for Taylor. Pray for our friends that are battling this and other cancers.
August 07, 2003 Day +127 Happy Anniversary Momma and Ca-Ca!!!
What a day!! We were very early again this morning. I am not sure why we keep getting ready so early because non of us want to get up. Anyway, we started a little later than normal just because of things being hectic and because Cat, the nurse that gives 3F8 went home sick and so the nurse practitioners had to give the 3F8 today. He had pain, but not severe. His heart rate was in the 140's. They decided to go ahead and give him a bolus today before we started to see if that would help his BP and it did. He was in normal range all day. As for the pain, I am so glad it was easy and you could see he did have pain, but not much at all. I do not know if that means we were lucky and just didn't get hit hard or if we are heading towards HAMA. After today I am not sure which way I want it to head either. I am really ready to just throw int he towel and lead a normal life and see what happens, but that is such a drastic decision. The nurse came in and wanted us to go see Dr. Kramer. I said that we couldn't now since he was already started and in pain, so she left. We were sitting on the edge of our seats thinking those cultures grew something and we would be admitted. The Dr. nver did come in, so we kind of relaxed. At 11:00 we finished up and thought we were ready to go. Our nurse came in and said we were getting blood.It took over an hour to get the blood and then when it came it was not marked CMV negative. The blood was negative, but it was coincidence. They do not have him on record as being CMV neg, so blood is not ordered in a particular way. I was again furious. Why would they not have his CMV status on file and why would they give an immune suppressed child positive blood anyway???? Okay, life goes on and we get the blood over 2 hours. Thank goodness it wasn't 4. We finally left at 3pm. Taylor has had no nap and is almost as ill as his mother:) He was fever free yesterday afternoon and all day today until she unhooked him. He was 99.1. That is not really a fever and I hope it is just a product of the blood, but anything over 98.6 and I get nervous. Last night we went out to eat for the first time this trip. He was good as gold and the food was fantastic at the 3 Star Diner. Taylor even ate good. We then took him to the drug store across the street to get a suprise for being good at dinner and there was not one single toy in the store. He picked a child's silverware set in a travel case. I didn't ask, I just payed for it!! We got home and just played around. He slept from 12:45 until 5:45, so he was by no means ready for bed. He had been given some lactulose at clinic and at about 9:30 he FINALLY got the poop out. He was a different child after that "log" came out. He was so happy. This morning he went ape at diaper time, but he was mad that I used the bandaid he was holding to cover his shot. He let me change him later and he had no trouble last night when he pooped, so maybe it is all in my head. I have another prayer request to add to the normal ones. Today I learned that several children are having permanent damage to their platelets and crit levels. I have talked to the docs here and of course they rally all for the 3F8, so I have emailed B'ham to try and meat with Dr. Castleberry, our NB specialist, and see if it is worth continuing or if we should stop after this round. I am very torn. I felt that since the chance to get the treatment at home was gone it was meant to be that we come here, but Taylor is having to get blood and has very low plts and other kids just don't seem to be doing this. Most long term NB survivors did this treatment, so I really want him to get it, but at the same time I don't want to hinder his health further by doing it. Please pray that with the help of our DR's and God we can decide the best thing to do for him. Thank you for all the prayers and support you send our way!!
August 06, 2003 Day +126
Another day is behind us and only 7 more to go! Today was fairly easy last night however was not. Around 5:00 Taylor got a 103 temp. I called B'ham, you know me I hate these urgent care docs up here. His counts were great and so we decided to hang out and just tell them at clinic this morning. Thanks Candy for getting me through ANOTHER rough spot!!! He went up and down all night, so we were nervous. He has a very runny nose and a cough, so hopefully that is all it is. He also is so very constipated that it is really hurting him. They told us before that that did not cause fever, but last time we were here he was constipated and once he went he had no more fevers, so I don't know. He was only 99 when we got to clinic this morning. They drew cultures and did an examination and all looked good. We should only go inpatient IF those cultures grow anything, so pray HARD that they do not. He was back to normal when we left, so hopefully that is all of that. They gave him some meds to help him go to the bathroom, so we shall wait and see on that too. Today we got startd on time and all was well. He did have pain, but it was late into the flush and it was not near as intense as yesterday. His heart rate hit 170 and then fell right back down, so it was a pretty good day. We played the blood pressure game again. They do not have a cuff that fits, so we took it on every body part imaginable with 10 cuffs and never got anything normal, so we came home. He is sleeping. Pray that he wakes up happy and fever free. Hopefuly this one will disapear as fast as it appeared. He pitched a huge fit at diaper time after treatment. I pray that it is a mixture of narcotics and constipation causing him such grief at diaper time. I am still very worried about it. His eye looks fine today, so that was just fluid retention. Please pray that all this attitude is just that, attitude, and nothing more. Pray that this fever is 3F8 and or cold related and not line infection. Pray that we do not go inpatient. Pray we finish this 2 weeks up with no other problems. Pray for my pateince as well. I know this is the best possible treatment for him at the time, but I get so frustrated and scared up here that I am ready to throw in tht towel. I am so thankful for Berkow, Merideth, Cindy, Dr. Lucas, Dr. Sande and all the other nurses and staff at Children's. I felt so comfy and safe there that fevers never upset me like they do here. I know they think I am crazy for calling clinic 5 from NYC, but I trust my life and his in their hands. (No pressure guys!!) Also pray for our friends Jake and Christi who are starting more chemo. Pray that Morgan's next scans are clear and so are Taylor's!! Pray for all our other friends still fighting.
August 05, 2003 Day +125
Today started out faster, but in the end turned long. I gave the shot this morning. I finally did it right. Way to go me!! We got to clinic way early, but at least we had time to eat our breakfast. By 9:15 we had the 3F8 going. He didn't hurt until the flush, but he hurt really bad today. His heart rate was in the 211 range for about 15 minutes. He took all 3 Dilaudid and stayed on oxygen for most of the treatment. His heart rate finally came back down, but his blood pressure was very low it kept coming up like 79/31. So, we had to keep hanging out to check that. Cat wanted to give a bolus of fluid to help him, but Mary Jo disagreed and so did we. We think he is just in between cuff sizes (yesterday he used a small cuff and ran high) and he was asleep, so we just woke up him up and it was 91/59, so we were able to leave. Dr. Kushner came by today. We will do bone marrows on Thursday or Friday of next week. We will do all his scans again after round 3 of antibodies, so we will stay an extra couple of days for that in september. I also talked to him about his platelets not wanting to come up. He feels it is a late effect of the radiation, because they are coming up just very slowly. He is not concerned. I also talked to him about his behavior lately and how it mimicks that of his time of diagnosis. He said as for the dipaer thing it is the terrible 2's and as for his left eye being puffy and such is because it was abnormal due to disease anyway and now has a more likely chance of retaining fuid and swelling, so not to worry. HE said it is possible of course to relapse, but not so soon or so forceful to bring out every symptom. I know I am just paranoid, but I guess that is what you learn to live with after a situation like this. He also put him back on Acyclovir. He said they need to stay on it. I asked why Dr. Modak had said we could stop and he didn't know, but said to take it. So, we will be starting that again as soon as we get the prescription for more. Thank goodness that was one he liked. I asked Morgan's mom and she still takes it too, so I guess it is just precautionary. Taylor is again not wanting a nap. He finally went to sleep yesterday around 3 and slept until 7:30. He woke up just as happy as could be and ate a pretty good dinner. We took a stroll to the kitchen about 9 last night for a snack and found that someone had been stealing our food. We were hot!!! We had to go tell the manager and we have all our non parishable foods in our room. All I know is if anyone touches that bag of Gm-CSF they will die!! Please continue to pray for Taylor and that this is the cure. Pray for Jake and his parents as they did learn he had some disease progression. www.caringbridge.org/nc/hopefor Pray that Morgan's next round of scans are clear. www.caringbridge.org/nc/morganbarnes Pray for all our other cancer friends too.
August 04, 2003 Day +124 Happy Birthday Ca-Ca!
Today's Update: What a day!! We got to the hospital around 7:30 and did our normal check in stuff. He was 26 pounds and fever free. He didn't even fuss with the finger stick. We had a long wait since we had to do blood before the shot today and then wait an hour plus I forgot to put the emla cream on his port, so she had to do that and wait a while for that too. After all the waiting it still hurt because his emla moved from the port and didn't numb it very well. Oh well, it was okay. We finally started 3F8 at 10:15 and we are usually leaving arond 10:45. He started to cough really bad, to the point of needing to throw up. HIs nose was running faster than we could grab tissue and spit, oh the spit!! Cat said that if you already have cough or cold the Gm tends to worsen that,so hopefully that is all that was causing it. He got hives and is sooooo swollen. He can hardley drink from his sippy cup because he can't feel his lips. He looks like we feel after being to the dentist. He can hardly open his eyes, he just overall looks bad. He had a good deal of pain, but was so busy coughing he really didn't notice. His heart rate was in the 190's before he got Dilaudid. We had to keep him on oxygen since he was so swolen and congested. It was scary! We finally left at 12:00. He slept on the walk back, but then wanted up to play. He is very grumpy and whiney!! He is still pitching a fit and screaming bite when we change him. I must say it really upsets me since that is how he acted right before being diagnosed. I don't know if he is being a cranky 2 year old or it really hurts. I am ready for more scans though, but those do not come until after round 4 in October. I think Guh is enjoying NYC, we have had a few laughs anyway. On our way to lunch yesterday, her first trip out, a car almost hit the car in front of him at a red light. The guy in back laid on the horn and so the guy in front got OUT of the car to yell "it is a red light you moron!" It was so funny. It is so busy and cars flying in and out of places that she just laughs at how crazy it all is. We had dinner here at RMH last night. It was supposed to be at 6:30, but it was more like 7:30 before it was ready. Taylor was very grumpy waiting, but when it came he ate half a hamburger patty and 4 wieners!! He has no eaten today, but hopefully he will eat a good dinner. Well, that is all for today. Please keep Taylor in your prayers. Pray he is just in the terrible two's not a relapse.Pray I am just a emotional, paranoid lady. Pray that all this travel and pain is the cure he needs for this disease. Pray for our friend Jake to have clean scans. Pray for all our cancer friends. Pray for the plunkets, they welcomed a new baby boy to their family this weekend. We congratulate them, but pray that the 10 week early little guy is just fine.
August 03, 2003 Day +123
Our flight left right on
time and landed exactly 1 hour and 50 minutes later, just like the pilot said.
Taylor zonked out right after take off and Guh followed shortly. I read my book
and pondered going to the bathroom until I could no longer hold it. We were able
to get an 8:00 flight out of here next Friday, so no stressing!! Again, Thank
you Tommy and Delta!!!! For the first time ever Guh's luggage wasn't last, mine
was. A nice man helped us get our 3,over 40 pound bags to the cab. We know now
that is the route to take, since he carried out the bags we went to a special
gate and got in the next cab rather than waiting in line. We had a great taxi
driver, he only almost killed us twice:) We are on the 8th floor again, so
Taylor is happy, but will not be learning a new number this time. He had a royal
fit when we tried to change his pants. I do not know why, I just know that is
always scary since that is how he acted when he was first diagnosed. Anyway, as
we headed out the door to buy groceries he pitched another fit b/c he knew that
that we were going the wrong way to go to the play room, so he is now playing
while I update and we will then try to go to the grocery store again. Hopefully
day number one goes smoothly for us. I gave his shot 2 nights and then on night
3,I got gun shy and could not do it. We will see how the rest of the weeks go. I
can get a nurse to-do it tomorrow. Monday is a long day since we have to wait on
blood work to give the shot and see the dr, but the rest of the time should be
short and sweet. We will update as soon as we get in tomorrow or as soon as we
can get in the lab.
August 02, 2003 Day +122
Today has been busy with preparation for our trip. We started with breakfast and then Taylor and I went to Pop's to ride the golf cart while Jim came and got his trailer. We went to Sam's and bought a storage shed for the lawn mowers and such. I went to pick up Guh who is spending the night since we have to be at the airport at 6:00 AM. We are now leaving from Birmingham. A really, really nice man who is retired from Delta called and had it changed to Birmingham flights rather than Atlanta. Thanks a million, Tommy!!!!!
We are all packed and ready to go, but we need to rearrange, our bags weigh to much. Oh, well. I have given the last few days of shots, so that we do not spend an extra hour everyday in clinic. The 3F8 can not be given until an hour after the GM-CSF shot, so if we have the nurses give it we will waste an hour waiting. Jim has always given the shots, but now it is my turn. I do not like it and Taylor does not like me giving it. I go to far and hit his muscle and it knots it up. I guess it will get easier like everything else did. I use to cry more than Taylor when I did dressing changes and then all of a sudden it was just second nature to rip that primapore off and clean that site. Thanks to Rhonda and Melanie for teaching us the tricks of the trade!! Speaking of cleaning noodles, any of you cancer friends that need line supplies please let us know and we will be glad to share our leftovers.
Taylor has had zero fever since the other day. He does have a nose that is running like a faucet, but other than that he seems to be just fine. Well, we will go for tonight. I will update when I can from NYC. If I can't figure it out then I will e-mail Jim, so as long as the computer lab is open you will get an update. Sorry, no pictures until we get back. There is no way I am learning how to do that!!
Pray for a safe flight and an easy fever free stay in NYC. keep thinking pink!!
August 01, 2003 Day +121
STUBBORN!!! Now you all see why we said try. Taylor kept his legs crossed when we tried to see him and baby number 2 is Indian style with its feet in its crotch. She tried really hard to find out. We turned me in different directions to try and get a different angle she even jiggled and wiggled until she had the baby really ticked off. It got it moving, but it would not move its feet. Everything looked fine, just stubborn. We did see it sucking its fingers. You could even see its cheeks going in and out, so it is more like Taylor than we thought. I saw the doctor and he said I measure for 18 weeks rather than 19, but baby is growing consistently, so it is fine. I gained 2 pounds in 3 weeks, but we know I will lose 2 while I am gone. I have not gained anything since starting the pregnancy. I just gain and lose. I go back on August 28th and we will try again. I will also do the glucose test that day, so it will be a long visit and hopefully having no sugar will not keep it still again.
Taylor had fun. He was a little shy when we came in because he thought new people were going to poke him, but once he realized they were going to poke me he was fine. He held my hand while she did my blood pressure and he was loving the ultra sound. I didn't get a finger stick today, so he didn't get to see that. He never meets a stranger especially one in scrubs. He sat in a chair in the hall while I poke my head in the waiting room to see if Jim was there yet. I got back to find him in the floor with about 6 nurses playing cars. We moved into the sonar waiting room and he played with the mammogram lady. I went back to check on Jim again and he didn't want to go, so I left him with her. He did try to follow Jim out when he left to go back to work, but he got over it. He was mesmerized by the examining room. He kept grabbing stuff (stirrups) and asking "what's that?" He was also a little to interested in the peeing in a cup process. That is an awful job anyway, but to do it with a 2 year old squatting in front of you and is even worse. I tried to tell him he could do that instead of getting bagged if he would learn to potty instead of wearing diapers. Leave it to a teacher to turn peeing in a cup into a learning experience. Taylor is now going through his basket of mines aka pacifiers and picking out the ones that the baby can have. I guess now he realizes there is something in there.
I picked up the tickets today. We will fly out of Atlanta at 11:30 Sunday morning. We will have to swap out our return tickets. It leaves at noon on Friday the 15th and there is no way we will make it. We usually leave the hospital around 10:30 or 11:00. It takes 30 minutes to get to the airport and we would have to go get luggage first plus check in and all that. I do not really want to be that stressed out, so we will change to a later flight.
Back To Top
July 31, 2003 Day +120
UPDATE: We got a 5:00 call from Kay and we have tickets!!! We will leave from Atlanta (much cheaper rate). I hate to have to drive that far and I know I will dread it when we come home, but it will be fine. I will meet Kay tomorrow to pick up the tickets. Thanks Kay for getting it all worked out!!!! I will update again tomorrow about times and such. Remember to pray for pink..... we go at 10:00 tomorrow morning to TRY to find out what we are having. Hopefully number 2 will be a little less modest than his/her brother.
This morning Taylor woke up at 7:00 with a 102 degree fever. We headed straight to clinic where he had a normal temp. Go figure. They drew cultures whish required his new port to be accessed. He did fine. He was scared, but it was so fast he didn't have time to scream. He cried more when she took it out than putting it in and that was due to pulling off all the tape holding the needle in place. They will call us if his cultures grow anything. His counts were fine, so he was not admitted. Had we been in NYC we would be inpatient right now! Anyway, Dr. Hilliard did a chest x-ray, but it just showed drainage. She went ahead and put him on Zithromax to cover anything trying to develop. Ever since sleeping under all those fans the other night he has been congested and had a runny nose, so hopefully that is all it is. We ate lunch in the cafeteria with Miss Rhonda while we waited for his prescription to be filled.
Still no word on the plane tickets so keep it on your prayers. Keep praying for Taylor's healing and that this fever is a fluke that passes by without interfering with treatments.
Don't forget that starting tomorrow you can order the childhood cancer car tag!!!!
July 30, 2003 Day +119
Test Day today!! We went to my Nana's daycare today and met with Miss Roslyn to do Taylor's speech evaluation. Needless to say he flunked, big time. It worked out okay because he has a fine vocabulary just bad language skills. You can only get in the program based on vocabulary, so had he said all he could say he wouldn't have been eligible. He acted shy and and wouldn't even look at her much less talk to her. The test was just showing her things in a book and repeating after her, but he just looked at me and ignored her. She told me not to worry about his scores because I know he can do better. She watched him play for a while and saw he could talk and she also heard some of his problem areas. Such as, he says key instead of tea, prog instead of frog, cog instead of dog etc. She said that children that are droolers (and boy is he a drooler) often have trouble controlling their tongues and lips therefore they drool and have language problems. He was a horrible droller as a baby, so she said that he probably would have had this problem even without cancer and chemo. She has to send his scores in and we will see if he gets in, but she thinks he will because of his non cooperation she had to mark that he could not do a lot of the things she asked of him, So, more than likely he will start getting weekly sessions with them here at our house. Once he turns 3, he will be re-evaluated and turned over to the county school system.
Last night Guh kept him while Jim and I went out. Our Anniversary and Jim's birthday will be next week while we are out of town. Anyway, they went to my Pop's where it was cool. He had a blast riding the golf cart and he even found 49 cents. We all got home around 8:00 and it was 90.9 degrees in the house. Taylor took a cool bath and then layed under a fan and fell right asleep and never broke a sweat. Jim and I however, were rather miserable. When Taylor and I got back home this morning the air guy was leaving to go get a part to fix the fan, so hopefully he will have it up and running in an hour or so. It is hot in here today, but the rain has kept it from being as bad as it was yesterday.
Please keep Taylor and his healing in your prayers. Please pray that all our NYC travel issues situated and that there are no terrorist problems as we travel. Pray that baby number 2 is happy and healthy in there and comes out with all the right stuff in the right places and in working order and no cancer. It couldn't hurt to ask if it could be a girl:)
July 29, 2003 Day +118
Finally, we have word from all the people we were waiting on. MSKCC emailed and Taylor is HAMA negative, so we will return to New York. Delta has lost all our info and now we have to find another route that may include driving to Atlanta or buying a ticket on our own. Please add this new situation to your prayer list. Kay, our social worker, is working hard on straightening it all out. Thanks Kay!!! I also got word from our social worker in NY. She has told RMH about our plans, but they do not make reservations. If we do not hear from her we are to expect that all is okay and head that way. I really do not function well with those kind of plans. Oh well, just pray that it all works out in the end.
Today has been hot. Why you ask? Because our air is out. Last night we were so hot and couldn't figure out what was going on. We found that the air was blowing hot air rather than cool. So, we slept with fans on last night and it wasn't too bad, but today is hot. Someone is coming tomorrow between 8 and 1 to fix it.
Today Taylor went to lunch with Papa and G-mom. I was going to finish packing and cleaning, but it is so hot I didn't. I am hoping it will rain soon and cool off a little. Nothing really going around here. I am patiently (not really) waiting for a call or email from MSKCC with the results of Taylor's HAMA test. This is the test that tells us if we will or wont go back for another round of 3F8. I am also waiting to hear from the social worker on rather or not we have a room in the RMH. She told me if I didn't hear from her that we were set, but I have a hard time working that way. I need solid plans in order to feel okay about it. We also do not have final word on airline tickets. Plus did anyone watch the news at noon? They say there are plans of a 9/11 style attack within the next few months. Also one of our friends sat on the runway in NYC for an hour while the airport dealt with a potential terrorist at the gate that plane was supposed to go to. I really do not want to go back to NYC and with all this going on it really makes it hard to want to pack and board that plane.
Please pray that we get all our plans in order and arrive safely in NYC and return home safely in 2 weeks. Pray we are doing all this traveling to get that cure we are after. Please pray for Taylor's friends that are battling this and other forms of cancer. (Jay, Morgan, Jake, Christi, Gracie, Tyler, Carter, Alexis, Sarah, Ally, Amber,, Levi.... ) Unfortunately the list is too long.
July 28, 2003 Day +117
Today was clinic day. We got there around 9:00 and headed over to the lab. That threw Taylor off because he has never had to go over there. He whimpered a little when she stuck him, but never really cried. He cried more when she pulled the tegaderm off his arm than he did when she stuck him. For those of you wondering, a tegaderm is a clear plastic covering that covers the emla cream. We waited about an hour, but he was eating and watching TV, so he wasn't bothered with the wait. We never even left the waiting room. Miss Ruth came out and said he had a crit of 25 and 61,000 platelets, so he was fine. I hate his plts. haven't risen anymore since it is time to go back to NYC, but next time he wont have any surgery, so maybe he will recover better.
We left the clinic and went to the Galleria and ate lunch with daddy and then we met Temperance and Christian to shop. Taylor ate 2 bags of pop corn and an ice cream cone while we were there. He was to nosy to nap, so he is now napping on the couch. He got to ride the carousel this time and he loved it.
Please keep Taylor in your prayers. Pray that his counts are recovering as they should and he doesn't need transfusions in NY. Pray that his first port access isn't to traumatic for him. Pray that this is all worth it in the end and he never has to endure this or other treatments again. Also, don't forget to sign his guest book. Those really do help us and Taylor loves to hear them. We want to know you were here every time. That book never fills up, so sign it as much as you want.
Stop by and visit the Camp SAM website at www.campsam.org
July 27, 2003 Day +116
Today has been busy. We got up early, well Taylor did. I heard him get out of bed and go to the living room, but I didn't pay much attention to it other than that. A few minutes later something hit me in the back. I look up and it was a pack of oatmeal and there stood Taylor grinning at me. Needless to say I got up and went and made Banana nut bread flavored oatmeal. (Yuck) Soon Papa was here and we all decided to head to The Cracker Barrel. Taylor didn't eat, but he was good. The Jim, Taylor and I went to Lowe's for some more stuff for the room downstairs. After that I left the boys at home while I went shopping with my momma. I got back around 2:00 and found Taylor asleep. Of course he woke up 5 minutes later. He played in the living room while I did laundry. I still have a lot to clean up, but I am to lazy, so I am updating this instead.
We will go to clinic tomorrow at 8:00 to check his hematocrit and platelets. He is full of energy, so I really do not have any idea rather he will need blood or not. He also had a little trickle of blood from his nose yesterday, so he may need platelets. I really do not want to sit in clinic all day (it takes 4 hours to get blood and that is after they decide he needs it and receive it from the blood bank.) However, I would rather him get his new port accessed for the first time here with all the nurses he knows and trusts. He will now give blood from his arms for counts. We have Emla cream to apply to his arm and port to numb it before he gets a poke. It will not hurt to be accessed, but the first time will be scary for him.
I really do not remember if I ever told you all that he is now off all his meds except his Bactrim and he is off the low microbial diet. Yeah, now he can drink tea from restaurants and I can start making homemade mayo again. Yeah right!!!
We will update again tomorrow when we get home. Please keep Taylor in your prayers.
July 26, 2003 Day +115
This morning we had breakfast at the Fairfield Moose Lodge. They presented Taylor with a learning bear that will help him to get through different aspects of his treatment and teach him as well. He had a blast, we all know he doesn't have a shy bone in his body and showed out. He did get a little scared at the end because he was center stage with all the ladies with out mom or dad. He acted scared of the bear, but I know he will love it as soon as he figures it out. It has a tape player in it and he will love changing out all his tapes. Pippy, Pop and Pam went too and he played with them.He was concerned where they went since we left at different times.
Last night Taylor stayed with Jeanna and Bob while Jim and I went to G-mom and Papa's to swim. We weren't there very long and we came back home and played some more. We have tentative plans for NYC. We will leave here Sunday, 8/3 at 10:20 and come home Friday, 8/15 at 8:25. Hopefully this time will not be as hectic since we know what to expect. I am ready to pack, but being the big prego lady makes it hard to come up with 2 weeks worth of clothes much less pack for 2 weeks and still have something left for the rest of the time at home, so I will do it last minute.
We are going to go to the Galleria in a little while and ride the carousel and get some lawn mower parts. It has been a while since Taylor has been to the mall, so it should be a wild adventure.
My Pop's bone scan was negative, so at least he got some good news. Please keep Pop and Taylor in your prayers.
July 25, 2003 Day +114
Well, I must say that Taylor is not bothered in the least that his noodles are gone and he has a new lump under his skin. I left left yesterday to go get bananas and tea and when I got back Taylor was in rare form. He is in no pain from his surgery. He was even sliding on and off the bed on his belly. At about 3:30 he said it hurt and I gave him tylenol with codine and put him in the bed. I just knew he was going to fall asleep. Well, I was wrong. He layed there about 20 minutes and as soon as the medicine kicked in he was off and running. He even ate great, 2 packs of oatmeal and 2 pieces of pizza for dinner. He finally fell asleep around 10:00 and was up by 8:30. He has a nasty cough this morning. I hope it is just something to do with surgery and he isn't trying to get sick. He is full force again today. He has eaten and drug out a million toys in less than an hour.
I guess I better qualify who my Pop is. He is my grandfather. I noticed people thought it was my dad. My dad doesn't have internet access, so he would not have seen it on the web site. He would have thought that people were crazy when they started to talk to him about his illness. My grandfather had his scan yesterday, but we do not know yet what the results are. I get anxious. Having been with Taylor for so many scans that we have learned to read it somewhat. Enough to get a feel for if it is good or bad. I of course called him for instant results not even thinking it would not have meant a thing to him. So we will just wait.
Keep Taylor and Pop in your prayers and that they are 100% cured. Keep all of Taylor's friends in your thoughts and prayers as they too fight their battles.
July 24, 2003 Day +113
UPDATE: We are home and noodle free!! We made it to the hospital on time at the way to early hour of 6:00. We were called back in a few minutes and we started the process. It took a while because they wanted to recheck his counts. His platelets were up to 77,000, but his hematocrit was down to 22.8. They ordered blood and plts. just in case he needed either one, but he didn't. We will go in Monday (unless he feels bad tomorrow) and recheck it and get blood if it has not come up. He finally went back around 7:30 or so. He was only supposed to be gone about 45 minutes. When it had been over an hour we started to get worried. Dr. Harmon finally came out and said all was fine, but they had hit a road bump that delayed things. I will try to explain so that it makes since. His broviac was on the right side. They wonted to put the port on the left. They cut the pocket and placed the port just above the left nipple. He then tried for 30 minutes to thread the line through the vein on the left side of his neck. Finally he had to inject dye into it to see what was going on. It was a dead end vein, it lead to nowhere. They do not know if it was a birth defect or a side effect of chemo. The vein works fine it just doesn't lead back to the heart like they needed it too. So, now he had to go another route. Because his plts. were so low they didn't want to cut a pocket on the other side, so he thread the line across his chest and into the vein on the right side. He still has his cuff that held in the noodles because it was still in place and they didn't want to cut him to get it out. They will take it when they take the depo port out. We were gone by 10:40, so it wasn't too bad. He is not in very much pain. He walks fine, he just doesn't want to bend over.
This port will only have to be flushed once a month, so we will take care of it in NYC or here when we get blood counts. I also talked to Cindy, our nurse practitioner from stem cell. She said that Taylor could go swimming in 10 days. That is the day that we leave for NYC, but at least when we get back we can go for a swim. He can only swim in a private pool or a baby pool. No public pools, ocean, lakes, or rivers.
Please say a special prayer this morning as Taylor enters into surgery. There is a 1% chance of a partial lung collapse while threading the line through the veins. It is very rare and lets pray that it does not happen to Taylor.
Also, we found out last night that my (Kim's) Pop has prostate cancer. I know now from experience that the word "cancer" is not a death sentence, but it is still just as shocking and scary to hear. I know what he will endure and all that he will suffer and no one, big or small should have to endure that. I guess now we will trade rolls. He has taught me many things over the past 25 years and now I will teach him all I have learned about the road he is now about to travel. He will have a bone scan tomorrow to see if it has moved into his bones. Let us pray that it has not. Taylor had bone involvement and we know what troubles that can cause. If it is not spread he will have the option of an oral chemo that he takes daily or a shot that he gets once every 4 months. This is a very treatable cancer if caught early. We think it is in an early stage and we will know soon after the bone scan. It is odd that I am the knowledgeable one in this rather than he. We will get through this as will Taylor. We have many friends and relatives already with God that are watching over us all.
We will update as soon as we are home from the surgery later today.....
Stop by and visit the Camp SAM website at www.campsam.org
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. 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...
July 23, 2003 Day +112
Last night was long and so was today. As soon as I am done updating, Taylor and I are going to take a nap. We received a letter yesterday stating that our insurance would not cover the trial. We didn't get the mail until after 5:30, so there was nothing we could about it, but worry. Worry I did. I tossed and turned all night worrying about what we would do. However, as soon as we talked with our wonderful case manager we had it all cleared up. That letter was the one that was sent in regards the original request from Sloan Kettering. So, all is well in the land of insurance.
As for today we arrived at clinic at 8:00 and left at 1:30. We went to the Hem/Onc clinic first and did blood draws. Praise God, he made counts. He came in at 65,000 platelets. We then went over to the surgery clinic and met with Dr. Harmon and discussed where to place the new port and why. He will have his placed in the left side of his chest. This is the opposite side from the broviac. This will help reduce the risk of infection. It is going on the front so that his arms do not bump it when accessed. They only put them on the sides when it is a cosmetic concern and that is not a concern for me. After we did that we went back to our regular clinic and saw Dr. Berkow. While we waited Taylor turned the clinic upside down. He ran, yelled, jumped and everything in between. He was so loud, but at least they all saw how well he was doing. After a great visit with Dr. Berkow we headed upstairs to the one day surgery admissions and started the 2 hour process to get him ready for surgery. He fell off the slide and bumped his head, hope it didn't eat up to many of those platelets!! He finally fell asleep while we waited to meet the anesthesia nurse. The process is so long and boring, but it is also annoying because we have done this so many times and we still have to wait hours to discuss the same old routine. Oh well, we could be doing this in NYC and I would really be unhappy, so I will shut up now!! After we left the hospital we had to go mail his HAMA test to NYC. It better get there in time and not get lost. I would just die.
We have to be at Children's at 6:00 AM tomorrow. Yuck!! The surgery should take about 45 minutes with about 2 hours of recovery time. Hopefully we will not be there all day. He will be in a little pain, but they said that Tylenol would take care of it, so I guess it isn't to bad. He will be grumpy and sleepy all day. Maybe we can just sleep all day after we get home. Sounds like a plan to me.
We have an appointment on Wednesday to have him evaluated for speech therapy. Of course ever since the day I said he needed it he has talked a blue streak. Oh well, no harm in testing him. Maybe he is just going to talk late.
Please pray that tomorrow's surgery goes well and that he is home soon, with a small case of the grumps. Remember Taylor and all his friends as they fight their diseases.
July 22, 2003 Day +111
Today is a stay at home day for Taylor and I. It is a good day to be at home since it is so gloomy out. Taylor has already (it is 11:00) had a pack of oatmeal and 2 plates full of pasta. We have washed night night as well, so now things are okay again. The power went out while it was in the dryer. I though he would die of a broken heart. He was already upset that I took it away, but now it couldn't dry. Thank goodness the power came right back on. He decided last night that he was going to suck on night night and it was so nasty and wet. We might have messed up. Taylor always lays with us before he goes to his bed. Sometimes we move him before he falls asleep and sometimes after. Last night we all fell asleep, so he slept with us and I do not want to start that again. He has been in a pretty good mood today. He was clingy during the night night washing time, but otherwise he has played while I picked up a little, very little.
Yesterday we met nurse Rhonda at Cahaba Lily Park. Taylor had a blast and would loved to have stayed longer, but it was so hot. We went to Rhonda's for dinner and Taylor showed off for them. He ate a ton of her food, just not what she cooked. He liked playing with her dog, Lucy. Lucy is much smaller than Molly and he was able to actually play with her. He did really well at not destroying her house or being ugly. We had a great time. Thanks Rhonda and Dueff.
I talked with Beverly, a nurse from the surgery clinic. We will go to both the Hem/Onc clinic and the surgery clinic tomorrow. We will go over the procedure with Dr. Harmon. Taylor's surgeon is booked solid, so we are using someone else. We will do counts to see if he meets the platelet count and we will also do his HAMA test. This is the test that will tell us if he will return to NYC for another treatment. I will overnight the blood sample to NYC and we should know the results by Tuesday or Wednesday of next week.
Pray that Taylor makes counts this time and we get the broviac out. Pray that he is HAMA negative and we return to NYC for the next round of treatment. Pray that baby number 2 is more cooperative than Taylor was and we find out what it is on 8/1. Pray that this is the treatment we need to cure Taylor of this nasty disease forever.
July 21, 2003 Day +110
We seem to be getting back into somewhat of a normal routine and lifestyle. We still go to clinic weekly, but that is normal to us. NYC trips will become normal. Taylor slept all the way home from camp yesterday, so he was ready to play when we got home. We went to Wal-mart with Guh and he got toys. He didn't choose the simple stuff with her:) We rode with Pippy to his friend Butch's workshop and looked at his race cars. Then he went o ride his bike and to MacDonald's with Papa and G-mom. He finally went to sleep around 11:00.
This morning for breakfast he ate 2 biscuits and half a chocolate covered dough nut. We took him last Friday to Krispy Kreme to watch them make dough nuts he was more interested in eating than watching. He also ate a whole bowl of oatmeal and has had 3 glasses of tea, so we seem to be picking up in the eating department. we are going to meet Miss Rhonda at the park and then go have dinner with her and he husband. Taylor is supposed to be napping, but I hear him playing. Oh well!
Meredith called this morning and we worked out this weeks schedule. We cancelled tomorrows clinic visit and made an apt. for Wednesday. We will do labs and see Dr. Berkow at 8:00 and then go to the surgery clinic to meat Dr. Harmon who will do the surgery to remove the broviac line and put in the medi-port. We will have the surgery on Thursday, if his platelets are high enough. I am not to worried this time since he was so close last week. He didn't get any bumps or bruises to eat them up over the weekend.
Please continue to pray for Taylor's healing. Pray that he has more than enough platelets for Thursday's surgery. Please pray for all his friends that are also fighting this and other cancers.
July 20, 2003 Day +109
I am going to be honest, Jim and I did not want to go to camp. We were dreading it. However, we had a blast from the minute we stepped out of the car until we climbed back in today. We are all 3 ready to go back. We got there at 10:00 yesterday and got Taylor all coated in sun screen then handed him over to his counselor Stacy, who was also a nurse on 4-tower so he was comfortable with her. We went to the beach and played with the Hand In Paw dogs and Taylor made piles of rocks. We soon went to eat lunch. We got Taylor a hot dog, but he decided that he wanted my hamburger. He ate the entire thing bread, Meat and all. Thank goodness they had tea to drink and he drank his out of a big boy cup all weekend. After lunch the kids went swimming, but since Taylor still has his broviac he and Stacy stayed behind and made more rock piles and played with hoola hoops and bubbles. He cracked us up at one pint. There was a volley ball net that adults were ducking under. When Taylor was going under it he would duck every time.
The mom's went to a cooking session and made bracelets while the men did a wood working session. They built shelves. When they were done they came back to meet up with us ladies and we ate our dip we cooked. Then we played a bunch of silly games. Soon it was time to go back out into the sun and ride the boats. We went on the speed boat and Taylor took a spin on the pontoon boat. He took a short little nap but woke up when he got splashed with water. He tried several times to take a nap, but always realized he was missing out on all the fun. We had a sand castle contest and needless to say we did not win. Taylor did get a sand bucket out of it though. Taylor was really starting to wind down, but when the dance music started up he started to boogie. By 9:00 he was bathed and in the bed. That was the first bath in a long time that he actually dirtied up the rag. We had to wake him up this morning, so he has been a little sluggish this morning. We did group photos and a painting project. We made a family tree out of hand prints. We had to borrow another child's hands because Taylor was having no part in putting his hands in the paint. We left around 11:00 and we just got home at 12:45. Taylor slept all the way home and is now full of energy again.
We had a blast. We met new friends and ran into old friends. It was so much fun and if we don't get to go back this summer we will definitely go back next summer. Please pray for all our new and old friends. Pray that Taylor is cured of this disease and never has to endure this again. Pray Taylor makes counts this week and we are bale to get his broviac out. Remember to thank God tonight for all the doctors, nurses and camp volunteers that work so hard for these kids. We are so lucky to be here in Alabama with all that we have. It took a trip up north to really appreciate what we have.
July 19, 2003 Day +108
We are headed off to Alexander City and Camp Sam! I'm sure Taylor will have a blast, and we can meet some of our cancer friends. We will update tomorrow evening when we return from Camp.
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. Please click here to read more about this wonderful cause.
July 18, 2003 Day +107
Mr. Taylor chose yesterday to be the day he would eat and eat. He had a french toast stick and tater tots for breakfast, 3/4 a cheeseburger and fries for lunch and then ate 2 bread sticks and almost all of a pizza at the Olive Garden. Pop came over and brought the golf cart. Taylor drove us around the block a few times. He got to see some boys washing a four wheeler. We all know that excited him. He rode his bike in the driveway and had a crash. He has a cut on his elbow, but he doesn't care. He also played with those little things that come in fireworks that you throw and they pop. He couldn't throw them hard enough to pop them, so he was stomping on them. He was so funny because he couldn't stomp in the right spot, so it took forever to finally hit it. He would clap and yell when it finally popped.
Still no word on when we will get the broviac out. Our surgeon could only do it 8/5, but we will be in NYC by then, so Meredith is working on scheduling it with another surgeon. Hopefully we will hear back form her today. We leave tomorrow for camp SAM. It is at the Children's Harbor in Alexander City. I think Taylor will have fun. It is from 10:00 Saturday until 10:00 Sunday. He can't swim, but there is arts and crafts, sand. boats, fishing and lots more, so he will have a blast. There will be tons of kids there for him to play with. He needs to be with kids again. Yesterday in clinic he had a box of crayons. Another little boy asked if he could have it and Taylor gave it to him then cried because it was gone. He didn't know how to handle it by himself, so he climbed up in my lap and cried. The other kids mom made him give it back and Taylor was fine after that, but I hate he couldn't handle it on his own. I guess he wouldn't know how to since it has been 9 months since he has really played with other kids.
Please pray that we have a safe and fun trip to camp. Pray that we have that line out soon. Pray that Taylor is HAMA negative and will return to NYC for another treatment. Pray that these treatments are the cure he needs to be cancer free forever.
July 17, 2003 Day +106
Our response to the CBS Interview: CBS took, what could have been a good story about the need to have HR 2021 passed, and turned it into something that was totally unrelated, and not the point we wanted to get across. They turned our own words against us, and did not even mention the HR 2021 bill one time, ONE TIME! They made it seem that we were mad at our insurance company for numerous bills and letters that we have received from them. WE HAVE NOT RECEIVED ONE LETTER OR BILL FROM OUR INSURANCE COMPANY. We stressed the fact many, many times that we were lucky to have such a great insurance provider here in Alabama that was willing to do the right thing, and we wanted the bill passed so that our other friends receiving treatment would not have to bear the burden of the expenses. Those letters that they showed me shuffling through, those were emails that I sent to Senator Shelby in response to his letter he sent me, but CBS made it look like "insurance bills." They totally mis-represented our views, and I'm requesting a retraction immediately.
Last night was full of those simple pleasure that we should be enjoying. We went to Wal-mart and shopped without keeping him in the car or wearing a mask. He picked out a new Thomas the Train movie and some gummie worms. On the way out he reminded us that he had a quarter in his pocket and he wanted to spend it at the quarter machine. Thy had fake teeth, candy, sticky hands and all sorts of junk. Our simple child picked a machine that had teeny tiny erasers in it. He spent his quarter on a yellow alligator eraser. He has played with it all night and day.
Today we headed back to clinic to check his counts. Well prayer warriors all your prayers brought his counts up, but not enough. He had 42,000 up from 38,000, but needs 50,000 to have surgery. We have cancelled tomorrows surgery and Meredith is rescheduling it next week. I do not know yet what day he will do it, it depends on Dr. Barnhart's schedule. He shouldn't have trouble making it next week if he continues to jump at that pace. Keep your fingers crossed. We don't want to go back to NYC with those noodles and cleaning supplies. We went back to 4-tower and visited Rhonda. He asked for a ball, but it was much busier today than it was Tuesday, so we didn't stay and play today.
Don't forget to watch channel 42 CBS tonight at 5:00!!!
July 16, 2003 Day +105
We have been busy today. We left at about 10:30 and went to Toys R Us. I got my hair cut at Angel Hair next to the toy store. We were early so we went and killed some time in the store. We then went and got my hair cut off again. Jim was interviewed at his work by CBS news. Then they came to the hair salon and they filmed Taylor playing while I got my hair cut and then they interviewed me. It was an interesting interview. By the time it was my turn Taylor was ready to go, so he is yelling go and eat eat in the background. He took my microphone off and said "what's that"? After that I was so tickled I laughed through the whole thing, We are not sure if it will air tonight or tomorrow. Well, Now we do know. Bonnie McLaughlin from CBS just called and asked a few more questions and said it will air at 5:00 tomorrow night. She and her camera man, Toby, were very nice and Taylor played with them like he had known them forever. We would like to thank CBS for doing this story and Amsouth and Angel Hair for allowing us to do the interviews.
After our 15 minutes of fame we went to McDonald's and took it to Nana's to eat. He had a blast being in a new place for a change. He tried all her candy and of course spit it all out. When her kids woke up from their nap we went down stairs to play for a minute. He played with all the toys like he didn't have any toys at home. He was getting sleepy so we went home. He fell asleep in the car, so I drove the back roads home to take longer. I knew (and I was right) that the little cat nap he got in the car would be enough to keep him from napping when we got home.
We will go back to clinic tomorrow for a CBC and see if he will be able to get his broviac out Friday. We are in the process of scheduling another test to see if he is eligible for speech therapy. He was not eligible in February at 25 months. He knows all his colors and a few numbers and letters. He knows shapes etc., but he just doesn't verbalize well. He does much better than he did at the time of the last test. Being with preschool kids for so long I have come across kids that speak better and worse, so I really do not know if he will qualify or not. If he does they will come to our house and work with him.
Please pray hard tonight for those platelets to be high tomorrow and us to be in surgery Friday. Pray for a safe journey to camp SAM this weekend. Pray for all our friends that have cancer.
July 15, 2003 Day +104
We had a very productive clinic visit today. First off we were in and out in an hour, way to go clinic 5. We talked over many issues with Dr. Berkow. He took Taylor off his Acyclovir and Zantac. We are only taking Bactrim on Friday, Saturday, and Sunday. That makes life so much easier. He also gave Taylor the all clear to go to Camp Smile- A- Mile this weekend. Taylor has never been to anything like this, so we are looking forward to going. We also discussed the broviac removal. We need all your prayer warriors on this one. Taylor only has 38,000 platelets and he needs at least 50,000 to have surgery Friday. We will recheck on Thursday and if they are not 50,000 we will have to cancel surgery. So we need lots of prayers on this one. With each med dropped and line removed our lives get a little closer to normal. After our visit with Dr. Berkow we went to 4 tower to visit and ended up staying close to 2 hours. He was having a blast playing ball with Holly, Nataly and Stacie. He was having a serious pants issue. His pants would not stay up, so we pinned it to his diaper and then diaper and all fell off. That didn't slow him down any. We then headed to the pharmacy to order his GM-CSF for next round of antibodies. I then had to go back upstairs and find Meredith to rewrite the prescription since our pharmacy couldn't take one written by a NYC doctor. We got that taken care of and the prescription for a med to help with his constipation. We also went to get some lunch to kill time while we waited for the prescriptions to be ready. Taylor drank his milk, but ate nothing. He had already eaten almost all of a bag of cheese puffs. We are finally home and he is ready for a nap.
Last night we went to Tuscaloosa to eat. Why Tuscaloosa?? We live right in the middle of Tuscaloosa and Hoover, so we went that way just for a change of pace. We took Taylor through campus. Even though it was the wrong team he enjoyed seeing the stadium. He again was afraid to go to bed, but it didn't take as long for him to finally fall asleep last night as the night before.
While I was at clinic I found a flyer on a new childhood cancer car tag. It is going to be pre-sold and you must pay $50 at that time. If they get 1,000 promises to buy they will send it into circulation. The tag will give $41 to UAB/Children's per tag sold. This will really help in finding a cure of for childhood cancer. I will have Jim put the links and more info on the page soon. I know you all want to sport a childhood cancer tag just for Taylor and all his friends. (Hint Hint Clue Clue)
Please pray for Taylor's platelets to rise enough for line removal. Please remember our friend Meagan. She has a brain tumor and more cancer has been found in her lungs and she will now need a transplant. Pray for our friend Tyler who was recently transplanted. Pray for all our other cancer friends. Pray for nurse Nataly who is having her wisdom teeth out tomorrow and is not to excited about it.
July 14, 2003 Day +103
My doctor appointment went fine. The Dr. couldn't find the heartbeat, but I wasn't worried since Dr. Damrich had already said that I probably had an anterior placenta. Meaning they will not be able to hear the heart beat with their hand held monitor until much later in the pregnancy and I will not feel movement until much later. I had to get an ultra sound to check the heart beat. All was fine and I do indeed have an anterior placenta. She looked at the baby and showed me the head, spine and a hand, but no gender parts were visible yet. I should go back on 8/11, but since I will be in NYC again he has agreed to try on 8/1. They do not know if 18 weeks will be enough to see the gender, but he will try and if not I will get another one when I get back from NYC. I had also lost 2 pounds. Again, I can't help but be glad to hear a loss even though this is not the time to lose. I promise I ate in NY. We ate McDonald's everyday and that is enough to make you as big as the side of a house, but when you have to walk everywhere you go it doesn't go to your hips. He said as long as I did get the nutrition I needed I should be okay just not to lose a lot.
I jinxed the bed situation last night. Taylor was absolutely scared to death to sleep alone. He finally stayed in bed, but cried and whimpered for a while. I had to keep going in and telling him it was okay. He finally went to sleep after 1:00. He slept until 7:30 and woke up crying. He was a little mopey and I called Children's to give them a heads up. He required a blood transfusion last week and I am thinking he may need one now. Papa came to play with Taylor while I went to the Dr. He perked up when he got here, so maybe he is just being a baby for me. Taylor will go to clinic tomorrow. We will find out if he needs blood and if his counts are high enough to have surgery on Friday.
Please continue to pray for Taylor and his healing. Pray for our other NB friends: Carter, Chris, Morgan, Jacob, Laura, Jay, Sophia, Austin, Harrison, Christi and all our other cancer friends. Pray for our new friend Lucas.
July 13, 2003 Day +102
Today was a nice, normal Sunday. We slept until 8:30. Mom and dad could have slept much later, but Taylor had other plans. We did go eat at The Cracker Barrel. It was nice to have some southern cooking for a change. We then came home and I unpacked 2 of our 3 bags and repacked the stuff that will travel back and forth every time. I just keeping passing by the pile of laundry, I will get to it this week. Guh came over and played with Taylor while Jim and I went to Wal-mart and Sam's. We didn't buy much, but it was good to be back home and to drive ourselves around rather than pay the awful driving cabbies.
Last night Taylor shot fireworks for the first time ever. He enjoyed the pretty, quiet ones. He did not like the loud ones. After one loud one he asked to come inside. He was so tired. We bathed him and changed the dressing on his broviac then headed off to bed. He would have been asleep in no time, but we had a little problem. Taylor's room stunk all day. We looked all over and couldn't figure out the problem. Finally, as we tucked him in bed and got close to the bed we discovered the source of the stench, a 3 1/2 week old milk cup. Yummy!! After changing the sheets and lysoling the room we tucked him in again and he was out. He has done really well with getting back in to routine here. He didn't try to get out of bed and he didn't try to fight getting in the car seat. We were worried about that. In NYC it is not required that they sit in a car seat in a cab, so he has been sitting in our laps all this time. We just new that he would expect to do that once we got home, but so far he hasn't asked. Taylor also enjoyed a day full of visitors yesterday. He showed off all the goodies he got in NYC and all his pictures.
Continue to pray for Taylor and all our other NB and cancer friends. Pray for a clean checkup for the both of us this week and that his platelets are high enough to get his broviac out on Friday. Please remember our new friend Lucas in your prayers. He is a 14 year old boy who is mildly retarded and is currently being tested to see if he has Leukemia. Please remember him and his family as they go through these difficult days.
July 12, 2003 Day +101
What a night!! Since we had to leave the RMH by 2:00 and there was only so much to do with a sleepy 2 year old and 3 bags that way a ton, we ended up at the airport at 4:30. We had some ice cream and dinner and then just sat. Taylor finally fell asleep in his stroller and slept until it was time to board the plane. We had a few scares while waiting. A plane due in at 7:40 was post poned until 8:05 and then again till 9:30. Another flight was cancelled due to weather. We were scheduled to take off at 8:30. At 8:40 when we were still not boarding we were so afraid that our small plane with only 31 passengers would be cancelled too. Finally we boarded and then toured the airports runway area for a long time. We were beginning to think he was just going to drive us to Birmingham. It was a nice flight, it was so clear that we saw lights from the ground all the way home. There was a lightening storm in the distance that was amazing. Right as were ready to descend we hit a nasty patch of turbulence. We dropped several feet on several different occasions. I was afraid of crashing, but as far as the motion it didn't bother me since I like roller coasters and such. I wondered how safe it was to be riding a "roller coaster" while pregnant. Taylor on the other hand did not enjoy it. He was very frightened and started to cry. I held and him and he was fine. He walked through the air port and was very excited to see Papa and G-mom. He acted a little shy at first, but warmed up quickly. He was excited to see Guh waiting on him at home too. We had to look at everything in the playroom before he could go to bed. Jim and I couldn't make it anymore, so Guh stayed up way past her bed time to play with him.
He has gone strong all day today. Finally at about 4:00 he went to sleep. Not much going on here. Jim has cut the grass and I have looked at the bags that need to be unpacked, but done nothing with them. I will get to it soon. We will update tomorrow, just wanted you all to know we are home and all is well. Papa has some fire works for Taylor since he missed it on the 4th. We will do that tonight and let you know what he thought about it.
We are home, and it is so good to be home!!! Taylor has been non stop since arriving at "my house" last night at 11:30. We were late arriving to Birmingham due to congested traffic at LaGuardia Airport. We sat in the plane on the runway for 1 hour 15 minutes. We didn't care as long as we made it back last night. They cancelled a couple of flights, and we just knew they would cancel ours also. Taylor stayed up until 1am playing in his playroom. He also woke up this morning at 6am to continue playing in his playroom. Do you think he was a little home sick? A big yep! He is starting to wear down now (1:30) and he will probably be napping soon. We will update more later today, but we wanted to let everyone know we made it safe and sound to Birmingham.
To see video of Taylor dancing at Plant Hollywood, click here. To see video of Taylor on the Ferris Wheel, click here. To see video of Drunk Taylor (after being sedated for radiation), click here.
July 11, 2003 Day +100
Today's treatment was ok. Taylor had to have all three doses of pain medicine, but he handled the pain really well. We have packed and ready to head back to Sweet Home Alabama! We will update more tomorrow.
Well, it is 2:30 here in Manhattan and we are checked out of the room with 6 hours to kill. Jim and Taylor are out walking in hopes that Taylor will fall asleep. I decided to come down and give a more detailed update. Unfortunately that will not take 6 hours. Anyway, we got a late start on our 3F8 today, but still finished by 10:30. He required all 3 doses of Dilaudin. The first dose is given as a pre-med, the 2nd and 3rd as needed for pain. He got the 2nd dose right when he first mentioned pain that seemed to be the key for him yesterday. Today however, he got hit late with more pain and took the last dose. He had a pretty nasty case of hives as well. We were back in the room by 11:00. Jim got us some lunch and we finished packing up the last little bit. Taylor had no desire to nap at all even after 2 doses of Benadryl. So, he just layed around while I cleaned the bathroom, vacuumed the floor, and did the laundry. He laughed when we vacuumed the air out of his blow up bed. We had to get every bit of air out to get it in our luggage. We came with 2 bags and are leaving with 3 that are so full and sooo heavy. You have to check out by 2:00 or pay for another night, so here we are killing time. I guess we will end up at the airport before to long just for a change in scenery.
We will update again tomorrow all about our journey home. Jim just came back in with a still wide awake Taylor:)
I just wanted to update to let everyone know that those letters you are sending to your congress people are working. One of my mothers friends (Judy M.) sent an email to Congressman Bachus. She got the standard response via the postman, but his response totally disregarded our issue (HR 2021). I sent an email to his office stating that fact, and stated if they took the time to hear the voice of the people, they could better serve the people. I received an email from Congressman Bachus office today (thanks Johanna C.) wanting my phone number so we could talk about the situation. She called me within 20 minutes. She will pass the information along to Congressman Bachus and let him know our concerns about HR 2021. Please do not stop sending emails and letters!
July 10, 2003 Day +99
Today was a very easy day. He started to grab at his chest just as Cat came in to flush his line and she gave him the Dilaudin right then. It really helped him to never really get severe pain. He whines a little and he groaned, but he never asked to be held and he went to sleep shortly after the pain hit. Without the few grunts and the elevated heart rate we never knew he was in pain. Only one more day and we will head home. In fact after I type this I am going to pack up everything we do not need tomorrow, so we are ready to hit the road at 6pm tomorrow night. I have to wash sheets and towels tomorrow, so I want everything else done.
Last night was bingo night, but we missed it because Taylor fell asleep at 7:30. He slept until 7:00 this morning and woke up in a great mood. Last night he finally ate some ravioli and about 6 powdered dough nuts. We had to go to the store and get more "nut nuts" (dough nuts) for him. His bottom is looking better, but still raw. We have been putting the Neosporin on the open spot and the cream on the rest and it seems to be working. He has not pooped today, so keep your fingers crossed. Tonight is tie dying night. The kids will do t-shirts. I hope the rain holds off and Taylor is awake. He will enjoy it if we can talk him into going outside. It is easier to get him to do activities outside than inside. It is only in the 70's today and dreary, so hopefully it will not get to cold and rainy by 7:00.
The infection control lady came by to talk to us. She was not much help. We just wanted to be sure that all precautions were being taken. Some nurses are great and others just slack as far as the cleaning of lines go. I will say our PDH nurses are all great, but the inpatient ones were not so great. She had several good points and showed us where their reasoning behind things came from, but some of her points were absurd. For example, they allow their neutropenic kids to go to the play room with all the other kids. In Alabama they brought toys to the room if you were not well enough to go to the playroom. Her reasoning behind this is that they treat the whole child, physically and psychologically. That is true, but you also do that by bringing the child some new activities everyday rather than putting him in a room full of people and jeopardizing his/her health. She went over a lot of different things that I will not go into, but that was the one thing that Jim and I just had to laugh at. As soon as she left our nurse came in to disconnect Taylor and she used a paper towel to turn off the water and put gloves on all things that should normally be done, but aren't. We know the lady went and told them they had to do all of that when working with Taylor. I feel bad because we look like a bunch of tattle tales, but at the same time, we wouldn't have to tattle if these simple, everyday, common since things were being done by all the staff. She was very quick to point out that they are getting waterless soap installed in all the rooms. She was very excited about that "new" technique. Not only has Children's been doing that we did that at the day care I worked at in Auburn. Nice try though!!
Keep praying that all the pain and stress of this treatment is what we need to cure Taylor's body of this disease forever. Pray for our safe return to Alabama tomorrow.
July 9, 2003 Day +98
It is so nice to be back on our normal routine in the day hospital. Today was relatively easy. He only required one rescue dose of pain medicine. He hurt and he did cry, but it was over in about 5 or 10 minutes. We were gone by 10:30, a record they said. Only 2 more and we are headed home. He will return home on day 100 post transplant. That is a nice day to go home on, we will have 2 reasons to celebrate now. Our nurse is finding the nearest Taco Bell for me, so that I can get fix for my cravings.
Taylor's bottom continues to hurt. He has had rashes a million times worse, but this one really is bothering him. I guess it is the 3F8's on top of it. We got him some custom paste at the hospital today and hopefully it will clear it up. We put Neosporin on it last night and it already looks a little better. He is still pooping, but very little, so maybe it will all be cleared up soon.
We ended up getting pizza from Domino's last night. Pizza night here at the RMH consisted of making your own pizza. We opted not to for several reasons. Number one being he is not patient enough to wait his turn to make it then wait on it to cook. Number two is all the people were digging in the same bowl for ingredients and we were not comfortable with him eating something that had been touched by so many people. He ate a whole piece crust and all, so it was worth it.
Please continue to pray that this is all working and it is not an unnecessary pain we are putting him through. Pray for Morgan, Jake, Carter, Jay, Sarah, Christi and all our other cancer friends. Pray that they too all get the answers they are looking for in the hunt for a cure.
July 8, 2003 Day +97
Another treatment down. Only 3 more and we will be off for a while. Today was rough for him. He required all 3 doses of dilaudid and some help breathing. He hurt really bad. It was over in about 20 minutes and he fell asleep and is still sleeping now. He required some benadryl for hives as well. He is still fever free and feeling good. Taylor gave one of his nurses a drink of sweet tea. Up here they don't just tell you they don't have sweet tea, they ask what it is. They have never even heard of it. Well, our nurse was brave enough to take a "swig" and she liked it. We may get some northerners to drink sweet tea after all:)
Last night Taylor woke up from his nap around 5:30 and we headed down to the living room for games and food. They had sandwiches that looked like a million bucks, but tasted not so good. Taylor even cried because he didn't like it. We headed off for pizza instead. Even though he napped so late he still went to bed at 9:30. He was a bit grumpy, but that is to be expected. His poor bottom is raw from a combination of things. He was constipated from 3F8 and pooped a softball out and now he has diarrhea from the antibiotics, so needless to say he is in a little pain there. Tonight is pizza night here at the RMH, so he should be happy with that.
Please pray that this horrendous pain we put him through is the cure he needs. Pray he remains fever free and never has to go inpatient again, at least not here. Pray for all our friends both new and old that are battling cancer.
July 7, 2003 Day +96
LATE UPDATE: The excitement never ends around here. When 12:30 came and went and no mention had been made of him getting his shot and going downstairs for 3F8, we called the nurse in. He comes and in gets very rude when I try to ask when he will go and when he will be discharged. He says that we will be coming back up to the floor after treatment. I said, No we will be leaving rather on doctors terms or AMA signature. He tells us he has nothing to do with that and walked away. I told him to get a doctor and he turned and very rudely said I have 5 patients and I am busy. Well, That was the last straw. I went to the front desk and got the patient representative number and turned him in. He got another nurse to do is job and bring us down to the day hospital. His day hospital nurse immediately jumps them because as we told them he was to be discharged from inpatient and sent down to them. They got it all settled and we never went back upstairs. I don't know if we were discharged or not. The people in the day hospital told us to go, if they want us to sign discharge papers they can come to us. That was how we felt as well, so we left.
Today's treatment was a bit rough and it was our fault. We opted to not get the initial dose of diluadid, but to wait until the pain started. This medicine makes the kids so mean and grumpy that we thought we would try to wait it out. Big mistake. He was in so much pain. He did calm down after she gave the 2nd dose, but it all works much better the way they had it, so no more experimenting for us. It is 4:00 and we are all back at the RMH and are going to nap. I am sure we will have a long night afar all the napping he is about to do. We will be back on our regular schedule tomorrow and we will be heading home on Friday, Yahoo!!!!
Well, it has been another adventurous night. Jim and I left at 6pm last night and went back to the RMH to eat. We left Taylor sleeping , he napped from 2:30 to 8:30, wow! He stayed up until 1:00 AM last night, but that was okay since the old fart behind the curtains snored all night. Taylor kept asking if it was a dog barking? At 3:00am, Jeanna and Pam were still awake from the snoring and were watching TV (with the sound off mind you) and the old fart woke up and had the nurse make us turn our TV off because it was too bright in the room, even though our crew was up, as well as his kid, due to the snoring. Anyway, enough about him. Taylor is nearing the 48 hour mark of being fever free, however, that isn't clearing the confusion any. Taylor's blood pressure dropped to 97/42, a very normal range for him while he is sleeping, yet they were freaking out, and said that was critically low for a child that age. Whatever???? They wanted to pump him full of more fluids which was crazy and could cause massive heart failure. Pam finally went and asked for a medical dictionary, and looked up the antibiotic (vancomiacin). Guess what one of the side effects of the antibiotic is? You guessed it, low blood pressure. When Pam told the doctor that, she said yes, all antibiotics cause lower blood pressure. What's the problem then??? There was not one. Taylor always has had a lower blood pressure when he is sleeping, especially deep sleep, and Pam kept telling them that. When Jim got there at 6am, he told the nurse that, and they had the nerve to say, well, if we had known that, we wouldn't have worried as much about the BP. We were also told this morning that they would keep Taylor longer to figure out what was going on. We finally just decided that if they didn't release him at 6:00 PM, we would sign a AMA (against medical advice) and leave. This was totally crazy to be keeping him in patient over a mild cold, when his counts and ANC were well above normal range, and could handle any cold or virus. It would be different if he were nuetropenic with no counts. They finally talked with the NB team and decided to release him at noon so that Taylor could receive his 3F8 treatment in the day hospital, and then be sent to RMH, thank goodness!
Now for the cuter things. Taylor is sleeping in an adult hospital bed for the first time and he is loving it! He has pushed the buttons and rode it up and down, another sign our friend Austin is watching over us, because Austin loved to play with his bed controls. Taylor also didn't want Jeanna to wear her brown loafers and demanded she wear sandals instead. Saturday when she came to the hospital, Taylor noticed the brown loafers and he said "NO-NO, POPS shoes." They look just like an old mans shoes that my pop wears and he didn't like Jeanna wearing the same shoes. He is a mess!
Keep those prayers coming and some patience for Jim and I. They are being felt and heard, also keep your fingers crossed that we are in B'ham at 10PM on Friday night!
July 6, 2003 Day +95
Well after yesterday's post, I headed up stairs to get Taylor ready to go back to the hospital for his dose of meds and then we were going to come back and enjoy the free dinner provided by the RMH. That was not to be. He had another fever when we got to the hospital and was admitted. He was given 2 meds in the urgent care unit before being sent to a room at 9:30 at night. G-mom and Jeanna stayed with him while Jim and I stayed at the RMH. It has been rough for us, but Taylor really doesn't mind. He has been fever free for 24 hours now and will go home tomorrow if he stays fever free. If he spikes again we will draw more labs and stay another 3 days. Needless to say, we need your prayers to keep him fever free and that we get home on Friday as planned.
Taylor went to the play room today for almost 2 hours. He played of course with a doll house. This time there was a million pieces of furniture. I hope we have a girl this time, so he can have a doll house!! Several NY firemen dropped by to see the kids and Taylor and his woo woo noises stole all their attention. He had a great time playing ball and other things with them. They were super nice, they asked all about him, his disease, treatment and survival rates and even offered to donate blood and platelets for him if needed. He asked to go eat eat, so he went back to the room and had almost all of a grilled cheeses and then watched the Wiggles. HE fell asleep at 2:30 and when Jim and I left the hospital at 6:00 he was still asleep. Good luck G-mom and Jeanna, it looks like ya'll will be up all night:)
Now, for the rest of our experience, it is so not good. We were a little confused as to why he was kept last night when he had great counts and no sign of a positive culture. This morning the nurse told us he did indeed have a bacterial infection in his broviac line and that we would stay inpatient for 7 days. Well, of course we are upset. If we stay that long we will miss our flight outa here. Not 10 minutes later the doctor came in and said all cultures are negative and if he stays fever free he will go home tomorrow night around 5 or so. What??? We are lost. She said the nurse said that because we are in for possible infection. Well, he need not tell us anything until he knows. We were totally freaking because he has never had a line infection and we didn't know what to expect. The more we thought the angrier we got. They do not use betadine on the lines, only alcohol. He has never been infected because Children's took such precaution with the lines. So, we questioned why they did not. Her answer, betadine will kill what they are trying to grow in the culture. If they used the maximum protection to the central line, and kept it from getting infected, there would be no need for drawing cultures. When asked why they didn't use it other times the answer was it is a sterile environment and not needed. They also don't use gloves or masks when dealing with neutropenic kids. They do wash their hands, but the sinks do not have pedels to turn water on and off, so when they get through washing their hands, they touch the handle to the faucet, basically getting their hands dirty again. It is so sterile that as they tell us all this, there is a fly the size of my big toe swarming her head (on the 5th floor no less, I guess insects use the elevator here in New York). We also found a used sensor stuck to the sheets they brought us. Very sterile, huh. We also share a room with another child. We of course woke them as we got admitted last night. Then Taylor wanted to watch TV. The dad complained to the nurses that the TV was too loud. Although the dad got Taylor back. The dad snored so loud he woke Taylor up on several occasions and every time Taylor said "what's that?" This kid next to us is so whiney and has a very annoying voice. The bed setting also seems against HIPPA privacy laws. We hear everything about the child's treatment, counts, etc. I could go on forever, but I know you don't want to know. I will say however, that I LOVE Children's Hospital. I loved you all before, but now more than ever. I was told it was state of the art hospital, but now I see it first hand. I even told the doctor to excuse us from asking so many questions, but I came from a state of the art hospital and was not used to this. Okay, I will stop boring you all now.
Please pray that Taylor has no infection and that he can come back to the RMH house soon. Pray we are back in Alabama on Friday night. Thank God that we have been lucky enough to have Children's and all the wonderful staff involved in Taylor's care. Thank God for the expertise we are receiving from the NB team at MSKCC, but ask him to better the procedures of the inpatient area.
July 5, 2003 Day +94
Today is another hot day here in New York City. It has not been hot here in weeks and now it feels like home. Taylor is doing much better today. We finally got home around 11:00 last night and he was full of energy. He finally gave in and fell asleep around midnight. He slept until 10:00 this morning and woke up with a 96.7 temp, much better. He didn't eat much of anything yesterday, but today he ate pretty good, so I guess he feels much better. We have to go back to the hospital today at about 5pm to get another dose of antibiotics, but it should be a quick visit this time. If he has no fever they will not even draw labs again.
Jim and I went out alone for a while today. It felt weird not loading and unloading a kid, stroller, bag, tea, night night etc. we had quite a taxi cab experience. We got in and Jim gave the address of where we wanted to go. One block away we decided we were mistaken and asked to be taken 10 blocks the other direction. We go there and got out only to realize we were still wrong. We went in a Staples and got a phone book to look up the address and saw that it was only one block away from the original address we gave. So, we caught another cab and finally got to where we wanted to go. We walked up to the door of the restaurant to see it didn't open for another hour. So, again we caught a cab, this time to Times Square to go to Red Lobster. We found a Woody (from Toy Story) painting that could be personalized. Jim stayed and had Taylor's name painted on it while I walked to get our names on the waiting list. I got there to see a big sign saying they are remodeling and will reopen on July 22nd. So, I waited on Jim to get there and we headed to The ESPN zone. It was pretty good, but a very odd seating process. We were confused, but we made it. After we ate we went to Madame Tussaud's wax museum. It was pretty good. Brad Pitt was the only one that didn't look like himself. The others were so real looking. We got some good pictures of our favorites.
We are back now resting and waiting on time to go back to the hospital. We will hopefully make it home in time for the free bar B Q they are having tonight. Now, I say Bar B Q, to us that is a food in and of itself, but here it just means a cookout consisting of hamburgers and hotdogs. The upcoming week is full of activities we think Taylor will enjoy, so hopefully he is feeling 100% better and is able to attend them all. We can not wait until Friday night to roll around and we can sleep in our own beds, drink sweet tea, and go to Wal-Mart. I am having serious withdrawals:)
July 4, 2003 Day +93 Happy 4th of July!
Well, today has been good and bad. We all got ready and headed to McDonald's for some breakfast and then caught the subway to the Statue of Liberty. It was pretty cool to be looking at her on the 4th of July. We then headed over to ground zero and St. Paul's Cathedral. G-mom and Jeanna had never been and I think they enjoyed it. Taylor and I sat outside the church while they went in since we had already seen it. While we waited Taylor climbed in my lap and he was very hot. As soon as I found the crew again we caught a cab back to the RMH and Jim went to buy a thermometer. Taylor had a fever of 102.5 under his arm, so off we were to urgent care at MSKCC. They immediately took cultures and blood and told us we would be admitted for 2 or 3 days while the cultures did there thing. Well, miss emotional, hormonal, Alabama here pitched a fit. I know his counts are good and the fever is all 3F8 side effect. He was jumping and running and have a grand time just hot. I bugged the doctor in my normal fashion until he gave in and called Dr. Modak and asked if he could just give Taylor a shot of antibiotic rather than admitting him and running IV antibiotics. Thank the good Lord above, Dr. Modak agreed and we did not have to stay. He will however, have to go back tomorrow to receive another shot of medicine since it only lasts 24 hours. He also had a low hemoglobin count, so he is at the hospital with G-mom and Jeanna getting blood while Jim and I came back to RMH to update and get some toys. It will take about 3 or 4 hours to get the blood and it is 5:30 here. We will miss the fireworks show and free dinner. We are all a little bumbed out to miss the best fireworks in the country. That is okay though, we can watch it on TV in our little hospital room.
It is hot here today, much hotter than a normal day here. I think Taylor also got a little over heated. We had decided not to take him to the fireworks anyway to be on the safe side. I guess we better just be thankful that we are going to get to come back to our little room in the RMH rather than stay in the hospital. I am not sure what effects this will have on his next week of treatment. We did get an earlier flight, we are now scheduled to leave at 8:30 Friday night instead of Saturday night. That will work out much better especially for Jim. He will need a few days to rest before going back to work on Monday. That is going to be one hard Monday after 3 1/2 weeks off. Taylor and I will still have some running around to do. I have a doctors apt. on Monday and he has one on Tuesday of the week we return home.
Please pray that this fever is just 3F8 related and not infection. Please pray that I fought and won only because it was the right thing to do. I do not want to put Taylor's health at risk, but I really do not see reason to stay. Please pray it does not delay the next week of treatment or our departure for home. Happy 4th, YA'LL!!!!
July 3, 2003 Day +92
Update: When Taylor woke up from his nap he found his G-mama and Jeanna there. We took them to Times Square and to the toy store. He talked them into riding the ferris wheel and into a horse and buggy ride. It was a nice ride through Central Park. We ate at TGI Friday's and he ate pretty good. He showed them how to hail a cab and made sure to tell them to hold on so they don't fall.
Please remember to pray for Taylor and his success in this treatment. Pray for all his cancer friends. Please add Cathy, Steve, Andrea and Randy Webb to your prayers. They received some bad news about their pregnancy last week.
Today was as usual, a little bit of pain, but Taylor managed the pain very well. He is such a strong little boy, and has a very high threshold for pain. Our first week of antibodies is over, and it went pretty much as expected. We have an off day tomorrow for 4th of July. RMH will be taking the children downtown for the Macy's Firework Display, and Taylor should enjoy all the fireworks in the sky. They say it is the best firework show in the country. The NYPD and FDNY close off a street up front for the cancer patients to watch fireworks by themselves, so we will not have to get into the large crowd. We are hoping to have a relaxing weekend and start this last week of antibodies so that we can go home. Taylor is very home sick and can not wait until he gets back onto the plane to fly home. We have also met a lot of other kids with neuroblastoma while receiving treatment here at the hospital. Our bed partner is a sweet little girl named Christi (her webpage). Please take a minute a say a prayer for her, she is such a strong fighter.
Yesterday, after Taylor came home from treatment, he got sick and threw up on night night and frog. It seemed to help his recovery though, and he was in a very good mood the rest of the day, and ate almost all of his grilled cheese sandwich that he had for lunch/dinner (we ate at 3:00). He also went to bed at 9:15 last night, so he got a very good nights sleep, and was up and ready to go this morning.
July 2, 2003 Day +91
Another day down and 6 to go, no treatment on the 4th. Today we were a little worried. Taylor had no pain and no pain can mean HAMA. It is way to soon for HAMA. We asked a hundred questions trying to see if that was normal or what. Finally on the flush he got pain. I hate to say we were happy to see that pain, but we were. In this case pain is a good thing, it means it is doing it's job. We were gone by 10:30. He responds very well to his rescue dose of dilaudin and is able to calm down quickly. Today he maintained all his stats in the normal range with his heart rate only going into the 140's. He did not get hives today like yesterday. He got a little flushed, but I think it was pain more than a hive break out, they must have too because he never got an extra dose of benadryl. He is sleeping off the medicine now. The days are nice when we have the option of napping all day as well, but at 1:00 AM rolls around and he is still wide open we regret it. I tried to give him benadryl last night, but the pharmacist said not to since he is on morphine too. Two sedative meds could cause breathing problems, so she said don't do it unless absolutely necessary. So, at 1:00 I just turned off everything and went to sleep. I have no idea how long he stayed up, but he had several toys in his bed this morning.
Yesterday he woke up around 3 and we went to none other than the Olive Garden for a late lunch. He didn't eat much of anything and I was a bit worried after he lost so much weight over night. We went to Toy's R Us and got a few things and came back to the room. He was being awful, so we put him back to bed. I woke him up at 7 so he would go to bed at night, but if I had known how ugly he was going to be I would have left him alone. We went outside to do arts and crafts, he glued some red, white and blue goodies to a box and a picture frame. He was bored quick and headed off to play basketball with a football. We went back to the room and I got to journey to McDonalds for dinner and to Gristede's for a pack of chocolate chip cookies. He did eat about half his cheeseburger, so I felt a little better. This morning he weighed 12 kilos up from 11 yesterday.
July 1, 2003 Day +90
Today was better yet worse than yesterday. We got started much earlier since he had already been given his shot and didn't have to wait that hour. However, he was in a lot more pain today. He cried really hard for about 10 minutes and then he tried to sleep, but was moaning. He did not require oxygen, but his sat. rate did dip into the 80's. He is supposed to get 02 when his stats hit 93, but it came back up quickly so he never needed it. I am glad because that would have really freaked him out. His heart rate went up to the 170's today and his BP went up, but that is all normal and to be expected. He was done by 11:00 and we were back in the RAH napping by 11:30.
We will be waking him up in a while because last night he was still up at 1:00. It was pitch black and he was still wandering around the room. We are going to go out to eat tonight since there is nothing going on here and we will try to go somewhere Taylor wants to go so that hopefully he will eat good. He weighed 11.0 today down from 11.7 yesterday. That still comes out to 25 pounds, but we don't need to lose any. It is normal for them to lose there appetite during this treatment. He actually ate a fairly good dinner yesterday, but he had no lunch at all.
Please continue to pray for Taylor, Morgan, Chris, Carter, Gracie and all our other friends. Remember all the families who have lost their loved ones to cancer and remember all the families that will be diagnosed.
Back To Top
Go to News Archive: | Go To TaylorWatts.org