October 5, 2014 Day +4204 post transplant Day +3902 off treatment

It’s been a while and we’ve been busy as usual!!

Let’s back up a few months….

July- Taylor had a fabulous week at teen camp. It was his usual fun plus new things only allowed at teen camp.

Logan went with a baseball team mate to Florida state University for a week long baseball camp. They had a great time being college boys for a week! Taylor rode down with paw paw the latter part of the week to watch and then bring the boys back home.

August- We headed to Disney for baseball. Our team tied for 13th. Not too bad. We had fun in our happy place with some of our favorite families!

We started school! Yuck!! Logan is in 5th grade, his last year at MES! Sad!! Taylor is in 8th grade, his last year at MMS! Happy! I hope mms is better for Logan because it’s been hell for Taylor. Just in the academic/IEP area. He likes school socially and stuff. The school doesn’t do well providing and following what’s written in the IEP.

We went to family camp at camp SAM. Fabulous as always!!!

September- football is in full swing. No undefeated team this year. They’ve lost 3 in a row. Oh well!

Logan hurt his foot and was on crutches a week. ER visit, but luckily not broken!

We did the camp SAM monkey C Monkey run 5k.

We’ve only played 3 fall tourneys. A 1st, 2nd, and a 6th place. I think we are done for now.

Taylor jammed his finger and wore a splint a few days. Then he had the same injury as last year. Bruised growth plate and a cast just to keep playing!

Logan pulled something and hurt his back. He played through it since there were only 9 players, but he was hurting!!

Logan had good poisoning or severe tummy bug. He missed 3 days of school. Taylor had a mild case and missed 2 days.

Just life with active boys!!!

Day +4114 post transplant day +3812 off therapy

Today Taylor left for his 11th year of camp at camp smile a mile. This is his first year of teen camp though! He’s growing up before my eyes! I’ve always said, I don’t want to rush his growing up, but I want to know he is ok and is grows up. It’s happening fast, but he’s doing it! Praia God!

It’s been busy since our last update even though it’s been only a month! Logan’s team won the 10u major state championship. We went to windcreek, tannehill, buck creek. We bought a new car. Taylor got his 12 days of workouts in for football. You know, the usual life with boys!

Sadly, only 3 weeks of summer left. Taylor is at camp now. Logan will go to Florida state for baseball camp next week and then Disney for baseball. Well, and some fun!!

Then it will be time to start school. Logan will be in 5th grade, his last year at MES. Taylor will be in 8th grade, his last year at MMS! There they go growing up again!!

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Day +4087 post transplant Day +3785 off therapy

June 10, 2014

Today was Taylor’s yearly check up. I’ll admit I was nervous. Not nervous because he had symptoms of some sort, just the omg, my kid has an oncology apt nervous! Even, almost 12 years later, it’s hard to believe that we’ve been through what all we have.
Add to the nerves a new doctor and you have a true panic situation. It isn’t that I don’t trust the doctors it’s just that your primary doctor is family. He knew Taylor, he knew his quirks, knew his body, every scar, every breathing issue, etc. he knew me! He knew when to calm me, when to use certain words! Today he wasn’t there! For 12 years Dr. Berkow has traveled this journey with us, but today we got a new dr. Sad day! However, that being said, I really liked our new dr. Dr. Bremich-Stoltz was very attentive, very thorough, she listened and talked to Taylor like an adult. She had read the chart (I knew she would read the chart) but she had studied it. She didn’t have it with her, but she talked like she knew my child. She knew his quirks, his body, she found his scars and asked what they were from. She put us all at ease and we are pleased!!

The best thing she did was go over his sheet that lists all his treatments. Want to hear the best news ever???? Most of the drugs that cause a second malignancy do so in the first 10 years, so he is at the end of that major worry. Yes, it can happen, but the chances are less and less. They are looking into testing for next year when we return. He will be 14 and it will be time to start testing the sex hormones etc. that makes me nervous as it’s another blow if we are told he can’t have children, but again, we can deal with that. He is a tad worried about the fact that the study requires a colonoscopy 10 yrs after radiation, but he’s so young. They will discuss that with the TLC (taking on life after cancer) doctor and see if he’ll do that test next year.

Taylor had already had an echo cardio gram this morning and lab work. He wasn’t happy about the labs being from his hand rather than arm, but he did it! He was 91 pounds, still on the small size, but growing. Dr. Bemrich didn’t see a need to see Dr. Latiff again since we chose not to do growth hormone shots. She can check the hormone levels and of more needs to be done, send is back to endocrinology.

After a great check up and schedule for next year, we headed to the audiology clinic for a hearing test. The test is unchanged. Still has very high frequency hearing loss, but none in the normal range. He has always been tested every other year, but she wants to start it yearly now. During puberty boys tend to lose hearing, so we need to monitor that things don’t get worse.

Well, that did it for our day! Glad it went well, but glad it’s over! We go back on june 9th 2015.

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Day 4080 post transplant day 3778 post treatment

June 3, 2014
Let’s try this again!! I had a huge update full of pictures and it just disappeared!

We’ve been very busy since the last update! We played ball in orange beach. The boys won the tournament and a berth to the Elite World Series in Disney.
Taylor’s room flooded when our state had a massive rain/flood event. It took 7 weeks to get his room cleaned up, new flooring etc. it’s hard to get things done when you are at ball practice 3 nights a week and out of town every weekend.
We played more ball and Dothan (1st) pell city (1st) Southaven (3rd or 4th) Florence (rained out) Atlanta (rained out). Next up is Nashville and state and Disney!! Can’t wait!!
Taylor had spring training for football and will start summer workout soon. He tried out for baseball. He hasn’t played since 3rd grade, so we didn’t expect him to make it, but we were very proud that he got out there and tried.
Taylor has been sick. We never got any real answers either trip to the dr. He seems fine now. All counts were normal, so I felt a little better. Taylor will have his yearly check up next week. It will be our first visit in 11 years without Dr. Berkow!!! I may not survive!!!
Well, this update isn’t as in depth as the one I lost. Oh well, you get the idea. We are living a busy life and loving it!!

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