Jason is doing amazing. Small reaction to the ATG but they slowed down infusion rate and is back on track. It should have finished up earlier this morning. Just laying low today and getting ready for his transfusion around 9:30 tonight.

Today is the best day ever!!!!

Jason is doing amazing. Small reaction to the ATG but they slowed down infusion rate and is back on track. It should have finished up earlier this morning. Just laying low today and getting ready for his transfusion around 9:30 tonight.

Today is the best day ever!!!!

OK we are well underway with Jasons treatment. He is done with 2 of his chemos' and is getting the last one today and tomorrow. This is the one that runs over 6 hours and he could get sick from. It is Rabbit ATG. So Robert my brother made Tshirts with Jasons face that say THUMPER! Always the jokster. All is going good so far and Jason hasnt gotten sick. But like i said he got the 2 strong ones today.
The infusion is scheduled for Wed nite so we are really excited for that. His dad finally made it in last night so i am getting a break and am at hope for a couple of weeks. Though i like being home i feel like a bad mom not being by his side. But I am having fun with Austin and Shawn. Austin is so funny he cracks me up to see how big he is getting.

Will keep everyone informed on how things are going. Pray that my baby does good and doesnt have too many side effects

We have been around the world and back having people look at Jasons liver biopsy to see if that will give us any idea what is going on and why his enzymes are high. They did find one small virus so he is getting medications for that but looks like the main irritation is the iron levels. So we go admitted yesterday and are moving forward with transplant. We will start chemo around noon today and continue on for about a week with transplant scheduled next week. I am thankful the donor is still willing to do all of this as many times as we have rescheduled. Jason doesnt express much concern about what is ahead. He just goes with the flow so that makes it easy. He loves being in this hospital i swear. He is more relaxed here than at home. Playing games and smiling all the time. This kid is amazing!

These last few weeks have been crazy. We were supposed to go to the hospital March 8th to start chemo then transplant. That has gotten postponed several time because Jasons liver enzymes have been elevated to a point where the doctors didnt think his liver was ready.We were admitted last Wed and we were supposed to start chemo Thursday but his liver was still too high and it also felt larger to the touch. They decided to do a liver biospy Thursday and we found out why he has been having these issues. We thought origionally it was due to the chemo or to all the meds he was one and that they would go down on their own. But the biopsy showed that it was actually high doses if IRON in his liver. You get that build up over time due to the number of blood tranfusions he has had over the last couple of years.So there are 2 ways to fix this. Bleed him out( take a bag out every month for 6 mths) Not an option we dont have that kind of time OR with meds. But those again take 3 months to get back to normal levels. So we are going back Wed and starting chemo with transplant next week and will have to keep a close eye on his liver and hope that it can take it.We have also changed to a stem cell transplant with low intesity chemo instead of bone marrow and high dose chemo.We have to watch the liver and once the new cells graft then we can start the meds. So long story short i have been stressed and we all just want this to start so it can end. thanks for keeping in touch with me and please feel free to pass this on.

Latest UPDATE

We arent going in now until 4/13 because the donor center wasnt open in observance of the Easter holiday. So now the transplant is rescheduled until 4/21.
We go in tomorrow to clinic for an appt and again on Friday..
so you never know things could change even tomorrow..