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..

Today is the day

Well we have been home for over a month and it still doesnt seem long enough. We go in today and get settled and start on fluids as well as a slow continual heprin drip. Then tomorrow we start chemo for a week then April 8th or 9th is the day of transplant.
Jasons liver is still elevated so we are doing reduced intensity chemo and a stem cell transplant.
We are hoping that the Tcells in the transplant kill any remaining Leukemia that the chemo didnt get.

We did find out an interesting fact about Jasons donor. She is from Europe!!! Jason is so special we had to look world wide to find the right person :)

I will keep everyone posted on his progress. He is strong and i have no doubt in my mind he will be ok just getting through this is all so hard. You have no idea how i feel inside. My whole world is turned upside down. I just know when we land again we will be even better off than we are today!

Jasons levels are coming down as of Friday of last week so that is a good sign.
We go in again today to check his levels again to decide on what chemo regimen he will be getting. Cross your fingers his counts are good and he can get the high dose chemo as that has a better long term cure rate. Not that the lose dose doesnt ( that is the kind that adults get when they have transplant because they cant handle the high dose) but we all know Jason is strong and will be able to take it.

Tomorrow is a half day for Austin so when he gets out of school i am taking the kids mini golfing with some friends so we can have a little fun.

We go back in one week from today. Man how time flies when you are home.

Will update you all on what we here today

Nothing new to report here. Jasons levels are still high so we will continue to keep him off meds to see if that helps. We go back Wed for another appt to check the levels. He is still doing great.
We did family pictures in the backyard yesterday. That was like pulling teeth. Boys can be so stubborn.

The plan is so far to be admitted on March 30th to get ready for transplant. Everyone pray his Leukemia stays gone until then and this little cold he has is just that. A cold and nothing else~

Well yesterday we had to go to the clinic to check Jasons liver enzymes again. Still way to high to start transplant tomorrow. They are actually going up. So they asked that Jason stop all medications and we go back in on Friday for more lab work to check the levels again.

The plan for now is to not do a bone marrow transplant but to do a peripheral stem cell transplant.

Basically that is putting more mature cells in your body from the donors blood than getting baby cells from the marrow. Better chance of cure, more chance of GVHD (graft vs host disease)

So alot processing in my head right now.

Jason looks and feels great though so that really makes me feel good.

It is spring break this week so him and Austin can fight all day like brothers do. The fighting drives me nuts but i let it slide so boys can be boys

A lot at stake today

I know i havent updated in a while. There has been alot going on. We got home about two weeks ago. WOW were we ready. I am ready. I am starting to hate the hospital. We miss being home and the stress is starting to break me. All the sick kids around me and all the things going on are really breaking me down and i just sit there and cry. Jason runs to me (moves from his bed to my couch) and sits and my lap and tells me it will all be okay and dont worry. I keep asking him "why do you always have to comfort me when you are the one that is sick?" He is so strong i dont know how he does it.

He had to come home on IV meds which scared me since i am not familiar with how to do all that. So we get an IV pole and run his medication through every night. That has been a challenge in itself because i miss a step or do it wrong. I get so stressed out about it that if i just relaxed it would be ok. He knows how to run it all and will catch me but phew it makes me nervous.

So transplant is supposed to be around middle of next week. But his liver is elevated and at this point no where near able to handle transplant. I have to take him back today to test his levels and see what direction to go.

It just doesnt right. You look at him and he is fine. We actually had to take him to the barber the other day and trim his hair. He is so strong the chemo doesnt make it fall out.

But next week will be another story. I have to hold back tears when they tells us all that is going to happen. It is scary to think of my little one having so much put into his body and hoping it works.

We did find a donor. A 22 year old female. That is all we know about her. But she is a live saver. Whoever you are i owe you my own life.

OK gotta stop now or i will start crying and i have alot of work to do today.
Shawns bday is also tomorrow so gotta plan something.

Will keep everyone udpated!!! Thanks again!