May 16th - Day +100

Congratulations Ryan,

We were told on Jan 9th that once you were in transplant the first 100 days were critical.
Congratulation you have gotten past the first 100 days....HOORAY!!!!!!!!!

It has been a little harder than we thought after finding out that you did not take your sisters full bone marrow. We came out with 197 Ally VS 3 Ryan. It has been like a little roller coaster, your cells have been going up and down for the last 2 months.

We have had to turn to the DLI - using Ally white cells and infusing them into you.

Ryan we used one DLI just after Easter and your cells seemed to come down. We managed to get them down to 5.

Unfortunately, we were told on Wednesday that just passed that your cells have started to increase again. Not the news we were hoping for, your cells now stand at 8 cell . So they have done another fish test and we are awaiting the news.

I called yesterday to see if they had heard anything and the response was not yet, but not to worry. Easier said than done. My fear is that if we were at 8 cells on the 4th what is it now, we are 12 days past that point. I am hoping they went down, but have prepared myself after talking with Dr. Gassas on Wednesday that it is most likely we will have to use the 2nd out of 3rd DLI.
(Ally White cells)

This is scheduled for May 27th unless the cells have gone down ( we would not use) or have really increased than I think they will schedule you in sooner.

Dr. Gassas did say that you could live with some of your own cells for the rest of your life with out relapse, but the chance of relapse is much greater with your cells.

Mommy feels like she is on a roller coaster that never stops, we just go up and down and round and round. I am fearful of losing you one day and grateful that you are doing so well.
Ryan I wish we could see our future, as this was not the plan. But our plan has now taking a bit of a turn and we will see it through and continue our plan in life when we are done with this journey. Ryan sometimes life throws us these loops and we just have to find a way to cope and carry on.

Alot of people have told us that we are strong and they don't know how we do it. We are not sure how we do it either, we just know we have to for you. Daddy and I find ourselves, watching your every move, watching you breath when you sleep, watching you play with your sisters and loving them so much. We just take it all in. I find myself crying myself to sleep almost every night, taking little breaks in the day while you nap and crying a bit more, so you dont see me. So are we strong, maybe, but I think that you give us that strength, along with Kayla and Ally. There are days when we do not feel that we can do this anymore, we are tired, drained and exhausted, but our love for you, Kayla and Ally is so much stronger than all of this put together.

We are a family and we will get through this for you.......

Love always

Mommy.