Time for a John update. First I wanted to correct something I said in previous entries. I said that the Non Hodgkin's Lymphoma that John had six years ago caused his Myelodysplasia Cancer. This is not true. Non Hodgkin's cannot cause Myelodysplasia. But the chemo to get rid of Non Hodgkin's can cause Myelodysplasia, we found out. So it looks like the thing that saved his life and killed off the first cancer caused the second cancer.
Another thing that I said was that John would have to have his bone marrow removed when he had his bone marrow transplant. This is not exactly correct. What is going to happen is that they will destroy the bone marrow chemically. Then they will add somebody else's marrow into his bones.
Sorry for the gorey details above folks, I just didn't want to be giving you wrong info.
Now on to less technical matters. NIH called Tuesday and had a chat with John. After a short period of time they said they were not interested in doing a transplant on him because they are only interested in sibling match bone marrow transplants right now. And since John has no known siblings (he is adopted) they were not interested in him.
Now John is searching to find which bone marrow transplant treatment center he wants to have his transplant done at. When he decides which one, the center will help him find a donor. This could take anywhere from a few months to three years (to actually never) to find a donor.
It has been a rough week for me. I have been doing a lot of research trying to help find which place would be the best center. There are also a lot of different kind of transplants. At times I have felt overwhelmed, at times frightened, at times sad, at times my thoughts have just raced and raced. Through it all I have kept my faith and I do have lots of hope and have been very proactive. At one point my hopes were almost dashed when I read that there was only a 20% survival rate for someone who had a bone marrow transplant who had John's disease. Then today I found out that there is a 70 - 80 % survival rate. I hope that figure is correct. My emotions are going up and down like they are on a roller coaster.
John has been fatigued. He has severe anemia. He sleeps a lot. But he also does a lot of his normal activities. I am very proud of him. He is a real trooper! If I were him and I was just diagnosed, I might sit on the floor and cry and do nothing for two weeks! But not him. He does housework, drives me to my appointments (I can drive but he likes to!), listens to music, reads - all kinds of things he did before he was diagnosed. Bless his heart.
He tries to keep a positive attitude. I asked him how he does it and he says by not dwelling on the MDS all the time. I asked him how he did that (because I certainly am not very good at it right now!), and he said to just do normal activities, and if he catches himself thinking about the MDS, to stop, and just start going about doing normal things. He does it as a CHOICE. I will have to remember that. And he also chooses to be positive.
Well, that's enough for now. I love each and every one of you lots. And I want to thank each of you who have emailed me or IMed me. Or prayed for me and John. You have helped us more than words can ever express. Love, Krissy