This morning I was lagging and not quite myself. I got the hospital to see Van and I was a little weak so I laid in his bed with him while we waited for our Doctor's Visit. Van was so embarrassed (I'm still not sure why) and our nurse took a picture to sent it to our daughter Nicole. I thought I would share it with you.
We were told that they haven’t seen a Chronic Leukemia patient that has gone straight to blast phase in over 13 years. Usually Chronic patients don’t even have to come to the hospital because they can be controlled by medicine for years. So they meet as a team of doctors and figure out what would be best for him. It changes daily. He is truly in the experimental phase and on the cutting edge. The doctor told us that years ago there was only a 30% chance of survival but after his many years he knows the percentages have gone up but there is no data concerning Van condition. So we will just pray and have faith.
Everyone keeps asking about the Leukemia in Van’s spinal fluid. Last weeks spinal tap came back negative but they are doing a spinal tap chemo radiation every week and they think it will sneak into his fluid at one point. But then they will just kill it so it doesn’t really matter.
He is still in the hospital trying to see if the chemo tablets will interact with his anti-fungal drug so they are giving him the anti-fungal drug by I.V. and the other one by mouth. We should know tomorrow if he is going to have a reaction. They gave him some headache medicine this morning and he threw it up, so we are hoping it was just because it was on an empty stomach.
Van will need an Allogeneic Stem Cell Transplant procedure instead of a Bone Marrow Transplant. They are pretty much the same thing except the Bone Marrow is like a seed you plant in a garden and the Stem Cell is like a seedling plant you plant in the garden. So the Stem Cell would give him the best and quickest results. The Doctor just reminded us again that it could be 8-10 weeks before the transplant could be set up but the chemo drug might stop working in the mean time, which means he would have to have major Chemo for a longer period of time which isn’t good because he won’t be as strong. Two weeks before the transplant he will go into the hospital and have six days of radiation, 2 days of Chemo, one day of rest, etc. Then he will be in the hospital a minimum of 6 weeks, then move to a condo for a minimum of two months but knowing that any of this could change if he has any side-effects to any of the medicines or transplant which is highly likely. At this point they are able to predict if he will have a higher likelihood of being cured. They said if he lives five years then he should live 20 years. It looks like we have a roller coaster ride to go on for a while. Thanks for coming on that ride with us.
I'm feeling a lot better this afternoon than I did this morning. I'm happy and back to my cheerful self. I just have to sit or lay down every few hours. But who doesn’t after surgery. I’m preparing to tell everyone tonight how to become a bone marrow/stem cell donor. Thanks for hanging in there with us. We love you all.
Thursday, January 28, 2010
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Glad you're feeling better, Wendy! We keep you ALL in our prayers.
ReplyDeleteThis week I came across this quote in the Church News by Pres. Harold B. Lee (Ensign, Jan. 1973). I love it. It seems to help with the "why" questions.
"There are too many of us who put question marks instead of periods after what the Lord says. Just trust the Lord. We shouldn't try to spend time explaining what the Lord didn't see fit to explain. We spend useless time."
Lots of hugs and prayers!
Debbie Kirby
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ReplyDeleteVery glad to hear you are better! I have a question. I had a doctor who worked on my heart named Dr. Day. Was his name Ron? Your family is in our prayers!
ReplyDeleteLaura Hofheins
I agree with Debbie: I'm glad one of you is feeling better, but wish it was both.
ReplyDeleteSo sorry to hear about Van's bad day...I vaguely remember my mom telling me once yeeeeaaars ago that Van had trouble with his health (even when he was little: the doctor told him not to Fast, but he did anyway [no surprise there!]): maybe some people's stomachs are just more sensitive than others? My mother can down 3 full-strength Excedrin on an empty stomach, but not me!
(I had a typo and couldn't let it stay for all the world to see!)
I think your picture together in a hospital bed is cute--and DEFINITELY fitting: if he'll let you, THAT should go on your Christmas Card for 2010! (Maybe you could buy little Santa hat stickers and put them on both of your heads when you send it out? =)
LOTS of hugs and prayers as always--
Libby
My Heart Doctor's name is Dr. John D. Day. He was amazing. Thanks for asking.
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