Matthew is becoming more and more alert and is staying awake for hours at a time now. He is also eating (donuts mostly) although continues to suffer from some nausea. His words, once very clear and loud, are now the softest whispers and are difficult to understand. He looks better each day although still cannot sit up or stand without pain. This round of systemic (through his PICC) chemo is done on Sunday and he will get localized chemo via his Ommaya on Monday at which point we will see if he is good enough to go home.
I see you.
Matthew could not bear to watch the USA world cup game. Either because the match was very close or because soccer is brutally boring to watch .
In other and substantially more depressing news, Nicole and I met with a doctor from the stem cell transplant team today. Upsetting is not the right word. Matthew has so many things working against him and it seems like each the road gets steeper and steeper. A search was conducted on the National Bone Marrow registry to find a donor for Matthew. Some kids will have 10+ perfect matches. Matthew has 1 "acceptable" match meaning that the donor matches on 7 out of 8 critical proteins but is less than optimal. There are several characteristics not working in our favor. it is a woman (-1) who has had 3 kids (-1) and is older (-1). There are also 2 possible cord blood bank donor sources but cord blood transplants have some different risks than live adult transplant. Perhaps the most difficult thing was listening to the affects of the radiation which I wont go into. It is a nightmare. Do not mistake this for losing hope we aren't/cant/wont/ but the possibility of Nicole and I having to make a decision between continuing painful and unlikely treatment vs providing Matthew with a quality of life he deserves is becoming real and it makes me feel (i sat here for a while but can't find the words to describe it).
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6 comments:
We have been praying for you guys and will continue to pray for all of you You are such great parents. Know that you are loved and will always be loved.
The Yees
I am tears reading this. I am just devastated to hear about the turn of events. I check in on your blog every so often and was shocked to read what is going on with Matthew. Words seem so trite. I am praying HARD for Matthew and sending prayers up to all of my special angels in heaven. It is not fair that Matthew has to endure all of this . . .or you guys either. I will never understand why these things happen.
-Carrie Katai (I was in Nicole's master's class).
Dear Gene and Nicole,
Your post has just gone out to our prayer circle. You all are in our thoughts and prayers throughout each day.
We love and miss you,
Peg and Michael
Thank you Gene for sharing the news and beautiful pictures. God bless you and your family. I'm here all week if you guys need anything. Give your beautiful kids a hug and kiss from me. No matter what the outcome, I'm praying for you. May God wrap his loving arms around all of you and comfort you.
I can't imagine what you guys are going through and what you have to think about. Still hoping and praying for a better outcome!!!!
Lisa
God bless you and the choices you do not want to have to make. I've put out a prayer request for all of my friends, so know that there are hundreds, if not thousands, of people praying for Matthew right now.
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