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).
An aggressive (fast-growing) disease in which too many myeloblasts (immature white blood cells that are not lymphoblasts) are found in the bone marrow and blood. Also called acute myeloblastic leukemia, acute myelogenous leukemia, acute myeloid leukemia, acute nonlymphocytic leukemia, and ANLL.