Day +100

Today is day +100. I'm not sure why, but I expected fireworks, marching bands, waves of relief, joy without end ... you get the picture. Well, day +100 was just like any other day. Alex woke up, had his medicine, I nagged him about drinking enough water all day - which he didn't; then he took his medicine again and went to bed.

Alex is off most of his medication. There are three he takes during the week, with a fourth one just on the weekends.

Tacrolimus: We tried to ween him down on this one two weeks ago. He started flaring up with a good-sized Graft-vs-Host Disease rash (GVHD), so we adjusted the levels. Until he is off this medication, he can't go back to school, or be in big crowds. It was disappointing that the first taper did not work, but we just need to be more patient. We will continue to tweak the dosage until his new immune system can tolerate the new body.

Acyclovir: This medication is given for about a year, so we have at least 250 more days of it twice a day. It is an anti-viral medication, all the other "anti" medications are completed (i.e. antibiotic, anti-fungal)

Magnesium: As long as Alex is on Tacrolimus, he will be on a Magnesium supplement (4 *huge* tablets twice a day).

Septra: This antibiotic is given as a preventative measure for a specific type of pneumonia that is common among patients with compromised immune systems. He will be on this medication for at least another six months.

The last Chimera test came back with good results. The lab tests two cell lines in the blood. The first cell line was 100% donor cells (yay!) The second cell line was at 94% donor cells. This is down slightly from last month. The doctors are going to try to see if Alex can tolerate a little bit of GVHD, so that the donor immune system can wipe out the last 6% of his original cells. This is quite common, and nothing to get to concerned over. A bone marrow aspiration was done on last Tuesday to check for leukemic cells in his marrow. The doctors don't expect to find any, and we won't know for sure until next week. The waiting is so hard.

Alex likes to say that there is a battle going on in his body. It is a good analogy. For all of you Doctor Who fans out there, Alex likes to picture himself "regenerating", which to me is the best analogy.

Alex - Regenerating

What day +100 really means, is that the likelihood of major complications statistically drops significantly for patients who make it this far after transplant. I am so happy to be at this point however, one thing that has become crystal clear to me is that statistics are just numbers, and we aren't guaranteed success.

I have had nightmares, of Alex just dropping dead as we walked through a store. These nightmares are awful - I wake up in tears, and go and give my boy a big hug. I have dreams where Alex's birth-mother tells me "why didn't you keep him safe?". I want this to be over. I want to be done. I want the Hickman line in his chest removed. I want his body to work so he can enjoy his life - without the cloud of cancer. Is that too much to ask?