Day+67
Hi everyone,
We have been keeping a very close eye on Evan since yesterday when he woke up with a low grade fever and nausea. Evan's temperature bounced around between 37.0 and 38.1 but never got any higher. The cut off for calling our doctor at Mac is 38.3 so needless to say, the phone was at our finger tips.
Evan vomited three times, more like horrific retching with the veins popping out of his little bald head because Evan isn't eating much lately. We're pushing high calorie smoothies with some success.
After the second vomiting episode, Evan raised his head from the bowl and instantaneously, he had big swollen pockets of fluid under both eyes and even worse, his mouth was drooping on the right side. He said he felt normal and a quick neurological assessment revealed nothing worrisome, but we put a call out to the doctor. He called us back within ten minutes, but by that time the swelling under Evan's eyes had resolved and his mouth droop was barely noticeable.
After answering the doctors questions, we all decided that things were moving in the right direction with no signs of stroke etc. and therefore we would re-evaluate and discuss the situation in another two hours. Shortly after the first phone conversation ended, Evan was feeling better than he had all day and his face looked normal again.
We aged another ten years with that one.
After counts at clinic today, it made a lot more sense. Who would feel good with a hemoglobin of 48? Yeah, that's right ,48. We try very hard to remain positive but days like these make it nearly impossible. We ARE post transplant, aren't we?
Hopefully, things will turn around once the tacrolimus has been completely weaned. We know this is not an immune-driven problem because both the direct and indirect Coombs tests were negative. This is mechanical destruction of the red cells, but where and why???? Our anxiety about this is through the roof and Hamilton and Toronto are well aware but once again, it's a patience thing. Who are we kidding? We want our boy better NOW.
On a more positive note, Evan's platelets were 74 which is great. The wbc's were still 2.0 and the anc was only 0.7. We'd like that one to come up as well, but as long as Evan is on MMF, especially while still on the tacrolimus, the anc is not likely to get much better.
SickKids did another chimerism test a week ago, so hopefully we'll learn the Evan remains >95% donor cells in a few more weeks. We don't have a reason to think that has changed, but things aren't really going along as expected either.
Evan has no signs of graft versus host and aside from yesterday's illness, today's sniffles and feeling tired when the hemoglobin drops, he is feeling good.
We have to stay focused on that but sometimes it's just really hard to do.
Please continue to keep our boy in your thoughts and prayers.
Time to go, poor Emily is still suffering with her head cold and now has a huge sinus headache.
Love,
(a very tired) Team MacNeil
