Well, as pointed out by my father, we didn't post an update yesterday.
Not much is happening. Clara has been a little bit on the fussy side which is difficult because she is not a fussy baby. We know she isn't in pain. We know she is doing better, because her ANC is 260! But she has only really been happy when her "friends" come to visit. Those same nurses that make my day, make hers! Oh, and Daddy sure did make her laugh tonight before I left.
She has begun loosing her hair - which is EVERYWHERE! The last time we went through chemo, she was at the age that she was loosing her newborn hair. It had nothing to do with chemo. It was slow and fairly insignificant because her new hair grew in as her old hair fell out. This time, we are all hacking up hairballs. I'm not kidding. Unfortunately for Clara, it is difficult because she doesn't know how to clear her throat or swallow or spit out a hair. So, it starts a gag reflex and she ends up throwing up.
She is retaining a lot of fluid because the conditioning chemo makes her cells "leaky" and the fluid ends up sitting around in random tissues and not being flushed out through her bladder. Fortunately, I can report that she just had a huge pee under Daddy's watch - which is such great news. He says she was much happier and seemed to be much more comfortable.
We have heard from the attending that the "allergies" she was having last week seem to be Graft vs Host Disease. She was hesitant to say it last week because it was so early (her counts hadn't even really come up and it had only been about a week since transplant). But, her "rash" has changed patterns and it shows up regardless of a Benadryl dose or not. They are still tweaking her immunosuppresant dose to make sure it keeps it from raging. But, right now, it is a good amount of GVH and we are only putting topical steroids and hydrocortisone cream on her to keep it from being too uncomfortable as she rashes and her temperature at the rash spot increases.
I need to take advantage of my night off and go to sleep. G'night!
3 comments:
Hair loss is a sensitive issue for this family! I wonder why it's coming now - after she's been off the chemo for so long.
LOVED LOVED LOOOOOOOOVED talking to you last night! Made my week!! Love to you, Clara and Alan!
THANKS for the update! We live for them. Going into Mass right now; will pray for relief from the rashing and a healthy self-concept regardless of hairdo challenges.
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