Zoe is still in some discomfort, but she seems better today. Her cell growth has continued to be very high, she’s now up to 3.6 WBC and 2988 ANC, which is actually quite a bit higher than she was leading up to her transplant I believe, even before her final week of conditioning.
Maya has come down with some sort of summer bug, we think possibly due to something she picked up at the pool, but her fever never got very high (100/101) and it appears to be fading after about 36 hours. She is, we believe, out of range of having FHL in terms of her age. She has of course been sick several times in such a way as to trigger it were it present, including with the same virus that triggered Zoe’s.
Still, there is nothing more stressful I would say than to endure something like we have with Zoe and then turn around and fear for the same thing happening to her sister. The doctors feel confident that there is no danger, but the nature of HLH is such that it terrorizes parents who know what can happen. I can’t comprehend, even having been through what we have so far, what those families who have seen the worst of HLH endure. Particularly with siblings — knowing that the hereditary risk exists is the stuff of nightmares.
On a lighter note, one of the nurses made a little bow for Zoe today out of one of the medical materials used in her care — we thought it was cute.
She’s a fashionista with a fabulous ANC :). She knows how to grow those cells! Mara
Evan and Michelle,
It is wonderful to see how Zoe has responded to her transplant! I continue to prayer that her progress will continue to improve each and everyday thus having you back to your home in the next couple of months!!
I hope Maya is feeling better and I am sure it is scary for you both when Maya is sick. Give all your girls a hug and Michelle give Evan a hug from all of us!!
All of us here at Taylor House follow the progress with great interest and daily inquiries. Someone checks the progress each day. All is well with client work….folks remain stable. Clients contilue to ask and want you all to know of their ongoing concern. Greg is on vacation this week, and we are looking for him back on Monday. Keep up the good work Zoe…you are a real star and major league trooper.
Bill and colleagues….