Just more of the same good news. Feels nice to be a bit boring!
They have started to gradually taper her off the prednisone, decrease her morphine dose everyday, and have begun to pump a little formula into her stomach to get Zoe's digestion back on line.
A friend asked me via email today "Now what? Will she now begin to grow and dissolve bones? Will she grow relatively normally? Are there more procedures coming up? What are the upcoming questions to watch for?"
All very good questions that I don't really have answers for.
That's the problem with having a very rare disorder: there aren't many road maps to follow.
Certainly there are documented examples of children on the other side of osteopetrosis, and when we are sufficiently out of the current mire of Zoe's stem cell transplant and survival (still not a given, but oh-so-much more hopeful), we will definitely research more about what to expect next.
I remember hastily glancing through an osteopetrosis website months ago, not wanting to stay on long enough to read horror stories, but did explore it enough to see that there were no osteopetrosis specialists listed in Seattle.
The transplant team has mentioned many times the last osteopetrosis patient to come through their unit, and has indicated they would be open to asking his parents if they would be willing to talk to us when we are ready. Their boy is 4 years post transplant and, from bits of information dropped, he's an active boy, was transplanted in time to avoid vision loss, and is still dealing with chronic skin GVHD 4 years later. If that contact could be made it would likely give us an idea of practitioners who could best help us.
As far as what we know we can expect in the near future, Zoe will still need to avoid people with colds and flu, and public gathering spaces for a year after her transplant. If we can't avoid taking her with us to some place public, the directive is to go at non-peak times.
For months after she is discharged from Seattle Children's, she will have twice or more weekly clinic appointments for medicine and blood product infusions. I don't know how long those visits will stretch out--I'm sure it's up to how well she does post transplant.
With her head looking as deformed as it is, Zoe will likely need another cranial surgery in another couple years. Hopefully her bones and dura-mater will be significantly healthier by then and less like an 80 year-old's, as the neurosurgeon described.
Hopefully her bones will remodel, hopefully she will begin to grow normally, get the normal strength of a child her age, and experience all the biological things that a child with osteoclasts normally experiences.
But, we don't really know. Whoever said that life is a grand mystery wasn't joking.
2 comments:
I just read that Laurel Burch had osteopetrosis. Maybe someone has mentioned it already, but I missed it. Laurel Burch touched millions of people's lives with her colorful whimsical jewelry and art and her life was an inspiration to many.
A fantastic role model for Zoe, I think.
In response to Lisanne, she was the oldest surviving sufferer of Osteopetrosis but I have a feeling it might have been the dominant variant. I must admit, when I saw the videos of her on youtube, it was the first time we dared believe our little 'un might just make it and have a good quality of life at that.
As for Zoe, made up to hear she's engrafted. In Birmingham, where Alishba lives, there is a higher than normal incidence of Osteopetrosis. One haemotolgist in particular, has had to deal with a fair few cases over the years and we could tell he was totally jaded. We were told to expect the worse and they actually had us believe Alishba was going to die within a month after diagnosis. That was last June. Even without the transplant, she survived through to December. She's had nerve decompression surgery, a shunt and all sorts of other nasties but 3 months post transplant, she's doing well. I never thought I'd hear my sister say "she's been so naughty" so I cried a bucketful on being told this. However, as you point out in your piece, it's always a case of getting to the next milestone before you can relax. And until Alishba can walk herself to school, a significant part of me will fear the worst.
Big hugs to you all, GO ZOE!
x
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