So, we did take Zoe in for her one-year-post-transplant meeting, and it was full of hopeful news. Prior to the meeting she had to have a major blood panel run, an x-ray to survey her bones and a dental exam.
The x-ray showed that her bones were no longer the characteristically too-thick bones of an osteopetrotic child, but rather that they were now on the thin side. There was now plenty of bone marrow space; the thinness was a result of prolonged steroid use for the treatment of GVHD.
Blood counts were all normal save for elevated eosinophils,a possible indicator of the presence of chronic GVHD. Of interesting note, her lymphocyte levels are completely normal for her age, which is pretty well unheard of for someone this point past a bone marrow transplant.
Given all of the test results, Dr. Carpenter decided that it's time to wean Zoe off the steroids and Tacrolimus (the major anti-GVHD drug) to see how she does. She's been completely off of the steroid for her gut since a week after the meeting and starts the Tacrolimus taper tomorrow. If she has a flare-up of GVHD as a result of the taper then they'll likely put her back on Tacrolimus as well giving her a brief burst of prednisone to deal with the flare-up.
Hopefully it won't come to that, but I have to constantly remind myself that GVHD is highly likely in Zoe's case due to her having a stem cell transplant (which comes with a high rate of GVHD--especially when from an unrelated donor).
But. I don't need to borrow trouble.
The super great news was that Zoe was given the all clear to go out in public and interact with the world! This has been such a great new experience for us all. To be sure she is still immunocompromised (due to the Tacrolimus), but the SCCA folks find that when the critical year of isolation after transplant is accomplished, it's more important for the person to be socialized and integrated into a more normal life than for them to be protected from all germs. Certainly we are to still keep her away from sick people if possible and continue to practice good hand washing practices while dealing with her.
I took her back to her PEPS group for the first time since we quit it almost 2 years ago now. What a trip. Zoe spent much of the evening fretting with her fingers in her ears as it was louder, with two-year-olds yammering and parents talking over them, than she was accustomed to experiencing. It's going to be a bit of work to push her comfort envelope to include more chaos and cacophony.
Among the new stuff she has been enjoying has been our sojourns to places where she can cruise around in the gait trainer that we've been borrowing for her. As she doesn't yet walk, the gait trainer gives her the ability to experience walking while being supported. She cruises around the park or the gym (depending where I take her) and pauses to do a little happy dance, stomping her feet and bouncing up and down.
The girl knows how to attract attention.
We try to take her out for physical activity like this every day; gradually our parental experience widens as her horizons broaden. Just as Zoe is delayed in many skills and abilities for her age, I feel like a remedial parent who is trying to figure out what to do with a 2 year old who is now allowed to go out into the world.
How, exactly, does one do this??
Zoe has two new obsessions (crackers, alas, have fallen by the wayside): chairs and the piano.
"Chair!" "Chayuh!" "Chaaaaaayuh!" She loves to be sat into one--especially with arms. I took her to a story telling evening for kids at the local library a couple weeks past, and she spent the entire time she was there saying "chair!" over and over again while she sat and seat-danced in the one she was sitting.
The piano is another love for her. While I or Jeff sit at the piano she sits on our laps and moves our hands like a puppeteer, providing the rhythm for the songs she knows while we supply the melody. Lately we've been sitting her to the side of us at the keyboard in her high chair and doing duets with her. She plunks away happily at the upper keys while one of us noodles at the lower keys--and it all sounds surprisingly nice. 'Course, we've got the biased ears of doting parents, but as we're not trying to sell tickets I think that's alright.
Check the Youtube link for more additions in the coming days--you'll get to see the duet above in action.
1 comment:
Dear Zoe and family,
My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
Congratulations on the first anniversary of your transplant--we call that date you"Second Birthday."
To learn more about nbmtLINK programs and services, please visit www.nbmtlink.org or call 800-546-5268.
All the best!
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