Mesmerizing images. http://bit.ly/awfOrf
30 Days of Light
October 31st, 2010 § 3 comments § permalink
We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she hasn’t had any growth medication since that last time.
The biggest improvement overall has come in the form of a medication,
one that we wished we had started months ago, called Reglan. It’s a bowel treatment medication that suppresses spit-ups and speeds along digestion. Zoe has had the worst time transitioning to solid foods while still healing from her chemotherapy, and as a result we’ve really struggled with her ability to keep food down.
Since the introduction of Reglan, however, she has had almost no major incidents and has gained some weight and is growing consistently. She began this medication after we pushed for a solution to her bowel issues, which is why I mention it. I’m not sure it’s standard treatment in these cases, but the results we’ve seen have been fantastic. I know I sound like a commercial, but this was a really big leap forward for us and I want to mention it in case others have this issue.
We have finally left Durham, and the girls and Michelle are currently
staying in Asheville with family while some work is done on our house. I’m back home for the moment trying to make sure things move along with the renovations — we had to have some things done to our older home before Zoe could safely return.
It’s been a huge relief to leave Durham, we had really begun to feel we’d forgotten what it was like to be anywhere else. We are grateful for the “clean” apartments set up by the Evanosky Foundation for the use of transplant families, but as nice as they were, they weren’t
home. Another couple weeks and we hope to all be in one place again.
Zoe is progressing well developmentally. She’s not crawling yet, and we’re beginning to think she may just skip it. My mother tells me I did at her age, so who knows. Zoe is able to stand when held or against something supporting her for decent amounts of time now, but she is also rocking on her hips a lot and scootching around. We’ll see soon what path she decides to take.
All in all, things are progressing well. With the continuing construction on
our house and the lateness of the year though, it’s quickly becoming clear that by the time we’re all back together and healthy, this entire year can be written off to getting Zoe through this. It’s better than the alternative of course, but it’s still hard to believe the year is almost over and we’re just now on our way home. If it weren’t for writing it all down, I’m not sure I could tell you exactly what all happened, it’s been such a blur.
PS – Please excuse the horror movie reference in the title, but it is Halloween, after all.
Post-transplant Work-up
October 11th, 2010 § 4 comments § permalink
Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the “scream” test for pulmonary
function, full blood draws and x-rays. We did not have to have another CT scan, nor did we have to do the nuclear kidney/liver function test. Zoe’s Creatinine and Bilirubin (markers of kidney and liver function) give us no reason to believe she isn’t recovering or fully recovered from her cyclosporine treatments.
The good news is that everything came back just fine so far. Zoe is a fine screamer, her pulmonary test came back better than it did pre-transplant, her xrays looked fine, and her blood counts were almost all in the normal range. The great news is that she did not need “G”, her WBC count is up to 5.6 on it’s own. She’s gone 2 weeks now without a boost, and the counts went up not down. We’re optimistic this means she’ll never need it again.
The visit felt very much like a cap to our experience at Duke. Most of the same tests, only this time with an eye toward making sure everything is fine so we can go home, rather than being fine so that she can be admitted and subjected to chemotherapy. The feeling was entirely different.
Zoe still has a bit of thrush, but given her newfound love of spitting out her medications, we decided to pursue the nuclear option to clearing it up. They gave her a purple dye-like medication that coats the inside of her mouth and throat and suppresses the thrush. The upside to this is it only takes 3 applications over 3 days, the downside is that it is really strong dye.
It’s permanent on pretty much everything except skin I’m told, so Zoe has to wear a little bib for the next few days, and everything she puts near her mouth will end up purple. As we were finishing up the application of it, the nurse lifted Zoe up to a sitting position a little too quickly and she spit up a bit. In a heroic attempt to save her clothes from the purple menace, I caught the spitup in my hand, and was rewarded with a purple hand for my troubles. The dress still didn’t make it. After that, we put on her bib and I gave up any hopes of joining the secret service.
There was a bluegrass band playing in the lobby for the duration of our visit, giving an interesting soundtrack to our Family Circle trek all over the hospital for our tests. There were definitely more smiles than usual everywhere we went, as a result. All in all, a great day.
Music from the Ridgeway Opry H…
October 11th, 2010 § 0 comments § permalink
Music from the Ridgeway Opry House in the children’s clinic at Duke today. Lots of smiles there today. http://yfrog.com/bbco5j
Eating at CubanRevolution in D…
October 10th, 2010 § 0 comments § permalink
Eating at CubanRevolution in Durham. Feeling like communism can’t be all bad with food this good. Durham has come a long way in a few years.