thrush

Reality Check

/ Evan / 1 Comment

These past few months we’ve found that it’s really too easy to lose sight of the reality of this disease when things are going well. I suspect it’s due in part to how hard things have been when Zoe had an active disease and in the 2-3 months post-transplant when she was in pain or discomfort often. Once those times pass, all we want to do is forget the bad.

We had a bit of a wake up call these past two weeks. Zoe developed a bit of a rash around her mouth and nose, and at first we were convinced it was a slight food allergy. Even the doctors felt it was nothing to be concerned with (yet). Another week went by, and instead of disappearing, the rash spread slightly and began to make us very nervous. We took Zoe in to her home hospital, Wake Forest, and after some consultation decided to take her straight back to Duke to decide what to do.

At Duke we determined that Zoe does have some slight GVHD, which is very distressing since she hasn’t had any worth noting this entire time. We’ve begun treating it with Prednisone, which is one of the steroids we had hoped never to see again. While on the one hand the steroids saved her life, on the other, all of the worst side-effects Zoe has had to endure are the result of the steroids. Our goal is to nip this and get her back off of it as soon as possible. Zoe is days from crawling we believe, she is crawling a couple steps here and there already, a little more each day, but a return to steroids could change things.

Turn your head for a moment and anything can happen with these two

Zoe is also getting a little Nystantin cream for a couple of spots on her skin, and some Nystantin liquid for her thrush, which is still hanging on and never seems to go completely away.

Zoe’s spirits are very high despite these issues, and she is growing well — she’s up to 67th percentile for height now — so it’s possible the GVHD will only be a minor speed bump in her progress. Having her do so well for so long then have the rashes appear is certainly disconcerting though. Hopefully it’s not a sign of anything major.

We have another milestone visit to Duke coming up, we’ll see how things look then.

Update:

After a few days on the steroids, Zoe’s rash has cleared up nicely. She’s in good spirits and we’re back on track we hope, we’ll know more at our next milestone clinic visit.

Post-transplant Work-up

/ Evan / 4 Comments

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.

Treading Water

/ Evan / 3 Comments

We’re still in the hospital, still waiting for some decisive news to allow Michelle and Zoe to return home.

Zoe had her best blood pressure yet today, 97/55, which is close enough to normal range to have the doctors talking about discharge. At the moment, we’re looking at Friday, however we are cautious about getting our hopes up.

There is evidence of Thrush, and she has a slight cough or rasp to her throat, which has us anxious that some new issue is cropping up. Cyclosporine levels are still a little high, so that continues to be something to monitor.

Hopefully we’ll know more soon, but the most important thing right now is that BP — that’s a very positive sign, regardless of whether we go home yet.