One Step At A Time (D-12)

"Sometimes you don’t know when you’re taking the first step through a door until you’re already inside.” - Ann Voskamp

Elise had the first of three pre-chemo doses of Palifermin today. She'll have three more doses right after the stem cell transplant. It's meant to reduce the severity of the oral mucositis that people get from the chemo and total body radiation used as conditioning for a stem cell transplant. As Wikipedia says:

"Palifermin reduces the incidence and duration of severe oral mucositis by protecting those cells and stimulating the growth of new epithelial cells to build up the mucosal barrier."

We were told it is generally well tolerated, but there are some potential side effects that might not be good. Given Elise's "luck" I was worried she might not be able to tolerate it successfully and that would mean she'd get the worst of the mucosal issues (think extremely painful mouth sores and possibly sores throughout your GI tract - not good). But I needn't have worried, the first dosage of Palifermin was pretty uneventful. She became slightly flushed for a little while, but that was it. We stayed at the hospital for a couple hours to make sure she didn't react poorly and then they let her leave on pass again.

The central line has to be flushed every 24 hours to make sure it stays open (I guess blood can clot it closed), so we had to visit NIH each day this weekend even though she had a "pass". On Saturday the flushing wasn't bad but changing the dressing was quite painful for her. She's always been extra sensitive to tape on her skin being removed and the dressing is essentially a water tight seal around the site the catheter exits her chest - its strong glue. Add to that that she is still tender from the procedure and you can guess that changing the dressing on Saturday wasn't pleasant for anyone, least of all Elise. Worse, they had to change it twice because it started bleeding (very minor) shortly after they finished changing it. All that commotion really wore her out, but she still wanted to see the new Tom Cruise movie. So Becky dropped Elise and I off at the theater (Becky was still feeling puny from the respiratory infection) and afterward Elise felt good enough to walk back to our apartment (about a mile).

A funny thing about flushing the line: Elise can taste and smell what gets injected in the line. Somehow it travels through the bloodstream and she has an olfactory sensation. The nurse said this wasn't uncommon.

Tomorrow (Monday) Elise has he 2nd dose of Palifermin, some bloodwork, and then we are scheduled to take a class about how to take care of the catheter (it can be the source of serious infections if not maintained properly). There might be some other tests and consults that pop up, there usually are. We're hoping that Elise can continue to get passes to stay at the apartment until Wednesday when the heavy meds start.

Becky still isn't quite up to snuff yet, but her coughing was diminishing today and if she continues to improve she'll probably join us at the hospital on Tuesday. As for me, I've been able to workout in the apartment complex gym every other day. It's a pretty decent facility with cardio gear and a set of weight machines. I'm not much of a gym rat, but it's good for me because I'm still recovering from the knee surgery in December . Being in the gym (vs the hills or mountains) keeps me from over doing it. Plus it helps me sort out my thoughts and burn off some energy.

It's odd how anticlimactic everything seems. It's just one step at a time and then you find yourself in the middle of it. I told Becky that I hope it continues like this and in a few months we'll just find ourselves on the other side of it with a daughter cured of CGD and wondering where the time went.