High Dose Chemotherapy, Round 1

Tara here. Bryan's mom and I brought Henry down for his admission trip today. He was, unbelievably, quite eager to come. This is a testament to the fine nursing staff and child life experts who make his time here in the hospital downright fun.

His fan club of adoring nurses was waiting for him to arrive. Everyone agrees that he looks fabulous - healthy, happy, and taller than the last time they saw him. He rode the Hopkins version of the Indy 500 on the oncology unit, and then had some running races with Linda and I before she left. I think he's finally tired himself out.

We learned a bit more about his chemotherapy regimen today. He'll be getting Thiotepa for the first three days, which he's never had. He'll start Cytoxan on the third day of Thiotepa. He's had the Cytoxan on the first three chemo cycles as well, but never at doses this high.

Thiotepa has some excretion through the skin, and is a powerful skin irritant. We're read in various places about the rashes and full body skin peeling that can result. Fortunately, they've recently learned ways to prevent this uncomfortable side effect. Unfortunately, it involves a full bath every 6 hours and daily dressing changes.

Due to the immune suppression that he'll have, there are some nursing (and therefore parenting) issues that will be new to us this time. He needs mouth rinses several times daily to decrease the amount of bacteria in his mouth. He'll also take a week of Bactrim to help protect against PCP (a serious infection that immunosuppressed people are susceptible to) for the rest of the month. In addition, he'll prophylactically be put on another antibiotic and an antifungal medication to help prevent serious infections.

In general, we've been told to expect more serious toxicities with the high dose chemo than he's had with the first three cycles. Nausea and vomiting, as well as mouth or other gastrointestinal sores are very common. The degree of discomfort varies from patient to patient. Bryan and I are both nervous to see how Henry's body can stand up to this onslaught. It sounds like he handled the first three cycles better than a lot of kids do, so we're hopeful we'll continue to have the same luck.

Henry's high spirits keep us all aloft. We hope that he'll continue to feel well through this next few weeks. He's quite full of energy now, so if you wake in the night to the sound of hollering, it may just be Henry's 3 am bath.