Friday, February 15, 2008

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.


t said...

Hey Henry, i love my baths but every 6 HOURS? Whew! You'll be looking like a prune in no time!

But seriously though, I am praying that God gives your body strength to endure all that needs to be done. It sounds pretty scary. I am also praying that God gives your family the strength to see you through this.

I'll be dropping off a care package tomorrow. If you all need anything, I am just a phone call away.


rlbates said...

Is there anything you need that I can do for you or send to you? You and yours remain in my thoughts and prayers.

Anonymous said...

Wow, what an ordeal. I don't know how you all handle the grace of God!
May he be with you all and we will check daily to see how Henry and the family are doing.

Love always,
Cousin Susan H.

shadowfax said...

Whoa. Sounds like a serious go. I'll be thinking of you, and hope your charm continues. Be well.


Anonymous said...

Dear Henry - will definitely be the cleanest 3.5 yr. old I ever met! Since I once taught your age group, I consider myself an expert on that sometimes smelly subject.
Hearing about your incredible spirit and the wonderful, child-oriented care you are receiving gladdens my heart. I hope you know what a very special little boy you are and how very many people love you and think about you and your family every single day. I am sending you lots of love, hugs and yukky kisses so ask your mommy or daddy to give them to you for me - mab