Henry's Blog

Monday, December 31, 2007

Shout Out To "NEXT EXIT"

A sneak preview of teh Next Big Thing...

Special thanks to all for the holiday wishes!

Sunday, December 16, 2007

Who's Got Game?

This weekend Henry and Mama attended a fundraiser for the RET Pediatric Cancer Foundation that featured a local high school basketball tournament.

It's a very large undertaking. Boys and girls basketball teams throughout the county played tourney-style in multiple venues over three days. Many volunteers devoted lots of time and effort, as well as numerous local vendors which supply equipment and food. Henry had a great time and it was inspiring to see the commitment of so many local people mobilized for the event and its cause.

This annual tournament, held in memory of Ret Thomas, a 15-year old Hilton Head Prep student who lost his battle with Ewing’s Sarcoma in April of 2000, was first played in December of 2000. Proceeds from the Tournament benefit Coaches vs. Cancer and the RET Pediatric Cancer Foundation. The RET Foundation aims to help pediatric cancer patients and their families. One of the goals of the foundation is to push for routine MRI and imaging technology early in the diagnosis of non-specific childhood symptoms.

Ret's Mother, Suzanne, is a profile in courage and gentle activism. She has been personally interested in Henry and his treatments, and through the foundation has helped us financially with expenses related to our far-flung treatment enterprises. We are extremely grateful, and extend heartfelt thanks.

You can contact the RET Foundation at:

The RET Foundation
14 Wells East Drive
Hilton Head Island, SC 29926

Saturday, December 15, 2007

The Treatments Continue...

Yesterday (Friday, Dec 14) Henry received his second infusion of the new protocol, this time with the addition of the second drug, Avastin. It was an all-day affair: Check in at Memorial in Savannah at 10AM, port access, an hour of pre-hydration, vital sign check, an hour-and-a-half infusion of Avastin, an hour-and-a-half infusion of CPTS-11, and a planned hour of post hydration (which was waived if he promised to drink a big glass of Gatorade), and port de-access. Home by 5:30PM.

So far, Henry has not suffered much from side effects, which can include diarrhea and heavy drop in blood pressure, along with the ubiquitous nausea, vomiting, fatigue and hair loss. He actually felt pretty sick towards the end of the second drug infusion, but (with the help of some Zofran) it didn't last long and he had a good evening.

This treatment will continue... well, indefinitely. We'll have infusions every two weeks and on off-weeks have blood tests (which we can get from our local pediatrician) to check his counts and see if we need the home injections. We'll schedule an MRI after the first of the year.