Waiting For The Bus

Henry will finish his current radiation treatments next Wednesday [2/27/08].

"I love going to Savannah every day," Henry has said. "The radiation is kind of soothing."

He has been doing very well on these treatments. We are grateful and appreciative of the fabulous team of doctors, nurses and techs who have been administering great care, and who have all fallen in love with Henry. He is always greeted with warmth and frequently with special treats and surprises (and even shoes!).

As for his daily doses of Tarceva:

"What does it do?" he asked Dr. D.

"Well," the Dr. answered, "the drug molecules look for parking spaces, and they find these spaces in the tumor. The drug fills the spaces and it can keep the tumor from growing."

"Can it kill the tumor?"

"Yes, it can."

"Yay," said Henry quietly.

We know, of course, that Tarceva is not the cure (it is, primarily, used for lung cancer), and we know of at least one other ependymoma patient who has tried it unsuccessfully. But what doesn't work for one, etc., etc. The main side effect seems to be a rash over his face which appeared after about two days.

"He has a rash already?" said Dr. S. "That's a good sign."

"It is?"

"Yes," replied Dr. S. "Patients who exhibit the rash usually get the best results."

"Yay," said Henry quietly.

Meanwhile, following the suggestion of Henry's Social Studies teacher, on Friday, February 1st, the middle school hosted a "Hats for Henry" fundraiser. For a $1.00 donation, students and faculty could wear a hat of their choice for the day, and many participants selected very flamboyant options. It was a very fun day, and Henry was overjoyed at the thoughtfulness and support from everyone at the entire school. It was such an enjoyable event that it was repeated at the local prep high school last Friday [Feb.22].

And to round out a very full month, a terrific local organization, Camp Happy Days, sponsored an Orlando trip over Presidents' Day weekend. Kids from the state who have been diagnosed with cancer in the last five years were treated to a four-day excursion to Disney, Universal and Sea World (and a few other surprises) without video games, i-pods, computers, cell phones or - gasp - parents. It was extremely stressful to turn Henry over to nearly perfect strangers to be driven two states away, but it was a wonderful trip. The staff included one counselor for every two kids, and they were accompanied by an oncologist and two oncology nurses. Henry's counselor (a truly great guy) was a psychologist and Henry was paired with another 11-year-old boy recovering from a brain tumor. He had a marvelous time and met a lot of great people.

We found out yesterday that the clinical study at Duke that we have been waiting for has reopened. After his name is submitted, he must qualify and begin the trial within two weeks. Our oncologist at Duke, Dr. G, is going to submit his name on Friday, Feb. 29. We will head to Duke that weekend, and on Monday, March 3, Henry will have a flow test (a test to measure the flow of the spinal fluid, and is the major qualifier for the trial), and if successful will have surgery to insert the reservoir (to review: this is the trial that administers the medication Topotecan directly to the spinal fluid via a tiny reservoir located just inside the skull). He should receive his first dose of the medication within that first week. He will have to have treatments two weeks a month for about 6 months, and then one week a month for up to two years. Since this is a clinical study, all treatments and procedures must be done at Duke. He can come home between treatment weeks.

Dad will travel back and forth as necessary.