Defying the Laws of Science

Around Friday May 30, Henry mentioned some pain in the hamstring of his left leg. It did not seem to be continuous or very severe, so it fell into the "something to keep an eye on" category. However, by Monday the pain was more constant and bothered him enough that he felt he could not sit through his classes at school, and by Tuesday he could not walk. We got him a wheelchair and put a call in to Dr. K. She called back and was very concerned. The leg pain almost definitely was being caused by irritation of the leg nerve from within the spine. Likely causes are tumor growth in the lower spine or (please!) inflammation in the tumor area from the treatment itself: sometimes tumors expand slightly before shrinking as a result of treatment success. However there was no way to tell which it may be; an MRI less than two weeks after treatment would not distinguish the difference. We already had MRIs scheduled at MSKCC in 10 days (and, this being a clinical study, any hint of tumor growth will force us out of the study). Dr. K prescribed some dexamethasone to reduce inflammation, and we would check in within 48 hours.

Although Henry's leg felt a little better the next couple of mornings, he suffered a few rounds of nausea and vomiting that kept him from keeping down all of his meds. A phone call to Dr. K [June 5 - a very joyless birthday for Mama] revealed increased concern and she suggested having our oncologist in Savannah examine Henry for any tell-tale deficits or "red flags" in a routine neurological once-over.

Friday morning, after a couple of days with no vomiting, Henry got out of bed on his own and in a good mood, and our visit to the Savannah clinic indicated normal vitals, blood counts and good basic neurological response. The weekend brought much more improvement. Saturday Mama had a belated birthday, and when Dr. K called on Sunday to check in, she was very encouraged. We would continue on our plan for Mama and Henry to go to New York June 11 for MRIs of the brain and spine, and if, as we hope and expect, find no tumor growth, proceed to a test dose followed by a treatment dose the next week. Dad will join them on Monday the 16th and we will all come home on Saturday, June 28.

Meanwhile, at the end of our weekend rebound, we three were playfully expressing our mutual affection ("You're the best!" "No, you're the best!"), and Henry exclaimed to Mama and Dad:

"You're BOTH the best!"

"How can we both be the best?" Dad obnoxiously asked.

Henry thought for a half-second.

"Because you defy the laws of science!"

Indeed...we all have been defying the laws of science every step of the way - especially Henry. And we're not going to stop now.

P.S. Henry got straight A's for the school year.