The Yin and the Yang (aka: The Good News and the Bad)

On Monday [June 16], while Dad was getting to the airport for his flight to NY, Henry woke with a chest pain. The pain had first appeared over the weekend, but now had become severe. Although his appointment at MSKCC wasn't until Tuesday, Mama took him into the clinic to squeeze in a visit.

We almost always spend a lot of time waiting at the clinic, but without an appointment the wait on this morning seemed infinite. Henry was hurting, frustrated, and carryng a dread of what these new symptoms might mean. He grew increasingly angry at being left to wait while in pain, and at one point pushed away Mama, strutted past the reception desk and attempted to go back to "give the doctors a piece of my mind."

When finally seen by a doctor, Henry remained frustrated. Our own Dr. K was not in clinic that day, so a different Dr K examined him. When asked to take a blood draw, Henry refused. Initially he feared that accessing his port would hurt his chest too much, but beyond that he simply decided to take control and not cooperate. Dr. K did not force the issue, and tried to lighten the situation.

"That's OK," he said. "I'll just get some blood from someone else. Who would you like me to get it from?"

Henry looked him straight in the eye and said: "You."

Henry was given some morphine for the pain. Mama, however, got nothing to ease the blow that, indeed, Thursday's MRI [June 12] revealed tumor growth in the spine.

Dad called as soon as his plane touched down and got the news. We would have a formal meeting with our Dr. K the next day.

Henry felt a little better that night and we dined at Finnegan's Wake, a little pub across from the Ronald McDonald House, that has a great grilled cheese sandwich.

Tuesday, June 17, we met with our own Dr. K and got the news officially. While there is some shrinkage in one of the brain tumors (the good news), there is growth in two areas of the spine, suggesting that the treatment was working but just not getting past the brain and into the spine in enough quantity to be effective (the bad). Dr. K told us that the entire pediatric oncology staff would meet the next day [June 18] to confer and come up with a recommendation.

We spent the next morning at Nintendo World and lunched at Burger Heaven. Henry, having now been on steroids for two weeks, ordered Mack and cheese, mashed potatoes and gravy, and a baked potato. Comfort foods do, in fact, comfort.

Back at the clinic, Dr. K gave us the team's recommended strategy. With the brain somewhat stable at this time, Henry needs a treatment to arrest the spine tumors. The consensus is to use a next-generation derivative of thalidomide (yes, the source of those horrific birth defects in the 50's and 60's), which robs the tumors of their blood supply. Re-approved by the FDA in 1998, use of the drug is tightly controlled and our own Dr. G from Duke is the only oncologist who can prescribe it for our use and have it covered by insurance, thus our avoiding its cost of about a million dollars a year (!).

So, we left New York on Thursday [June 19] and will head up to Duke on Monday. On Tuesday, June 24, we will meet with Dr. G and presumably begin the new regimen. This drug is taken orally, so we will be able to be home most of the time.

After about a month, we will return to Duke for MRIs. If the therapy is working we will continue for another 4 to 6 weeks. Then, if everything is pointing in the right direction, we will return to MSKCC for the final dose of the radioactive antibody.

Post Script:

BP, a dear family friend and coworker of Dad recently returned from a two-week trip to China. She had an incredible experience, awed by the overwhelming depth and beauty of such an ancient country. She graciously brought back for us a lovely pair of hand-crafted chopsticks and a tiny, delicate bottle featuring gorgeously rendered images of birds which were meticulously hand-painted on the inside of the bottle.

If I got the story correct, among the sights she experienced in Beijing was the Altar of the Bells. Visitors climb up a staircase to view a magnificent white jade statue. Legend has it that you can make a wish while throwing a coin at the statue and, if your coin passes through a small opening at the top of the statue, your wish will come true. As scores of visitors futilely flung their coins at the statue, BP took out five coins. One at a time she tossed the coins, bestowing on each one a special wish for family member or friend. Four of the coins missed their mark, but as a huge, spontaneous cheer came from the crowd, one coin sailed triumphantly through the opening.

I'm sure you have guessed: that coin was for Henry.

Thank you, BP. We need all the good wishes now.

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.