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.