Henry's Blog

Saturday, June 21, 2008

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.


Blogger theatreknitter said...

prayers sent out your way as you travel to Duke, and meet this new challenge. (FYI: not sure how far of a drive it would be to get to chapel Hill, but if you need some comfort foods while there. There is a great pizza place called Bricks in chapel Hill. I go there with friends all of the time. It is great. MY NC Geography of the central part of the state tends to get a little goofy at times, so not sure how far it is)
Betsy H

6:08 PM  
Anonymous Anonymous said...

I pray the wish is granted. Keeping you three in my thoughts and my prayers. Love to you all, Vivian

10:35 AM  
Anonymous Anonymous said...

God bless you three, BP,the coin, and the wish. It is my prayer, too. I love you, bug

12:16 PM  
Blogger Candace said...

I know we have never met, but I been following Henry's journey. My family and I have been keeping Henry and your family in our thoughts and prayers. Candles have been lit and hearts and hands lifted in prayers.

11:31 PM  
Blogger Alisa said...

Henry- I was so exicted today to learn that you have this blog. I was at work and one on the girls in ACI told me about it when I asked about you. I know you will not remember me just by me telling you my name (Ms. Alisa) so I have to remind you. I am one of the girls that does pediatric sedation at Memorial (the one you tried to beat up) :). I have set here tonight and read your entire blog! What a journey. You are one tough little boy! I have smiled, laughed and cried all at the same time. I do not believe I have ever met a little boy with as much determination as you have. You are a true inspiration. You have a wonderful mom and dad! I am so glad you had such a wonderful birthday and got to see NYC and most of all visit the NINTENDO store. Oh yeah, I bought myself a Wii but I'm sure you can beat me anyday! What about Toys R Us? That is a really cool place isn't it. I will continue to follw your progression. I hope you have a wonderful weekend. Know that you, your mom, and dad are in my thoughts and prayers!

11:47 PM  
Anonymous Whitney said...

I never met Henry but what i have learned about him has led me to belive that he was a wonderful person.even though i didn't know him i still feel greif.sorry for your loss.
Whitney(a sixth grader at HHIMS)-( the girl who also sent you the pink card)

4:11 PM  
Anonymous Emma said...

I apologize for the stress you must be going through, and I feel the same pain, but on a smaller scale. I was a classmate to Henry at HHIMS and have shed many tears. I will be attending the service on Saturday. We all love Henry and will always remember him. I hope he will always remember us.

8:05 PM  
Anonymous Anonymous said...

henry is a gaurdian angel to all of us and will watch over us through all our years.

6:42 PM  
Anonymous Anonymous said...

henry is now a loving, caring, trusting gaurdian angel watching over all of us for the rest of our lives.

6:43 PM  

Post a Comment

<< Home