Henry's Blog

Saturday, May 31, 2008

Take Me Back To Manhattan

Our Great New York Adventure began on Monday, May 4th. We arrived at Laguardia at about 3pm, and got to our lodging at about 4. We were generously offered use of an apartment on the Upper East Side (courtesy of the very kind brother to one of Dad's co-workers). Henry was very tired and slept most of the flight, the taxi ride, and the rest of the afternoon as well. After some dinner, we all settled in for a cozy night to rest up for the next big day.

That day, Tuesday, May 6th, was Henry's 12th birthday. His primary wish was to spend the day at Nintendo World inRockefeller Plaza. Henry was in heaven: all things Nintendo - past, present and future.

While Henry and Mama continued to sample the joys of Nintendohood, Dad traveled across town to the clinic at Sloan-Kettering. The clinic called on Monday (while we were at the airport) asking to fax a consent form that would permit St. Jude to send pathology slides to MSKCC. These were necessary to complete the medical file necessary for the formal admission process to go forward. The plan for the rest of the week included of a meeting with Dr. K Wednesday morning and a spinal MRI that afternoon. Thursday consisted of a flow test of the cranial spinal fluid (with follow up scans tracing the flow throughout the day). Friday morning had a 24-hour follow-up scan for the flow test and a cranial MRI.

But meanwhile, back at Henry's Birthday, we left Nintendo World after about 3 hours and ventured into Times Square. Henry was quietly awestruck at how spectacular the scene was in real life as compared to the images seen in magazines and TV.

We lunched at the Hard Rock Cafe and visited the gigantic Toys -R-Us, featuring the giant indoor Ferris wheel (and a few other surprises):

We then headed back to the apartment for some rest, and then had a birthday dinner of some sushi. Back again at the apartment, Henry enjoyed his Birthday Booty from Nintendo, as well as a few tokens Mama and Dad had brought for him to open from home. In his own words: "This is the best birthday I've ever had."

What parent wants more?

The rest of the week went pretty much as scheduled, although we found Sloan-Kettering to be an extremely busy place. We frequently had hour-long-plus waits for the Doctor and/or tests, but we did feel very good about our meeting with Dr. K. As the long, hard week ended on Friday [May 9], we were secure in the knowledge that Henry would be beginning treatment the next week.

As we dined Friday night, Henry was wearing his new favorite T-shirt which featured a green mushroom and the phrase: 1-UP. Mama and Dad commented on how great the shirt looked on Henry.

"You don't know what it means do you?" he said.

We paused a moment...

"No, actually...we don't."

"In video games," he said very deliberately, " a 1-up means you get an extra life."

Mama and Dad shared a look deeper than the cut from a freshly-honed Henckel.

An extra life...
What parent wants more?

BUT WAIT...There's More!

We had already arranged return flights for Saturday, May 10. We got home late Saturday afternoon, and had a quiet evening and a restful night.

Sunday, however, was another story. Dad had promised to design the lights for WAIT UNTIL DARK at the local High School (he had left them in the lurch last fall, when he had to renege on a show last fall when we suddenly went to Duke, and he made this new commitment to the high school based on the Duke treatment schedule), so on Sunday morning, Mother's Day no less, after picking up the dog from the kennel, Dad went to the high school, hung the lights, focused, cued and teched the show in twelve hours (O.K., so they only have 24 dimmers...but still...). Then, with a take-out dinner from Wendy's, we celebrated Mother's Day with funny cards and unworthy gifts...but for one custom-ordered pin for Mama that reads simply:


Then there was "Hearts For Henry."

On Monday, May 12, the arts center that Dad (and occasionally Mama) works for presented a benefit show for Henry. It was the original idea of C. C., one of our favorite director/performers, who recruited the cast, crew and musicians of the arts center's current show: THE PRODUCERS, and a host of additional local performers. These wonderful people spent their days off and spare time preparing a delightful variety show including musical numbers "As If We Never Said Goodbye," "Look to the Rainbow," "Suddenly Seymour," and "You Gotta Have Heart." There were fantastic full dance numbers like "42nd Street," "Bye, Bye, Blackbird," and "All I Need Is The Girl." One of our favorite performers flew in from New York just for this evening to sing for Henry.

The community also got involved, with performances by the local Barbershoppers, the Middle School Honors Orchestra, the High School Jazz Band, and Show Choir. There were appearances by the local Youth Theatre (which performed a song from HIGH SCHOOL MUSICAL), and our own Gullah Gospel Choir.

All of this was supported by the arts center's wonderful and dedicated staff: the Production Department providing full technical support (including a set, lights, costumes and sound), and the Administration Department organizing, providing the PR and marketing that lead to a standing-room-only crowd.

The evening culminated in a presentation to us (presented by Nintendo's Mario, no less) of an incredible basket of gift certificates and gift cards and a fantastic painting by the art teacher from the school of creative arts.

But the Coup De Grace:

(Extra special thanks to KB and KW)

Throughout our ordeal we would have felt quite alone without the constant help, support and caring from our family, friends, and co-workers.

But on this very special evening we truly felt the arms of the community wrapped around us.

It was magical.

At 8:45 the next morning we left for the airport to go back to New York and Sloan Kettering.

We had some flight delays, and got to the hospital too late to get admitted through the pediatric ward. More waiting, and we finally got admitted at about 9pm, and Henry didn't get his premeds for the treatment until midnight.

All of us were developing allergies that caused sore throat, coughing and laryngitis.

Right before Henry was to get his test dose of the radioactive antibody on Wednesday, Dr. K asked to see us. She had been reviewing Henry's radiation history, and realized just how much total radiation Henry has had. This new treatment is basically radiation, and Dr. K wanted us to kow that this trial has shown no interaction between the radicative antibody and prior radiation treatments and she saw no reason not to go forward. However, we are entering new territory administering this high a dose of the antibody with Henry's level oof previous radiation treatment. At about 2pm Henry got his test dose of the antibody, and was tested throughout Thursday and Friday. He did great, and we were released for the weekend.

Saturday we spent seven hours at the Museum of Natural History. There was a great movie in the planetarium about collisions in the cosmos, an IMax film about dinosaur fossil discoveries, and new exhibits on water and horses.

We were readmitted on Tuesday [May 20] and Henry started getting all his premeds (he had already been taking two daily medications for two weeks to protect the thyroid). The next day, the medical team poured in for the first official dose of treatment. To our surprise, the doctors started telling Mama and Dad that Henry would be radioactive for about a week, and we should limit our total contact during hat time. A lead screeen was rolled in to keep between Henry and us during the night. We were puzzled as no one mentioned any of this during the dose last week, but it was explained that the test dose was 10 millicuries; the treatment dose is 70.1 millicuries - the highest dose given (we believe Henry is the first pediatric patient to get this high of a dose).

The dose was given, and Henry did great, as usual, But the next morning a radiologist came in with a geiger counter and declared that Henry's radiation had not gone down as fast as expected. He registered 9 RADS (at a distance of about 6 feet from his head). He was supposed to be below 7. While he wasn't really in danger or a danger to anyone else, he couldn't be released to go to the Ronald McDonald House where many kids have weakened immune systems. We waited all day not knowing if we were going to be released. Finally, at about 4pm, Henry registered 6.9 RADS and we could leave the hospital.

Saturday morning [May 24] we were on our way home.

It was a very sweet homecoming. And Henry has risen to a new level of courage, poise, and maturity. His stoicism, tolerance and good humor through this is nothing short of astounding. He fills our souls and inspires our hearts.

One last thing:

As we were ending our two-week stay in New York, news came through an internet network (crated by parents of ependymoma patients) of a new partnership between St. Jude Research Hospital and M.D. Anderson Cancer Center dedicated to finding a cure specifically for ependymoma. The full link is here, but the essence of the announcement is:

What’s the best way to find a cure for a vicious cancer that kills both children and adults? The answer seems obvious: Assemble the world’s top experts on adult and pediatric cancer. Encourage them to focus their intellect, energy and creativity on curing that disease.

It sounds simple, doesn’t it? But it has never been done before. Until now.

Recently, two groups of brilliant scientists embarked on the first direct collaboration to find a cure for ependymoma>, a rare central nervous system tumor that affects people of all ages.


Treatment for ependymoma> usually consists of surgery to remove the tumor, followed by radiation therapy. Unfortunately, scientists have no other weapons against this deadly cancer. Chemotherapy is not highly effective, so patients rarely survive if the cancer is not completely removed or if it recurs.

Researchers at St. Jude Children’s Research Hospital are working with colleagues at MD Anderson Cancer Center in Texas to increase the odds for all patients who develop ependymoma. The Collaborative Ependymoma Research Network consists of two teams with one common goal: the St. Jude group studies the pediatric form of the disease, while the MD Anderson team addresses the adult form. Investigators hope that this collaboration will mean the difference between life and death for patients around the world.

The St. Jude efforts are headed by Richard Gilbertson, MD, PhD, co-leader of the St. Jude Neurobiology and Brain Tumor Program. “This initiative is exciting because it’s the first time that clinical trials will occur for children and adults with the same disease,” he says. The St. Jude portion of the project consists of four components: cancer stem cell research, pathology and genomics, drug development and clinical trials.


The ultimate destination for these new drugs is the clinic. Because ependymomant is a rare cancer that affects about 140 children in the United States each year, an effective clinical trial would need to enroll patients from several institutions. St. Jude and MD Anderson will serve as hubs for other clinical affiliates that are participating in the project.

The adult and pediatric programs will open joint protocols, with the first one scheduled to start within the next few months.

Another reason to celebrate: We see a little more light in the dawn.


Anonymous Anonymous said...

Wow! You guys have been busy!! The Nintendo place sounds SWEET!! I hope you guys are doing well, I miss you!

Love, JennyDots

11:41 AM  
Anonymous Anonymous said...

Thanks so much for the update - I got exhausted just reading it. You all are on the move - doing such great things and inspiring so many people. I love seeing all of your pictures and the slide show is awesome. You all are in our thoughts and prayers everyday.
Love, Deb, Dan, Brian, and Annie

4:18 PM  
Anonymous Anonymous said...

So glad you all had such fun in n. y. I love it, too. I am glad to be alive in this world when such so much dedication and progress is being made in the medical field. I appreciate the blog author's ability to translate medical language for people like me. I am so proud of you three and keep you all in my heart. I love you, bug

9:18 AM  

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