Henry's Blog

Friday, July 31, 2009

The Medical Tourist

A recent edition of the New York Time Series "Well" printed a story called "The Medical Tourist." It featured a young woman who has moved to New York City and is living there solely for her cancer treatment at Memorial Sloan-Kettering.

This hit home for us not just because we also spent some time at Sloan-Kettering, but because it put a name to our activities as a family as we traveled the country seeking treatment for Henry.

We were Medical Tourists: visiting, sometimes residing in locales away from home for medical reasons.

Our medical tourism took us to Savannah, Memphis, Durham NC, and New York City.

As we look back on the unbelievable last two years we had with Henry, amidst all the horror, anguish and pain, we also can see that we filled those days with activity, adventure, and fun.

Driven by Henry's sense of wonder and joy of life, we took every opportunity to explore, play, and savour whatever unique activities a community had to offer.

Henry said it best. We were on a plane headed for Memphis to begin treatments at St. Jude. As the plane lifted off he declared: "The adventure begins!"

The adventure really began in Savannah. Since it is an hour's drive from us, Savannah was more of a commute, but with two of Henry's three surgeries performed there and about one hundred daily round trips for chemo, radiation, and various sundry treatments, we spent a lot of time in that unique city. At first, our impulse was to get in and out as soon as possible, but after a while we took the time to enjoy a bit of what Savannah had to offer.

Henry liked to spend time on River Street, a charming, if touristy, row of historic buildings facing the Savannah river. We dined at many of the pub-like restaurants that have "grog" or "boar's head" as part of their name. Henry loved the old-timey sweet shops that dapple the brick and cobblestone street.

We took advantage of an after-dark carriage ride, winding through old Savannah. Henry tested the willing driver on her knowledge of all the ghost stories of this most-haunted of American cities.

Henry's favorite restaurant was the Pirate House, a truly fascinating building made up of old structures from different periods that merged together over time with a network of mysterious tunnels below. He was enthralled by more ghost stories and always enjoyed a "cocktail" served in a mug shaped like a pirate's boot.

When our treatment plan took us to St. Jude, Henry had to deal with brain surgery, physical, occupational and speech therapies, radiation therapy, and classes to maintain his schoolwork. Henry and Mama had to reside in Memphis for over two months, with Dad commuting back and forth from his job to join them whenever possible. Henry and Mama were stranded at the Ronald McDonald house without a car, so when Dad came we would rent a car and take in as much of Memphis as time (and stamina) would allow.

We spent some time at the Peabody Hotel, whose famous ducks swim in the lobby by day, and led by the Duck Master in a ritual duck parade to the elevator for their night's rest on the roof. Henry was one of the guest duck masters.

We visited the Memphis Zoo several times. We visited the National Ornamental Metal Museum, which includes displays of wonderful metal sculptures as well as working studios and classes.

We visited the National Civil Rights Museum which occupies the Lorraine Motel where Martin Luther King was assassinated.

Of course we visited Graceland. We were joined by cousin Penton's family.

We watched the barges slowly float under the bridge on the Mississippi River.

And there was the food.

Henry had always been a picky eater with a small appetite, but that dramatically changed. While it is true that his treatments often included steroids which spiked his hunger, it is also true that as he grew older, he became more adventurous and became willing, sometimes eager, to try almost anything. And after months of hospital cafeteria dining, I believe that our whole family drew literal and figurative strength and nurturing through our search for interesting, satisfying, and fun food.

We explored Argentinian influenced Churrascaro at Texas De Brazil. We sampled ribs and fried pickles at BB King's on Beale Street. Henry enjoyed crepes from a street vendor. We had lobster pizza from Spindini's wood-burning oven. We enjoyed Lolo's, The Rendezvous, Paulette's, Felicia Suzanne's, the Flying Fish, Corky's, Bigfoot's Cafe, and Automatic Slim's.

Henry developed a surprising love of Sushi. His favorite sushi place in Memphis was Bluefin, a chic and trendy hangout where Henry tried several times to order the sea urchin which was on the menu but always sold out.

Without a doubt our favorite place in Memphis is McEwan's. Henry agreed with their claim of having the best mac 'n' cheese in the world. They introduced us to soba noodles, and featured an award-winning banana cream pie, as well as Alex Hailey's family recipe for black-eyed pea cake. They treated us like royalty, and one of the waitresses became pen pals with Henry.

When Henry recurred, he entered a clinical trial at Duke University Hospital in Durham, NC. This experimental chemo treatment involved sporadic trips to Durham for about a week every month or so over the course of about five months. Durham is a sleepy little town compared to Memphis and Savannah, but we found some treasures.

The Museum of Life + Science has some wonderful interactive exhibits as well as the Magic Wing Butterfly House.We also drove a couple of hours to take Henry to Carowinds amusement park.

When it came to food, there was a burgeoning restaurant scene blossoming on Ninth Street, fueled by the recently closed George's Garage. Our favorite is Vin Rouge, a classic bistro with delectable sweetbreads, a hearty cassoulet, and perfectly cooked seafood. We also enjoyed upscale Greek food at Pappas Grill, breakfast at Elmo's Diner, and Tex-Mex at the Blue Corn Cafe.

During one of our stays we ate a Texas Roadhouse right next to our hotel. Henry noticed all of the photos on the wall honoring those who managed to consume the Big Larry: a two pound beef sirloin. Henry swore that on a future trip I was to take on the Big Larry. So, on our last visit to Durham, when we found that Henry was unceremoniously dropped from the clinical trial, I took on the Big Larry.

It was harder than I thought it would be.

Memorial Sloan-Kettering Cancer Institute in New York was our Hail-Mary: a clinical trial utilizing a radioactive isotope injected applied into the cranial-spinal fluid that was to directly attack the tumor. With the qualifying test, a test dose, and the first real treatment dose, we made three week-long trips to Manhattan, usually staying at the Ronald McDonald house on the upper east side.

On May 6, 2008, Henry celebrated his 12th birthday during that first trip, and we made the most of it. What he wanted more than anything was to visit the Nintendo Center, and that became the centerpiece of all our visits to New York. He tried out new games for the Nintendo wii and DS, and always left the store with new action figures, tee shirts and hats.

On that birthday we lunched at the Hard Rock Cafe and feasted on sushi that night at Haru.

On subsequent visits, we rode the giant ferris wheel at Toys "R" Us, and spent an afternoon at the Museum of Natural History. We dined at LeSteak Bistro and Les Halles Brasserie. We had a luscious panna cotta at Petaluma and Henry loved the grilled cheese sandwich at the Irish pub Finnegan's Wake. We searched, with no success, for the best New York Style pizza.

The warmest times were had at Cafe Luka, a family operation that treated Henry as one of their own, and at Finestra, a cozy little Italian cafe where we were befriended by the talented guitarist who performed there. He played lovely classical and flamenco inspired pieces, as well as a welcome Beatles medley.

We left New York in mid June, heavy with the knowledge that the trial treatment could not stop the progression of Henry's tumors. In July we tried an experimental drug that he could take at home. By August that, too, was discontinued.

On September 29, 2008, the adventure ended.

It is impossible to look back on those two years without reliving the horror, the pain and the despair we felt. But we also can remember the many, many wonderful, joyous times we had together. Buoyed by Henry's hope, faith and spirit, we all lived life to its fullest.

Especially Henry, who lived a lifetime.

Sunday, July 05, 2009

Dad's Post-Father's Day Reflections

This is a family blog. As such, even though the posts all carry my byline, it has always been a collaborative endeavor. Mama and I have consulted on most entries, and edited and proofed each other. We strive to speak in one voice.

Today I selfishly write just for me.

I was not with Henry last Father's Day. I had an event at work, so I put Henry and Mama on a plane to New York for what we thought was to be the second phase of Henry's treatment at Sloan Kettering. I joined them the next day.

After working the event, I went home to find Henry's sweet and tender voice wishing me a happy Father's Day.

We saved that message all year. On Father's Day, I listened to it over and over. I played Rock Band on Henry's wii. We visited Henry's bench. I listened to his message again. Anything to feel closer to Henry and feel a little bit like a father again.

Shortly after I went back to work last October, a friend stopped by my office to see how I was doing. As she glanced around the room, taking in the the family photos scattered rather haphazardly on the walls, shelves and windowsills, her gaze landed on two little keepsakes to me from Henry: a computerized "#1 Dad" certificate and a plaque procured from a theme park proudly proclaiming "World's Greatest Dad."

"I just realized," she said, "you're not a dad anymore!"

While the words stung, they were perceptive. Losing Henry is profound in so many ways, and my attention has been on missing him, on the emotional devastation, and working with Mama to nurture his memory and ensure that his short, star-crossed life will be remembered with honor and purpose. But I have not yet reconciled the earth shattering impact on my place in the universe. Such a huge part of my everyday life was focused like a laser on Henry, on being his Dad. There was all the standard breadwinner stuff: worrying about a good home, the right school, and so on. There were the small things, like not being able to stop at the store on the way home without finding something for Henry, whether it was a new cereal, chicken nuggets, or a Pokemon key chain.

And there was being a role model: struggling to be the kind of man that Henry would be proud of and would want to emulate when he grew up. While I never got that right, it was a joy and a privilege to try.

A couple of days ago, we dug out the old home videos which I started archiving onto DVDs. It's a joyous heartbreak to view Henry: days old, so beautiful, so free - and to know his fate.

In one video, he was seven months old when I carried him onto a California beach to show him the ocean for the first time. As I watched the tape of the beaming child cradled in my arms, I was overcome as I realized how much it resembled his last days when, unable to walk, speak, or even hold his head up, I would cradle his fragile body as I carried him from his chair to his bed.

I wept as I watched it. I weep now as I write it.

In the twelve years between those images, Henry taught me much more than I ever taught him. The child is the father of the man, after all.

I will spend the rest of whatever life I have left trying to emulate him.