August 2009

Bobby Massie Cured

The Massie family is about as close as the US has ever come to having a royal hemophilia family. Robert Massie Sr is a Pulitzer Prize winning author, famous for his books Nicholas and Alexandra and Peter the Great. He began writing about Russian royalty while working as an editor for Newsweek, after the birth of his son Bobby, who was born in 1956 with hemophilia. Suzanne Massie is also an author, mostly on Russian culture and history, such as The Land of the Firebird (of which I own an autographed copy). They are both fabulous writers.

But it was their joint book Journey which sent shock waves to the world. For the first time, hemophilia was documented in all its detailed pathos. Both parents write in alternating chapters: he focusing on the scientific aspects mostly, she on the emotional aspects. It makes for a gut wrenching, blistering page-turner; a roller coaster of emotions at a time when there was no factor concentrate. The Massies were propelled to stardom following the release of Nicholas and Alexandra, which was later made into a movie. There were movie premiers, evenings with celebrities like Stephen Stills, Oscar de la Renta, and dinner at the White House.I was a huge fan of Robert K. Massie by age 25, even before my own child with hemophilia was born. Call it weird, fate or whatever, but there I was, in labor in the fall of 1987, reading Peter the Great while waiting for my child to be born. When my child was hospitalized later and the bleeding wouldn’t stop, I suddenly recalled my mother’s words from a few years ago, when she gave me the book as a Christmas gift: “The author writes about Russian history because his own son has hemophilia.” Little did I know Bobby Massie lived only two miles from my house at the time, Through our treatment center nurse, I was introduced to someone whose whole family I admired. Bobby and I met, and I found him very down to earth, intelligent, and above all stoic. He was suffering from not only hemophilia, but HIV and hep C. I later became friends with his mother, who worked with me to help kids with hemophilia in Russia, something she had been doing for some time. Suzanne became such an expert on all things Russian, that President Ronald Regan relied on her as an advisor for Russian policy, and she welcomed him to Russia, to the Pavlosk Palace, which she had helped to renovate. Remarkable family!

Bobby is also well known in Massachusetts for running for public office: he made history in 1994 by becoming the first person in the US to have HIV to run for Lieutenant Governor. He ran with Mark Roosevelt, a descendant of Teddy Roosevelt. And now I just read over the weekend that Bobby has been cured of hemophilia. How? A liver transplant on July 10. If you never heard of this, factor VIII is produced in the liver. Transplanting a liver from someone without hemophilia will give you a liver that makes factor VIII. It’s only for life and death emergencies, though. The risks of it being rejected are too high, as are the risks of bleeding. Bobby needed it as his liver had been failing.And true to his family heritage, he did it while making history. In a 10 hour surgery, he received a liver from someone who was receiving a liver from someone else… at the same time! A side by side liver transplant. This is called Domino Surgery, and this was performed at Emory University in Georgia.We wish Bobby a good recovery! Journey, a marvelous book about hemophilia in the 80s and 70s, is out of print. There are limited copies available on Amazon, and eBay. It’s worth reading.

Book I am Reading The Shack by William Young

I bought this at an airport and though being a best seller, i’s just not my style, I guess;  I could not get past the first few chapters. I skimmed through later the plot thesis: little daughter is murdered while family is on vacation (murdered in the shack), father Mack loses his faith, father receives a letter from God one day asking Mack to have a chat with him in the shack. Mack, who had turned skeptic, blindly says “Ok, sure, because maybe the letter is from God” and so on. So I stopped there; I guess I will miss the unfolding plot about how God is an overweight Chinese woman, Jesus is a lumberjack and I don’t even know what character the Holy Spirit was… maybe the postman? Dan Dick, ordained minister of The United Methodist Church, writes: “The Shack is a spiritual Twinkie – sugary sweet with little or no nutritional value. The fantasy tale is very unevenly told, but framed as a might-have-happened second-person narrative. The spiritually naïve and immature might find this to be a deeply satisfying treat. Without a sound theological basis or the application of even the most basic critical thinking skills, a reader might mistake this as more than just a fairy tale.” I won’t rate it given I didn’t read it it and will add that someone I know and respect very much read this, was moved about the message of forgiveness and subsequently reached out to a family member long lost and repaired a relationship. In that regard, this book has great value! It just wasn’t my spiritual cup of tea.

Mr. President, Meet Hemophilia

You know all the intense town meetings with President Obama that have focused on health care reform? One was held in Denver yesterday, and our own Nathan Wilkes introduced President Obama to the attendees and to hemophilia. The New York Times writes:

“At a town-hall-style meeting in a high school gymnasium here on Saturday, Mr. Obama was introduced by Nathan Wilkes, whose family nearly lost their health coverage after costs to care for his 6-year-old son, Thomas, who has severe hemophilia, approached the $1 million lifetime policy cap….In introducing the president, Mr. Wilkes fought back tears as he described the birth of his son in 2003, and the first question the doctor asked: “Do you have good insurance?” Mr. Wilkes told of how he ‘searched frantically’ for a new policy when his son neared the $1 million cap, and how a social worker suggested that he and his wife divorce, so their son might qualify for Medicaid. Eventually they found coverage, with a $6 million cap.”

Nathan and Sonji Wilkes are colleagues and friends: Sonji is a columnist for our newsletter PEN. They are both very active advocates for health insurance reform, and Nathan ran for a political office last year. Their son Thomas has an inhibitor, and Sonji is one of our peer reviewers for our new inhibitor book coming out last this year.

This was the town meeting in which Obama sited his grandmother’s death, and in which the university student Zach Lahn asked how private companies could possibly compete with the government on health care insurance. The NYT writes that Obama replied, “‘The notion that somehow just by having a public option you have the entire private marketplace destroyed, is just not borne out by the facts,’ Mr. Obama said, adding that ‘UPS and FedEx are doing a lot better than the Post Office.'”

Congratulations to Nathan for his select role in introducing the president, and thank you for representing the entire community at such a crucial time.

Great Book I Just Read: The Brief Wondrous Life of Oscar Wao by Junot Diaz
This New York Times best seller and Pulitzer Prize winner traces the story of Oscar, a fantasy, Dungeons and Dragons and sci-fi fan who wants to be a famous author. But we meet his entire Domincian family, three generations of the DeLeons–Oscar’s mother Beli, his sister Lola, his grandmother La Inca, and his friend Yunior– and in exploring their troubled, complex relationship, we also explore the culture and history of the Dominican Republic. Diaz writes explosively, with a hip edginess, directed right at the reader. He weaves into the story the violent history of the DR, its language, its beliefs, its people, its culture, the “Fukú” –the curse– and why Dominican men behave as they do toward their women. And Oscar is so un-Dominican: overweight, can’t dance, no social skills. He longs for a girlfriend, and comes squarely up against a culture of machoism. As someone who has been involved with the DR for 12 years now, I learned a lot more about the island and its people than I already thought I knew. It’s hard to characterize a culture but Diaz has adeptly done it in an entertainingly dark way. Four stars.

The Hemophilic Poet

We have so many talented people with hemophilia in our community. One of them is Richard Atwood, currently president of Hemophilia of North Carolina, who shared this wonderful essay below with us. The other was his subject matter, Tom Andrews, who I had the pleasure to know and meet, a long time ago. An award winning poet, Tom lived an adventurous life, “one that was complicated by his hemophilia, and then used those experiences as a way to uniquely express himself in his poetry up to his untimely death,” writes Richard. Tom published several books, perhaps most famous was Codeine Diary, based on his experiences with pain and the narcotic.

Writing wasn’t his only forte: 11-year-old, freckle-faced Tom clapped his hands for 14 hours, 31 minutes to earn a listing in the 1974 edition of the Guinness Book of World Records. As a clumsier and accident prone child, Tom had bruises and bleeds in his knees, ankles, elbows, fingers, and toes. He was diagnosed with factor VIII deficiency when 15 years old. The diagnosis didn’t alter his risk taking behavior of motorcycle riding, skateboarding, and punk rock band playing.

Here’s his interesting career path: in 1984, Tom graduated from college summa cum laude in philosophy, and then went to work at a 7-11. Tom later worked as a copy editor for the Mathematical Review before teaching writing at the Ohio University and Purdue University. In January 1989, Tom fell on ice in Ann Arbor, MI and broke his right ankle, and began taking codeine for the pain.

Tom was a Poetry Fellow at the American Academy in Rome in 1999. During a visit to Athens, Greece in the summer of 2001, Tom fell ill, and he subsequently died in London, England in July 2001.

Richard writes, “The 1994 collection of autobiographical poems published in The Hemophiliac’s Motorcycle won the 1993 Iowa Poetry Prize. The poet’s first collection of poems published earlier in 1989, The Brother’s Country, was a National Poetry Series winner. Poetry is an unusual medium for an autobiography, though it does allow the beauty of words to be condensed for more meaning, placement, and sound. There were many references to religion and medicine, especially Tom’s female hematologist and the effects of codeine. Italics were used for prayer and other thoughts. The title was taken from one of the poems and indicated the poet’s risk taking behavior.

The 1998 autobiography Codeine Diary was dedicated to John, his older brother. Italics were used extensively for interjected flashbacks and personal thoughts. The author’s life was told in fragmented parts that were often repeated. The autobiography began as a diary of a serious bleed in 1989 and developed into an introspective investigation of the role of hemophilia in his life. Tom did not have any close friends with hemophilia, and he found that each person needs to define what hemophilia means to themselves and to find their own strategies to negotiate hemophilia and to be well. He did acknowledge the benefits of an ideal nurse coordinator and a hematologist.

Thanks so much to Richard Atwood for sharing this with us– may Tom rest in peace, and may we all enjoy his poems. He could well be the most famous poet with hemophilia.

Great Book I Just Read
Hiroshima by John Hersey. This book, which I read just in time to honor the 49th anniversary of the August 6 bombing of Hiroshima and today’s anniversary of the bombing of Nagasaki, is one of those absolutely rare gems: short, full of prose and thoughtfulness, and leaving a lasting impression. The story of the day the A-bomb was first used on civilians, from just before 8:15 am, when the bomb struck, till months afterward, Hershey tells the heart-rending true stories of six survivors—two doctors, two women, and two religious men. You can read this book in one evening, and probably will because it’s hard to put down. Simply told, powerfully effective and unforgettable. A classic. Four stars.

A Hot Time in Arizona

Laurie Kelley and Phil Hardt

Yesterday I attended and spoke at the Hemophilia Association’s annual meeting in Phoenix, Arizona, at the posh Arizona Grand Resort. My congratulations to executive director Alexis Christiansen and her team for a great meeting. At lunch we had fun and thought-provoking exercises that helped get our brains warmed up and fostered teamwork. It was amazing how intensely we all got into solving puzzles, when given a challenge, a deadline and a team. I gave a presentation last night on my work in developing countries, and was proud to mention Arizonian Phil Hardt, who has been helping those with hemophilia in Columbia for years.

The meeting was well attended, with about 200 in the audience. A special session was held for those who speak Spanish, and with a water park just next door, there was something for everyone.

I have loved visiting Arizona this past week. I toured the state this past week, and flew in a hot air balloon over Sedona, went horse back riding, hiked down and flown a helicopter over at the Grand Canyon, stood on the rim of the biggest meteor crater, hiked up Sunset Crater (a volcano), walked through Antelope Canyon and drifted through Glen Canyon while on a boat in Lake Powell. Despite the severe heat, and much mileage, I could never complained: it was one of the best road trips ever. Arizona is truly one of my favorite places!

Laurie Kelley and Alexis Christiansen

I finished off my week by a visit tonight with a special lady: Susan Phillips, mother of a son with hemophilia. Susan’s other son, Mark, raised about $3,000 for Save One Life last year with a luau dinner party, enough to sponsor five children for three years! It was an honor to meet her, and a great way to end a fantastic week.

Good Book I Just Read
The Life of Pi by Yann

I rarely read fiction, only because real life is already so interesting, but this book came highly recommended. It was a bit hard for me to get into, but eventually, I became intrigued and loved it. I love animals and survival stories, and this was a perfect blend of both. An Indian boy, Pi Patel, is raised in a zoo; his father is the zookeeper for the Pondicherry zoo in India. Pi explains in wonderful detail the lives of the animals, while he himself searches for meaning by exploring different religions. Eventually his father sells the zoo and relocates his family to Canada. But while en route, their steamship sinks, and Pi finds himself on a lifeboat with a zebra, hyena, orangutan and a 500 pound Bengal tiger, and so his real adventure begins. Well written with striking imagery and a gripping story. Three stars.

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