Monday, February 8, 2010

Death and Eric Fowler

There once was a nice kid named Eric Fowler who unfortunately was diagnosed with a rare and difficult form of leukemia. He was one of only 40 people in the US with this particular kind, A.L.L. He had a gorgeous girlfriend who was loyal and true. He and his mom may have had differences before, but they came together because nothing can really break the bond of love. In eight months of fight against this monster, his mom never left his side, basically living in the chair beside his hospital bed.

I got to meet Eric at a fundraiser for him. Our friends Dan and Annie opened their home for a silent auction, BBQ and music to rally around Annie’s nephew Eric and his family. There was a wonderful turnout and we had a great time. I took advantage of the moment to help sign up people to be tested as bone marrow donors.

It’s a really easy test, part of the Be The Match Registry. The worst part is filling out the form. When I sign people up, I tell them if they can get through filling out the form, the buccal swab thing at the end is a piece of cake, just some big Q-Tip-like swooshes inside your cheeks. The Hot Wings I had during the Super Bowl were much, much more painful.

Bone marrow transplants are pretty amazing. I got interested in helping people get tested to be donors through friends in the Tongan community here in the San Francisco area. Our friend Tui, who painted our house just the shade of peach with the red-orange trim I wanted, is Tongan and is one of my favorite miracles. He’s a member of the Tongan choir at our little church who got leukemia and a bone marrow transplant. It was pretty clear that both the leukemia and the transplant were no “piece of cake.” But Tui is able to work and enjoy his family. His daughter came up to me yesterday and gave me a hug. She started classes at college and I am so pleased for her. She’s so excited, scared and hopeful. One of Tui’s nurses at the hospital comes to our church too. She said Tui is a miracle.

We heard about another Tongan with leukemia, again through church. Robert’s granddaughter Tatiana needed a bone marrow transplant right away or, well, no one wanted to think about it. But she needed it within weeks. She was just a toddler. We were horrified to hear it, a baby threatened by something we hardly understand.

One of the challenges with the Asian-Pacific Islanders is that so few are registered as bone marrow donors, so finding a match for Tatiana or Tui is like finding a needle in a haystack without exactly knowing where to find the haystack. My husband rallied the Vallejo Rugby Club to register for bone marrow testing. This big, happy, crazy team of ours is comprised mostly of Islanders, so at one of the games I learned the whole, easy buccal swab thing and we registered over 20 volunteers at one rugby match. The next week, Tatiana’s doctor found a donor, not from our team but from cross checking heart donor listings. Within a matter of weeks, Tatiana was up and playing, the terror of the hospital to the delight of her doctors, nurses, friends and family. She was told she “had” to go home. What a fabulous happy ending and wonderful beginning for her.

My own family has been touched by lymphoma. My nephew too had a happy cure. I’m so glad to see how he and his family are enjoying life in their undersea and overland adventures. My great nieces are better than great!

Caroline, one of my co-workers loves to volunteer to give back to her community in many ways, so when she decided to do the Leukemia and Lymphoma Society’s Triathlon, I was an enthusiastic supporter. I followed her training with the Team In Training group, her ups and downs with bicycling, running and swimming in the ocean, an ocean with sharp rocks and hungry sharks. On the big day, my husband and I got up early and drove to the beach at Malibu with our cameras, ready to snap photos of the finish line. It was a huge crowd of people from all over on that beautiful expanse of beach that looks just like what non-Californians thing the whole state is. I was even treated to a little “Star Dazzle” when I spied David Duchovny and William H. Macy among the triathletes. We watched the heroes in their wetsuits swim against the cold current, looking like so many sea lions. We watched them ride their bicycles miles and miles in the hills. And we watched them hop off their bikes and keep going to run the last leg of the race. It was a triumph when Caroline crossed the finish line. She was not what you would think of as a traditional athlete, but she had trained, tried and made it. She had raised a significant amount of money to help the Leukemia and Lymphoma Society, to bring life to others.

That happy crowd at Malibu seems far, far away from the quiet fight Eric and his family had with the monster. After Dan and Annie’s fundraiser, Eric sent each of us a thank you note and a photograph. He didn’t forget us and asked that we not forget him. We were thrilled to learn last October that he had been matched with a bone marrow donor. It seemed like the victory line was in sight, just a few more pounding steps in the sand away.

It didn’t turn out that way, though. Last week, Eric had had a rough week. Because his leukemia was a rare kind, the teaching hospital was doing some experimental treatment to help with the problems Eric was having with donor rejection. What Eric really wanted was a hamburger from McDonalds but he had to wait because the treatment was scheduled. He talked to his lovely girlfriend, his family and friends. And, because his hospital closed its visitors’ room in the oncology wing at 9 pm, they asked the family to go home or at least go to the hospital lobby, an uncomfortable room with overflowing trashcans.

It was then that Death came for Eric and he had to go just a little while after midnight.

Do we forget, in all the silent auctions, the triumphs of Team in Training, and in the earnest form-filling and buccal-swabbing push to make a difference, that the monster wins too many times? We were not wrong to cheer for the lives saved, like my nephew, our friend Tui and little Tatiana. Eric just wanted to work, love his girlfriend and have a Big Mac. He just wanted to live like anyone else. We were not wrong to cheer for Eric, either.

So it is for Eric that I ask that you say thank you for the lives lived, however long or short, and to ask you to continue to help. Sponsor a Team in Training triathlete. Better yet, get out there and pedal with them and raise more money. Be a bone marrow donor if you can. Sign others up. Eric’s hospital had no psychologist on staff to talk to the oncology patients about their depression, anger and fear. Budget cuts, we expect; but had it ever been considered? Even chaplains have to get paid so they are being cut. Advocate for hospitals to get better funding so families can support their loved ones and be with them through good times and bad. Better yet, volunteer. Whose life will you touch? How short or long will it be? Let Eric’s death spark change for the better to mean something more than sadness for those who loved him.

I’m often asked if the Death card means death. The “warm and fuzzy” tarot interpretations say, “Don’t worry. Death means change. Don’t be afraid.” The reality is that sometimes Death means death, period. But like all tarot readings, you have the chance to make a difference. You can make Death mean Change. This time, please make a change for the better.

Good night, Eric. Enjoy that Big Mac, sweetie.

Team in Training:

To register to be a bone marrow donor, go to Be the Match:

Best wishes.

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