Wednesday, September 29, 2010

Staying in the race

A lot of sarcoma patients can identify with Phil Ambrose, I bet. He came in 80th in the Catalina Classic Paddleboard Race last month near Los Angeles. He races for the Ocean of Hope (O2H) team, the Sarcoma Alliance's biggest fundraiser. The names of Wendy Sommers and Tracy Talley are painted on his board. His photo is above.

"The water conditions were good, but it wasn't as fast as last year," said Arthur Beckert, the Alliance's executive directior. (He's in the photo at right with Joe Bark, who has been great about giving us boards to raffle.) The wind picked up and the water got choppier as the day wore on, making it harder for the people who were already behind. Phil didn't give up. Like many sarcoma patients, he found the strength to keep going.

So far, the Catalina Classic has raised $46,600 for the Alliance. The paddlers raise money, as do sarcoma survivors, family members and friends. For $3,000 raised, a paddler will put someone's name on his board.

Mark Schulein, the biggest fundraiser, placed 23rd. On his board are the names of Suzanne Leider and Bob Chambliss. Bob's mother, Kathy Chambliss, is in the photo on the right with Mark. David Stringer, who came in 45th, honored Doug Harden and Jon Rowland. His photo is below. Joel Pepper, the newest member of the O2H paddlers, placed 48th. He raced in memory of Janet Lasley, and his photo is at the end.

Team Captain Fred Sardisco and Zach Lenz didn't race in the Catalina Classic this year, and Scott Gamble races in Hawaii. The volunteers on the beach were: Claude Alexander; Arthur and Molly Beckert; Betsy Haas-Beckert; Kathy Chambliss; Ali and Joan Darling; Lisa Harden; Ade Lawal; Philip Leider; Joan Mousseau; Dave Murphy; Ellen Silver; Aimee Spector; and Michael and Marites Tullius.

Sandy Williams baked cookies, and Christine Tope made pies and cookies. Barney Tong took the photographs; more can be found on Picasa. If I left anyone out, please leave a message for me in the comments. Our special thanks to all who helped!

Tuesday, September 28, 2010

Celebrating every moment

By Joan Darling

Fourteen years ago this month, my daughter Ali had the operation that would change our family's life forever. On Sept. 6, 1996, Ali had surgery to remove an "abcessed cyst" that turned out to be the tip of an iceberg of a tumor. Everyone, even her doctors, were shocked. She had been ridiculously healthy, having played four games in a select soccer tournament the weekend before. A week of tests later, it was determined that she had stage 3 group 3 alveolar rhabdomyosarcoma.

I honestly cannot remember the date of her last treatment, probably because the cancer journey never really ends, but I will never forget the date we started on that journey.

It's worth retelling what we went through that year, because it wasn't an easy year, by any means. Ali started off on what would have been the equivalent of the Intergroup Rhabdomyosarcoma Study Group (IRSG) IV standard protocol, which was VAC (vincristine, dactinomycin, cyclophosphamide) with high-dose C. She had a very hard time on that treatment, and within three rounds of chemo had lost 20 of her original 116 pounds, due to a week of only marginally controlled nausea followed by a week of severe mucusitis throughout her digestive tract, both of which greatly limited her ability to eat. As a result, she had to be put on TPN (total parenteral nutrition) to stabilize her weight.

The ideal treatment would have been second-look surgery to remove the remains of tumor after chemo reduced the bulk, but the surgeon in Omaha was still unwilling to operate even though only shreds remained. The tumor had been wrapped around nerves that controlled bladder and bowel, and he wasn't comfortable trying to remove it all without doing considerable damage to them. As a result, we looked for a second surgical opinion, and went to the Mayo Clinic. The surgeon there was very reassuring that he could remove the tumor completely, which he did with clean margins. In addition, we met Dr. Carola Arndt there, and we switched chemo treatments to VAdrC/IE (Vincristine, Adriamycin, Cyclophosphamide /Ifosfamide, Etoposide), the standard Ewing's protocol. Ali also started on high-dose glutamine to control mucusitis, and managed to start eating more.

The worst part of treatment was during concurrent radiation and chemo. Ali developed third-degree radiation burns, and had to be hospitalized for about a week. The pain was excruciating, and she needed a fentanyl patch plus PCA (patient-controlled analgesia) morphine to control it. I still don't know how she didn't get a massive infection at the time, but somehow she got through it. When her counts started to recover, so did her skin, and it grew back so quickly that I could almost SEE it grow back.

She's been cancer-free since the second-look surgery, which was on Christmas Eve, 1996. Ali says it was the worst Christmas EVER. Two visits from Santa Claus don't mean much to a bald 13-year-old girl stuck in a hospital bed who is only one-third of the way through a difficult yearlong treatment for a life-threatening disease. But in some ways, it wasn't all that bad. True, the family was staying in a room in the Ronald McDonald House in Rochester, Minn., rather than in our own home. But we learned what was really important that year. Not the presents, not the tree, not the cards. It was cherishing each day and celebrating the small triumphs of life, making the most of every moment we have.
Ali is in the middle of this photo shot at last month's Catalina Classic, with Sarcoma Alliance board member Marites Tullius on the left and Betsy Haas-Beckert on the right. The two nurse practitioners are wearing the red Ocean of Hope (O2H) T-shirts.

Saturday, September 11, 2010

O2H wins at U.S. Outrigger Championships

The women's team from the Lanakila Outrigger Canoe Club, competing as part of Ocean of Hope, won first place today in the U.S. Outrigger Championships. What a great day for the team and for sarcoma patients.

Today's 27-mile, open-ocean race launched from Newport Beach and ended on Catalina Island. First held in 1959, the Catalina race is the ultimate outrigger canoe race in California. Teams compete from all over the state, plus Canada, Hawaii, Guam and Japan.

"As members of the Ocean of Hope, we focus our training, racing and fundraising efforts on the Catalina Crossing," captain Aimee Spector says. "Every stroke of those 27 miles to Catalina is dedicated to the sea of people affected by cancer."

Other team members are: Katy Arnold, Tanya Muhle, Lise Fernow, Lisa Wilson, Kim Lanie, Jessie Kennedy, Kate Eveleigh, Jill Schooler, Jeane Barrett, Heather Suskin, Dawn Suskin, Dani Hart, Alice Haas, Laurie Parker, Lorie Vos, Jean Geddes and Maki Myazaki.

For more history, see this page. You can give a donation on behalf of the team or click on the names on the team page (at the previous link) to donate to individuals. It's not too late.

The members' pages explain their involvement. An example is new member Jean Geddes, whose photo is on the right. She says:
I have been paddling since I was a little kid. I have always loved being on the water, training hard, and competing. It has brought so much joy to my life. But training and racing are not the only reasons for paddling. I am a team member of the Ocean of Hope (O2H), a group of paddleboarders and canoe paddlers who give back to the community by dedicating our time to helping others.
O2H was created to support the Sarcoma Alliance, a nonprofit group that is the gathering place for those affected with sarcoma, a devastating cancer that is difficult to diagnose and even harder to cure. People who suffer from the disease and their families have a place to find guidance, education and support, as well as finding current medical information and treatment options, and to network with others.
My Aunt recently lost her battle with cancer. I saw the devastating effect of cancer not only on my aunt but my whole family. I hope that my efforts to raise money through training and racing will bring help, hope, and some day a cure.