Camaraderie on the beach

By Suzie Siegel

For the first time, I flew to Los Angeles to see our Ocean of Hope team compete in the Catalina Classic Paddle-board Marathons last month. I discovered that you don't see much paddling from the beach, but you do have plenty of time to talk to survivors and supporters.

Some of us had never seen other volunteers in person. Some stretched out on beach towels and under umbrellas. Others worked behind the tables laden with food and O2H merchandise. (In the photo above, Board President Joan Darling; her son-in-law, Dan Olig; and survivor Amy Regenstreif relax before the work starts. The next photo shows past Board President Ellen Silver and survivor Christine Tope.)

People who stopped by got a quick lesson on sarcoma and the Sarcoma Alliance. We also helped educate people on cancer in general.

For a while, I stood out in the sun, selling raffle tickets for the beautiful blue board donated by master board shaper Joe Bark. I caressed it as if I were Vanna White on "Wheel of Fortune." I also sold jewelry -- back home, I sell donated items to raise money for the Alliance.

Paddlers raise money through O2H, as do sarcoma survivors, family members and friends. The series of ocean races known as O2H is the biggest fundraiser for the Sarcoma Alliance. It raised $50,000 this year, bringing the 12-year total to $600,000. This year, Mike Rogers was the biggest fundraiser, bringing in $17,730. He's in the photo below.

A group of us would run down to the water whenever the announcer said one of our four guys had finished. I felt especially happy when I heard Mike’s name announced because he had been so worried that he wouldn’t make the 32 miles to Manhattan Beach. He’s our oldest paddler, and he was still healing from injuries. The picture at left shows him at Palos Verdes.

“It was 8 hours of hell.” The water was choppy, and his muscles were cramping. “I felt bad because I knew people were on the beach, and all I could do was go past the flag, do a U-turn and get on the boat with towels, and shake.

“I had people to help and not let down, and even being an elder paddler is no excuse to stop. … My Mom was on the pier to cheer. I was seeing double at that point and was sore and cold. She said, ‘Well done, you finished. Now what?’ Redefine my goals and raise a lot more money next year to help.”

If you or your loved ones raise $3,000, a bright sticker with your name on it will be affixed to a board. Mike had Tracey Talley’s name on his board. Steve Shikiya had Josephine Schiavo. Joel Pepper had the names of Wendy Sommers and Susan Bohardt on his board. He's pictured with Bob Bohardt and his daughters, Cara Kohlrieser and Julie Beam, both RNs, at left. Phil Ambrose is in the photo at right, with Fred Sardisco, O2H co-captain. Phil had Suzanne Leider and Bob Chambliss. (I'm way

late in profiling Bob on our site. He was the only sarcoma survivor to paddle in O2H, and he was a terrific supporter of the Alliance and others with sarcoma. His mother, Kathy, also served on our board.)

Joel came in seventh in the stock board division. The other three paddlers were in the unlimited division, with bigger and faster boards. Steve was 28th, Phil was 51st and Mike was 57th.

To win a raffle, luck helps, but buying a bunch of tickets helps even more. Steve gets that – and the paddleboards. “He won the Hennessey's paddleboard raffle and the O2H raffle. Crazy!” said Aimee Spector, co-captain of O2H. He's in the photo below.

Barney Tong is the offical O2H photographer. For more photos, go to Picasa.

In the photo below, left to right, on the front row, are: Laura and Fred Sardisco, Aimee, Cara and Julie. Standing are: Suzanne's brother, Philip Leider, board member; board member Marites Tullius, a nurse practitioner and friend of Suzanne's; board member Dave Murphy, whose wife, Piera, died of sarcoma; nurse practitioner Betsy Haas-Beckert and husband Arthur Beckert, executive director; me; Bob; Suzanne's mother, Sharon Leider; survivor Alan Nishio; a person I can't identify; and survivor Kendra Krause between board member Ali and her husband, Dan. Not pictured are survivor Kelly Flynn and Kendra's husband, Brian.

Lanakila women win again and again!

There's no stopping the women from the Lanakila Outrigger Canoe Club who compete for the Ocean of Hope, a series of ocean races that raise money and awareness for the Sarcoma Alliance.

The women's team won first place Sept. 10 in the U.S. Outrigger Championships for the second time in a row. The canoe club is based in Redondo Beach, and the 27-mile race starts in Newport Harbor and ends in Avalon on Catalina Island, all in Los Angeles County.

"It was a very hard race. The conditions were on the ama [outrigger float] side the whole time, and our team had to slog through wind chop and unfavorable swell direction to make it to first place," says Aimee Spector, O2H co-captain. "We beat the second place team by four minutes."

In addition to Spector, the team consisted of Jeane Barrett, Jill Schooler, Dani Bell, Jean Geddes, Kellie Lancaster, Theresa Connelly, Laurie Parker and Lise Fernow. O2H members in two Bradley canoes who raced in that division were: Dawn Suskin, Heather Suskin, Katy Arnold, Agnes Regeczkey, Tanya Muhle and Nancy Hu.

"Our Bradley teams got first and fourth place medals, and all of these teams had O2H team members in them," Spector says. "I am sending out a final thank-you email to supporters to update them on our win and to invite people to donate a final time for the year."

The O2H team also took first place Sept. 17 in the Pailolo Maui to Molokai race in Hawaii. Spector holds the trophy in the photo on the left. On the same day, her husband, Kelly, and Alliance board member Dave Murphy gave out information on sarcoma, sold gear and accepted donations at Hennessey's World SUP and Paddleboard Championships in Hermosa Beach, Calif.

Although the season ended this month, you can still donate on behalf of the paddlers here. Mark your calendars for the Power of the Ocean – Ocean of Hope Gala on Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

Sarcoma in children and young adults

Sarcoma represents roughly 15 percent of all cases of childhood cancer diagnosed each year, says Joan Darling, president of the Sarcoma Alliance. But you might not know it by the way statistics have been presented during Childhood Cancer Awareness Month.

The American Cancer Society lumps different types of leukemia together, for example, but separates different types of sarcoma. That makes it harder to see the impact of sarcoma on young lives.

But Darling sees it. Since 2001, she has volunteered as a patient advocate with the Children’s Oncology Group (COG), the cooperative that designs and implements clinical trials for childhood cancers. A biologist who lives in Lincoln, Neb., she also helps manage the Rhabdo-Kids mailing list for the Association of Cancer Online Resources.

Darling sees more than statistics – she sees her daughter, Ali, diagnosed with rhabdomyosarcoma at 13, now a young lawyer on the board of the Sarcoma Alliance. Here’s an excerpt from her daughter’s story:

“Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump. But, most of all, I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.”

The Alliance plans to expand its sections on children and young adults as well as adding more personal stories.

One will come from Joanna J. Burgess, who won the Great Comebacks Award, South Region, this month. She was diagnosed at age 3 with rhabdomyosarcoma and got a urostomy to replace her bladder. Radiation therapy caused colitis, and she later had to have a colostomy. She became a registered nurse who specializes in wound, ostomy and continence care.

“My efforts to help others have been a passion and an important part of my own recovery,” says Burgess of Apex, N.C. “From my experience, I think I understand the special challenges people face when they are living with these diseases and when they have ostomy surgery. I want people to know that someone understands what they are going through.”

Ashley Grennell of Groveland, Fla., hopes her story will help others see that they can live every day to its fullest despite a bad prognosis. Diagnosed with a sarcoma called malignant peripheral nerve sheath tumor, she went into hospice this month at age 26 after multiple surgeries and rounds of chemotherapy and radiation.

“I knew four years ago that we’d never get ahead of it,” says Grennell, whose last wish is to find the money for a funeral. “But I had four more birthdays, four more Christmases, four more years with my family. It was worth it.

“People always ask me, ‘How do you stay so positive? Every time I see you, you have a big smile on your face.’ You have two options. You can curl yourself in a ball, be miserable and waste your life, or you can say, ‘Yeah, this is the hand I’ve been dealt.’ You deal with it, and you live your life.”

Lanakila paddlers go for another win

The women's team from the Lanakila Outrigger Canoe Club, which took first place last September, hopes to win again this Saturday, when they race in the U.S. Outrigger Championships. For sarcoma patients, however, they're always winners because they participate in Ocean of Hope, a series of ocean races that raises money for the Sarcoma Alliance. The women hope to raise $10,000 this year.

"The U.S. Outrigger Championships, held each year at the end of our paddling season, has over 1,000 paddlers from everywhere in the world competing in what is the best, the most competitive and the most exciting outrigger event in California," says Aimee Spector, steering in the photo on the right. "The women's race starts in Newport Harbor and finishes 27 miles later in Avalon on the island of Catalina."

The race is in Los Angeles County, and the Lanakila club is based at Redondo Beach's King Harbor, also in the county. In addition to Spector, team members include Katy Arnold, Agnes Regeczky, Jean Geddes, Theresa Connolly, Maki Miyazaki, Heather Suskin, Dawn Suskin, Suzanne White, Nancy Huh, Lisa Harden, Jessie Kennedy and Tanya Muhle.

Spector, captain of the Ocean of Hope team, joined O2H five years ago.

"Aimee got our canoe club, Lanakila, involved in Ocean of Hope and it seemed to me like a great way to add something meaningful to our training," says Arnold, in the Kaiwi Channel Relay in the photo above. "I started fundraising, and the support I got from friends, family and acquaintances was overwhelming, so I continued to fundraise every year, and now do it as part of my oc1 [outrigger canoe – 1 person] races in the spring. I like paddling outriggers because I love water sports, the ocean, and there is nothing like riding the swells in the open ocean, especially in Hawaii. It is truly exhilarating."

Geddes says she has learned more about sarcoma, including that animals can get it, too. In fact, it's a particular problem for large-breed dogs.

"Being a part of this team can help raise awareness about sarcoma cancers affecting all parts of the population, human and animal, and to raise money which can help cancer sufferers and survivors get second opinion grants which can literally save their life."

To support one of the paddlers named in this post, click on her name. You also can go here.

After the racing season ends, the paddlers have one more way to help sarcoma patients. They are planning the Power of the Ocean – Ocean of Hope Gala for Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

-- Suzie Siegel