Tuesday, March 10, 2009

Giving it all, not giving it up — Mom donates time, energy, money to fight pediatric cancer

By Jenny Neyman
Redoubt Reporter

Marcia Jacobs would give anything to not know what it feels like to lose a battle against children’s cancer. So she gives everything she can in the hope that no one ever has to know that feeling again — least of all her or her remaining daughter.

“I know that as a mom of a child who died of cancer, that does not inoculate me from my second child getting it. I wish it did, but it doesn’t. I know in a very visceral sense that I’m not safe, so to speak. The cancer mom stork could come knocking on my door at any time, just like it could any of us, so it makes me even more committed,” said Jacobs, of Soldotna. “I don’t want anyone else’s child to be diagnosed, and if they are diagnosed, I want them to be cured quickly, without losing a lung, without losing an eye or a leg or the ability to have their own kids someday. When my daughter grows up, I don’t want her to be the mom of a baby with cancer.”

In October 2000, just before her fourth birthday, Jacobs’ daughter, Anjuli, was diagnosed with an aggressive, incurable form of brain stem tumor called intrinsic brain stem glioma. In the next eight months the cancer robbed the happy, ever-smiling toddler of increasingly more of her health and mobility. In June 2001, it robbed Anjuli of her life and robbed Jacobs of the light of hers.

Through it all, the cancer never stole Anjuli’s love of life or her positive attitude.
Anjuli loved to paint and do artwork. When the cancer paralyzed her right side, she started painting with her other hand.

“She just switched from painting with her right hand to her left. She said her right hand just went to sleep, so she just switched,” Jacobs said.

“Though the cancer stole all of her abilities and bodily functions, Anjuli never complained. Medical staff continually marveled at the bravery and courage of this darling little dancer,” Jacobs wrote about her daughter on a Web site she started.

Even at 4 years old, with the pain and scariness of hospitals and medical treatments and paralysis, Anjuli never gave up. So Jacobs won’t either.

“They told me that the moment they diagnosed her there was no hope. I refused to accept that there was no hope, so I fought hard to get experimental treatments and that didn’t work. I decided, though, soon after her passing, that I was not going to let her suffering and her life be in vain, and that I would dedicate the rest of my life and every breath and every cent to the cause of finding a cure.”

‘Momma love’ on a mission
Jacobs was a single mom living in Washington without family when Anjuli died. She was drained emotionally and financially, with $300 left in her bank account and in danger of losing her house, she said.

None of that was enough to keep her from her mission. She started making art kits for kids fighting cancer in the hospital. Each month had a different theme — Disney or pirates or the ocean. Art was something Anjuli loved, and it was good therapy for the kids, especially the ones too sick to go to the playroom, Jacobs said. She had some parents and family members tell her the last Christmas card or Valentine’s card they got from their child was made from Jacobs’ art supplies.

She also established an endowment in Anjuli’s memory at Seattle Children’s Hospital that funds pediatric brain stem cancer research. It’s amassed over $30,000 so far, Jacobs said.

“It’s in perpetuity. Since my daughter didn’t get to live very long, at least her endowment does,” Jacobs said.

In 2002 Jacobs devised a memorial to raise awareness of brain cancer. She collected hats from the families of brain cancer victims from around the world, including one of Anjuli’s. She took the memorial to Washington, D.C., and it was displayed in the Capitol. She met with her congressional delegation in 2002, and again in 2005, to encourage them to not cut funding for brain cancer research. Meanwhile, the memorial has gone on tour, being displayed at brain cancer fundraisers and awareness events across the country.

Jacobs also raised money for the Make-A-Wish foundation, which paid for Anjuli to have a trip to Disneyland two weeks before she died.

In 2005, Jacobs moved to the central peninsula with her then-husband. She’s since had another daughter, Emily Grace, almost six years to the day that Anjuli died, Jacobs said.

Even though she’s a single mother again, working in the billing department at Central Peninsula Hospital and raising her daughter, Jacobs still seeks out ways to fight pediatric cancer.

“Working full-time and being a single parent, it’s hectic. I’m a big caffeine mother. I think the most powerful force in the universe is love, and for me nothing is more powerful than a mother’s love for her child. So it’s caffeine and momma love, that’s what powers me,” Jacobs said.

In 2008, Jacobs stumbled across an opportunity that turned her head — possibly because it involved about 100 bald ones.
Jacobs heard about last year’s fundraiser for Saint Baldrick’s Society, where people collect monetary pledges to shave their heads, just four days before the second annual event. It wasn’t in enough time to help organize it or raise money, but she went anyway to see if there was any way she could help. She ended up being invited to share her story of Anjuli and her dedication to fighting children’s cancer. Her speech was so moving that the organizers of the local Saint Baldrick’s event, which will be Saturday at the Soldotna Sports Center, sought out her help this year. She happily obliged.

“I just jumped in with both feet doing whatever I can to help, because anything raising money for childhood cancer is great,” she said.

She particularly likes that money from Saint Baldrick’s goes to pediatric oncologists.

“The best and the brightest, in the lab and providing clinical care. Some of the most innovative, important, crucial advancements are coming from researchers that are like that — clinicians. They call it bench-side to bedside research. It’s amazing the things these researchers do,” Jacobs said.

Jacobs has made the rounds of chambers of commerce meetings, Rotary clubs and other civic organizations to spread the word about Saint Baldrick’s. She’s been recruiting people to shave their heads and gathering donations. She also will help set up and clean up at the event, and plans to speak at it again this year.

“Oh my gosh, the more I read and learned about Saint Baldrick’s the more important I thought it was. I thought, ‘I could seriously go put my heart and mind into this,’ so that’s what I’ve done,” Jacobs said. “It did this mother’s heart good, and this year is going to be even better to see all these people stepping up for kids with cancer. I don’t know them but I love them. I’m hugging everybody and crying.”

Fighting children’s cancer is a personal issue for Jacobs, but it’s unfortunately one that’s familiar on the central peninsula. In October, there was a girl in Jacobs’ daughter’s daycare program that died of leukemia a week before she turned 3, Jacobs said. Each year, 12,400 kids in the United States are diagnosed with cancer, and 2,500 of them die of the disease every year, Jacobs said.

“We really need everybody’s support. We know that it’s a recession, but cancer doesn’t care that it’s a recession. It’s still going to get 12,400 kids; it’s still going to kill 2,500 this year. That research helps every kid with cancer, no matter where they live.”

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