Parents on the frontline of the fight against pediatric cancer share their battles in order to raise awareness and funding for research. Since the last time this column wrote about three children – young warriors who had been fighting the disease – one has relapsed, one has gone into remission and one has passed away.
A week of swimming or immediate cancer surgery?
The question this summer was one of many that Larry and Gretchen Witt of New Jersey have faced as their son has battled cancer for more than three years: Do we take an early slot for more cancer surgery for our son, “Prince Liam the Brave,” that became available before expected? Or pass and let him enjoy another week of swimming and bonding with his younger sister?
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The Witts decided to go ahead with surgery recommended by Liam’s medical team at Memorial Sloan-Kettering Cancer Center in New York. Their feeling: “We want the cancerous mass out and we want it out now,” the dad says.
Dad writes on a blog to friends: “Think for a minute of someone you love and think about what it might feel like to sit there and not be able to stop what you know is trying to take them from you.”
Pediatric cancer is the leading cause of death by disease among U.S. children ages 1 to 14, according to the National Cancer Institute. Surgery, while scary and risky, is the one sure way to gain ground against Liam’s type of cancer, neuroblastoma, his dad says. Chemo has its limits, and children can get only so many treatments before it starts to do more harm than good, he adds.
The family of Ellie Shoal Potvin of Charlotte, knows how chemo takes its toll on little bodies. Two years ago, at age 6, Ellie, a twin, was diagnosed with Stage IV Rhabdomyosarcoma, a rare from of pediatric cancer. Ellie had about 60 rounds of chemotherapy using more than 10 different combinations of chemotherapy agents, plus 30 days of radiation to her lungs and abdomen.
Ellie began cancer treatment three days after her mother found a hard lump in her pelvic area. She went into remission in May 2009 but relapsed three months later. She passed away June 23.
When Ken and Robbie Howiler of Davidson, N.C., got a cancer diagnosis during their daughter’s first week of kindergarten last year, both parents asked for blankets at the hospital. They both felt freezing cold, the mother recalls, when they got the news.
“It’s hard to feel after not feeling for so long,” says Robbie, whose 6-year-old daughter, Marnie, is in remission after several months of treatment for a rare form of kidney cancer that affects children.
The Howilers have started a foundation to raise money and awareness for pediatric cancer research. Go to http://marniejudefoundation.org for more information.
Inspired by her son Liam, Gretchen Witt developed Cookies for Kids’ Cancer, a foundation dedicated to raising money for pediatric cancer research through the concept of local bake sales. For more information, go to www.cookiesforkidscancer.org.
“Our focus is on funding the most promising clinical trials that will get to children as quickly as possible,” says Gretchen.
The group recently announced a $100,000 grant to Memorial Sloan-Kettering to support of a new therapy for neuroblastoma, the second most common type of solid tumor cancer in children.
“Liam’s story needs to be shared,” says his dad. “With pediatric cancer you can make a difference.”
Ideas to get involved, he says:
– Hold “Cookies for Kids’ Cancer” bake sales.
– Donate or help raise money for research.
– Volunteer to help a local non-profit that supports any facet of pediatric cancer, or volunteer at a local pediatric cancer center.
– Educate yourself, friends and relatives about pediatric cancer, such as through the National Cancer Institute or American Cancer Society.
Although anyone at any time can suffer from heat-related illness, according to the Center for Disease Control and Prevention, babies and young children are sensitive to the effects of high temperatures and rely on their caregivers to regulate their environments and give them plenty to drink.