Ten years ago, Calli Kalman of San Luis Obispo told her parents, Frank and Terry Kalman, that she had a pain in her hip. They also discovered a bulge in their then-12-year-old daughters side. They took Calli to the doctor, who ultimately diagnosed neuroblastoma.
It was a word wed never even heard of, Frank said. That was the beginning of a huge journey.
In his quest, Frank found that the cancer develops within nerve tissue, the sympathetic nervous system that controls body functions from heart rate to digestion.
He also found in his search that it attacks children at a rate of one out of every 100,000 kids. The disease normally strikes children under age 5 and more often boys, so Callis diagnosis was somewhat atypical.
As pernicious a cancer as there are, the Mayo Clinic says the symptoms include everything from abdominal pain, to eyeballs that seem to protrude from the sockets, to dark circles, similar to bruises, around the eyes, to bone pain.
Over the past decade, Frank said, Callis had 45 to 50 weeks of chemo, three major surgeries, has relapsed four times, had a couple dozen small surgical procedures, and, ironically, Shes one of the lucky ones.
During his 10-year odyssey, weve become familiar with top doctors, centers and promising treatments. In addition, weve been made aware of shortcomings of pediatric cancers, which is lacking funding.
And therein lies the heart of Frank Kalmans quest:
While big charities do a good job raising funds for adult cancers, its almost nonexistent in the pediatric cancer community.
The painful reality the Kalmans have learned is that unless there is a widespread application for a drug, research is dropped.
And in a cruel whipsawing between hope and despair, one drug that had been called one of the most promising to treat neuroblastomy was dropped because of costs of development and lack of potential for profit.
So the medical community continues to use traditional cancer-fighting methods most notably chemotherapy, surgery and radiation. And as an added measure of misery, the disease and its treatments are incredibly painful because the disease is nerve-driven.
A physically sturdy man who laughs easily one moment and can tear up the next, Frank took his mission of encouraging research on the road, traveling around the country, giving talks about the need to whoever would listen.
His efforts led to founding the Kids Cancer Research Foundation this month, a nonprofit organization that aims to donate funds to researchers in hopes of finding a nontoxic treatment for neuroblastoma.
The reason for a nontoxic cure is the horrendous side effects of chemo: hearing loss, cognitive loss and infertility, among a host of other negative side effects.
Franks work has been successful in numerous ways. Hes caught the ear of various professionals who have offered everything from website and brochure production for the foundation, to legal firms providing advice, and securing the expertise of some of the leading cancer researchers and doctors to sit on the foundations board of directors.
Chris Kennedy Lawford, son of the late actor Peter Lawford and nephew of former President John F. Kennedy, has thrown his support behind the foundation as a spokesman.
The heroes here, Frank said, are the nurses and doctors who are fighting this disease with an extremely limited arsenal; theyre on the front lines.
Now, I know how kind-hearted and generous you readers have been in the past. As the year comes to a close, and youre looking for a charitable tax deduction, I cant imagine a more meaningful donation than to fund research to find a cure for our littlest cancer victims.
Please go to the foundations website at endkids cancer.org, or call Frank at 805-550-7682 to find out how you can help the foundation help underwrite a cure for this horrible disease.
Reach Bill Morem at bmorem@thetribunenews .com or at 781-7852.