Kids with Cancer: Different Needs, Different Research

Childhood cancers need more funding and attention

/ Author:  / Reviewed by: Joseph V. Madia, MD

Would you shave your head bald to find a cure for childhood cancer? That’s just what Janet Pollok and 45 other mothers are doing on September 21, to raise money and awareness for the disease. The “46 Mommas,” as they’re known, represent the 46 children who are diagnosed with some type of cancer every weekday.

Cancer is the number-one disease killer of children in the United States - more than AIDS, asthma, diabetes, cystic fibrosis and congenital combined. Cancer rates in children have risen every year since 1992, and every three minutes a child is diagnosed with cancer in the U.S. Every four hours, a child with cancer loses their battle.

These are sobering statistics, and one of the most troubling things about childhood cancers is that, by and large, they are very different from adult cancers. The cause of most childhood cancers is still widely unknown.

Many types of cancer that strike children do not occur in adults, yet most of the cancer research in the U.S. is done on adult cancers - only three percent of all federal cancer research funding is dedicated to pediatric cancer research. In terms of the number of productive years of life saved, curing childhood cancer would be the equivalent of curing breast cancer.

Children are being treated at a time when their bodies and brains are still developing, and nearly half of kids who survive will experience lifelong health problems as a result of their treatments, many of which are life-threatening. Long-term effects can include organ damage, cognitive issues, infertility, loss of limbs and a high risk of other cancers.

Researching Treatment & Cures for Childhood Cancer

The St. Baldrick’s Foundation funds more in childhood cancer research grants than any organization except the U.S. government. Since 2005 it has awarded more than 280 grants totaling more than $57 million. The St. Baldrick's mission is not just about funding today's research, but also to encourage the best and brightest new doctors to choose childhood cancer research as a career, and work to find cures that will save young lives and improve the quality of life for patients and survivors.

Becky Chapman Weaver, chief philanthropy officer for the Foundation, said, “It’s crucial that we use every dollar raised by a volunteer and given by a donor in the best way possible, to help kids survive cancer and go on to live their dreams.” Just last week, St. Baldrick's announced a grant of more than $327,000 to Baylor College of Medicine, $75,839 to the Albert Einstein College of Medicine, and grants totaling nearly $600,000 to two City of Hope researchers; bringing the grant total to more than $21 million so far in fiscal year 2011.

“Teenagers and young adults have been short-changed when it comes to better cancer treatments and results, especially if they are part of a minority group,” said Dr. Julie Wolfson, assistant professor of pediatrics at City of Hope’s Pediatric Hematopoietic Stem Cell Transplantation program and a grant recipient. “We think that a lot of this may be because of hurdles in getting access to the best care, and we are looking at the cause of this and how to improve it.”

Creative Fund-Raising Methods

After losing her 10-year-old son, Luke, to a rare brain stem cancer in 2009, Janet Pollok committed herself to fighting for a cure so other children and parents don’t have to go through the unthinkable tragedy she’s had to survive. “It is almost like having to relearn your life. It’s something no parent ever wants to hear – that your son has a cancerous brain tumor, and they cannot operate on it. I don't think I could even breathe when the doctor uttered those words.”

Luke was diagnosed with a rare form of pediatric cancer called DIPG (Diffuse Intrinsic Pontine Glioma), which is a malignant tumor inside the brain stem that only affects children. Because of their location DIPG tumors are inoperable, and it’s an extremely aggressive form of cancer. The median overall survival time of children with DIPG is nine months – exactly the amount of time Luke survived after his diagnosis. There is no cure, and no survival rate.

When Pollok heard of the St. Baldrick’s Foundation, more than a year after Luke’s death, she was inspired by the method they were using to raise research funds to fight children’s cancers: shaving their heads. "I know if Luke were still here, he would totally dig this," says Pollok, who is also donating her hair to Locks of Love. "It is only through research, which costs millions of dollars, that a cure will be found. It is my hope that we can find a cure in my lifetime."

St. Baldrick’s signature head-shaving events are the fastest growing, volunteer-driven fundraising opportunity benefitting childhood cancer research. In 2011, the Foundation’s volunteers and supporters raised a record-breaking $26 million, through more than 980 events and shaving more than 43,400 heads.

New Research Facilities

One of St. Baldrick's shave-a-thons was held at Dell Children’s Medical Center of Central Texas, in March 2011 as part of its Annual Childhood Cancer Fair. As a Level I Trauma Centers, the highest possible level of trauma care, Dell must demonstrate the ability to conduct rigorous research projects surrounding trauma care and treatment, including cancer. In fact, the Seton Healthcare Family, of which the Dell facility is a part, is dedicated to medical research.

Seton recently announced an affiliation with UT Southwestern Medical Center to open a Clinical Research Institute, and to significantly increase the number of medical residents in Central Texas. Dell Children's has received widespread acclaim for combining such cutting-edge medical technology with a collection of healing art and green building design, becoming the first hospital in the world to receive a platinum designation from LEED (Leadership in Energy & Environmental Design).

Across the country in Washington state, Seattle Children’s Research Institute announced the opening of the Center for Childhood Cancer Research. The focus of the Center for Childhood Cancer Research will be to develop innovative new therapies in its laboratories and translate these advances to groundbreaking clinical trials for children with the most aggressive forms of cancer.

The new center’s long-term mission is to eventually replace cancer therapies such as radiation and chemotherapy that can harm the body, with new, ”smart” therapies capable of eliminating cancer with precision, leaving the body unharmed. Dr. Michael Jensen, MD, was named as the Center's director, and will focus his team on the therapeutic potential of the immune system, reprogramming infection-fighting T-cells to seek out and destroy cancer cells in the body.

Because cancer cells begin as healthy cells, the immune system doesn’t recognize them as a threat, leaving the disease free to overtake its victims. Jensen's research team starts by taking T-cells from a patient’s own blood; recombinant DNA is then inserted into these cells, instructing them to recognize cancer cells and kill them.

Bruder Stapleton, MD, chief academic officer and senior vice president at Seattle Children’s, says that the main objective is to provide a new standard of care for childhood cancer. "One where a tube of a child’s own blood is the cure. There’s no surgery, no chemotherapy, no radiation and the worst side effects are having symptoms of a common cold for a few days.”

Photo courtesy of Candi Coated Photography - http://candicoatedphotography.com/

Review Date: 
July 29, 2011