Primary brain tumors are the leading cause of cancer death in children.There is an urgent need to develop new therapies.
Brain Tumor– Josh’s Story
Lisa and Jim of Ham Lake, Minn., were devastated when they learned their son Joshua had just a 30 percent chance of being cured of the tumor doctors found in his brain. However, with the help of a cutting-edge treatment at the University of Minnesota Children’s Hospital, Fairview and the ongoing research supported by Children’s Cancer Research Fund, the family was ready to defy the odds.
Discovering the Disease
Before he was old enough to talk in complete sentences, little Josh would wake up in the morning and say to his mom, “Head hurt.” Then, he would fall on the couch in misery. Vomiting seemed to make him feel better but every few days he would wake up in pain again — even after being treated for sinus trouble by the family doctor. On Christmas Eve morning 2002, Josh was so sick that his parents took him to the emergency room at Children’s Hospital in St. Paul. A CAT scan revealed the tumor growing in the left frontal lobe of Josh’s brain.
Desperate for Treatment Options
Doctors at Children’s successfully removed Josh’s tumor but it was “high grade,” which meant that the surgery alone would not be sufficient to cure him. Without further treatment the cancer was certain to come back.
“It was overwhelming to learn that our son had a brain tumor, and worse, that it was cancerous,” recalls Lisa. “ He was only 2½ years old – how could this happen? We were desperate to do something but we didn’t know what to do.”
Josh’s best hope would be to enroll in a clinical trial and his oncologists referred the family to Dr. Joe Neglia, chief of the Pediatric Hematology-Oncology program at the University of Minnesota. Dr. Neglia was testing an experimental treatment for very young children like Josh with high-grade brain tumors.
Clinical Trial Offers Hope
The treatment involved a combination of powerful chemotherapy drugs. One of the drugs was very effective in killing tumor cells but also extremely toxic to the bone marrow and immune system. Josh needed three cycles of this drug to be sure he got an effective dose. To counteract the drug’s toxic effects, the treatment also included a process called stem cell rescue: Dr. Neglia would extract stem cells from Josh’s blood, freeze them, and then infuse them back into Josh’s blood stream after each cycle of the marrow-killing drug. In this way, Josh’s own stem cells would be used to restore his immune system.
The treatment was harsh but it increased Josh’s chance of surviving. “This was our ray of hope,” says Lisa. “It was hard to allow Josh to go through the chemo but the stem cell treatments helped him recover. We felt it was the best treatment possible, given his situation.”
By supporting the University of Minnesota Cancer Center’s Stem Cell Biology and Phase I Therapeutics Programs, Children’s Cancer Research Fund is enabling the University to continue its pioneering efforts in stem cell transplantation as well as in d eveloping and testing new treatment strategies for children with cancer refractory to conventional therapy, or who are at high risk for treatment failure. This support allows researchers to expend their studies to further develop novel approaches for treating pediatric cancer patients like Josh.
Josh’s treatment lasted for six months. He lost his hair and eyebrows. He also lost a lot of weight, especially during the first round of chemotherapy, when anti-nausea drugs were ineffective. In deciding to allow Josh to receive experimental treatment, the family took a big chance, and it was hard to see their son suffer painful treatment side effects. They prayed they had made the right decision.
Enjoying the Present and Optimistic for the Future
Four years later, they’re thrilled that their son is free of cancer, and they are especially glad he was treated at the University of Minnesota. “Every single nurse on 5B [the children’s oncology unit] was an angel,” Lisa says. “And Dr. Neglia and Jane Torkelson [Coordinator of the University’s Brain Tumor Program] were just so awesome.”
“Dr. Neglia cares about your child so much,” she continues. “He has a really hard job but you feel confident because you can see how much he cares.”
Josh finished his treatment in June of 2003. His parents take him to the University’s Oncology Clinic annually for a check-up and will continue to do so for several years. So far, there is no sign of any cancer returning. Research, like that conducted by Dr. Neglia and supported by Children’s Cancer Research Fund, is the best chance of a cure for children with brain tumors. Thanks to research and the dedication of the University of Minnesota’s health care team, Josh is in good health — an outgoing second-grader who “makes friends like crazy,” loves baseball and computers, and is the apple of his mom’s eye.
