Patient Stories

The Mark Staehely Pediatric Cancer Foundation Donates $100,000 to Northwestern's Department of Radiation Oncology for Research

Mark had a dance of irrepressible joy that only he could pull off, though he encouraged others to emulate it. Diagnosed with neuroblastoma when he was 12, Mark determined he would live his life helping others. His positive spirits lifted those of many other children with cancer. He did this by his daily example and making sure children who were required to stay in Children's Memorial Hospital (CMH) at the holidays each received a toy. Jauntily wearing a Santa hat, he passed out the toys that he and his team had collected. The Christmas before his death, Mark reached his goal of distributing 10,000 toys.

Mark also felt strongly that children who were treated for cancer deserved "something more than a recognition sticker" so he received approval to place a bright blue, red, and yellow treasure chest in the clinical waiting room.

When they finish their treatment sessions, each may select and keep a toy from the brimming chest that contains stuffed toys, miniature cars, action figures.

Mark's mother, Sue, created the foundation along with other family members and old friends, to carry on Mark's work. The Foundation recently presented a commitment of $100,000 to John Kalapurakal, MD, associate professor, radiation oncology, to further research in pediatric neuroblastomas. Dr. Kalapurakal will lead a study of novel therapeutic agents, including liposomal nanoparticle mediated intracellular hyperthermia with irradiation, for pediatric neuroblastomas.

McGaw Physicians Collaborate Using New Treatments to Extend Life of Brian Neiberg

On a long-anticipated family vacation in Hawaii, a fun-loving, athletic,16-year-old named Brian experienced terrible arm pain. After a hurried trip to a hospital emergency room on the island of Kona and some tests results that indicated trouble, an emergency air flight returned he and his family to Chicago. As soon as it could be arranged, they met with Dr. David Walterhouse, a physician specialist at CMH. After running more tests and analyzing the results, Dr. Walterhouse told the Neiberg family that Brian had metastatic class osteosarcoma and explained that his prognosis was poor.

The athletic teenager underwent standard treatment, staying in the hospital Monday through Friday for “live in” chemo treatments at CMH and then spending weekends at home. During Brian’s treatment, he had eight surgeries to remove tumors and salvage his shoulder and arm. After about a year of treatment, the available treatment options had all been exhausted. No Phase I or Phase 2 class clinical research trials were open that could enroll Brian to possibly offer him other treatments. What else was there to do for him? His breathing was labored and his health continued to decline.

As suggested by a friend, Brian’s mother, Patty, read an article about an experimental drug, gemcitibene,that had had some treatment success with this type of cancer. Brian’s physician, Dr. Walterhouse had read a few positive reports about this drug as well. Further Internet research led them to seriously discuss gemcitibene’s possible use in Brian’s case. After further consideration, Brian, Patty, and Dr.Walterhouse agreed to try gemcitibene and within three months, Brian’s most invasive lung and class heart tumor had shrunk 86%. He could breathe easily again. A much higher quality of life returned and he lived for another two full years. Shortly after, Dr. Walterhouse announced the start of class clinical trials on gemcitibene because it had been dramatically effective. Word spread throughout the Children’s Miracle Network, physicians collaborating to discover and share cancer treatments.

Near the end of Brian’s life, Dr. John Kalapurakal, associate professor, radiation oncology and neurosurgery at NU’s Feinberg School and a radiation oncologist at NMH, was asked to consult on the case. He began by combining gemcitibene and standard doses of radiation. Initially the treatment was not effective, but when the dose was significantly raised, he achieved highly positive results. Happily, Brian’s life was extended a while longer. He lived for four years after the initial diagnosis – much beyond his initial projected life expectancy.

Brian died of pneumonitis on September 8, 2006. Part of his legacy is that the treatments that extended his life were used right away to beneficially treat others as well. Thanks to Brian’s persistent and selfless mother, Patty, and the concern and collaboration of two dedicated physicians, new treatments were tested and positive results gained.