The PBTRF and Children's Hospital in Seattle are dedicated to kids. Here are some amazing, inspirational stories about kids taking on enormous challenges in their battles against brain tumors. If you have a story you'd like to share with us we'd love to hear it!
Kyle's Story
Eight-year-old boys should never die. They should be forever running, chasing, playing, and laughing. They should be doing everything Kyle Roger did every day of his life, until one morning last February when the cancer in his brain finally overcame the immeasurable spirit that guided him to the very end.
Three years ago, Kyle was a sparkling kindergartner who loved to ski, play soccer and excelled in math. But then this little 6-year-old from Bellingham was diagnosed with an inoperable type of brain cancer called diffuse intrinsic pontine glioma.
Passing Husky Stadium each day on his way to radiation, Kyle would ask to meet Washington quarterback Jake Locker. At the time, Locker had yet to play a college game, but he was happy to accommodate a Husky family from his hometown. The day Kyle met Jake turned out to be a day to treasure. Locker, a tremendous, gentle soul, ran around the turf at Husky Stadium playing catch, allowing Kyle to chase and tackle him, walking out of the tunnel hand-in-hand with Kyle and his brother Nicolas. Locker was pure gold. But Kyle? This kid was the real star. You'd never have known such a bright little boy was sick, that an insidious, inoperable cancer was weaving its way into his brainstem.
That's just the way Kyle was. Happy to see you. Happy to be alive. He had a special, unpretentious spirit and contagious enthusiasm, a natural ease uncommon for a child his age, or for most people. That spirit, combined with the expertise and unwavering support of Dr. Jim Olson at Seattle Children’s Hospital, enabled Kyle to live two productive and joyful years after his diagnosis. Miraculous years considering that less than 10% of children with this type of brain cancer live even one year after diagnosis. And the survival rate is too small to measure.
Dr. Olson’s team at Seattle Children’s and the Olson Neuro-Oncology Lab at Fred Hutchinson Cancer Research Center continue their research to cure malignant gliomas like Kyle’s and other brain cancers. Your contribution directly benefits Dr. Olson’s efforts as well as the children who are diagnosed with brain cancers every day. It's hard to imagine the pain of losing a child. Nobody should go through that struggle. None of us can understand why a little boy must pay that price.
Gabriel's Story
In January 2006, 3 year old Gabriel Rochefort was bombing down the ski slopes in Wyoming. His parents were thrilled that he had taken on this sport so young and with so much enthusiasm. Just a couple months later Gabriel was diagnosed with a malignant brain tumor. No illness, no warning. It was an ependymona – a malignant tumor that in young children often comes with a poor prognosis because they are typically located in places that make them difficult to remove. Gabriel's was in one of those places – against the brain stem. Neurosurgeon, Dr. Anthony Avellino at Children's Hospital remarkably was able to remove all visible tumor without damaging the surrounding healthy tissue. Had it been just a couple years earlier, the risks in surgery would have been much greater. Every year the techniques and prognoses improve.
The next step was radiation and again Gabriel benefited greatly from new research. Until recently the full radiation dose was given through one beam giving the healthy tissue both on the way to the tumor site and exiting the entire dose as well. A new treatment, conformal radiation, divides the dose into several fragments. Radiology oncologist, Dr. James Douglas, worked meticulously with a computer program to formulate a prescription that would aim those fragments carefully to dodge primary centers in the brain whenever possible. This treatment option was especially important because although radiation is the treatment of choice for this type of cancer, there is concern about its effects on the brain especially with children 3 years of age and younger that are in a critical period of brain development. This treatment breakthrough minimized Gabriel's risks to those late effects of radiation greatly.
Today, Gabriel is monitored every 3 months with MRIs for regrowth of his tumor. His grateful parents have a happy, vibrant 4 year old, completely free of symptoms and side effects.
Max's Story
Max was only one and a half years old when he first started throwing a ball in the air and catching it – "up ball, up ball... ball, ball, ball." He grew into a talented athlete. Baseball, soccer, basketball; his coaches said he was special.They had no idea. In February of 2004 Max got home from a basketball clinic and threw himself on the floor crying in pain. His head hurt. Things got worse. Eight days later he had brain surgery to remove a malignant brain tumor, medulloblastoma, from the back of his head. He was 8 years old. He needed daily radiation and chemotherapy for six weeks followed by monthly treatments lasting four days each for six months to rid his body of this aggressive and potentially lethal cancer.
The brain tumor research lab at Children's Hospital, led by Dr. Jim Olson, Dr. Rich Ellenbogen and Dr. Russ Geyer, implemented an investigational study protocol to treat Max's cancer. Because of money raised to fund the ground breaking research at this lab, Max is alive.
But, more than two years later, Max still struggles to run, kick and throw. He continues to grow stronger every day and he still loves to play. He inspires everyone with his incredible determination and will. However, the state of the art treatments currently available to kids with cancer are simply not good enough. Surgery, radiation and chemotherapy often leave children with a lifetime of devastating physical and mental disabilities. The research efforts funded by the PBTRF at Children's Hospital are passionately dedicated to changing this.
