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!
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.
Marissa's Story
Marissa Christine Simmonds was born a healthy baby and continued to thrive
her first year. She loved books, birds, dogs and especially other babies. When
she was 15 months old, she started getting sick and initially her pediatrician
thought it was a stomach virus. After several appointments with her pediatrician
and a trip to the emergency room, she was sent to Children's Hospital in Seattle
for a head CT scan, which showed an acute case of hydrocephalus and a four
inch tumor in her brain. Four days later, she underwent a nine hour brain
surgery and was diagnosed with an Atypical Teratoid Rhabdoid Tumor (AT/RT).
She never was herself again.
In the following four months, Marissa was treated by arguably the best oncologist in the world for 0-3 year old children with brain tumors, Dr. Russ Geyer. She had an aggressive course of chemotherapy and several more surgeries to reduce her hydrocephalus and increase her chances of survival. Unfortunately, the chemotherapy was unsuccessful in stopping the growth of this very rare and aggressive tumor. When an MRI showed that the tumor was growing back, her team of medical professionals recommended that the most loving thing for Marissa would be to discontinue treatments and admit her to a pediatric hospice program. It was an impossible decision that nobody should have to make.
Since the moment Marissa died, she is missed every minute of every day, and every moment in between. In an effort to prevent other families from experiencing similar circumstances, the Pediatric Brain Tumor Research Fund raises money to fund research which will more effectively treat horrific brain cancers like Marissa's. All donations raised go directly to the Olson Neuro-Oncology Lab at Fred Hutchinson Cancer Research Center, which is funded by Children's Hospital. Thank you for helping us cure brain cancer!
Keaton's Story
There was no question about it: Keaton was his father's son . . . sweet, smart, and
very clumsy. However, two months after he learned to walk, his gait was still
wobbly. Numerous trips to the pediatrician produced numerous reassurances that
he was developing normally. But, as it turned out, we had reason to be worried. A
subsequent MRI detected a tumor on the back of Keaton's brain. He was admitted
to Children's Hospital for surgery and there, neurosurgeons removed a malignant
tumor, a medulloblastoma, from his brain. Even more devastating, a MRI of his
spine prior to surgery revealed that the tumor had metastasized down his spine.
This was the worst possible news. Because of Keaton's young age (16 months), he
was already considered to have a poor prognosis. That he had the metastatic
form of this disease diminished his chances even further. In an effort to rid Keaton's body of the cancer, he endured six rounds of high-dose chemotherapy, the final three treatments followed by a stem cell transplant after each dose. The chemotherapy was followed by six straight weeks of daily radiation treatment. Keaton was not even two years old.
Fortunately, Keaton responded to this intensive treatment. After four months of chemotherapy and six weeks of radiation, the tumor and dropmets in his spine appeared to be gone. A spinal tap detected no malignant cells. Keaton's positive progress is a direct result of the research performed at the Olson Neuro-Oncology Lab at Fred Hutchinson Cancer Research Center which operates in partnership with Children's Hospital. Throughout Keaton's treatment, we took some comfort knowing that his plan was based upon the latest research available.
While we are grateful that Keaton responded to his treatment, no child should ever have to endure brain cancer. Please join us in supporting research that will result in better treatments and cures for kids with brain tumors.
