On Mother’s Day, we celebrate all moms, each special in her own way. Mothers of kids who have fought childhood cancer have traveled a journey no one would have chosen. May is also Brain Tumor Awareness Month. We asked Gaylene Meeson to share her story of being mom to a very special brain tumor survivor, Hannah.Gaylene Meeson and her daughter Hannah, survivor of an aggressive brain tumor called anaplastic meduloblastoma.
Photo by [Kenneth Lim, kennethlimphotography.com].
With a long history of support from the St. Baldrick’s Foundation, Dr. Eric Raabe of Johns Hopkins University is a “Rockstar Researcher” in pediatric brain tumors.
As an undergraduate student, Dr. Raabe volunteered at a children’s hospital where a pivotal moment influenced his decision to become a pediatric oncologist. He vividly remembers a young boy who had relapsed and was being hospitalized after having one of his lymph nodes biopsied. The boy sat alone in his room with the shades down. In the dark room the boy became more and more withdrawn as he sat and waited for the results. He thought he was going to die.
No sooner had the results come back negative for recurrence of his cancer, than the blinds went up and he wanted a pizza with everything on it. The experience left a lasting impression and prompted Dr. Raabe’s decision to become a pediatric physician scientist. In that moment he realized the impact he could make in a scared and sick child’s life. He decided then and there that he wanted to be part of providing a path to hope and a path to a cure. He wanted to help guide these children from the darkness to a place of hope and light.
What is medulloblastoma?
Medulloblastoma is the most common malignant brain tumor in children. It originates in the back part of the brain called the cerebellum. In up to 1/3 of cases, it can spread to other parts of the brain and spinal cord. Most cases are diagnosed before age 10.
Editor’s Note: Today on the St. Baldrick’s blog, we’ve decided to hand the microphone over to Dan Butler, whose son, Sullivan, was diagnosed with cancer in 2016, at the age of 10. June is Cancer Survivors Month at St. Baldrick’s, and the first Father’s Day after Sullivan’s diagnosis and treatment was especially meaningful for Dan.
Why the Right Diagnosis Matters: Meet a Doctor Working to Get it Right and Hear How Avery Inspires Him
Brain tumors in children can sound especially daunting – but some brain tumors can be malignant and not especially life-threatening. Therefore, getting an accurate diagnosis is key, and Dr. James Olson of Seattle Children’s Hospital is working on more accurately diagnosing and treating brain cancers in children.
Each year, the St. Baldrick’s Foundation picks five kids to serve as Ambassadors. In this role, they represent the thousands of kids affected by childhood cancers and remind us of the importance of supporting childhood cancer research.
Take any group of kids and they’ll all have their own way of talking, their own opinions on books, movies, and video games, their own favorite foods.
But there is one thing the St. Baldrick’s 2019 Ambassadors have in common: childhood cancers. Beyond that, they share the support of loving families and a desire to inspire others to raise money for childhood cancer research.
Our 2019 Ambassadors, from left to right: Aiden, Arianna, Sullivan, Gabby, and Brooke.
Kalea and Noah snuggle in one hospital bed during treatment.
From waking up in the morning to getting tucked in at night, siblings Noah and Kalea were practically inseparable.
They’d eat their breakfast together – whatever 6-year-old Kalea had, 4-year-old Noah wanted too – and brush their teeth together. The two kids would get so immersed in playing together, and so quiet, that their parents, Duncan and Nohea, would get nervous and go check on them. Inevitably, the adults would interrupt some elaborate imaginary adventure and the kids would shoo them away.
Just mentioning herpes might make some people a little nervous, but in this story, herpes is the good guy. Read on for more about St. Baldrick’s Scholar Dr. Gregory Friedman’s work on a genetically altered version of the virus that could be the next targeted therapy for kids with brain tumors.
BREAKING NEWS: An innovative therapeutic tool developed by Dr. Friedman has proven to be safe in kids with high-grade gliomas, according to recently released clinical trial findings. Crafted from the herpes virus that causes cold sores, the genetically modified virus has already shown promise in killing cancer cells and stimulating the immune system to attack the brain tumor – with one patient still showing progress more than a year after treatment! In the next phase of research, Dr. Friedman will study how safe the viral tool is when combined with one low dose of radiation, which is expected to boost the immune system and help the virus replicate.
Dr. Friedman smiles with a young patient in an exam room at Children’s of Alabama.
St. Baldrick’s Scholar Dr. Gregory Friedman discovered that the herpes simplex virus, with a few modifications, will kill pediatric brain cancer cells — without causing cold sores.
Honored Kid Sully loves to bike, run and wrestle with his brothers like any 11-year-old boy. He even tried out skiing over spring break. You’d never expect that just a year and a half ago, Sully woke up from surgery unable to walk.
Honored Kid Sully loves to bike, run, ride roller coasters and play with his brothers, Cashel and Finn. He wants to be a civil engineer when he grows up and dreams of designing the world’s best roller coasters.
It all started with back pain. It was innocuous at first. Hot baths would relieve Sully’s pain for a while, but it would come back with a vengeance. Finally, after many doctor’s visits, a lot of ibuprofen and no improvement, Sully’s parents, Dan and Jen, brought their son to the ER.
Hours later, the boy was in emergency brain surgery.
It seems like only a short time ago that we were celebrating clear scans. It was January 2016 and our daughter Daisy had been given the gift of life. We now find ourselves in the midst of a nightmare.
2015 Ambassador Daisy was diagnosed with medulloblastoma, a type of brain cancer, when she was just 6 years old.
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