It is always a heartwarming and emotional experience to meet with other families who have lost a child to brain cancer. I had the true pleasure to connect with a group of parents, all of whom had lost a child to the rare brain cancer gliomatosis cerebri, at the Second International Gliomatosis Cerebri Conference, which was recently held at the National Institutes of Health.
The powerful emotions we felt were highlighted by the fact that we were there with a number of the brightest neurosurgeons, neuro-oncologists, researchers, and others who were fully committed to learning more about this cancer, sharing research, and finding effective treatments so no other families would have to go through such a loss. Read more
On New Year’s Eve 2010 our lives took an unimaginable turn: A doctor told us that our seemingly healthy 19-year-old daughter, Elizabeth, had inoperable brain cancer. We were advised to take her home, find palliative care, and expect her to succumb to her disease within the year. Words cannot describe our devastation, despair, and anger. How is it possible in this day, when we send space probes to the edge of the solar system and develop driverless cars, that there can there be no effective treatment options? There was literally no hope—only prayers for a miracle. Read more
They say that life is a highway and its milestones are the years,
And now and then there’s a toll-gate where you buy your way with tears.
—Joyce Kilmer (“Roofs,” 1917)
September is all about milestones, with its back-to-school firsts and the excitement of new beginnings. This year we have a special milestone: After 40+ years in my childhood home, including 14 years raising our family in it, the Andersons have moved! That house was a home base we had only ever planned on expanding, but Hurricane Irene five years ago, then Sandy a year later, was the beginning of the end. We began to mourn our home then, but we never could have imagined what was yet to come. I’ve learned a lot in the past five years about “the best laid plans.” Read more
“Your marriage must be so strong.”
I have heard this statement often over the past three years. My 3-year-old daughter, Allie, died of gliomatosis cerebri in June of 2013. My husband, Kyle, and I are still together, and our marriage has survived this tragedy. But the truth is that it has been extremely difficult to rebuild our lives after cancer stole so much from us. Read more
“You have cancer” are three words no child should ever hear. Most people, however, don’t realize the impact those words have on the people around the child. It was an odd feeling when the word “cancer” was first used around me. My brother, Zachary, was diagnosed with an inoperable brain tumor called DIPG in 2013 and fought for 9 months, passing in March of 2014.
February has always been special for me…it’s the month of my birthday, it’s when I met my husband 23 years ago, and on Valentine’s Day 2007 my second son, Sean, was born, making our family of four complete. But in 2012, February lost its charm in a way I never could have imagined. Eight days before his fifth birthday, Sean was diagnosed with a dysembryoplastic neuroepithelial tumor (DNET) in the left side of his brain. Told by doctor after doctor that his tumor was inoperable due to its size and location, we were not given many good options for treating Sean: surgery that would likely leave him with a devastating brain injury; chemotherapy that might not even work on his type of tumor; or radiation, which can have devastating long-term side effects on the developing brain of a 5-year-old child. Read more
When a child is diagnosed with a brain tumor, an entire family is affected. We asked some of the children’s siblings to share their unique perspective on having a brother or sister diagnosed.
Gavin was a toddler when his brother, Ty, was diagnosed with AT/RT, and just three and a half when Ty passed away. Now in kindergarten, Gavin made a drawing that shows Ty in a wheelchair and himself as Spiderman. “I got in a fight on the bus because the kids told me I don’t have a brother,” he says. “I yelled at them and said ‘Yes I DO!’ I hate the bus.”
As a father, you think your biggest worry will be “please let me not drop him” or “let me please not lose him at a toy store.” You are never prepared to hear shattering news that makes all your other worries seem small and insignificant.
On January 22, 2007, I received the worst news any parent could ever receive. My entire world seemed to be crashing in on me. Cristian, my handsome son, was sick. The doctor spoke words that seemed to be in a foreign language, a language I had never heard. Diffuse Intrinsic Pontine Glioma, he said. To me those words meant nothing other than: Something is wrong and I have to fix it. Read more
It’s been two years this summer since my father, Daryn Clark, was taken away from us. I remember him looking me in the eye and saying he wanted to be remembered, but that “I don’t want to be remembered as the guy who had brain cancer.” I’m proud to say he is remembered every day, and that his thumbprint will be a part of research for years. His picture hangs in the CBTP research lab for all the researchers to see as they enter, to remind them that these “children’s cancers” are not limited to children. My family’s loss is different from what most of the other CBTP families have suffered, but my determination is like everyone else’s in the group—to fight for better, more effective treatments, so we can stop these tumors from robbing families of their loved ones. — Kathleen Clark
We would love to hear from other family members, including siblings, grandparents, and others who would like to share their experiences. Please email your stories to firstname.lastname@example.org
For parents of a child who has had a brain tumor, our story thus far has been a happy one. We are thrilled to report that our son Stuart has been NED (No Evidence of Disease) for five years. Stuart’s journey, however, has—and will continue to be—difficult. Brain cancer has affected him physically, mentally, and emotionally. Yet, he is with us, and thriving in many ways. For this we are very grateful.
Even if a child is “lucky” enough to have a brain tumor that can be removed (partially or entirely), therapeutic choices are limited and highly toxic. When Stuart was starting treatment there was no efficient way to attack the tumor cells left in his brain, so it was recommended that he receive some rounds of “high-dose” chemotherapy. An oncologist once described it as unleashing a nuclear bomb in his body in order to wipe out a very small target. But we realized how fortunate we were to have that option. Read more