“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
As all couples have, we’ve experienced those defining moments in our life together, including our wedding day and the births of our children. While those continue to resonate with us, we now have another defining moment—one that reset our concept of “normal.”
That defining moment came on December 1, 2012, at Connecticut Children’s Medical Center, when our son was diagnosed with an inoperable brain tumor. In less than five minutes our lives were forever changed, and we found ourselves desperately seeking answers in a world that we had never even known existed. Read more
When you read about cancer families, you tend to hear a lot about the cancer kid and the parents. Siblings are mentioned, but are considered to be the silent supporters in the family. Being a cancer sibling myself, I understand the everyday struggle of living with cancer kids and the responsibilities you hold within the home and outside of it.
“Sisters by chance, friends by choice.” My sister and I were very close, and we told each other everything. Don’t get me wrong, we did fight just like all the other siblings in the world, but in the end we always reverted to being the giggling girls playing with each other and making messes. Read more
Michael and I recently spent time traveling in the Southeast, where we had the opportunity to visit some old and historic cemeteries. We were initially startled to see so many graves for young children. It was a reminder that it was not uncommon for parents to lose children a century ago. Indeed, my grandmother lost a 5-year-old daughter to diphtheria and her oldest son was crippled by polio. Medicine has come a long way, but not far enough.
Today the number one killer disease in children is cancer, and the most deadly form is brain cancer. Unfortunately, progress in treating this cancer has been nonexistent. While brain cancer is difficult to treat because of the nature of the organ, the real impediment to progress has been funding for research. Read more