Family Corner: Brenda Ries

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

Family Corner: Brothers and Sisters, Fall 2015

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 Campbell drawingGavin Campbell
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.”

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Family Corner: John “Gungie” Rivera

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

Family Corner: Kathleen Clark

Daryn Clark BannerIt’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 info@childrensbraintumorproject.org

Family Corner: Rob and Dana MacNaughton

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

Family Corner: Maria and Geoff Gratton

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

The Story of Siblings

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

Family Corner: Emma Hill

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

From the Desk of David Bernstein

I read with great interest Cindy Campbell’s story in the previous issue of this newsletter about the devastating heartbreak her family endured during the loss of their beautiful 5-year-old son Ty. One can’t fathom why these deadly diseases take our children from us at such a young age, nor can anyone fully understand the toll it takes on the family and community throughout the entire journey of care.

Zachary Bernstein
Zachary was on of the children commemorated on a banner at The Bronxville Road Race last month

My family lost our beloved Zachary on March 12, 2014. He was diagnosed with a diffuse intrin- sic pontine glioma (DIPG). The disease took our beautiful boy in nine months. He was 11 years old. As parents, we do everything we can to try to insulate, protect, and nurture our beautiful children into the adolescents and adults we dream of. Unfortunately, for some of us there are those unforgiving moments in which we join the elite “club” (not by choice) of those who truly understand the emotional roller coaster, and who know what we would give up for “One More Day.”

September was Childhood Cancer Awareness month, a time to honor and remember children and
families affected by these rare diseases, and to help give kids with cancer better outcomes by supporting the foundations, charities, nonpro ts, hospitals, and other organizations that share the mission of raising funds for research.

After Zachary passed away, I had heart-to-heart conversations with our medical team. I asked them “how far off are we from finding a cure for children with DIPG and other pediatric brain cancers?” To my surprise they all claimed we are four to six years away. My immediate question was “Why?” They all responded… “Lack of funding.”

I was stunned to learn that as much progress as appears to have been made…we are still so far away from a cure. Consider this:

• 96 percent of federal funding for research is for adult cancers, leaving only 4 percent for childhood cancers. Yet kids make up 20 percent of our population.

• Funding from large cancer organizations doesn’t help very much; Less than 1 percent of the American Cancer Society’s total dona- tions are directed toward childhood cancer research.

• Pharmaceutical companies fund 60 percent of all adult cancer re- search, but they do virtually no childhood cancer research because it’s not pro table.

• About 900 adult cancer drugs are in the drug development pipe- line, but almost none for children’s cancers.

After Zachary’s passing, my family was highly motivated to launch the Fly a Kite Foundation. The Fly a Kite Foundation is committed to children and families rst. They are the primary reason for our existence. Our objectives are threefold:

1. Creating art packages to provide a creative and therapeutic outlet for young brain tumor patients suffering diminished motor function.

2. Providing grants to fund research and clinical trials for pediatric brain cancers.

3. Providing parent and patient support and advocacy to the newly diagnosed.

Zachary BernsteinFor example, I had a conversation with a family on the West Coast whose 8-year-old son was a candidate for an experimental drug owned by Novartis. They were having challenges obtaining the drug and called me to help. Within 36 hours we received confirmation from Novartis that the drug would be made available under compassionate use. This is just one example of the good work we are doing that has a direct impact on families and children. We wanted to make a difference from day one and I can proudly say…we have.

Not enough attention or funding is being allocated to these causes, or to these beautiful children. One month a year is dedicated to our families’ hardship and the honor we pay to the loss of our children. But the loss of a child to brain cancer should not be recognized over a 30-day period—it should be measured over a 30+ year lifetime. Moving forward, I will consider EVERY DAY to be September. We can’t afford to lose momentum and most of all…HOPE!

I am proud to be affiliated with the Children’s Brain Tumor Project and feel the heart and soul of this elite community is truly making a difference. On behalf of the Fly a Kite Foundation, we thank you from the bottom of our hearts.

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