Family Update: Fall 2016

Posted in From the CBTP Families

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.” On July 1, 2008, Lily LaRue Anderson (“twin B”) was born—naturally and epically, butt first and fists flailing—seven minutes after Brady Cooper. I had greeted each of my three prior babies with a proper “Happy Birth Day!” but I asked this one, “who ARE you”? I did not know it then, but this was to be the ride of my life. Still, it wouldn’t be fair to say that this is the date that defines me, since no one ever prepares you for the dates you never knew existed. The date of diagnosis. The date of radiation, chemo, mask fittings… All the dates of every single MRI. The day something changed. The day she couldn’t walk. The last day she said my name. The day she died: April 6, 2015. All these days make me. Lily LaRue was diagnosed on May 4, 2014. We were in Hershey, Pennsylvania, celebrating Kentucky Derby weekend (as we always did) and she fell at the pool. We wanted to make sure she could go on roller coasters the next day, so we took her to the hospital. (We hoped no one would think we were silly, overly cautious parents, and the irony of that is NOT lost on me.) It was there that we were introduced to “the room.” The room may be different for everyone in its geography, smell, or shape, but we all know that room. It’s where they took us to tell us they’d found a lemon-sized mass in Lily’s brainstem. No, there were no symptoms. No, she was FINE. No, do it again, you’re wrong… We traveled thousands of miles in her remaining 337 days seeking a cure, and we would have traveled a million more. We researched and reached out from a place of acute and overwhelming confusion and knowledge, in a place and time we never knew existed. Pediatric cancer. Brain tumor. Cannot...

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Family Update: Spring 2015

Posted in From the CBTP Families, Updates

By 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. In our small town we learned of another family who had earlier faced a pediatric brain tumor diagnosis. That family encouraged us to reach out to Weill Cornell and the wonderful doctors who specialize in these tumors. It was in early 2013 at Weill Cornell that we learned the name of what had originally been diagnosed as a low-grade tumor: gliomatosis cerebri (GC). In this dark and lonely moment, our random Internet search led us to a comforting web site, Elizabeth’s Hope. We quickly learned the frightening statistics, including the gross underfunding of federal monies for research and the lack of awareness about pediatric brain tumors. We needed to do something, anything, because doing nothing was not an option. That was the catalyst for the establishment of our organization, which we named Our Cure 4 Life. We held our first board meeting on January 25, 2015, with a mission to fund research, raise awareness, and provide support for those afflicted with rare, inoperable brain tumors. We quickly launched a web site (www.ourcure4life.org), created a Facebook page, and are now executing our mission. To that end, we have two major events planned in 2015: our first annual “Giving on the Green” golf tournament (scheduled for May 29 at The Golf Club at Windham) and the Our Cure 4 Life Gala in September 2015, which aligns with Pediatric Brain Cancer Awareness month. Today we live by a new set of rules about living in the present: The present moment is the only moment available to us, and it is the door to all moments. – Thich Nhat Hanh Together with our newfound family within the Children’s Brain Tumor Project, we will make great strides in our combined missions. We remain hopeful and encourage you to help us spread the word, provide support, and raise the funds necessary to find a cure—Our Cure 4...

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Family Update: Fall 2014

Posted in From the CBTP Families, Updates

By 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. My family lost our beloved Zachary on March 12, 2014. He was diagnosed with a diffuse intrinsic 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 and protect our beautiful children, and nurture them 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, nonprofits, 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 donations are directed toward childhood cancer research Pharmaceutical companies fund 60 percent of all adult cancer research, but they do virtually no childhood cancer research because it’s not profitable. About 900 adult cancer drugs are in the drug development pipeline, 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 first. They are the primary reason for our existence. Our objectives are threefold: Creating art packages to provide a creative and therapeutic outlet for young brain tumor patients...

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Family Update: Summer 2014

Posted in From the CBTP Families, Updates

By Cindy Campbell My husband and I were introduced to the world of pediatric brain tumors when our perfect, beautiful little boy, Ty, was diagnosed with a rhabdoid tumor on the brainstem at 2 years and 10 months old. He died 13 days after his fifth birthday in October 2012 and we are left to pick up the pieces of our broken lives. Throughout Ty’s journey, and ever since his loss, Lou and I have been actively involved in getting to know other families like ours, and getting to know the doctors who are committed to helping these children through much needed, grossly underfunded research and clinical trials. We are in constant awe of the men and women who have devoted their lives to pediatric neuro-oncology and pediatric neurosurgery. Doctors like Jeff Greenfield and Mark Souweidane. Of course, there are thousands of scholars, researchers, and doctors who selflessly devote their time to helping others. Searching for a cure. But let me tell you why a career in pediatric neuro-oncology is so very remarkable to us both. First and most obviously, because we are talking about children. Little babies who don’t understand why magic kisses can’t make their boo-boos go away. Many of these veterans (including Jeff and Mark) have small children of their own, and instead of being turned off by how difficult it is to imagine their own children as patients, they are inspired to make sure these children are getting the best possible care and hope for a future. It takes a very special heart to be so devoted to a cause that may frighten others. Then there is the reality of pediatric brain tumors. When a brain or spinal tumor is involved, the detrimental effects are that much more severe. The sad reality of pediatric brain tumors is that they steal so much from the child. The ability to speak, eat, walk, play, and more can all be seen slowly slipping away as tumors progress. Brain and spinal cord tumors are the second most common of all cancers among children, and brain tumors include the deadliest of all types of childhood cancers (with survival rates of 0% in many cases). When a child is diagnosed with a brain tumor, the deterioration is like nothing you could imagine or prepare for. My son, for example, was 100% healthy before the dreaded diagnosis. He met all of his developmental milestones and at 2½ years old was enjoying the use of his improving vocabulary. His sense of humor was evolving and knock-knock jokes were becoming a new favorite (although I don’t think he truly understood the punchlines—at least not as much as his larger-than-life laughter would express). He loved...

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