Cookies for Kids’ Cancer Blog

New Clinical Trial Gives Hope to Children Battling Cancer: Carter’s Story

Filed under: childhood cancer research — The Good Cookies @ 3:09 pm August 29, 2017

Ann Dang courageously shares the story of her son Carter, a.k.a Super Carter, and his battle with neuroblastoma. 

When I hear Dr. Mossé’s name, I beam. I smile and I remember the time when we had the honor to meet such an incredible doctor.  We met Dr. Mossé through our adventure with neuroblastoma. Our sweet Carter, otherwise known as SuperCarter as he was renamed by our nurses and doctors and friends, was diagnosed with high-risk neuroblastoma, stage 4, on November 11, 2011.  We were devastated when the doctors sat us down to tell us our sweet boy had cancer. No one in our families (that we knew of) had been touched by cancer. We knew friends who had gone through cancer with their families, but no one personally. We were shocked, and it took a while for us to adjust to the cancer life… to comprehend what was happening. Before we knew it, we were thrown into the world of pediatric cancer, trying to live one day at a time, one foot in front of the other, one breath at a time.

We learned to follow the protocol. And during the initial treatment plan, Carter did great. Children like him with stage 4 neuroblastoma follow the same initial protocol: a rigorous and aggressive year and a half long treatment. He never complained and smiled through every high dose chemo, surgery, stem cell transplant, radiation, and antibody treatment. He finished his initial treatment plan with no evidence of disease (NED) and we were ecstatic. We breathed a sigh of relief, and started looking ahead and thinking about the future.

But within the month, Carter woke up with a headache and asked to watch the movie Happy Feet. It was the movie that we watched during the bad days at the hospital. Tears rolled down my face, as I put the movie on, knowing my sweet boy had relapsed. Scans the next day confirmed my tears as we learned of a whole new world of pediatric cancer: the world of relapse.

In this relapse world, we found our way to Philadelphia for a second opinion, a fresh look at Carter’s cancer, and a new perspective. We were about half-way through our journey, but just felt lost. Carter was relapsing and we knew we needed more, new, and innovative treatments. Children’s Hospital of Philadelphia (CHOP) is renowned for its state of the art advances in pediatric cancer and honestly, we were hoping for a miracle. We were desperate for any treatment, any hope. We were desperate for any shred of good news.

With fierce determination and a few connections, we made it to Philly to meet Dr. Mossé. I’m still not sure how we managed to meet her, knowing she is such a busy doctor with her regular patients and ongoing research. On top of her expertise, she is such a caring doctor, taking the time to meet with families like us, who are looking for answers and desperate to find treatments to save their child. We waited patiently for our appointment, although barely moving or even taking a breath. Our journey trained us to be able to recite Carter’s medical charts and to write down dates, procedures, and medicines that he took. We even knew how to pronounce the unpronounceable words and medicines; we knew more than we ever should. We often recited his medical history without emotion at all, because any pause could bring the tears.

Then, Dr. Mossé entered the room. She was kind, light-hearted, and made us feel so at ease. She spoke so elegantly and softly, and Carter smiled at her with his big brown eyes. She was sweet and delicate when she examined him, had already looked at his X-rays before our appointment, and knew his medical history. Her suggestions for next steps were helpful, and although there’s no cure for neuroblastoma, Dr. Mossé did not make us feel defeated. Instead, she uplifted us and encouraged us… she brought us hope. And hope is a strong word for pediatric cancer families.

Dr. Mossé decided that Carter’s body needed a little break from all the high-dose chemos and treatment that he was getting. She prescribed a daily, low dose chemo for 3 month. And for 3 months, life became a little normal. We had to learn how to be normal, having forgotten what it was like. And for 3 months, we had a routine away from the hospital and clinic. Instead of 2-3 appointments a week, we were going justonce a week. It was the break we all needed. We needed to breathe. We needed to be a normal family. We needed time. In hindsight, these 3 months were the calm before the storm.

Unfortunately, Carter’s cancer returned and our family was thrown back into the world of relapse. With multiple relapses at this point, treatment options became very limited. Because of these limitations, we quickly ran out of options. Our doctors tried hard to come up with new ideas and anything that would work for our sweet boy as his body continued to fight. Eventually, his cancer took over and we lost our Carter on February 27, 2014.

There’s never a day that goes by that I don’t think about Dr. Mossé and her impact. She showed kindness to our family and gave us hope when we thought none was possible. We knew she was one of the best doctors for children battling neuroblastoma, so we were honored that she took the time to meet with us. With the way she comforted us, we wondered how she had time for conducting. We were grateful to learn that while she took time to see patients, she also conducted research and was trying to find new medicines and less toxic therapies. That was inspiring and made us appreciate her even more.

There is special meaning behind the words “hope” and “research” to a pediatric cancer family. To learn that research is underway while you are fighting is powerful. Research is happening every day, but it is slow and very expensive. There is so much more research that is needed for childhood cancer.  There is so much more that needs to be done. Many more donations are needed to make the research possible. Imagine the possibilities that new treatments could bring. Imagine a world where children do not die from pediatric cancer.

I know this is possible through the work of Cookies for Kids’ Cancer.  CFKC is funding research to help find a cure. This funding is powerful and exciting, and for families like mine who have lost their children, this is hopeful. More funding means knowing that one day soon, families will not have to say goodbye to their children. Families will have one more hug, one more laugh, one more smile and many more days with their precious children.

To learn more about the phase 1 clinical trial, funded in part by Cookies for Kids’ Cancer, available this month for kids just like Carter, click here. To donate to Cookies for Kids’ Cancer to fund research into new, innovative treatments for the #1 disease killer of kids in the U.S., click here. To send SuperCarter Cookies in honor of Carter, click here

(photos: Tough Cookie Carter)

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