January 2019 Featured Interview |
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Interview with
Cindy Campbell
Co-founder of the Ty Louis Campbell Foundation
Cindy and Ty
About Cindy:
Cindy Campbell is a blogger and childhood cancer advocate who has been working as a nonprofit professional to benefit childhood cancer research since 2012.
Along with her husband Louis, she founded the Ty Louis Campbell (TLC) Foundation after the loss of their son Ty and partnered with other like-minded nonprofits to collectively fund innovative research projects including St. Baldricks, Solving Kids’ Cancer and the Children’s Brain Tumor Project at Weill Cornell Medicine.
Cindy was so impressed with the strategic approach at the Weill Cornell Medicine Children’s Brain Tumor Project that she recently joined the team to make a bigger impact as the Program Director in support of lab initiatives.
Cindy was previously a marketing director at PricewaterhouseCoopers and she was employed at various PR agencies such as Weber Shandwick and Cohn and Wolfe earlier in her career.
Cindy lives in Pawling, NY with her husband, Lou, and nine-year old son, Gavin, and two-year-old son, Bodhi.
Cindy Campbell is a blogger and childhood cancer advocate who has been working as a nonprofit professional to benefit childhood cancer research since 2012.
Along with her husband Louis, she founded the Ty Louis Campbell (TLC) Foundation after the loss of their son Ty and partnered with other like-minded nonprofits to collectively fund innovative research projects including St. Baldricks, Solving Kids’ Cancer and the Children’s Brain Tumor Project at Weill Cornell Medicine.
Cindy was so impressed with the strategic approach at the Weill Cornell Medicine Children’s Brain Tumor Project that she recently joined the team to make a bigger impact as the Program Director in support of lab initiatives.
Cindy was previously a marketing director at PricewaterhouseCoopers and she was employed at various PR agencies such as Weber Shandwick and Cohn and Wolfe earlier in her career.
Cindy lives in Pawling, NY with her husband, Lou, and nine-year old son, Gavin, and two-year-old son, Bodhi.
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About the Ty Louis Campbell (TLC) Foundation:
In August 2010, Ty Louis Campbell was just two years and ten months old when a mass was found at the base of his skull, pressing against his brainstem. Soon after, he was diagnosed with a rhabdoid tumor, which is a very rare and aggressive cancer specific to pediatrics. He passed away at home in his parents’ arms on October 17, 2012. The Ty Louis Campbell (TLC) Foundation was created in Ty’s honor to raise awareness for pediatric cancer through the story of his courageous battle. The foundation funds innovative research and clinical trials specifically geared toward the treatment of the most aggressive childhood cancers. Goals include improving long-term survival rates and minimizing side effects for children. |
Ty: August 2010
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Myrna Beth Haskell, executive editor, spoke with Cindy about the foundation’s focus, the inspiration behind some of its programs and events, and its goals for the future.
I’ve heard that your son was called SuperTy because he was a little fighter. Could you tell me about your son’s joyful spirit and how this helped you to support him during his illness?
It’s not just about Ty. All these kids have this incredible spirit…they’re sick or disabled with their illness, but they have that innocence of youth. Their perspective of cancer and treatment is different from an adult’s perspective. It’s not that they don’t cry from needles or being sick, but it’s so easy to redirect them. I made a candy house out of tongue depressors and medical tape with Ty once. He got a kick out of it! Engaging in these ‘little kid’ activities with them brings joy. The monikers we give these kids [such as SuperTy] empowers them. It makes them proud of who they are and how they’re handling their situation.
I’ve heard that your son was called SuperTy because he was a little fighter. Could you tell me about your son’s joyful spirit and how this helped you to support him during his illness?
It’s not just about Ty. All these kids have this incredible spirit…they’re sick or disabled with their illness, but they have that innocence of youth. Their perspective of cancer and treatment is different from an adult’s perspective. It’s not that they don’t cry from needles or being sick, but it’s so easy to redirect them. I made a candy house out of tongue depressors and medical tape with Ty once. He got a kick out of it! Engaging in these ‘little kid’ activities with them brings joy. The monikers we give these kids [such as SuperTy] empowers them. It makes them proud of who they are and how they’re handling their situation.
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It is simply amazing that you were able to turn such extreme grief into something positive by helping so many other families. Could you tell me how this has sustained you?
I don’t think I would have been able to process the grief at all without this incredible community of support. I needed a distraction, to work like crazy and to keep really busy – it became my crutch. I was compelled to do something meaningful, so I took all of that grief and pain and let the energy consume me in another way. I was working for PricewaterhouseCoopers, but I came to realize that I was a different person after going through what I did with my son. I didn’t recognize myself, and I just couldn’t pick up where I had left off. I also wanted to make sure Ty was remembered, and I wanted to do something to help the next child. The research failed us tremendously! With the exception of leukemia, childhood cancer research is lumped into one general fund. This is different from adult cancer research and funding which is specific to particular cancers. The funding for pediatric cancers is minimal from pharmaceutical companies, too, because there’s no profit to be made with such a small population. It’s also scary PR…giving experimental drugs to kids. It’s so unfortunate, but we need these families of sick kids to fundraise in order to fill the gap. It seems so unfair that they are missing out on time with their children, but the parents are the ones making it happen. I am really proud of the parent community. |
Cindy, Ty, Louis and Gavin Campbell
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The foundation funds innovative research and clinical trials specifically geared toward the treatment of the most aggressive childhood cancers. Are there any specific pediatric cancers the foundation has focused on?
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Our focus is on pediatric brain tumors (also neuroblastoma and sarcoma). Malignant brain tumors in children are the most fatal of pediatric cancers because it’s so hard to get the drugs to the brain.
We were willing to try just about anything. We had found this trial in Belgium, and they accepted Ty. We got our passports and were ready to go, but then we found out that Sloan Kettering couldn’t send the required tumor tissues to create the vaccine. It wasn’t a standard procedure to freeze the tumor tissue! Can you believe it? It wasn’t standard procedure! Since 2012, things have improved. One of the first things we did was to support a fellowship program at Weill Cornell Medicine. [See information about Cornell Weill’s Children’s Brain Tumor Project fellowship.] Today, there are several trials for AT/RT (Atypical teratoid/rhabdoid tumor).* |
Ty Getting a Seizure Test Done
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Another goal of the foundation is to minimize side effects for children diagnosed with the deadliest cancers. I read that Ty was unable to walk or play with his toys, even when he was cancer free, because of how badly the treatment harmed his little body. What have been the best strides in minimizing side effects - such an important goal considering the ages of the patients and the fact that these kids are robbed of a carefree childhood.
The focus is to reduce chemotherapy and radiation use in children. The long-term effects are very dangerous. We would never tell parents to stay away from traditional options that are scientifically proven to cure in many cases, but we do hope that other therapies can soon be used more often because they’re not toxic like chemotherapy (such as immunotherapy** or the use of more targeted therapeutic drugs that don’t kill the healthy cells).
TLC funds research geared toward alternative therapeutic delivery systems and novel therapies that eliminate minimal residual disease left behind following surgical resection. See website. |
The foundation has various programs and events. Tell me about the significance of the phrase “Always jump in muddy puddles” and the Muddy Puddles Project and its “Mess Fest” event.
These kids just want to be kids. They miss out on so much. Ty was very compromised by his treatments. He told me that when he got better, he wanted to jump in a muddy puddle. It was a huge goal for him, but he never got there.
On Facebook, I would see parents complaining about homework, and I was noticing how kids were so overscheduled. It’s a different way of parenting today. Parents need to remember to just have fun with their kids while they are so carefree. I wanted to find a way for everyone to take a step back and to appreciate these years with their kids. The Muddy Puddles Project is a celebration of childhood, a vehicle to remind parents to stop sweating the small stuff. The annual "Mess Fest" event is part of this project.
"Mess Fest" is a huge, annual event hosted by the Ty Louis Campbell Foundation and Kiwi Country Day Camp. There is a range of fun family activities – from splatter paint to pie throwing (and of course, muddy puddles). The sixth annual Muddy Puddles “Mess Fest” was held in August 2018 in Carmel, NY.
On Facebook, I would see parents complaining about homework, and I was noticing how kids were so overscheduled. It’s a different way of parenting today. Parents need to remember to just have fun with their kids while they are so carefree. I wanted to find a way for everyone to take a step back and to appreciate these years with their kids. The Muddy Puddles Project is a celebration of childhood, a vehicle to remind parents to stop sweating the small stuff. The annual "Mess Fest" event is part of this project.
"Mess Fest" is a huge, annual event hosted by the Ty Louis Campbell Foundation and Kiwi Country Day Camp. There is a range of fun family activities – from splatter paint to pie throwing (and of course, muddy puddles). The sixth annual Muddy Puddles “Mess Fest” was held in August 2018 in Carmel, NY.
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Mess Fest Photo Credits: Jane Haslam Photography
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Could you tell me a bit about the inspiration behind the “Blue Lollipop Project?”
Kids love blue lollipops because they turn their tongues blue. Ty discovered them after his first surgery. His taste buds were compromised and blue lollipops became his thing. He always asked for the blue ones, and he always had blue lips because of this. A nurse got really scared once thinking he was losing oxygen. [Cindy starts to laugh.] I had to tell her it was a blue lollipop that caused his lips to turn blue! My neighbor Riley, who was nine-years-old at the time, founded this particular project because she loved blue lollipops, too, and she understood why children with cancer would find them fun and comforting. For every dollar donated, she coordinates the delivery of a blue lollipop to a child with cancer. She’s now sixteen, and she’s more involved than ever. |
Ty with his brother, Gavin, and his Blue Lips
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How has the foundation grown since its inception?
It has grown a lot in the sense of strategy. I’ve learned a lot about the research landscape. Our strategy is much more defined. We got lucky with our initial choices because we weren’t as informed in the beginning. Now, I always know where the next investment should be. Our visibility has grown since the foundation’s inception. We were originally a local community organization, and now we’re national. But we still need to grow our funding.
It has grown a lot in the sense of strategy. I’ve learned a lot about the research landscape. Our strategy is much more defined. We got lucky with our initial choices because we weren’t as informed in the beginning. Now, I always know where the next investment should be. Our visibility has grown since the foundation’s inception. We were originally a local community organization, and now we’re national. But we still need to grow our funding.
Long Beach Vacation (June 2012)
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What are the future goals of the foundation?
We’ve raised 1.6 million dollars so far. There is no doubt in my mind that I’d like to get our funding up to one million dollars per year. You know, life starts to take over again. Fatigue sets in. Once the years go by, it’s hard to stay focused and motivated. A nonprofit has to stay steady, and this is one of the hard parts…keeping that energy going. We ask everyone that we interview to tell us where they find sanctuary. Or perhaps I should ask you “where’s your muddy puddle?” Hmmmm…where’s my muddy puddle? I have an office outside my home. It’s in a blue house on a hill. Blue was Ty’s favorite color. The house is filled with lady bugs, and they’re considered to be good luck. I have Ty’s photo everywhere. I also have drawings all around the place from other children I’ve met. It’s where I feel connected to Ty. It’s my happy place. |
*AT/RT is a rare and fast-growing cancerous tumor of the brain and spinal cord. About half of these tumors begin in the cerebellum or brain stem. The disease is most often seen in children age 3 or younger, but it can also occur in older children and adults. New therapy is being investigated in clinical trials. The goal is to increase the cure rates and improve survival in very young children and in children who have disease that cannot be surgically removed. (St. Jude’s Children’s Research Hospital)
**Immunotherapy is the treatment of disease by inducing, enhancing or suppressing an immune response. Cancer immunotherapy attempts to stimulate the immune system to reject or destroy tumors. The efficacy of immunotherapy is enhanced by nearly 30 percent when combined with conventional cancer treatments. (Boston Children’s Cancer and Blood Disorders Center)
**Immunotherapy is the treatment of disease by inducing, enhancing or suppressing an immune response. Cancer immunotherapy attempts to stimulate the immune system to reject or destroy tumors. The efficacy of immunotherapy is enhanced by nearly 30 percent when combined with conventional cancer treatments. (Boston Children’s Cancer and Blood Disorders Center)
