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Parenting Through Childhood Cancer: A Story Of Strength, Love, And Devotion

Dec 7, 2017 9:05:00 AM

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When Jeff Snyder and his wife, Kristy had their first child, Kennedy, they were like every other first-time parents — musing about who their little girl would be and entertaining grand ideas about how they would raise her and the parenting challenges that would lie ahead. Yet nobody could have prepared the couple for the daunting challenges to come as they soon discovered the serious illness their beloved Kennedy must face.

Shortly after their second child, Nate, was born, Kennedy started experiencing severe neck pain and began walking with her shoulders hunched. After countless doctors appointments, it was recommended she have an MRI performed at Yale-New Haven Hospital. “We weren’t expecting anything serious.” Jeff admitted. The leading theory was that Kennedy had been sleeping wrong. 

Where Chance for Life got started

Jeff was working in New York City that day when he received a phone call from his wife that would forever change the course of their lives. The MRI revealed a large, high-grade, malignant tumor called Astrocytoma, and it was wrapped around Kennedy’s spinal cord. Her prognosis wasn’t good. “I was in complete and utter shock.” Jeff remembered. “I couldn’t even talk to my wife. I just said ‘I’ll be right there’ and rushed to my car. The traffic was so bad that day, I sat in the car for about two and a half hours — completely alone with my thoughts.” During that time, Jeff described going back and forth between shock, disbelief, anger and hurt. Then he remembered — Kristy was going to need him to be strong.

Kennedy’s doctors recommended immediate surgery to remove as much of the tumor as possible. The first question Jeff asked was “how significant is this procedure?” He’ll never forget the way the surgeon looked at him and said, “It doesn't get more significant than this.” “When I started to realize the gravity of the situation…when I started picturing this little, tiny two-year-old child being operated on…I lost it. I was terrified and I started bawling. My plan to be Kristy’s rock went right out the window.”

Only 95% of the tumor was successfully removed and Kennedy was temporarily paralyzed from the neck down. She sported an eight-inch incision that stretched from the top of her spine downward, but worst of all — her fight was far from over. She was prescribed more than an year of chemotherapy and extensive physical therapy.

Chance for Life Charity to fight childhood cancer

“Our worlds crumbled for the rst 6 months.” Je admitted. “We were depressed and felt really helpless. When your child is born you have this moment of clarity where you exist with purpose and that purpose is to provide and care for your child. When something like this happens, all that gets completely stripped away.” During chemo, Kennedy’s hair fell out. She was constantly vomiting, lost weight and had multiple hospital stays wherein, her blood cells would crash and transfusions were needed to bring her back. Jeff recalled a particularly difficult episode when Kennedy was taking oral chemo. “She would immediately vomit and all the chemo would end up on the floor. I remember saying to her, ‘Kennedy, you have to keep this down. You could die!”

Conversations like this were heart-wrenching to have with a little girl, but Jeff and Kristy never sugar-coated Kennedy’s condition with either of their children. Before Kennedy could even articulate what was happening to her, she pointed to her cancer, which she nicknamed “donk”, in the same way a child first learns to identify their ears, nose or eyes.

After 18 months of chemotherapy, Kennedy was cancer-free and the Snyders celebrated, believing their nightmare had finally ended. “Three months later she had another MRI and the tumor was back to the same size.” In many cases, news like this begins to break down a marriage. But Jeff and Kristy remained a united front, almost always in agreement about how to handle Kennedy’s care.

“Having a shared outlook on how we were going to treat this and tackle it tremendously helped us.” He said. “If we had different opinions, there’s no way we could have made it through what came next.”

Some specialists wanted to try radiation therapy but after doing their own research on the topic, Jeff and Kristy had major concerns. “Once you radiate a portion of the spine, it stops growing.” Explained Jeff. “Everything we read told us the first seven years of spinal growth are critical.” Stunting the growth of Kennedy’s spine at such a young age would mean a host of other physical ailments down the road, like developing a painful humped back.

“Kristy and I decided we had to think about her long-term health. We had to treat every decision as though she was going to be with us forever.” Jeff said. In reality, the couple wasn’t sure Kennedy would see her 5th birthday. They opted for a different type of chemotherapy, instead, which was successful at stabilizing the tumor, but did not cure Kennedy, who still lives with Astrocytoma today. Kennedy’s cancer and subsequent treatment has caused muscle atrophy below her wrist and drop foot, which requires that she wear leg braces. But she doesn’t let these ailments define her.

Those who meet Kennedy repeatedly describe her as a sweet, beautiful, cheerful, bubbly person that exudes positivity. When asked how Jeff and Kristy managed to raise such an inspiring young woman, Jeff indicated it was actually Kennedy who raised them.

From the beginning, Jeff and Kristy took two very different approaches to coping with Kennedy’s cancer. Kirsty turned to religion and began volunteering her time to help those less fortunate.

Jeff became determined to raise funds for a cure, always with hope it will lead to a cancer-free future for his daughter. With help from Alex’s Lemonade Stand, one of the most well structured and well-intentioned charities supporting childhood cancer, Jeff started cordFUND, where proceeds go directly to pediatric spinal cord cancer.

The different ways they coped with Kennedy’s condition challenged their relationship at first, but they realized it was a natural part of the process. “We didn’t need to have the same path.” Jeff explained. “I respected what she was doing and she respected what I was doing. Both camps were important.” Though different in their coping strategies, Jeff and Kristy’s parenting is congruent.

“Early on, Kristy and I made a conscious effort to taste life. We are spontaneous. We are active. We make the most of our time together and we have some really amazing kids because of it!” He said. “We wouldn’t have normally parented this way, but we feel we’re better parents because of this.” One of the ways the Snyders “taste life” is by going to Disney World — a lot. Jeff and Kristy take Kennedy and Nate as many as five times a year, usually right before an MRI appointment. It’s their way of escaping from the stress and anxiety of the appointment. They also wanted to do everything possible to give Kennedy a normal childhood, which meant sending her to regular school.

“The community we’re in is phenomenal.” Jeff said. “She hasn't been bullied or picked on or teased…some kids asked her early on about her leg braces and she just sat down, took one off and handed it over.” He said.

According to Jeff, Kennedy is like any other teenager. She’s an avid reader, she competes in swimming and she aspires to work at Disney World someday — “…probably because we took her there so many times!” Jeff laughed.


Chance For Life Fundraiser

Brad Nierenberg, Jeff’s best friend and Kennedy’s godfather, felt helpless as he stood by and watched people he loved go through such hardships. As CEO of RedPeg, an innovative experiential marketing agency, his specialty is creating opportunities that connect people to ideas. It made perfect sense that he use this talent to help generate support for cordFUND.

Chance for Life Charity Event

What began as a small fund-raising event to show the Snyder family they weren’t alone is known today as Kennedy’s “Chance for Life” gala, a major annual Texas Hold’em tournament with a $10,000 grand prizes ticket to the World Series of Poker. The event features a celebrity chef-lead wine-tasting and food-pairing event, and an after-party that includes a live band and DJ. Hundreds of people attend, including local heroes like NBC4 News Anchors Jim Vance and Angie Goff, celebrities like Brian Jarosinski from the hit TV show, The Bachelorette, and athletes like Brian Mitchel and Shawn Springs, former NFL players.

All food, drink, service and prizes are donated for the event and 100-percent of the proceeds go to cordFUND for pediatric spinal 

Chance for Life Poker Event cancer research. This year, Chance for Life raised $230,000, adding to the collective $1.25 million raised since its first-annual event 10 years ago.

“The way Jeff and Kristy have lead a meaningful life for their daughter and their son is just short of a miracle.” Said Brad. “Their tenacity for getting everything they can out of life is incredible…an example for all of us.”

Brad describes a humbling scene at the close of the event each year wherein, the entire Snyder family is on the floor, dancing and laughing while Kennedy gets on stage with the band and sings her own rendition of Sweet Caroline. The crowd cheers and sings along and for that moment in time — there is no cancer, there is only love, support and hope.

“The anxiety doesn't ever really disappear.” Explained Jeff. “The voice in the back of my head I hate and I try to push down as much as I can is the “what if”. What if she passes? How will I be able to move on?” When asked if he had advice for other parents struggling through childhood cancer, Jeff felt it wasn’t his place. “Everybody has a different way of coping with it and everybody has to find their own path.” he said.

His only recommendation is for parents to take time to research all their options. Early on, Jeff and Kristy felt their options weren’t clear and because of that — they felt rushed in their decisions. There is always fear about whether they made the right decisions but Jeff also knows he and Kristy have done and continue to do their absolute best to provide a beautiful life for their kids.

“I can’t live life looking in the rear view mirror.” He said in closing. “Kennedy is incredible. She is wise beyond her years and I give her so much credit for the maturity she’s had dealing with this. She never feels sorry for herself. She’s strong. She’s determined. She’s happy.” Chance for Life Charity Poker Tournament

Inspired by the can-do attitude of his 14-year-old daughter, Kennedy, who has been fighting cancer since age two with unwavering hope, determination and positivity; Jeff Snyder opened an experiential marketing agency named, Inspira Marketing Group in 2008. The company’s mission is to connect people with stories, ideas and causes, and to find a cure for pediatric spinal cord cancer. To support this endeavor, a portion of Inspira Marketing Goup’s profits are donated to fund progressive research.