Story by Lana Sweeten-Shults
Photos by David Kadlubowski
GCU News Bureau
Peek into 7-year-old Chandler resident Gwyn Satterlee’s room and you just might see Groot, stuffed animal version, nicely nestled in a corner.
The sum of the treelike hero’s vocabulary in the “Guardians of the Galaxy” films: “I am GROOT.”
But this is Gwyn’s story: “I am GWYN.”
She scoots on her scooter, tongue sticking out.
She loves, loves, LOVES animals and wants to be a veterinarian.
She looks up to her amazing big sister, Paige.
Is all about arts and crafts.
Dives head first into the foam-filled pit at her gymnastics studio and smiles. Ear to ear.
Her parents, Leslie and Galen, laugh. EVERY time.
She’s now just tall enough to reach the sliding door lock to let out the family’s HUGE, lovable dog, a Vizsla named Zoe.
She often heads to the backyard fence to chirp, “Hi!” to the neighborhood kids next door who poke their heads over the fence. They tend to do that … a lot.
And 2½ years ago, she launched her war against cancer.
The storm that followed
It was June 2016 when Gwyn’s mom, Leslie, noticed that her tornado of sunshine -- this year’s Children’s Cancer Network Run to Fight Children’s Cancer race starter -- wasn’t quite herself.
“Gwyn seemed tired. She had a fever. But we didn’t necessarily suspect anything at the time,” said Leslie, a family law attorney who is staunchly protective of her daughters’ privacy. “She woke up one morning and had red dots on her neck, so at that point we decided to take her to the pediatrician.”
That – alongside a typical playground injury – was when things started to take a turn. Gwyn had gotten a knock on the forehead while playing softball.
“We thought, let’s wait and see if it gets better,” said Gwyn’s dad, Galen, who, like Leslie, works as an attorney. “Three or four weeks later, and it was not getting better. … There was just a big knot."
But it would turn out to be more than just a big knot and more than simple red dots on her neck. The doctor told them, "You need to go over to Chandler Regional (Medical Center) right now and have them do blood work.”
Galen said, at the time, “I didn’t know any better,” and wasn’t prepared for the soul-crushing devastation that would follow.
He and Gwyn had barely gotten home when the pediatrician called: Urgently, she instructed, “You need to come back. Immediately.”
That's when she said the words that made their hearts crumble: “We think Gwyn may have leukemia.”
The family sped to Phoenix Children’s Hospital, where Gwyn was admitted right then “to what we have since referred to as Hotel 7,” Galen said – the seventh floor of the hospital. The oncology floor.
The red dots on Gwyn’s neck, they would find out, were petechiae, a sign of low platelets. It was their reluctant introduction to acute lymphoblastic leukemia, a type of cancer that affects the blood.
Leukemia is the most common form of cancer in children and teens, according to the American Cancer Society; one in three cancer cases in children and teens is leukemia. Doctors categorized Gwyn as high risk because of her elevated white blood cell count.
The next month was a mind-numbing whirlwind of doctors and medicine and IVs and … the world of pediatric cancer.
“There was no time to think. Just GO,” Galen said. “We got to the hospital and the doctor came in with a binder that was like ‘Moby Dick’ and said, ‘This is what you need to know.’”
Her hospital stays totaled about 50 days and nights, she faced 23 painful spinal taps, and she lost her beautiful blond hair.
When she was admitted to PCH that first time, Galen said, “She had surgery the next day to place a port, which is where she gets all her medicine.
“I guess that’s where the journey began.”
Continuing the race
It’s a journey that will continue for the Satterlee family March 16 on the Grand Canyon University campus, where Gwyn will take her place as Run to Fight Children’s Cancer race starter. Organizers choose one pediatric cancer survivor to hold the honorary title and sound the air horn to begin the race.
“Gwyn was chosen race starter for her resilience, even at her young age,” said CCN Executive Director Patti Luttrell, once a faculty member in GCU’s College of Nursing and Health Care Professions and whose son, Jeff, has waged a more than two-decades-long campaign against cancer, successfully winning that fight seven times. “Her resilience is remarkable – and her ability to be positive in the face of scary things.”
Approximately 2,300 participants converged at GCU for Run to Fight 2018. The annual event includes a 10K race, 5K run/walk and the quarter-mile Cancer Survivors Walk, when cape-donning cancer survivors, commingling during past races with Disney princesses and superheroes, get time to shine and bring home the theme, “Celebrating Our Heroes.”
The event, presented by host sponsor GCU and grand presenting sponsor Pono Construction, raises funds for CCN and Phoenix Children’s Hospital.
According to the National Pediatric Cancer Foundation, only 4 percent of federal government cancer research funding goes to battle pediatric cancer even though it’s the No. 1 cause of death by disease among children. One in 285 children will be diagnosed with cancer, which computes to 43 per day. Despite those numbers, since 1980 fewer than 10 drugs have been developed for use in children with cancer.
Since it started, the race has raised more than $600,000 in the fight against pediatric cancer.
System of support
It was when the Satterlees were waiting for one of Gwyn’s spinal taps that they met the Hyduchaks. Jace Hyduchak, who is the same age as Gwyn, received treatment at Phoenix Children's East Valley Specialty and Urgent Care Center in Mesa, same as the Satterlees.
“We all get there at 6:30 or 7 in the morning. We’re the first ones,” Galen said. “You kind of know if anyone’s there that early that they’re there for the same reason. They were kind enough to give us a little forecast about what lies on the horizon. … It’s hard for people that aren’t going through this to relate. They try to empathize, but the only people that can really understand the day-to-day grind of treatment is those who have gone through it with their own children.”
Jace served as Run to Fight race starter in 2017, and the Hyduchaks mentioned the race and CCN to the Satterlees.
As it turns out, the Satterlees had another connection to the event. Lindsey Gray, mom of 2018 race starter Lily Gray, went to college with Leslie.
“By word of mouth we found out that her daughter was diagnosed,” Leslie said. “We hadn’t spoken since college, so we kind of reconnected after that.”
The Satterlees say they have been lucky – Gwyn's body responded to treatment as it was supposed to, and she never had to stay in intensive care or go through major, unexpected surgeries.
“She hit remission after the 30 days, so she didn’t get bumped up into the even higher (risk) category,” Leslie said, though doctors reluctantly use the word “remission" and look for patients to reach that important five years cancer-free mark. Her treatment ended Oct. 20, but she returns to the doctor for monthly blood tests, the frequency of which decreases as time goes on.
Throughout it all, “Gwyn has handled it pretty darn well,” Galen said of his youngest daughter, whose happy personality has allowed her to cope. Not that she talks about what she has gone through. Rarely will she bring it up.
“I think she was the one in the family that dealt best with it, more so than us and her older sister. She always just seemed to go with the flow,” Leslie said.
Advocating for siblings
The experience has turned Leslie into an advocate, not just for pediatric cancer patients, but for siblings of those with childhood cancer.
You’ll often find Gwyn and her sister, Paige, beyond gymnastics and communing with their dog, Zoe, listening to music and watching baking show competitions on TV.
When Leslie asked what kind of resources there might be for siblings, she got the same answer, “I don’t know.”
“Either I’m missing out on a whole segment of resources or it doesn’t exist," she said. "It’s just an area that hasn’t really gotten a lot of attention.”
When she speaks of Paige, Leslie’s eyes start to well with tears – the first time they do so in an hourlong conversation. Even though cancer eats away at a family's energy and happiness, she doesn’t want Paige to ever be lost in the wake that is cancer.
“We’re understanding more about the need for that emotional support and that circle of resources with (Phoenix Children’s Hospital mental health therapist) Jennifer Hamblin,” said Leslie, who also advocates for improving the family programs offered at Phoenix Children's East Valley clinic. No Child Life representative is on staff at the clinic, and the activities featured at the main hospital are not available at the clinic.
For two consecutive years, a Satterlee family friend who owns a bar has hosted a night during which part of the proceeds benefit CCN. Those proceeds funded an activity cart stocked with arts, crafts, games and toys, which make those 8- and 9-hour appointments at the clinic a little better.
“Our big push has been with Patti to see if there was anything CCN could do to bring some of that to the East Valley clinic,” Leslie said.
CCN continues to serve more than 750 families annually. The organization distributes $75,000 in food and gas cards every year and awards at least $30,000 in scholarships.
“We had our first ever CCN day camp in the summer,” Luttrell said. “It was really exciting and fun. Five days in a row children were together, and on the last day they were exchanging phone numbers.”
The organization also started introducing STEM programs – science, technology, engineering and math – for children who have missed long periods of school because of cancer.
Luttrell said what she has loved about the Satterlees is how positive and focused they have been: “They stick together as a family to rise to the challenge. I LOVE that about them.”
This may be Gwyn’s story -- “I am GWYN” – but it’s one she shares with her sister Paige. With her mom Leslie. With her dad Galen.
With her fellow pediatric cancer survivors.
It’s their story.
RUN TO FIGHT FACTS
What: Run to Fight Children’s Cancer 2019
When: 7 a.m. Saturday, March 16. The 10K starts at 7 a.m., 5K at 7:45 a.m. and the quarter-mile Cancer Survivors Walk at 9 a.m. The post-race festival will feature a vendor expo, arts and crafts, and other activities.
Where: GCU campus
Cost: $45 through Jan. 31 for the 10K and $50 afterward. The cost for the 5K is $35 through Jan. 31. The Cancer Survivors Walk registration is free and open to cancer survivors of all ages.
Benefits: Children’s Cancer Network and Phoenix Children’s Hospital
Host sponsor: GCU
Grand presenting sponsor: Pono Construction
Register: www.runtofightcancer.com. Online registration is open until midnight March 15. Race-day registration will be available between 5:30 a.m. and the start of each run.
Information: Patti Luttrell, 480-398-1564 or [email protected]
Contact GCU senior writer Lana Sweeten-Shults at [email protected] or at 602-639-7901.
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