A Chautauqua support group
By Mike Kasarda
Riley Burton, sunny and full of giggles, sits on her bed in the Children’s Hospital of Philadelphia and flaunts one of her well-known grins. She takes a break from singing “Let it Go” from Disney’s “Frozen” to chat with pediatric oncologist Tracey Jubelirer. The pair talks about dolls and playing dress-up while the doctors run their tests and check her white blood cell count. Afterward, Riley colors a butterfly with a purple crayon, relaxed.
Riley’s family said this has been a common theme for months now.
Her parents, Heather and Brad Burton, have prepared her for the routine treatment she is about to receive.
When the doctors access her port, a special catheter where the chemotherapy is administered, she clutches her parents’ hands and squeezes her eyes shut.
This part hurts a little for Riley.
She does not cry, though. This is simply something that has to be done.
Through the procedure, Riley whispers to herself for encouragement. Over and over, she repeats her personal mantra:
“Riley can do it. Riley can do it.”
Jubelirer’s patient just turned 5 years old. She adores anything the color purple. Her favorite meal is a hotdog with no ketchup or mustard — Hebrew National, to be specific. Like any 5-year-old girl, she loves to play make-believe, tell jokes and listen to all sorts of stories.
“She’s such an amazing little girl,” Heather said. “She’s so sharp and wise for her age and has a great sense of humor. And her smile just lights up a room.”
Her grandmother, Donna Zellers, agreed.
“Riley is a bright, social, blond-haired, blue-eyed little girl,” she said. “And she has always gone through life with giggles.”
Riley also happens to have Wilms’ tumor. According to the American Cancer Society, Wilms’ is a cancer of the kidneys that afflicts roughly 500 kids in the United States annually and accounts for about 5 percent of all child cancer cases. Riley is special, though. Her cancer is bilateral, meaning it affects both of her kidneys, which occurs in 5 to 10 percent of Wilms’ cases.
Five-year-old Riley Burton stands with father Brad, older sister Alex, and mother Heather.
Before her diagnosis, she woke up every day living “in the moment and for the moment,” her grandmother said. Since that fateful doctor visit in January, Riley’s life was forever changed, but her outlook and disposition never faltered once.
“I have to remind myself often that it’s not easy for her,” Donna said. “She’s been poked and prodded, and I forget that because she’s always smiling. She may go through a full day of treatments and come out of the clinic laughing.”
Although Riley may make it look easy, this has been the most difficult ordeal her family has ever experienced.
“When Heather told us the diagnosis, it was like getting punched in the gut, or like lightning hit you,” said Bob Zellers, Riley’s grandfather. “It just brought you to your knees.”
During the arduous eight-month ordeal of checkups, chemotherapy and surgeries, the Zellerses and Burtons relied heavily on their sturdy familial bonds for support.
“My family is so extremely close,” Heather said. “I would never have thought that this is something I would be able to handle, but my family is my strength. Riley is my strength.”
Riley’s grandparents happened to be in town when they learned of her cancer, and Heather’s siblings, Jeff and Heidi, immediately rushed to the Burtons’ home in Pennsylvania when they heard the news.
“My brother came over the next day after the diagnosis,” Heather said. “I didn’t want to talk at that point. I couldn’t. It wasn’t about talking; it was about all of us being together. Their presence was just so comforting.”
Without hesitation, Heidi took a four-month leave from work, and Riley’s grandparents decided to stay as well. Together with Brad, they assumed control of the household and devoted themselves to Riley, cleaning every surface and cooking every meal when not playing make-believe or telling stories to Riley and her older sister Alex, 8.
“My parents and sister didn’t have to think twice about staying,” Heather said. “I completely relinquished control of the house to focus on Riley. I vowed to myself to be her warrior.”
In the long days and months ahead, Heather would spend hours on the Internet and on the phone with doctors when she wasn’t by her daughter’s side.
“Heather became such an expert on Wilms’ that she could probably teach a class,” Bob said. “She’s been an accountant for 11 years, so she’s a very detailed person.”
Heather pored over articles and medical journals, absorbing every ounce of information she could find.
“I had to learn everything I possibly could about the disease so I could talk to the doctors on their level,” Heather said. “I had to be her advocate because I was the only one who could focus on her morning, noon and night.”
Over the next few months, Riley became a regular at Children’s Hospital, which has been rated as one of the top hospitals in the country for pediatric cancer care. At CHOP, Riley became a part of a national study with nearly 20 physicians supervising her treatment and progress.
“It was so comforting to know that Riley’s health was being monitored by some of the top experts with this type of cancer,” Heather said. “There are no egos at CHOP. They are just an amazing team of doctors.”
Jubelirer serves on that team as one of Riley’s primary oncologists.
“In the beginning, every family is completely overwhelmed,” Jubelirer said. “Medicine is a science, but it’s also an art. There are a lot of decisions along the way that are scary and uncertain.”
The family initially believed Riley’s cancer was mild enough that her kidneys would be healthy after a few rounds of chemotherapy. They soon learned that both of Riley’s kidneys had multiple tumors, the largest being on her left. Riley’s doctors decided she would need multiple doses of chemotherapy, radiation and later surgery.
“Those five months of chemotherapy were such a long, long grind,” Bob said. “There were a lot of family dynamics. We could get a good report, then there would be something that would send us right back down. Some days, her white blood cell count would be 15,000. Others it would [be] 110. Things like that just set the mood for the day.”
Riley has “definitely had some crossroads,” Jubelirer said.
“But she had such great support from her family and from this special community that rallied around the family,” she said.
When Riley’s situation grew worse and her family felt helpless, one particular community took on their burden: Chautauqua.
‘Still a part of Chautauqua’
The Zellerses first invested in Chautauqua when Heather was only 3 years old. She attended Boys’ and Girls’ Club with her brother and sister, trained as a CIT, and then worked as a waterfront counselor. She watched her siblings grow up through Club, met her most loyal friends there, got married in Chautauqua and now shares this place with her daughters.
“It has always been the one constant for me,” Heather said. “It’s really an extension of family. I don’t know anyone else outside Chautauqua that has that type of bond with others.”
Since her Club days, the annual trip to Chautauqua has been the focal point of Heather’s summer.
“This was my first summer not being able to come to Chautauqua in close to four years,” Heather said. “I was so focused on Riley that I didn’t think about it much at first. But when I started seeing pictures, it became really difficult for me.”
Riley Burton was diagnosed with Wilms’ tumor early this year. Her supporters, “Team Riley,” have worked together to raise funds in support of Children’s Hospital of Philadelphia.
Alex was looking forward to competing in the Water Olympics and perform in Air Band, while Riley couldn’t wait to start her last year at Children’s School. Heather looked forward to the warm nights by the lake and the nightly get-togethers on Chautauqua porches. She wanted to return to a life without weekly doctor visits, sleepless nights and the constant, nagging fear of more bad news.
Without a word, Heather’s friends knew what she needed. They started visiting every weekend, driving 14 hours between western New York and Philadelphia to bring Chautauqua to the Burtons. These weekly trips grew to pilgrimage-like proportions, summed up most poignantly by one of Heather’s most faithful friends, Ann Ayers-Ritacco.
“Ann told me that they were going to take the porch party on the road,” Heather said. “It reaffirmed the fact that we weren’t alone and that we were still a part of Chautauqua this summer — even though we couldn’t be there. It meant so incredibly much to me.”
During the first months following Riley’s diagnosis, the Burtons had little contact with their Chautauqua family or anyone outside their immediate household. Heather’s sole focus was her daughter’s well-being, and her friends respected that, but that did not prevent them from showing their support in other ways.
“The UPS truck probably stopped at the house every day for five or six weeks,” Bob Zellers said. “People sent games, activities, cookies — everything you could think of to keep Riley entertained. And they always sent doubles so Alex didn’t feel left out.”
It was not long before friends from South Carolina, Colorado, Maryland and every corner of the country started showing up to see Riley. They came from every state, but they had one thing in common: a connection to Chautauqua. It was then that Heather realized this community was more than just a summer getaway. She found in Chautauqua a support group of compassionate friends.
“One thing Ann said that always stuck with [me] is that Chautauquans are so loyal to each other,” Heather said. “I always knew that. But that loyalty was taken to a new level with the sincere outpouring of support we received.”
Ann Ritacco can speak credibly about this complete devotion and dependability among Chautauquans because she experienced it firsthand with her husband, Mark. They too endured the sickness of a child and looked to the same groups of friends for help in their greatest time of need.
Gratitude and simplicity
In 1982, Mark Ritacco’s father drove to Jamestown for a job. At the time, he had also been searching for a summer getaway for his parents that was close to their home in Rochester, New York, and so decided to explore the grounds. Paul Ritacco took a few steps inside the main gate, made a call on a payphone, and told his wife that Chautauqua was the place where they would happily spend the rest of their summers.
From that moment on, Chautauqua became a part of the Ritaccos’ tradition. Mark joined the ranks of Club in Group 5 where he met Heather Burton and many more lifelong friends. Later, he would work as counselor during the summer months, and when he met his future wife during freshman year of college, he suggested she spend her summer in Chautauqua also.
“I got to be friends with everybody from Club, and not just because I was someone’s girlfriend,” Ann said. “Now, I’ve been a Chautauquan for 23 years.”
In those 23 years together, Mark and Ann have learned, just as the Burtons have, that Chautauquan relationships exceed the traditional bounds of friendship. They resemble ties to family, but in some ways are even stronger because they are built around a shared set of expectations and values.
“There’s something deeper and richer about the friendships that are formed here than anywhere else in the world,” Ann said. “I think a major part of that was the experiences we shared and continue to share at Club. I’ve never had friends that are as all-in as those at Chautauqua.”
Like the Zellerses, Mark and Ann usually commit themselves to a full season at the Institution and seldom miss a summer in Chautauqua. Even during the three years they lived in Europe, they still found a way to make it back in town for the porch parties. Ironically, their first year without a trip to Chautauqua was one of the happiest of their lives.
Mark and Ann started their family with the birth of Timothy on July 15, 2003. According to Mark and Ann, Timothy was a happy, cheerful child when he was born. He maintained a clever composure that suggested he was wise well beyond his years.
“He was such a giggler,” Ann said. “One of my favorite videos is of Timmy on New Year’s Eve in Chautauqua just giggling hilariously.”
In June 2004, though, Timothy was diagnosed with an illness known as Sandhoff disease. Clinically indistinguishable from Tay-Sachs disease, Sandhoff is a genetic metabolic disorder that manifests in the body like ALS — Lou Gehrig’s disease.
“There will be less than 10 kids in the world diagnosed with Sandhoff disease this year,” Mark said. “Because Tay-Sachs is more well known, it’s one of about six diseases tested for in newborn screenings, but it varies with different states.”
Like Riley’s, Timothy’s disease required quick, tough decisions from his parents. One of those decisions revolved around an experimental form of treatment for their child. It involved the transplantation of stem cells that would not cure Timothy of his condition, but would instead arrest the development of the disease. According to Ann, Timothy was the first child in the world to ever receive such a transplant for Sandhoff.
“In this type of situation, you’re a new parent, and, all of a sudden, you have to make these extremely critical medical decisions for your child,” Ann said. “You just feel totally unprepared and helpless.”
Timothy’s transplant was ultimately successful, but it compromised his immunity. One hundred days after his surgery, Timothy developed an infection that, despite all his resiliency, he could not fight. On Nov. 20, 2004, Mark and Ann lost their son to this infection.
“Timothy had such a wonderful spirit,” Mark said. “We think he always understood what his destiny was even before we did. He had a sense of wisdom and calm about him as if he were telling us everything would be OK. We learned infinitely more lessons from this guy than the other way around.”
Mark and Ann made their emotional return to Chautauqua in the summer of 2005. In the months leading up to their Chautauquan homecoming, Mark and Ann struggled to find meaning in the aftermath of such an ordeal.
During the winter before that 2005 season, some of Mark and Ann’s friends decided to honor Timothy and support research for Sandhoff disease with a basketball tournament and silent auction called Hoops for Hope. The tournament transpired on the courts near Boys’ and Girls’ Club, where Mark and Ann’s relationship with their Chautauqua friends originated.
“They wanted to hold an event near Club because that community of friends was the heart of it all,” Mark said. “It was an incredible gesture and certainly such a tribute to Timothy. Since then it has really taken on a life of its own.”
It was on this day, surrounded by their friends, that Mark and Ann found the significance they were seeking in Timothy’s death.
Rachael Le Goubin | Staff Photographer
The 10th anniversary of the Ritacco kickball tournament began with a balloon launch July 5. The tournament is held in memory of the Ritaccos’ late son, Timothy.
“A friend had told me that there will be a moment when the clouds will open momentarily, and we will see that we are still going to be able to have a life,” Ann said. “For me, it was that day. I was pregnant with my second son at the time, and I finally saw a path forward.”
This year, the Ritaccos celebrated the ninth installment of Timothy’s tournament. Although the event revolves around kickball rather than basketball and proceeds will help build an Institution playground in Timothy’s honor, its original purpose remains intact. The morning of July 5, over 100 Clubbers congregated on Sharpe Field to kick a ball around, honor Timothy’s legacy and, most importantly, celebrate friendships.
“It’s nice, as a parent, just to hear Timothy’s name,” Ann said. “There is a hole in your heart when you lose a child that never goes away. And it shouldn’t. My job isn’t to fill that hole but to grow my heart enough to balance it out. Chautauqua does that for me.”
This particular year, though, the Ritaccos were happy to share the stage with some of their dearest friends. A horde of pink shirts led by Bob and Donna Zellers flocked throughout the field, honoring their absent hero with the title “Team Riley.”
“Ann and Mark have been such a source of strength during this entire process,” Heather Burton said. “When Riley was diagnosed, they were the two first people I thought of for help. They included our family in something so important and special to them, and I couldn’t be more thankful.”
Following the momentum of the kickball tournament, Team Riley has a set a course to raise funds for Wilms’ research at CHOP.
“I feel a personal obligation to CHOP for everything they’ve done for us,” Heather said. “We want to pay it forward and give back to them.”
On multiple Sunday mornings, Club kids and their parents sold lemonade, duct-tape wallets, painted rocks, and purple bracelets with the slogan “We are in this together.” Heather hoped the lemonade stands would raise $1,000 over the season. So far, Team Riley has collected $1,587 with more coming in. Between the lemonade stands, T-shirt sales, jewelry shows and direct contributions, $3,300 has been raised in Riley’s honor.
“We’ve seen the impact that research has made, so we feel so strongly about raising awareness and money,” Heather said. “Fifty years ago, Wilms’ had a 10 percent survival rate. Now it’s close to 90 percent.”
After countless chemotherapy sessions, multiple radiation treatments and one heart-wrenching surgery, Riley is a part of that percentile. Although she will have to receive MRI scans every three months for the next five years, Riley’s prognosis is outstanding. Her family will make their triumphant return to Chautauqua in 2015, and she can continue to live the life of a normal 5-year-old girl.
“We have made it over the hump,” Donna said. “The end is in sight.”
Although the Zellerses and Burtons will not be quick to forget the long, arduous ordeal, they recognize the valuable impact this experience has had on their lives.
“I think life, in many ways, is out of your control what is going to happen,” Heather said. “It’s so much within your control to decide how to react to it.”
For some, that reaction means an appreciation of the moment.
“There is no tomorrow. There is no yesterday. It’s right here, right now,” Donna said.
For others, that response means recognition of the surrounding community and its enduring value.
“The Chautauqua community was so essential in supporting all of us through this ordeal,” Bob said. “This experience taught me true patience and showed me that Chautauquans are a special group of human beings.”
For Heather, this attitude means a sense of gratitude for simplicity.
“This experience gave us a completely new perspective on life,” she said. “Our lives are simpler now, and we learned to appreciate the small things. I wake up every morning thinking I am the luckiest mom in the world.”
Above all, Riley’s attitude in the face of “unavoidable suffering” is to maintain a buoyant self-assurance. “Riley is learning to swim this summer, and she’s learning to do backflips off her father’s body into the pool,” Donna said. “She’s able to do that because she’s learned ‘Riley can do it.’ ”
On Aug. 19, Riley’s doctors will access her chemotherapy port for the last time and she will squeeze her parents’ hands with all the confidence of a backflip. Her family is ecstatic to reach this milestone and move forward with their lives with new meaning and conviction.
Riley can do it. The Zellerses can do it. The Burtons can do it. Even the Ritaccos can do it.
Chautauqua can do it.