As the need grows, so does Circle of Care
When Issy Kwei finished sixth grade at Middlebrook School in June, neither she nor her parents had any inkling she would be an honorary chair at Circle of Care’s 5K run to prevent childhood cancer on Sept. 23.
A lot can happen very quickly in the world of pediatric cancer — and Circle of Care is just as quick to respond.
The organization that provides emotional, practical, and financial support to families faced with their child being diagnosed with cancer will have its annual fund-raising 5K race and fun run on Sunday morning, Sept. 23, in recognition of this month being Childhood Cancer Awareness month. The fun run begins at 8, with the 5K at 8:30 in Wilton Center. There are cash prizes for the top three men and women finishers. Registration information is available at https://bit.ly/2ouxxoV.
While many families meet up with a Circle of Care volunteer shortly after diagnosis, that was not the case with Issy’s family. Her mother, Jeena Choi, said while her daughter had surgery on July 4, they did not spread the word until about 10 days later.
“It was all very unexpected and an emergency situation,” Choi said. This is typical of pediatric cancers, according to Circle of Care co-founder Liz Salguero, with families rushing to a hospital and then not leaving for weeks. Issy was having trouble swallowing and after visits to a pulmonologist and ENT specialist for what they thought was a breathing or tonsil issue, the family learned there was a mass on her brain stem. Issy’s pediatrician sent them to Yale’s emergency department.
“Many people contacted me and asked me to contact Circle of Care,” Choi told The Bulletin. “I said, ‘I don’t have time, I’m living out of bags in the hospital.’”
After three or four weeks, she finally made contact. “I didn’t know what to expect. I had support from family, friends, church, the community, clubs Issy ws in — it was very overwhelming,” Choi said. “But when we did connect, I said ‘I really don’t know what to ask of you.’” She was hoping Issy could come home in a few weeks.
Issy went into the hospital a healthy girl, but after surgery she couldn’t move. “I didn’t know how to arrange her room,” Choi said, so she asked Salguero how to prepare her room, living space and bathroom.
“That was on a Friday. On Sunday she brought a team of PT (physical therapy) and OT (occupational therapy) people, took measurements and made practical and wonderful suggestions,” Choi said.
The next thing that happened was probably the most meaningful for Issy. An equestrian, Issy missed her leased horse Zippy, who is stabled at the Wilton Riding Club. Zippy’s owner, trainer and the hospital staff all worked to have Zippy visit Issy at the Hospital for Special Care in New Britain where she went for rehab. .
“When Jeff heard about it, he was so touched he said ‘tell me when it happens, I’ll come tape it for you.’”
About a week later, on a sweltering day in July, a van with Zippy arrived in New Britian and Issy came out to be with him.
“It was a total, total surprise for Issy,” Choi said, and Salguero spent hours photographing the two and then put together a video for them. “It was very, very special, extra special because the day after, she got her first chemo treatment and was not able to see Zippy again.”
When Issy was admitted to Yale for chemo treatments, Circle of Care’s signature Bag of Love was delivered with a fleece blanket for Issy, personal essentials, and a binder of reference material for Choi and her husband Frank Kwei.
“Liz offered huge practical information,” Choi said including introducing her to “a few cancer moms” who have been very helpful. One found an agency that will provide Issy with PT, OT and speech therapy at home. When Salguero found out Issy was losing her hair, “Liz sent her a really soft hat, which Issy loved.”
When Issy is done with chemo, she will undergo radiation to attempt to remove any remaining tumor cells, thus preventing any regrowth.
Choi said before all of this, she was unaware of Circle of Care. That’s why the organization is holding its fourth race — to raise awareness for its efforts and also to raise awareness of cancer that affects hundreds of families across Connecticut. There are about 600 children in treatment at any one time.
While more than 85% of children with cancer will survive five years or more, the number of cases diagnosed continues to climb with the incidence of pediatric cancer up 29% over the past 40 years. Only a tiny percentage of the billions of dollars directed to the “war on cancer” is spent on childhood cancer support.
Salguero estimates Circle of Care has helped 2,000 families since its founding 15 years ago, and in order to keep helping it’s needed to expand. Earlier this year, the organization moved from the Salgueros’ home into space in one of the historic barns at Lambert Corner on Route 7.
At the start of the year, Gina Longo became the new executive director, Tammi Small was hired as program and event director, and six new members joined the board.
Circle of Care works closely and collaborates with social workers and child life specialists at Yale New Haven Children’s Hospital/Smilow Cancer Center and Connecticut Children’s Medical Center to deliver its programs.
The organization’s program for siblings, Camp Circle the Sun, continues to grow, with more than 53 campers enjoying a Western hoedown for a week in August.
Circle of Care’s other programs and services include:
- Art from the Heart — which transforms a child’s room at home into a “dream room.”
- Lifeline — a resource for newly diagnosed families, which includes a telephone mentor program and a closed social media site for families.
- Lifeline Emergency Fund — which helps alleviate some of the financial difficulties families face. This made up 63% of the organization’s program expenses last year.
In addition to the Sep. 23 5K, Circle of Care will host its Duende Gala at l’escale on Sept. 15, a spinraiser on Nov. 4 at JoyRide in Wilton, Ridgefield and Darien, and its Sip and Shop holiday boutique.
Jeena Choi is thankful for the help her family has received from Circle of Care. “For Frank and I, our takeaway is when things happen to you that you think only happen to other people, you don’t have to go through it alone. People really do want to help you.”