Circle of Care: Embracing families facing childhood cancer
Life just isn’t the same after a cancer diagnosis. And when it’s a child who is the patient, the ripples of sadness and anxiety extend that much further.
Liz Salguero and Dawn Ladenheim know what it means to be the parent of a child with cancer. More than a decade ago, Salguero’s three-year-old son Carlos and Ladenheim’s 10-year-old son Dan were diagnosed with cancer.
The women met through a support group at a time when there were few online resources, no smartphones, and no social media. Taking what they learned from their own experiences, in 2003 they founded Circle of Care to make the road a little less arduous for the families who would follow them.
What began as a personal outreach effort has grown to an organization with an army of volunteers that offers emotional and financial support as well as a wealth of information for affected families. To help continue its work — which reaches families throughout the state — it is presenting the Circle of Care 5K and Kids Fun Run on Saturday, Oct. 1, at Merwin Meadows on Lovers Lane.
The race on a USATF-certified course begins at 8 a.m. Registration is $30 per person, $10 for the fun run. Modest cash prizes will be awarded as well as prizes for best team spirit and best fund-raiser. To form a team and register, visit thecircleofcare.org.
One of the race coordinators is Kacky Theoharides, whose daughter Lyla, a student at Cider Mill, was diagnosed with stage 4 neuroblastoma in March 2013 and immediately began treatment at Yale, later transferring to Memorial Sloan Kettering Cancer Center in New York City.
“Within a few days, Circle of Care reached out to us with emotional support,” Theoharides told The Bulletin. “We had no idea what we were doing, what doctors to go to, what questions to ask. Liz and I spoke on the phone for quite a while.
“It was great and she’d check in on our progress,” Theoharides continued. “It was nice to have that emotional support for me and guidance, what questions to ask about treatment, what side effects there might be from medications. What also brought me comfort, is they were from Wilton. It is just a super organization.”
Lyla, her mother reported, has been cancer free for two years, is “totally normal and immersed in school.”
At any one time, there are about 500 children being treated for cancer in Connecticut. Circle of Care’s signature is the Bag of Love, given to each family upon admission to Yale New Haven Children's Hospital or Connecticut Children's Medical Center in Hartford, the two hospitals in Connecticut that treat pediatric cancer patients.
Because admission is usually so sudden, each bag includes practical items such as a toothbrush, toothpaste, deodorant, and phone charger, to the comforting such as a blanket and age-appropriate toy. It also includes a journal, a pen, and the organization’s directory of resources for parents, known as the Purple Pages.
Ladenheim recalled in the early days she would share what she knew with parents of newly diagnosed children. “I found that comforting. That we were able to share information with them, things we experienced, the look on their faces was really rewarding.”
For example, back then some parents did not know they could have food delivered to the hospital. They didn’t know how to help their child who had difficulty swallowing adult-sized pills.
Because information was “decentralized,” Ladenheim said, they created a parent network. “We’ve created a lot to help parents connect with one another. Or to connect with us,” she said. “I do think there’s a lot of value in talking with other people. Learning from others’ experiences is helpful.”
As technology has changed and people have become more sophisticated about seeking out information, Circle of Care has evolved, too.
One of the greatest needs for families, Salguero said, is financial support, which is why Circle of Care is holding the 5K.
Speaking at her Wilton home last week, she said when a child is diagnosed with cancer, “one parent has to stop working,” and it’s not going to be the parent with the best insurance. “That’s what we’re here for.”
Jeff Kimball, Circle of Care’s executive director and only paid staff member, said 50% of the families they help are below the poverty level, “but 50% are above the poverty level.” Even with insurance, one family was faced with $6,000 in co-pays in six weeks. At this point, Circle of Care can only give $2,000 to families in need.
Deborah Schwartz of Stamford experienced that firsthand when her five-year-old son Eli was diagnosed with leukemia in February 2013. In an unfortunate coincidence, Eli’s father lost his job the week before. Asking for financial help was something she had never had to do.
“These people really give from their hearts,” she said. “It kept us from falling even further.”
There is another aspect to Circle of Care’s financial assistance.
“Perhaps the most difficult for us are the funerals,” Kimball said, because the sad fact is not every child survives.
“Kids don’t have insurance policies,” he said, “and funeral homes will not negotiate. Everyone has their cultural and religious needs.
“A funeral should not bankrupt a family. We feel strongly it’s one of the things we should do,” he said. Circle of Care can offer a family up to $2,000 toward the cost of burying their child.
Drawing families together
This summer, Eli Schwartz attended Camp Rising Sun for children with cancer. His sister Charlie benefited from a new Circle of Care initiative.
She was one of 38 children who went to a sibling camp Circle of Care offered at Camp Jewell in Colebrook in partnership with Camp Rising Sun. It was a place where attention could be showered on a family’s children who are not in treatment.
As a result of seeing how her family has been helped, Charlie is putting together a fundraiser for Circle of Care as her bat mitzvah project, her mother said.
Seeking more opportunities to help affected families make connections and just have a good time, Circle of Care organized a family fun day at the Shelton Sports Center earlier this year.
“It was an opportunity to get away from cancer,” Salguero said. “That is as healing as medication in some ways. Kids see other kids [like them] and it’s OK. Parents can talk to each other. We are looking to grow these opportunities.”
Saying thank you
In the midst of 10-year-old Oliver Tchakarov’s treatment for mediastenal B-cell lymphoma earlier this year, he and his mother Katarina made the trip from their New Canaan home to Hartford, where Circle of Care’s photo exhibition Life Within the Journey, Beyond Diagnosis, a Portrait of What Endures, was on display at the Capitol. The show, a collection of photos taken of children and family members during treatment, toured the state and was at Wilton Library in April. Katarina and Oliver went there specifically to thank Salguero for all Circle of Care had done for their family.
When Oliver was diagnosed last November, “it took us by storm,” his mother said, but Circle of Care was there with its Bag of Love and continuing support.
“Circle of Care stayed in touch. It was just wonderful during treatment,” Tchakarov said.
Oliver did not have an easy time of it. During six months of treatment he underwent week-long chemo sessions and survived sepsis. But this summer he was well enough to attend Camp Rising Sun and his brother Simon went to sibling camp. The family also went to the family fun day, and Tchakarov said maintaining as much of a normal life as possible was important.
“You don’t know if your kid is going to make it. … Tomorrow is not given,” she said. “It’s not important if the dishes are not clean. What’s most important is that you are on the carpet playing games.”
Despite all the programs offered, Liz Salguero’s husband, Jeff, said, “it’s not easy to describe what we do. The support is very meaningful and profound What I find is, the impact of our work is really sustaining … it’s a direct, personal impact.”
None of their work, Liz Salguero said, could be done without volunteers and the support of the community, particularly here.
“We are volunteer-driven and we always will be,” she said. “Wilton is part of our lifeblood and our DNA.”
Volunteers run their programs, events, fund-raising, and marketing. Volunteering with the organization “is for people who want to have an impact. Volunteers work on every aspect of our programs.”
For example, there are 10 Art from the Heart teams across the state run by volunteers. (See related story on page 3C.)
During his first year of treatment, Eli Schwartz saw a team of high school students give his room a complete makeover.
Whether it is a Bag of Love, a photo shoot, camp, family fun day, financial help or a room makeover, it is the personal contact that is at the heart of Circle of Care.
Of Liz Salguero, Deborah Schwartz said, “she knows not only my son’s journey but my journey. I am fortunate to have incredible family and friends, but to have people who have gone through it give you support helps."