Imagine this. Your first child is born. A beautiful son. You bring him home. Your family has started.
Six months later it all falls apart. Your child has a rare form of cancer. Some 200 families in Connecticut will receive similar news each year.
He is diagnosed with Langerhans cell histiocytosis, more commonly known as LCH. It’s an orphan disease, affecting one-in-a-million infants, one-in- 200,000 older children or adults.
It’s a disease about which little is known but it causes the body to produce too many Langerhans cells, a type of white blood cell, which can result in forming tumors or damaging organs.
It is generally treated with chemotherapy so you rush to Yale New Haven Children’s Hospital for treatment and one of the things you receive upon admission is a Bag of Love from Circle of Care in Wilton.
This is what happened to Carrie Longo of Trumbull and her son Santino. Her experience with Circle of Care is why her hair salon, Studio Santicello of Stamford, is one of the the sponsors of the annual Circle of Care 5K and Fun Run. The Wilton Bulletin is the event’s media sponsor.
The fund-raiser takes place Sunday, Oct. 8, on the town green in Wilton Center. A children’s fun run starts at 8 a.m. and the USATF-certified 5K begins at 8:30. Registration is $30 for the 5K, $10 for the fun run. Register at http://bit.ly/2w5WlWo.
“It was so helpful,” Longo said of the bag. “It had pamphlets and notepads and gift certificates. You go to the hospital [in a hurry] and don’t leave for three weeks.”
Because childhood cancer is treated as an emergency, families have no time to prepare for what’s coming. The pamphlets offered her a myriad of information and the notepads were useful for taking notes as she talked to Santino’s doctors. The bags, given to every family whose child is admitted to Yale or Connecticut Children’s Medical Center — the only hospitals in Connecticut that treat pediatric cancer patients — also include other practical necessities such as meal vouchers, parking passes, phone cards, a toy or book for the child, and personal care items.
Longo did not take advantage of Circle of Care’s other services but wishes she had.
“If I wasn’t so pig-headed I should have let them help out,” she said. “They do wonderful things.” Perhaps, she said, if they had accepted some financial assistance they would not have had to sell their house to pay their son’s medical bills.
LCH has a high recurrence rate within two years, Longo said, but Santino passed the two-year mark in July. And although he goes for PET scans and blood work regularly, “He’s just your average boy now who’s started preschool,” his mother said.
Since its founding 14 years ago by Elizabeth Salguero and Dawn Ladenheim of Wilton, Circle of Care has grown tremendously, both in the services it offers and its outreach to families.
“We are continuing to grow to better meet the needs of all the children and families affected by cancer in Connecticut,” Salguero said at her Wilton home last week. She noted there are 600 children in treatment at any one time in the state.
“In the last two years we have provided leadership to create the Childhood Cancer Alliance,” she said, connecting 16 similar organizations large and small to increase collaboration, thus improving access and services to families.
For the second year in a row Circle of Care partnered with Camp Rising Sun to offer Circle the Sun Camp for the siblings of cancer patients. With 38 campers last year, this year 55 children ages 8 to 14 enjoyed six days of sleepaway camp in August.
Salguero told of two girls “sobbing on the last day” because they were aging out.
“It’s amazing the bonds they form because no one else knows the life they lead,” she said.
This year’s camp theme was “fiesta” and there were plenty of pinatas and maracas, as well as kayaking, archery, candle-making, and batiking. A farewell party with Camp Rising Sun, which caters to children with cancer, included a cookout and fireworks.
“It gives parents a week off and the kids go home tired and happy,” Salguero said.
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.
Circle of Care took in $383,321 in 2016 according to its financial report. Of that, 80% was spent on programs, 12% on fund development, and 8% on management.
What it all means
In the $4.9-billion “war on cancer,” just 4% is spent on children’s cancer research and less than 0.5% is spent on childhood cancer support.
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.
There were nearly 16,000 diagnoses in 2016 of children from infancy to 19, and in Connecticut there are an average of 200 cases of pediatric cancer diagnosed each year. Fairfield County has the highest number of incidences, followed by New Haven and Hartford counties.
The impact on families facing a pediatric cancer diagnosis is much greater than those where an adult is affected.
“Treatment is long, the treatment centers are far away, and one of the parents usually has to stop working,” Salguero said. Most of the parents are young, have two or three children and limited resources.
“School schedules and activities are already overwhelming,” she said. Add to that the needs of a sick child “and it becomes really overwhelming.”
While the medical care available is excellent, “the needs are emotional, practical and financial support,” she said.
More families need more help for longer periods of time because treatment times for children are longer.
“Because kids grow and their cells multiply so rapidly, they need a longer time for remission to become a cure,” Salguero said.
Her son was a cancer patient who achieved remission five weeks after diagnosis “but he needed 132 weeks of chemo after that,” she said.
Salguero estimates Circle of Care has helped 2,000 families over the years and in order to keep helping they need to expand.
Plans include hiring a regional director in the Hartford area to better serve the needs of families there.
“We want to be closer to where the treatment centers are,” Salguero said, adding Wilton is relatively close to New Haven.
There are 20 full-time volunteers who work six days a week at Yale New Haven but there are none in Hartford. The plan is that when a director is in place they can start recruiting volunteers who will work in the inpatient and outpatient clinics playing with children, providing respite and comfort.
“Families can be in the hospital six to seven hours for treatment,” Salguero said. “Sometimes it can just be really boring. Everyone needs a fresh face.
“It’s all an important part of healing. A child who gets comfort is going to heal better.”
Here in Wilton, Circle of Care has been run from Salguero’s dining room table and with volunteers working remotely. The organization is now looking for affordable office space in town.
Northwestern Mutual is the title sponsor for the Oct. 8 5K. Lead sponsors are Chase, Advanced Radiology, Bankwell, the Christopher Stroup Family, and Longo’s Studio Santicello.
“I would recommend them a million times over,” Longo said. “There is no reason why a family shouldn’t reach out to Circle of Care. They’re all incredible. I consider them my family.”