“I just had this tremendous need to do something. When your child is sick, you really can’t do anything but what you’re told to do. You really are not in control. And I had this overwhelming desire to do something concrete, so we started talking about what we could do,” says Liz Salguero, one of the three founders of Circle of Care, the nonprofit organization based out of her Wilton home that supports families with a child with cancer all over Connecticut and Westchester County.
From the time a child is diagnosed through recovery, Circle of Care works tirelessly to help families financially, emotionally, and with any other needs that the doctors cannot help with.
On Sunday, Oct. 8, hundreds of people will run in support of Circle of Care in its 3rd Annual Circle of Care 5K, sponsored by Northwestern Mutual, through Wilton Center and Merwin Meadows. This community-wide event draws runners from all over Connecticut and out of state, with many forming teams through work and friends. All funds support Circle of Care’s programs that directly impact children with cancer here CT.
Salguero knows first hand what that impact can mean. Her now 18-year-old son, Carlos, was only two-and-a-half when he was diagnosed with cancer, and remembers the day of diagnosis like it was yesterday. It day started off with a typical doctor’s check-up in Guilford.
“It was two o’clock in the afternoon, my 7- and 8-year-old girls were about to get off the Cider Mill bus, and we were being told that we had to go to the hospital and couldn’t go home. We were at the hospital for two weeks, and that first night, my husband, Jeff, finally went home around 8:30 p.m. to go see the girls, and I looked at the nurse and I said, ‘Do you have a toothbrush, or anything?’ Because I obviously wasn’t going anywhere. She came back with this tiny little toothbrush with a one squeeze-tube of toothpaste in one of those horrible little pink plastic buckets they give you in the hospital. And I was like, ‘Wow, this is really real.’ It felt very, very isolating, and very, very frightening that this is where we were,” she recalls.
Circle of Care’s mission is to ensure families have a better experience.
While Salguero’s son was in treatment, she realized she could make a real difference.
“I met a lot of other women and families during that time, and there were just so many obvious gaps in the support services, things that we could do as moms to make it easier for the next round of families that had to go through this. There is no cause. It is no one’s fault. So if you can’t prevent it, and cure rates are now at 88%, what could we do to help? Well, what we could do was be supportive to the next round of parents and help them by sharing the information with them on things that we learned while we were in treatment.”
From there, Salguero and fellow Wilton mom Dawn Ladenheim, whose son, Dan, is also a cancer survivor, established Circle of Care.
The first thing they did was create the Diagnosis Care Package, which they call a “Bag of Love” that families receive upon diagnosis. The bag includes everything a family could need to get through that first night.
“It has all the toiletries that you would want or need it to have, which is very comforting. It’s odd how much a toothbrush could mean to you. The comments that we get from parents, still, 14 years later is, ‘You knew what we needed when we didn’t.’ We also put in a fleece, a beautiful colored blanket for the child so that you have something that’s soft, and colorful that feels like home and is not so sterile. And it’s warm because it’s cold in hospitals,” says Salguero.
The bag has everything from meal vouchers to parking passes and also includes a book called The Purple Pages that Circle of Care authored, which is a directory of all the resources that a family whose child has been diagnosed with cancer would need. They have since grown the program throughout the Northeast, and Baskets of Love are in all the hospitals that serve pediatric cancer patients from New York City to Boston.
Circle of Care has expanded beyond that first night bag, to assist with one of the most important things they can do–help families with finances.
“People find themselves in financial crisis very quickly. Copays are incredibly high these days, insurance covers less and less. The number one thing that causes bankruptcy in this country is health care. When you’re trying to care for two or three or even one other child, it just compounds. And you’ve got travel and babysitting and food costs. There are all kinds of things that are non-medical. Imagine you’re going to spend the day in Guilford three days a week. That’s a lot of gas, and you have to consider who’s packing your lunch, who’s picking up your other kids after school, and it just all adds up. So our financial assistance program is the most important thing that we do. We keep people in their homes, we make sure that their mortgage is paid, their electric bills are paid, we make car payments for people so they don’t lose their cars so they can drive to treatment,” Salguero explains.
Another way that Circle of Care supports families throughout the process is through their peer mentor program, matching newly-diagnosed families with another family whose child had the same disease at the same age so that they can talk to them about what to expect, and what you do about friends and going back to school and everything in between.
With the 5K approaching, Salguero says there are lots of ways to get involved, either through that event or more long-term.
“Contact us! We have a lot of different volunteering opportunities. You can volunteer at an event, you can volunteer to do fundraising for us, you can volunteer to be on a committee. We have committees that do resource developing and marketing and we have a finance committee that oversees how we spend our money, we have a nominating committee. It’s all through fundraising and donations. The hardest part about running a nonprofit is that you don’t have a product to sell; I can’t sell you a widget and make money and give that back to somebody else. Everything that we raise goes back to our families but also goes back to our staff and the costs of running our company.”
In fact, she says, it’s a full time job to raise the money in order to support the families, which is, of course their mission–while other organizations raise money for research and treatment, Circle of Care exists to make families’ experiences with cancer as easy as possible.
“I think one of the things that we struggle with the most is that most childhood cancer foundations support research, but we don’t because there are a lot of other people who are doing that very, very well. People think that if they give their money to research and to a cure, they think they have done what they need to do in this area in terms of philanthropy, and that’s very, very important. But what some people don’t understand is how it’s equally important how these families and children get through this,” Salguero says, as one who speaks from experience. “All we’re trying to do at Circle of Care is help these families maintain the integrity of who they were before this happened to them.”
Circle of Care 5K Details
Where: Town Green at Wilton Center
When: Sunday, Oct. 8, 8 a.m. Fun Run (for ages 6 and under), 8:30 a.m. 5K (open to all); Packet pick-up the night before in Wilton
How Much: $30 per person, $10 for Fun Run
What: USATF Certified race; modest cash prizes awarded; prizes for Best Team Spirit and Best Fundraiser
For more information and to register online, visit the Circle of Care 5K website.