How to Bring Peace and Normalcy to Children With Cancer

When a child is diagnosed with cancer, the world instantly shrinks down to hospital visits, complex treatment plans, and relentless anxiety. For parents, the fight consumes everything, often leaving the entire family unit, including siblings and the parents' own wellbeing, on the periphery. Where does one find room for normalcy, joy, and community? 

Elena Jeannotte, executive director of Special Love, an organization that strives to build a community of support for children with cancer and their families through summer camps, family programs, financial assistance scholarships, and in-hospital support, to name a few.

"We really try to sort of wrap around the entire family," Jeannotte said. "We also have a camp just for siblings. We're very proud of all of that, and we strive to just create a place for these families to continue to make family memories during times when those are not always the thing that is first in their mind. Their first priority is taking care of their child who's undergoing cancer treatment."

In an interview with CURE, Jeannotte discussed the foundation of Special Love, the challenges families experience with a childhood cancer diagnosis, and a reflection on their annual holiday event.

CURE: How was Special Love founded?

Jeannotte: The organization has been around for 42 years, and we were started by a family who lost their daughter, Julie, to lymphoma in 1978. That was back in the day when many, many childhood cancers, were treated at the National Cancer Institute or the National Institute of Health. Julie's dad had heard about a camp for sick kids somewhere else in the U.S. for another disease state. He said, "I'd like to do that for kids with cancer, so he talked to the head of the NCI at the time, who was his daughter's doctor, and a partnership formed between our organization and the NCI, who has provided medical care for our camp for 42 years.

That was the beginning of Special Love.

We are still able to take very sick kids who are even in treatment to summer camp for a week; we've taken children on hospice. We are able to give them that traditional summer camp experience and let them be around other peers who understand what they're going through, but in a very safe manner. They're seen by doctors and monitored three times a day to make sure that they're completely safe.

That was the beginning of our organization, and then the founders saw the need was beyond the child with cancer; it was not just the patient. We saw how the siblings especially suffer, because the parents, as they must, put all of their attention into their child with cancer.

We do a lot of support for parents and well with what they're going through, like stress on the marriage, or single parents who are dealing with this. We expanded to do Parents Weekend, with 100 to 150 parents who came. We put them up at a hotel for a weekend for both educational programming and [activities] like woodworking, massages, and yoga, to give them a chance to relax. Then, we expanded into financial support, which is so critical.

So many of our families have to go down to one parent working while the child is in treatment because they're at the hospital so much.

One can only imagine the comfort, relief, and perhaps the peace, Special Love can provide for the entire family.

It is wonderful when people come to events. At [our holiday weekend], we just had these two young girls who were meeting for their first time. Their siblings had both come to our camps, met and became friends and stayed friends afterwards, and then they realized, "Oh, you have a sister with cancer too," and it just normalizes it to them when they're living in this world where it's so abnormal. They met in person the first time at our holiday party, they were hugging, and then the parents become friends.

It's about bringing people together and building this community for families so that they don't feel isolated, and they know they have a place. When they come to a Special Love event, they're going to be surrounded by other people who understand what they're going through. They're going to be met with like love and acceptance and people who aren't going to look at them any differently because of what they're going through.

Could you discuss what takes place at your annual holiday event?

[On December 7], we held our annual holiday party and we brought about 190 of our Special Love family members to The Wharf in Washington DC, and we do everything from face painters, balloon artists, a visit from Santa, and we had a partnership with a couple other nonprofits. One of them, Project Outrun, provided customizable Nikes to every child. There were all sorts of gifts for the kids, an opportunity for the parents to reconnect before the end of the year, and for everybody to have a little bit of fun.

Were there any family encounters that stood out to you at the event?

There was a mom there with her two-year-old daughter who has a brain tumor, and the look on her face when we said that kids were getting shoes [was priceless]. Her daughter is a little bit of a fashionista, even though she's only two, and the mom was just so grateful to receive that gift. She had a teenage son too who was there, and he's going to get to design his own shoes. That was one that really stood out.

We see a lot of children with brain tumors, which is a hard impact for the family and for the child when there's so much cognitive development going on at that age. To be able to bring joy to a family who's going through something like that, just to do something that seems so simple, really makes a difference. We had a mom [in attendance] who said, "A lot of groups give [ill children] presents, but Special Love gives us a community." That just really stuck with me, because when you're going through a dark time in life, you may not be able to ask for help or for a community, but these sort of opportunities that we provide through Special Love make that possible for families."

Do you have advice or guidance for families that are going through this type of hardship, especially around the holidays, which makes it even that much more difficult?

Lean on your social worker at the hospital and any navigators at the hospital to find out about groups like Special Love. We really support families in Washington DC, Virginia, Maryland, and West Virginia. However, there are other groups who do this throughout the country; that is community support that you get and you don't even realize you need it, because you're just so in the moment and it's so stressful.

To be around other people who understand what your day to day is like, and you can get advice from people who have been through it and who are going through it is totally invaluable. Finding a place where you can get help for the siblings of your child is also very important. They have to be very strong. Our siblings are some of the most incredible people I've ever met in my life. They are so empathetic and so mature for their age because of what they've been through. Finding a group where they can be outside of the shadow of what's going on at home is important and a great gift to give your children.

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