Sam’s Fans Funds Art and Music Therapy at Cleveland Clinic Children’s
Ten-year-old Samantha McCarthy was an outgoing, enthusiastic girl, always busy playing with friends, and splashing in the pool and playing the piano at her family’s home in Columbus, Ohio. But when Sam was hospitalized for a bone marrow transplant to treat her rare blood disorder, Fanconi anemia, and confined to a hospital room for a month, she couldn’t do her favorite things.
Enter the Music Therapist
Then music therapist Brian Schreck appeared at her hospital room door, bringing musical instruments instead of medical ones. He asked Sam what she wanted to do. What a change from the usual hospital routine, where Sam had little control over her activities. They listened to music and sang together and, for the first time in weeks, her parents again saw the happy child who wasn’t defined by her illness.
Over the next year, whenever Sam was hospitalized, Brian would visit her. “He was the one person who was always welcome,” says Sam’s mother, Nikki McCarthy. “He brought Sam great joy during a difficult time. When Sam felt good, we felt good. It was a great comfort.”
Sam and Brian even recorded a song, “On and On,” by her mother’s favorite musician, Mat Kearney, as a Mother’s Day gift. Today, it is one of the family’s most cherished possessions.
Sam passed away in October 2009. She was 11 years old.
Sam was known for her generosity and caring for others. To honor her life and memory, the McCarthy family founded Sam’s Fans in 2015, a charitable foundation that supports and enhances art and music therapy programs that serve seriously ill children and their families. “We’ve seen the positive impact art and music therapy has on children and their families,” says Nikki. ”Taking care of the emotional helps heal the physical.”
Sam’s Fans has raised more than $500,000 for art and music therapy services at organizations and hospitals throughout Ohio and recently made a gift to Cleveland Clinic Children’s to fund a part-time music therapist and a part-time art therapist.
Art and Music Therapy at Cleveland Clinic
Art and music therapy is integral to patient care at Cleveland Clinic, part of its commitment to treating the whole person. Pediatric inpatient and outpatient art and music therapists focus mainly on children with chronic and life-threatening conditions, including cancer, congenital heart defects, organ failure and transplant, and blood disorders like Sam’s.
For pediatric patients, it is far more than play and fun. Therapists set goals for each session that fulfill a therapeutic purpose based on a child’s individual needs. Therapy sessions help children to express emotions that they are unable or unwilling to verbalize, such as fear, anger, sadness or confusion. They also help to change perceptions about the hospital experience.
The therapists provide valuable information to the child’s treatment team about how they are coping and any support that is needed. “Our medical professionals view the art and music therapists as important team members and consider their work to be one of the most effective way to relieve anxiety in pediatric patients,” says Tammy Shella, PhD, ATR-BC, Art Therapy Manager, Cleveland Clinic Arts & Medicine Institute. Medical studies also have validated the benefits of these adjunct therapies.
Chronic hospitalizations may interrupt a child’s development and delay their emotional and intellectual growth. Music and art therapists can help by offering opportunities for self-expression and novel sensory experiences, using innovative intervention strategies to engage pediatric patients and providing outlets for children to experience a sense of creative mastery.
And, like Sam, patients can create music and art to leave a lasting legacy for their loved ones.
A Free Service Available to All
Since 2008, Cleveland Clinic’s Arts & Medicine Institute has offered art and music therapy services at no cost to adult and pediatric patients. The program is funded entirely by charitable donations. “We would never want anyone to be denied services because they can’t afford them,” says Dr. Shella.
Demand for these popular therapies increases every year; in 2017, pediatric therapists offered 2,700 inpatient and outpatient sessions. The Sam’s Fans one-year grant also will fund supplies and professional development for therapists. “Without the support of Sam’s Fans, our therapy team wouldn’t be as large and we wouldn’t be able to serve as many children. This organization really understands the importance of our work,” says Dr. Shella.
“We’ve been so impressed by the dedication of the Cleveland Clinic art and music therapists and how well they work together,” says Nikki. “The Clinic appreciates the value of the arts in medicine and makes it a priority. And we’re delighted that Sam’s Fans can help make it all happen.”
How You Can Help
Art and music therapies are offered free of charge to Cleveland Clinic patients. You can help brighten the lives of patients and their families by supporting these programs with a gift to the Arts & Medicine Institute.
The 5 Percent Club
Claire Firrell is tall and lean, and strides confidently through the lobby of Cleveland Clinic’s Taussig Cancer Center, a slight limp barely noticeable. She’s casually dressed in workout clothes and a baseball cap with short blond hair peeking out.
Tanned and relaxed after a recent trip out West, she smiles frequently and her brilliant blue eyes sparkle when she laughs. Although she moved from London to Ohio in 1999, she still speaks with a strong British accent as she shares her story.
“It was summer 2015,” she says. “Work was great; kids were great.” Except that she was having stomach pain that wasn’t going away. Antibiotics didn’t help, a scan showed that she was constipated and other tests provided no clues. Claire knew something was very wrong. She was in such pain one day that she went to the emergency room at Cleveland Clinic. After she was admitted, a colonoscopy was performed the next morning.
“They told me they couldn’t even get a pediatric scope through because of a massive tumor,” Claire says. Hermann Kessler, MD, PhD, FACS, Section Head of Minimally Invasive Surgery in the Department of Colorectal Surgery, told her she needed surgery as soon as possible.
“I remember thinking, do I tell my kids? Do I call my parents?” she says.
She woke up after the surgery with an ostomy bag and waited for the pathology report, which showed that she had Stage 3 colon cancer. She’d need 12 rounds of chemotherapy.
By July 2016, she was finished with the chemo, the ostomy had been reversed and she was in remission. Things were looking up.
As a cancer survivor, Claire has scans every three months. “It was February 2017 and I felt a lump on my left side,” she says. At first it was thought to be scar tissue, but the next scan showed a mass in her abdomen.
The tumor was in her abdominal wall on her left side. Because the surgical margins were so close and she was still experiencing side effects from the earlier chemo, Alok Khorana, MD, her oncologist, recommended she undergo radiation therapy.
“I did daily radiation for five weeks,” Claire says. “I’d leave work every day at 2:30, get to Cleveland Clinic by 3:30 and then home.” By September, she was again in remission.
“It’s a really weird place to be when you’re out of treatment and you’re free-falling, because you don’t see things the same way you used to,” she says quietly.
She had a clear scan in December but the next one, in March 2018, showed suspicious areas.
Waiting for the scan results, she and her three kids headed to Chicago for spring break – visiting the Navy Pier, the Hancock Building – and all the while Claire just knew something was wrong. Her phone rang on Monday morning: it was Dr. Khorana. “I’m sharing a hotel room with my daughter so I go running into the bathroom and sit on the edge of the tub. I found out the cancer had gone to my lungs, lymph nodes and possibly my ovaries.”
Claire Firrell with her three children and her puppy in 2019.
She met with Dr. Khorana that Friday. They went over all the scans and discussed how the chemo would work. Then she asked him how many rounds of chemo she’d have to do.
“He said I’d be on chemo for the rest of my life.”
Isn’t it someone else’s turn?
“I needed to hear the numbers,” Claire says. “He knows this, but I have to drag it out of him. He finally says I’ve got two to five years, probably three.
“I looked at the floor and asked him who beats this? He told me he’s sorry but it’s really unlikely – there’s less than a 5 percent chance.”
Claire readily admits to being very competitive and a bit of a control freak. “All right,” she remembers telling him, “so someone has to be in that percentage. Look around here – I’m not like the average bear. Someone’s got to be in that 5 percent and that’s going to be me.”
Claire shaved off her long hair, got a port in her chest and began the chemo.
But that’s not the end of Claire’s story. In September 2018, she fell and broke her hip. She missed two rounds of chemo for the hip surgery but thankfully had just had a clear scan four days before she fell. A grueling five-month recovery recently ended, and Claire looks skyward with a wry grin and says, “Really? It’s someone else’s turn now, isn’t it?”
She’ll soon begin training for this year’s VeloSano 10-mile ride. It will be her second time participating in the annual fundraiser where 100% of the money raised supports cancer research at Cleveland Clinic. In fact, Dr. Khorana, her oncologist, has ridden every year and benefitted from funding.
“I think it’s important to stand up and be counted – I think it’s good for my kids to see me doing this, not least because even sick people can do it,” she says. “They also see how many other people are doing it, and in turn, supporting their mum. And every contribution matters, either financially or by volunteering in some way. Individually our parts might be small, but together we can absolutely accomplish great things. VeloSano is a wonderful example of that, as well as being a really fun time too.”
Finding Her Purpose
Claire now has chemo treatments every two weeks and her scans are clear. She’s eager for her hair to grow back, viewing it as the outward face of an inward problem. “That whole, ‘I’m going to fight and win that battle,’ is great but I’m not in that crazy fight mode anymore. My chemo’s been reduced and I’m feeling slightly better, and I’m able to do more things now.”
Claire is now focused on finding purpose in her life and is figuring out how and where she’ll give back to the community. She’s now on disability and spends her time with her children, friends and her new puppy. “People will say to me that I must be so happy because I don’t have cancer anymore,” she says. “Well, the reality is that I do have cancer and I will for the rest of my life. I don’t have many moments where I let myself get down − there are so many things to be grateful for.”
Claire says that in a messed up kind of way, she’s really thankful for everything that’s happened. “Everything’s OK. I just tell the kids everything’s OK. I’m going to be around and everything’s going to be OK.
“I’m in that 5 percent now,” she says. “Dr. Khorana actually told me that.”
How You Can Help
Your support of VeloSano benefits patients like Claire by funding cancer research. Scientific discoveries can lead to better outcomes and, ultimately, cures.
Sol LeWitt’s Wall Drawings Grace the Health Education Campus
When Cleveland Clinic and Case Western Reserve University’s academic partnership, the Health Education Campus, officially opens next month, unique wall drawings by the late contemporary artist Sol LeWitt will enhance the space. Read The Plain Dealer’s article about the installation process and how Cleveland Clinic’s Arts & Medicine Institute procured the art.
Cleveland Clinic Forms Center for Research Excellence in Gynecologic Cancer
Developing and delivering the care most needed by patients, now
The newly established Center for Research Excellence in Gynecologic Cancer is exceptionally positioned to change the landscape of gynecologic cancer research and care. Ofer Reizes, PhD, who holds The Laura J. Fogarty Endowed Chair for Uterine Cancer Research, and Peter Rose, MD, are leading the multidisciplinary team of researchers.