Joy is Everywhere: Spencer’s Story

“Joy is a big part of what we learned. No matter what you’re going through, if you look for it, you can find Joy.” – JANALYN

When Janalyn’s son, Spencer, was diagnosed with neuroblastoma just before his 13th birthday, she saw firsthand how powerful and healing Joy can be. During his first prolonged hospital stay, Spencer shut down. He refused every comfort, interaction, and activity offered—until CCA’s trained MyMusicRx® musicians, Cameron and Jean, walked through the door.

“I remember when we first met Cameron, he immediately lightened the atmosphere. It seems like such a small thing, but when you’re in the hospital and you’re bored, or scared, or in pain, or all three at once, the smallest thing can change how you feel. And for us and for Spencer, music was one of those things. Music brought a lightheartedness and Joy we really didn’t see any other way.” — JANALYN

In-hospital bedside music medicine with Cameron and Jean.

After Spencer’s first music interaction, the walls he’d put up began to come down, and he started saying “yes” more often—first to continued, in-hospital music lessons with Cameron, then to being matched with an adult mentor through CCA’s Chemo Pal® Mentor Program.

“At first, I wasn’t sure I wanted to do Chemo Pal, but it was really great. Having [Chemo Pal mentor] Shawn around makes things less boring, especially at the hospital. In the TV show Psych, the main character is named Shawn Spencer. He’s Shawn, I’m Spencer…you see? We’re a great match.” — SPENCER

Match day 2019: Spencer and Chemo Pal mentor, Shawn at Doernbecher Children’s Hospital

“At the beginning, all of this was super new and scary for Spencer. He was really closed off. He wouldn’t smile, laugh, talk, or show any emotion at all. When Shawn came into the picture, he was someone just for Spencer, unrelated to the stress of what was going on. That helped break through Spencer’s hard shell and get him to a point where he could express happiness, joy, and laughter again. I’m really impressed with Shawn and his persistence; he made Spencer a priority, and he was genuinely interested in getting to know the rest of our family as well.” — JANALYN

 

Creating Joy During a Pandemic

For young patients like Spencer, Joy isn’t just a feeling—it’s a welcome relief from the stress, pain, and loneliness they feel during extended hospitalizations, and a way to bolster their emotional and mental wellness. During Spencer’s first nine months of treatment, he found Joy in telling jokes and learning new instruments with Cameron, board games and weekly in-person visits with Shawn, and spending time with family and friends both in and out of the hospital.

Since Spencer’s brothers aren’t able to visit him in the hospital due to visitor restrictions, they talk frequently on FaceTime.

Then, COVID-19 hit the U.S., isolating families like Spencer’s even more from support services and each other, and making it that much more critical for CCA-served families to continue to access the healing power of JoyRx. For Spencer, that means music lessons with Cameron via Zoom or FaceTime, trading board games for video games with Shawn, making friends with other patients during hospital stays, and video chatting with his brothers from his hospital bed.

Shawn visits Spencer via FaceTime during a physical-distanced donut delivery.

“Back when Cameron was visiting the hospital, he tried to visit as many patients as he could, so he could only spend so much time with each patient. At home, he doesn’t have those limits, so I get to spend a lot more time talking to him. He’s really funny, and really good at teaching me music, even on the phone.” — SPENCER

“Music with Cameron gives Spencer something to look forward to and practice. It made him more future-focused, and less hopeless. That was good for me to see, too. And because we had to stop Spencer’s piano lessons for treatment, it was nice to see him have music in his life again.”  — JANALYN

A Healing Retreat

Recently, Spencer celebrated his 14th birthday during a family retreat to the Alexandra Ellis Caring Cabin®. It was a welcome respite from the nonstop stressors of cancer treatment and daily life during COVID-19, and he and his family enjoyed a much-needed weekend of relaxation, connection, and peace.

“Vacations are really hard with cancer, even in normal times. To have a safe place to go during COVID was a huge peace of mind. You can’t ever leave cancer, but for those few days, we were truly able to release a lot of the cares we were dealing with and just focus on having fun together. It was way more touching and healing than I imagined it to be. We so appreciate all who made it possible for our family to go to the Caring Cabin and have this magical experience!” — JANALYN