Meet Kira, a bright and musical 15-year-old who has recently completed three years of treatment for Acute Lymphoblastic Leukemia (ALL).
Through long hospital stays, chemo, and a scary side-effect of treatment that left Kira temporarily unable to communicate, Kira and her family found comfort in moments of laughter, hope, and Joy. Here’s a heartfelt letter from Kira’s mom, Sara, about Kira’s cancer journey—and how CCA’s Joy-centric programs provided critical emotional and social support for the entire family, and helped Kira find her “spark” even in her darkest moments.
Dear CCA Friends,
There are moments in life where time seems to freeze as the rest of the world continues to move around you.
Three years ago, my husband, Chris, and I were in just that spot as our daughter, Kira, was diagnosed with leukemia as a sixth grader. What was supposed to be a milestone year of dances, sports, and outdoor school was put on pause as our family became immersed in the pediatric cancer world.
But, we quickly learned we were not navigating this world alone. We were surrounded by compassion and hope, and rejuvenated by the team at Children’s Cancer Association, who shared the gifts of time, music, and laughter with us.
Kira has said so many times, “music is what fills my soul.” She had been studying piano for two years, we just found a vocal teacher, and she was interested in trying out the saxophone—when all of those plans jolted to a painful stop. It was not the cancer diagnosis that hit her the hardest; it was the idea that she had to give up all of her musical aspirations.
One day, early in her first hospital stay, we heard the gentle sound of a guitar down the hall. And then, a knock on our door. At that moment, our lives changed drastically. It was as if CCA’s musicians had turned a switch on—Kira beamed with energy. There was a sense of calm in her delight, as if she had been made whole with each strum on the guitar. Over the next three years of treatment, these experiences seemed to revive her.
JoyRx musician, Emily, elicits a smile from Kira while they sing “Happier” together in Kira’s hospital room.
Music heals. This is a fact I do not take lightly. At one very difficult point, Kira reacted negatively to a medication. The distress in our teenager’s eyes as she lost the ability to speak, walk, write, to do anything was painful for me. During this time in intensive care, CCA’s musicians played the songs that she had requested in prior jam sessions. Kira’s eyes sparkled with each visit. She often retells this point in her journey by saying that hearing “her songs” made her feel unique. She talks about wanting to break out of her locked body and sing along and feel normal.
One person that forever changed our lives is Riley, Kira’s Joy Mentor. I still remember the first time Riley walked into the room—it felt like the cancer and the chemo all fell away. Kira was herself. I could leave the two of them alone with confidence, knowing she was loved and cared for. I knew that her sides would be hurting from laughter instead of the side effects of the medication. I was able to step out and manage bills, make a phone call or two, and take care of me so that I could return better equipped to continue to support her.
“My Joy Mentor, Riley, is like a big sister to me. She always had time for a “quick” game of Life or building a Lego set. it was really meaningful to me to have someone to just hang out with in the hospital for hours during treatments.” —Kira
When COVID-19 hit, we were impressed by how quickly CCA adapted their programs. They hosted a virtual movie night with families and sent out movie theater snacks. Over the summer, they visited our home for an outdoor, social-distanced music session. Even hosting a Halloween party via Zoom seems natural at this point! I was glad CCA amped up their out-of-the-box approach to bring socially distanced music and companionship to the kids and families. While I am certain that the amount of legwork has increased, on our end, it all seems effortless.
“CCA has always been there delivering Joy. During the pandemic, they have found more creative ways to renew energy. Watching the live sessions and the personalized song request videos lights up my day and demonstrates that Joy is THE number one priority for them, no matter what is going on in the world.” — Kira”
Kira has now finished her three years of treatment, and is thriving. Even through this incredibly difficult journey, our lives have been a little brighter, a little more Joyful. We are appreciative—especially of the healing connections we’ve made with those who shared their gifts of music, laughter, and time with Kira, her younger brother, Thomas, and the thousands of families just like ours.
—Sara, Appreciative Mom