The pandemic has left many of us experiencing heightened feelings of anxiety, stress, uncertainty, and isolation—feelings incredibly familiar to Lance and Chloe, whose son, Bo, was diagnosed with acute myeloid leukemia (AML) when he was just nine months old.
Between four inpatient stays totaling 166 days away from home and extra precautions during and after treatment to guard their son’s compromised immune system, the family spent most of the past year in extreme isolation. But even in the most challenging and intense moments of treatment, both parents point to CCA’s services as “bright spots” in Bo’s difficult journey.
Finding Moments of Joy
Like more than 30,000 seriously ill children and their family members, Bo, Lance, and Chloe have benefitted from a number of CCA programs over the past year, including in-hospital music medicine sessions, fun activities and companionship from Bo’s Chemo Pal mentor, Jenny, and financial support through our Link program. Here’s what Lance and Chloe had to say about their experiences:
“Since Bo was a baby when he was diagnosed and going through treatment, he couldn’t really understand the value of the programs offered. But it was crucial for us as his parents to be able to see him enjoying time with CCA’s MyMusicRx musicians and his Chemo Pal mentor, Jenny. It showed us that even in the midst of chemo, procedures, hard days, and long inpatient hospital stays, Bo was still himself—a resilient, playful, funny, and active baby.”
“We absolutely loved Jenny, and Cameron’s regular music visits were one of those times when we would see Bo’s playful and happy personality come out. Those moments of Joy are some of the bright spots in the midst of everything we have gone through with Bo over the past year.”
Music and Friendship from Afar
Despite physical distancing measures, the family continues to access JoyRx through virtual and remote means. For Bo, this means dancing along to Cameron’s weekly concerts on Facebook Live, watching personalized videos featuring his favorite songs, one-on-one virtual music sessions, and staying in close touch with Chemo Pal mentor, Jenny (who recently sent Bo a sporting pair of new sneakers).
“Since Bo is only one and a half, he definitely has a shorter attention span for video versus our in-person interactions at the hospital. Still, Bo was moving his body and enjoying Cameron’s MyMusicRx performance on Facebook Live, and he perked right up when Cameron gave him a shout-out.”
Knowing that Bo liked to hold onto the guitar tuner and capo while he sang and played for him in the hospital, Cameron started a special recorded version of “Five Green and Speckled Frogs” for Bo by setting the tuner and capo aside for the toddler as always.
Joy is making a positive impact for Bo and his family, and for other kids and their families in the following ways:
- Kids and families can access music medicine anytime through live Facebook performances, by requesting song videos, and through interactive music offerings on MyMusicRx.org where all-new content is continually being added.
- Kids with Chemo Pal mentors continue to interact with them in safe and meaningful ways – nearly all matches have found ways to stay active, despite physical distancing. Chemo Pal mentors are also curating custom care packages for their mentees.
- Financially vulnerable families are being given support through grocery and gas gift cards assistance with home repairs, and other critical needs through our Link program as requested by social worker partners.
- Families can now safely visit our Caring Cabin again for rejuvenating nature retreats away from the intense stress of caring for a seriously ill child through a pandemic. For many of the families we serve, this is the only safe opportunity to be somewhere other than their home.
For families caring for seriously ill kids, our unique programs are essential and tailored to improve their emotional well-being. We need you by our side to ensure Joy delivery continues to this highly vulnerable population. When you give now, members of our Board of Directors, Leadership Council, and a family foundation will match your donation.
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