Prescription for Joy
For the first 90 days after Hayley was diagnosed with a cancerous brain tumor, her mother never left her bedside.
“At that time, I was also pregnant with Hayley’s sister — but I just closed myself off from everything and stayed in her hospital room 24/7,” said Jennifer Hutt. “I do remember that a woman from the Children’s Cancer Association (CCA) would peek into the room and check on me once or twice a week, and talked to me about the things they could do to help.
“Finally, I was ready.”
CCA is a nonprofit founded in Portland, Ore., that provides non-medical care that is unmet by hospitals and community organizations. It provides caring support and joyful experiences to children going through chemotherapy and other treatments, as well as providing relief for their parents.
Hayley’s journey has been one that no young child should have to endure. Thankfully, CCA was able to provide some services to make her ordeal a little easier.
How CCA helps
One of the ways CCA helped initially was to team Hayley up with a “Chemo Pal.” Since Hayley was first diagnosed, she has undergone a successful surgery to remove a golf-ball-sized tumor that was resting on top of her brain stem. She also completed over 50 weeks of aggressive chemotherapy treatment, as well as dozens of radiation sessions to prevent the cancer’s return.
Chemo Pal matches kids undergoing treatment with a dependable, caring adult friend. They spend time with young patients in hospitals, clinics and home to play games, take walks, read, do art projects, share hobbies and more.
“Chemotherapy treatments are no picnic for anyone, particularly for a child,” explained Danielle Wheeler, CCA’s marketing and communications director. “Not only does it mean spending hours in clinics and hospital rooms, a child misses out on so many normal experiences, while other kids their age are at school with friends.”
“Hayley had a Chemo Pal for a year and a half,” Hutt said. “It was so nice to see her playing — even in a hospital environment. It also helped me spend some quality time with my youngest daughter.”
Not every healing treatment at the hospital involves poking, prodding and medication. CCA’s Music Rx® program entertains kids and lets them release their inner rock stars. Music Rx delivers bedside music therapy and hallway performances, and features an interactive, mobile music cart that travels through every unit of the hospital.
“Music Rx meant a lot to Hayley,” Hutt said. “Not only could she view videos, she would go crazy with excitement every time ‘No One’ by Alicia Keys came on, or if she heard Justin Bieber’s ‘Baby.’”
The cart is a mobile music festival that holds nearly 100 specialized instruments, and even incorporates interactive songwriting and recording technology. Launched in 1995 at two children’s hospitals in Portland, Ore., Music Rx now operates in 25 units in six regional medical centers, and has plans to expand to other U.S. cities.
Another CCA program Hayley and her family enjoyed was a stay at the Alexandra Ellis Caring Cabin, which is named in honor of the founders’ five-year-old daughter who died of cancer. This secluded, retreat home was built specifically to provide a free adventure for seriously ill children and their families. It is located on a private lake on 24 wooded acres near Pacific City on the Oregon Coast.
“I think we used just about every CCA service,” said Hutt. “But the one that stands out is CCA’s LifeSupport. They got Hayley a new twin bed, as she had outgrown her old one. That meant a lot. I am a single parent, and CCA has given me a lot of help.”
CCA’s LifeSupport Family Enrichment Program helps local families with specific, essential needs, provides direct links to hundreds of local and national resources, offers funeral assistance and bereavement support in the event it is needed, and works to fulfill a child’s special life wish.
A hopeful outcome
Chemotherapy certainly wasn’t the end of Haley’s ordeal. Since undergoing chemotherapy, Hayley has had open-heart surgery and still goes to doctors once a week for speech and fine motor skills therapy. She also had surgery to lengthen her Achilles tendon because she was bedridden for so long.
However, Hayley is off her feeding tube, is off all meds and is using a walker 70 percent of the time. Before, she couldn’t walk at all because she spent so much time in bed.
“Best of all, Hayley has been cancer-free for three years, one month and 15 days (as of Oct. 15),” Hutt said.
Also, Hayley now goes to school.
“Getting on a school bus is like going to Disneyland for her — every day she’s beyond excited,” Hutt said. “She was isolated for over a year and then only saw other sick kids who were too tired to play.
“Now she gets to be a normal kid for six hours.”
For more information about Children’s Cancer Association programs, visit www.joyrx.org.
No related posts.
Subscribe
If you enjoyed this article, subscribe to receive more just like it.
