Prescribe Joy to Seriously Ill Kids and Teens

by Children's Cancer Association
Vetted

When we say that Joshua has a winning smile, we mean it literally – this cheerful little guy actually won a trophy at his school for having the best smile. His contagious grin lights up his entire face and delights everyone around him, from his family, to his teachers, to his medical team.

Joshua was born with spastic quadriplegic cerebral palsy. It keeps him confined to a wheelchair, but it hasn’t gotten in the way of his ability to have a good time. He loves teasing his two sisters, singing silly songs, watching cartoons, and going to the park with his dad.

He also loves Latin music and listens to it regularly on the iPad that he received from CCA’s Link program. “It’s so great,” said his mom Yoana. “We loaded it up with apps that are giving Joshua new ways to communicate with us.”

Yoana says her son’s positive attitude is an inspiration to everyone. “He’s very strong, and he never cries or complains. Usually people go through life grumbling about this or that, but not our boy. He goes through life smiling – and that makes him a hero to us.”

Joshua was recently named a CCA Community Hero and was honored at ceremony in May alongside his family and friends.

  • Link, a community network of caring people and organizations that provides wishes and unites local families with essential needs and connections to resources.
  • The Alexandra Ellis Caring Cabin™, a secluded home along the Pacific Coast nestled in 24 acres of surrounding woods with plentiful wildlife and a serene lake, provides an essential health connection with nature and an extraordinary place for families to relax and create once-in-a-lifetime memories.
  • Chemo Pal Mentor® Program, an award-winning program that matches children and teens with trained adult mentors
  • MyMusicRx®, a one-of-a-kind music medicine program that lets “kids prescribe” the music experience that feels right to them. The in-hospital program, led by MyMusicRx Specialists, includes bedside music and provides access to CCA’s digital music medicine program, MyMusicRx.org, which enables kids to play free music games, explore digital instruments and watch exclusive video song prescriptions from their favorite artists – whenever and wherever, 24/7

Links:

Kinsley is a 2-year-old girl that was diagnosed with Pilomyxoid Astrocytoma, a type of brain cancer, in June of 2014. Kinsley has been dealing with chemotherapy since she was only 9 months old and is now in the process of losing her sight. She also struggles to gain weight, faces the difficult task of dealing with anxiety, and had a tumor debulk over the summer. Kinsley and her family recently had a chance to visit the Alexandra Ellis Caring Cabin to help brighten up some of the very difficult and trying times she has been experiencing lately.

The Caring Cabin was the perfect place for her family to spend some much needed time together. During their stay, they enjoyed hanging out by the fireplace and everyone being able to act like kids in the game room.

Kinsley’s mom recently shared these thoughts about their trip with CCA: “Priceless memories were made, being able to act like a normal family, and not worry about hospitals… It was the best and most relaxing time we have ever had. And the best place to spend our first family vacation together…We just are truly blessed to have been able to stay at the cabin. And words cannot express our gratitude to all that makes it possible.”

  • The Alexandra Ellis Caring Cabin™, a secluded home along the Pacific Coast nestled in 24 acres of surrounding woods with plentiful wildlife and a serene lake, provides an essential health connection with nature and an extraordinary place for families to relax and create once-in-a-lifetime memories.
  • Link, a community network of caring people and organizations that provides wishes and unites local families with essential needs and connections to resources.
  • Chemo Pal Mentor® Program, an award-winning program that matches children and teens with trained adult mentors.
  • MyMusicRx®, a one-of-a-kind music medicine program that lets “kids prescribe” the music experience that feels right to them. The in-hospital program, led by MyMusicRx Specialists, includes bedside music and provides access to CCA’s digital music medicine program, MyMusicRx.org, which enables kids to play free music games, explore digital instruments and watch exclusive video song prescriptions from their favorite artists – whenever and wherever, 24/7.

Links:

Jordyn is a kind, creative girl who dreams of being a scientist or a movie director. A true social butterfly, Jordyn has a large circle of pals and cherishes them all. “I love spending time with my friends,” she says.
“We like to talk and do silly stuff.”

In 2007, Jordyn was diagnosed with Emery-Dreifuss muscular dystrophy and has undergone countless painful procedures since then, including a spinal fusion surgery. But despite her physical hardships, this courageous girl continues to live life to the fullest. “She’s a fighter,” says her mom Ana. “Her teachers tell her that it’s okay if she wants to do less work, but she refuses to take the easy way out.”

When Jordyn was in need of a pick-me-up recently, CCA’s Link program stepped in and bought her a laptop computer in order to help her with homework and reading. Because Jordyn has limited use of her hands, her parents downloaded a voice activated software to the new laptop that will help her with typing in the future. She was surprised to receive the laptop and couldn’t have been more excited to start using it.

  • Link, a community network of caring people and organizations that provides wishes and unites local families with essential needs and connections to resources.
  • The Alexandra Ellis Caring Cabin™, a secluded home along the Pacific Coast nestled in 24 acres of surrounding woods with plentiful wildlife and a serene lake, provides an essential health connection with nature and an extraordinary place for families to relax and create once-in-a-lifetime memories.
  • Chemo Pal Mentor® Program, an award-winning program that matches children and teens with trained adult mentors
  • MyMusicRx®, a one-of-a-kind music medicine program that lets “kids prescribe” the music experience that feels right to them. The in-hospital program, led by MyMusicRx Specialists, includes bedside music and provides access to CCA’s digital music medicine program, MyMusicRx.org, which enables kids to play free music games, explore digital instruments and watch exclusive video song prescriptions from their favorite artists – whenever and wherever, 24/7

Links:

Lexi places her memorial stone at the Caring Cabin
Lexi places her memorial stone at the Caring Cabin

Lexi is a spunky, 5-year-old girly girl who loves Barbie dolls, the color pink, and playing with her cat named Sushi Shrimp Rollup.

In 2012, Lexi was diagnosed with a high risk form of acute lymphoblastic leukemia. She's endured tough treatments along with their side effects, but after a two and a half year battle, Lexi, a 2014 CCA Hero, is finally celebrating being in complete remission, culminating her journey with a trip to the Caring Cabin!

Lexi’s family joined in the celebration and enjoyed the sunshine at the Oregon Coast with barbecues out on the deck and paddling on the lake.

During their trip, it was up to everyone else to keep up with Lexi’s pace. When they made an outing to Pacific City, Lexi made the big climb to the very top of the sand dune. Though she was thrilled with her accomplishment, it didn’t take long before she was barreling back down the hill, running and rolling as fast as she could.

When the rain showed up, Lexi and her family retreated indoors. The peace and quiet of the cabin provided an opportunity to reflect on the incredible journey they’ve been on together and how far Lexi has come to make it to the point of complete remission.

Lexi’s mom recently shared this note after their visit: “After two and a half years of chemo, multiple blood transfusions, and numerous hospitalizations, we were finally able to truly celebrate our daughter Lexi's remission from Leukemia. Thank you CCA for your support over the past few years and for this experience we shall not soon forget.”

  • The Alexandra Ellis Caring Cabin™, a secluded home along the Pacific Coast nestled in 24 acres of surrounding woods with plentiful wildlife and a serene lake, provides an essential health connection with nature and an extraordinary place for families to relax and create once-in-a-lifetime memories.
  • Link, a community network of caring people and organizations that provides wishes and unites local families with essential needs and connections to resources.
  • Chemo Pal Mentor® Program, an award-winning program that matches children and teens with trained adult mentors
  • MyMusicRx®, a one-of-a-kind music medicine program that lets “kids prescribe” the music experience that feels right to them. The in-hospital program, led by MyMusicRx Specialists, includes bedside music and provides access to CCA’s digital music medicine program, MyMusicRx.org, which enables kids to play free music games, explore digital instruments and watch exclusive video song prescriptions from their favorite artists – whenever and wherever, 24/7

Links:

Christopher was a sweet bundle of energy who loved animals and playing musical instruments. CCA first came into his life after he was diagnosed with Stage IV Neuroblastoma at just 18 months old. He was matched with a Chemo Pal mentor who brought fun and friendship during treatment, and enjoyed visits from CCA’s MyMusicRx team. Christopher battled hard for a year and a half before entering hospice care. Wanting to fill Christopher’s final days with joy, his parents asked CCA for a special party with family and friends, and some of his favorite things – frogs and reptiles! CCA's Link program reached out to the Beaverton Bakery, who provided an incredible frog cake, and to House of Reptiles, who brought along a variety of slimy, scaly guests that made Christopher laugh and smile with joy.

CCA’s Link program is a community network of caring people and organizations that unites local families facing serious pediatric illness with connections to local and national resources. We help families with specific, essential needs, from providing a child with a new pair of eyeglasses to granting the wish of a child with a terminal illness. Other CCA programs that prescribe joy to families with seriously ill children and teens include:

  • Chemo Pal® Mentor Program, an award-winning program that matches children and teens with trained adult mentors who provide friendship, diversion, and fun to kids undergoing treatment.
  • MyMusicRx®, a one-of-a-kind music medicine program that lets “kids prescribe” the music experience that feels right to them. The in-hospital program includes bedside sing-a-longs led by trained music specialists, instrument lending from customized mobile music carts, concerts, and iPad and headphone check-outs. The online extension, MyMusicRx.org, is the only digital music program of its kind; it enables seriously ill kids to play and download free music games, explore digital instruments and watch exclusive video song prescriptions from their favorite artists – whenever and wherever, 24/7.
  • The Alexandra Ellis Caring Cabin™, a secluded home along the Pacific Coast nestled in 24 acres of surrounding woods with plentiful wildlife and a serene lake, provides an essential health connection with nature and an extraordinary place for families to relax and create once-in-a-lifetime memories.

Links:

 

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Organization Information

Children's Cancer Association

Location: Portland, Oregon - USA
Website: http:/​/​www.joyrx.org/​
Project Leader:
Children's Cancer Association
Portland, OR United States
$263,447 raised of $500,000 goal
 
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