Physical Health United States Project #8877

Prescribe Joy to Seriously Ill Kids and Teens

by Children's Cancer Association

Prescribe Joy to Seriously Ill Kids and Teens

Project Report | Sep 20, 2017
Adventure with a Little Help From His Friends

By Samantha Thompson | Donor Relations Specialist

Irving is a cheerful young man who has crammed a whole lot of living into just 12 years. He loves to listen to music, and when he can, he loves to play basketball.

That’s been more difficult lately due to his condition—Irving was born with a rare and complex heart defect called hypoplastic left heart syndrome. That means the left side of his heart is severely underdeveloped, requiring the right side to do all the work. As a result, Irving has undergone five open-heart surgeries over the years.

Irving makes the most of every single day with characteristic optimism and enthusiasm. He loves traveling to sunny destinations, so he and his family have already made special trips to Disneyland, the San Diego Zoo, LEGOLAND, and Mexico.

“We want to do as many fun things [as] we can with Irving, but he requires oxygen to travel, and it gets expensive,” explained his mom, Alma. CCA’s Link program has stepped in to help cover some of the costs so that Irving can keep crossing more things off his wish list.

Whatever the future holds for this good-natured guy, he’ll face it with the deep love of his family, especially little brothers Andy and Roberto. Both look up to Irving and say he is truly their hero. “He’s the nicest brother, and he’s so brave,” said Andy. Roberto agreed. “He’s always happy and cheery, and he never complains – even when he’s getting all his shots.”

Irving was also named a 2017 CCA Hero and was honored at ceremony in May alongside his family and friends.

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Jul 14, 2017
Looking Forward to a Bright Future

By Samantha Thompson | Donor Relations Specialist

Should you happen to run into Bastian, don’t be surprised if you see him wearing black OSU stickers under his eyes just like the players do. This good-natured eight-year-old has been a huge Beavers fan ever since CCA got him tickets to a game last year.

Besides sending him to Beaver and Blazer games, CCA has supported him in other ways too. Bastian and his family spent four amazing days at the Caring Cabin. At the end of his stay, he left a note of thanks behind saying, “Thank you for letting us use this house. I’m Bastian. I’m eight years old. I have Glioblastoma. My family and I are very thankful. My favorite part was going out on the boat. Best weekend ever! – Bastian AKA Bash-Man”

Needless to say, Bastian enjoyed the perks of the Caring Cabin, including walks on the beach, the huge media room, boating on the lake, as well as placing his memorial stone on the grounds of the cabin.

He also enjoys hanging out with his Chemo Pal, Justin, and jamming with the MyMusicRx team whenever they stop by. “Bastian told them his favorite song was “House of Gold”, and they came back and performed it for him the very next day,” said his mom, Kim. “Really, CCA has been responsible for a majority of the positive experiences that has come out of his cancer journey.”

That journey started in 2016 when Bastian was diagnosed with a rare brain tumor called glioblastoma. Since then, this brave guy has faced multiple rounds of surgery and chemo with a fearless, positive attitude.

“I just try not to think about the scary stuff and think about all the good stuff that’s going to happen after I get through this,” he explained.

Some of that good stuff includes studying to be a vet or maybe a nurse at Randall Children’s Hospital. Until then, Bastian will continue to fight with the support of his family, which includes little brother, Konrad, his fraternal twin, Xavier (Bastian is a full minute older!), and his beloved stuffed Husky/Wolf, Fluffy.

Bastian was recently named a 2017 CCA Hero and was honored at a ceremony in May alongside friends and family.

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.

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Apr 27, 2017
A Night to Remember

By Samantha Thompson | Donor Relations Specialist

Like many 12-year-old girls, Zoa has pictures of her favorite band, Panic! At The Disco, plastered across her walls. But unlike many girls, Zoa is also battling Myelodysplastic Syndrome (MDS), pre-leukemia bone marrow failure.

When Zoa learned that Panic! At The Disco would be coming to Portland for a concert, she told her parents that more than anything, she wanted to see them live. Of course, her parents couldn’t say no. With Zoa’s birthday coming up it was the perfect time to surprise her with front row tickets to her very first concert!

However, Zoa’s condition took a turn for the worse, and she was admitted to the hospital for a bone marrow transplant, meaning that due to the high risk of infection from large crowds, she would miss her first concert. Zoa was understandably upset, but her dream of going to the concert didn’t end there. With the help of our Link and MyMuisicRx Programs, CCA gave her a 13^th birthday she will never forget! Zoa and her mom were given exclusive access to a Panic! At The Disco soundcheck at the Moda Center and even visited with lead singer Brendon Urie who hooked her up with band merchandise, an autograph, and some great photos.

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.

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