MyMusicRx Delivers Music Medicine

by Children's Cancer Association
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MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
MyMusicRx Delivers Music Medicine
Uriah jamming on the drums
Uriah jamming on the drums

At just three years old, Uriah is wise beyond his years and a joy to everyone who meets him. He loves tractors, listening to animal sounds, and exploring the great outdoors with his family.

Uriah’s deep love for nature makes it tough for him to spend long days at the “sick hotel,” as he calls the hospital. But he knows that the “yukky medicine” will help him get well, and faces his treatments with the courage and strength of a true hero.

A Devastating Diagnosis

In late 2018, Uriah wasn’t feeling like his usual bouncy self. His family was on vacation in Hawaii and much of the trip was spent sleeping with fevers. They thought he might have a viral illness and took him to the doctor when they returned home. But, the pediatrician said that he would get better. “Two weeks later he was worse, losing weight quickly and hardly eating. On Christmas Eve, our pediatrician told us to take him to Doernbecher Children’s Hospital, they now suspected cancer but didn’t know what kind,” his mother Regina shared.

A flurry of tests later, the results came in: Uriah had neuroblastoma. Doctors discovered a baseball-sized tumor in his abdomen, sinus tumors, and a number of other complications from the cancer.

Smoothing the Road to Recovery

Since his diagnosis, Uriah has been at the hospital for the majority of his treatment, but even the off weeks are busy with medical appointments. Despite a hectic schedule, the family didn’t want to miss any opportunities for Uriah to be in the comfort of his own home.

With near four-hour drives from their home in Yachats, OR, and potentially dangerous winter road conditions, the family was concerned about their need for better tires. So CCA’s Link Program stepped in to help the family purchase new tires for their vehicle.

“We don’t get snow out on the coast, and we normally avoid travel in bad weather. Funds were tight since we had very little income with all our time spent at the hospital. We were very appreciative to have that help,” Regina said.

Ready to Rock

Music has been a vital part of Uriah’s treatment, helping him to stay in the moment and express his emotions. Uriah’s first introduction to music in the hospital was when MyMusicRx Specialist, Cameron, knocked on his hospital door. Much to Cameron’s surprise, Uriah was not into the children’s songs most kids his age favor. He wanted rock and roll!

“When I first met Uriah, I asked what songs he liked to listen to and fully anticipated the Disney standards,” remembers Cameron. “What I found, was that this little dude wanted to rock out! I’m constantly blown away by the deep cuts he asks for, like Kraftwerk or The Who.”

For Uriah, the music reminds him of home, where tunes often waft through the house or play on outdoor speakers. According to Uriah’s dad, Glen, having MyMusicRx to play and sing with him in the hospital has made all the difference. “Cameron has been really good with Uriah, indulging him in all the weird songs we listen to,” he smiled. “It’s actually fun for all of us. Uriah was stumping Cameron with one of his music requests, but Cameron went out and learned it. The next time he came he knew it! To see Uriah light up and sing along with Cameron was wonderful.”

Meet the “Toy Lady”

Uriah’s Chemo Pal Mentor Chelsea has also been a bright spot in his treatment, providing Uriah with a welcoming friend to look forward to at the hospital. He affectionately calls Chelsea “Toy Lady.”

The two new friends hit it off immediately, sitting for hours on end playing while giving Uriah’s parents some much-needed rest.

“Chelsea is able to indulge him for much longer than I have the energy to do at this point,” admitted Regina. “It’s also great that she’s a consistent presence because, at Uriah’s age, it takes a while to warm up to new people. So for him to see to that familiar face is really nice.”

Looking Ahead

As Uriah responds to his treatment, the change in him has been remarkable. “He’s like a completely different kid,” said Regina. “And if you think he’s cute and active now, wait until he’s feeling his best!”

Eventually, the family hopes to return to Hawaii for a “re-do” so that Uriah can experience the islands again when he’s feeling better. He’s eager to return to the things he loved best about the trip, like listening to geckos and visiting the ducks that lived in a nearby pond.

One thing’s for certain—cancer has never defined Uriah’s passion for life, and it never will. Regardless of what he is up against, he simply wants to learn, play, rock out, laugh, and dance—and nothing, not even cancer, can take that away.

The power of Joy!

 

Uriah on the Piano
Uriah on the Piano

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An unexpected visit to the hospital is stressful beyond imagination, especially when it's your child in the hospital. Silas' mother knows this all too well when Silas was suddenly admitted to the hospital. The family spent days cooped up in their hospital room, Silas' mother explains.

"We were not able to leave the room, and he had a span of only a few feet to roam even inside the room due to the length of the things he was hooked up to. On the third day of this, he was pretty upset, scared of people walking in the room – and BORED."

That's when MyMusicRx Specialist Jean knocked on their door. 

"When Jean came by with her ukulele," says his mother, "he was truly the most engaged that I had seen him the whole hospital stay – he wanted to touch the strings, danced a bit, loved exploring his own red ukulele, listened so attentively to the songs. It was so wonderful to sit with him and Jean and just be happy in the moment of him having a great time despite the circumstances. It was an incredible emotional relief to have Jean play music for and with Silas."

After a great jam session, Jean left Silas with a small ukulele to play with for the remainder of his stay. "Silas came back to pick at the strings multiple times. Seeing how much he loved music and singing, we have been more intentional at home to play and sing and dance multiple times a day. I’m so grateful for Jean and her gentle approach and obvious love of being with kids and making music – her visit to our room was really the only thing we all want to remember from the hospital stay."

MyMusicRx's trained specialists engage hospitalized kids of all ages and diagnoses, playing music for and with them and their families. MyMusicRx offers bedside serves, in-hospital concerts, and digital programs - all of which are designed to relieve stress, anxiety, and perception of pain. Thank you for supporting the healing power of music.

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Phoenix and Family
Phoenix and Family

A Bright and Smiling Baby Boy

From the start, Phoenix was a lesson in finding the bright spots amongst seemingly insurmountable challenges. “On July 1st, 2007, after 36 hours of labor and an eventual urgent C-section, Phoenix came into our lives smiling,” shared his mother, Rebecca.

Phoenix had the incredible knack for making friends from day one. He was athletic and strong, energetic and expressive, persistent and determined. “He was walking at eight months and running one week later. By 18 months he had figured out all the child locks. Rocking him to bed was more of a wrestling match, as were diaper changes!”

Looking back, the first signs of something amiss were when, at the age of ten, Phoenix came home tired and worn from his gym class. He began to injure easily and became more cautious.

Depleted

Low hemoglobin levels revealed Phoenix had acute lymphoblastic leukemia (ALL) and needed immediate treatment. Doctors started chemotherapy right away. The news was devastating for him and the time to process too short. Not long after he started chemo, Phoenix would face seizures and rare medication reactions. He even spent time zipped into a scary isolation tent. It was physically and emotionally terrifying for him, and for his parents.

Frequent and unexpected visits to the hospital left Phoenix with an intense fear of treatment, and he began to withdraw. Richard recalls those difficult times, “Phoenix literally turned his back to everyone. He was not talking, and he was just exhausted. Everyone was depleted, and there was nothing we could say that would help him.”

Joy Makes an Entrance

“The first time his Chemo Pal Brenton entered our room with a bag of toys had an immediate impact. Pretty soon they were fist-bumping! Phoenix carried a lot of trauma and to see his smile – it was everything. And that’s how every program has felt since. Just all of a sudden, your feet are on the ground. I can’t explain, there’s just a healing that you feel.”

CCA provides matches for over 200 kids like Phoenix every year, pairing them with a trained, adult Chemo Pal mentor, improving their treatment experience and making a positive impact on their social interactions, mental and emotional health, as well as treatment adherence.

A Turning Point

One year and four months after Phoenix received him ALL diagnosis, Rebecca and Richard found themselves at the top of the hill overlooking CCA’s Alexandra Ellis Caring Cabin, reflecting on their journey. They hoped they could carry the connection and calmness felt in that moment forward, keep it in their hearts, move on, more complete, more loving, more connected, and more whole, than they had been before their visit.

It was the apex of their journey. Phoenix’s treatment path had been more complicated than most, but standing at the top of that hill, Richard and Rebecca realized the gift that CCA had given the family – “CCA has been consistently uplifting us through the whole journey.

40 families stay at the Caring Cabin every year to rest, recover, and create positive memories outside the hospital at a beautiful home nestled in the woods near Pacific City. To families whose kids have been through treatment and chemotherapy and are facing new physical abilities or are immunocompromised, being able to take them to a safe and clean location in nature is a gift.

The programs have been blessings that we have really carried along with us. We watched Phoenix find a friend in his Chemo Pal, Brenton; find peace through playing and learning the ukulele; find a hero in Meyers Leonard during a CCA-sponsored visit to the Portland Trail Blazer’s practice facility. CCA even provided home repairs and yardwork when we were in no place to think about either. They helped us understand how much goodness and kindness really mean.”

Phoenix and his family were served by several of CCA’s programs, including Link, which provides assistance to families facing financial hardship due to the massive cost of treatment, transportation, and time out of work. Link provides help in meeting essential needs, such as car and home repairs, gas cards, and purchase of equipment not covered by insurance, such as air purifiers and air conditioning units.

CCA’s work is possible only because of generous gifts. You can create consistent uplift for families just like Richard and Rebecca’s with a gift to CCA to sustain joy-based programming.

 

 

Phoenix Playing the Ukulele
Phoenix Playing the Ukulele
Phoenix at the Hospital
Phoenix at the Hospital
Phoenix at Caring Cabin
Phoenix at Caring Cabin

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Kira is a bright and thoughtful young lady with a great sense of humor and obvious love for her mother, Sara, and younger brother, Thomas. She also loves reading romance books (“not cheesy romance novels”) and has a passion for school. So, it was no surprise that when Kira was told she had to stay at the hospital for testing and eventually treatment for Acute Lymphocytic Leukemia (ALL), she was disappointed that she wouldn’t be returning to school.

“I didn’t feel good the day before we went into the hospital. I thought it would just go away, but it got worse as the day went on. I called my grandma to come to get me which was weird because I never leave school.

When they told me I had ALL, I was like OK, at least I know what’s wrong, but I was also upset I couldn’t go to school. I was admitted to the hospital the day before our end of the year volleyball party and two days away from the school dance! Really bad timing!”

The Big Sister She Always Wanted

The days spent in the hospital would get tiresome for Kira and her family. Reflecting on their time spent in a hospital room, Sara is grateful that she said yes to signing Kira up for Children’s Cancer Association’s Chemo Pal Mentor Program. “We’re up in the hospital often and as fun as the hospital tries to make it, as a kid - you’re still stuck with your parents all the time. When Kira was matched with a Chemo Pal, I was able to take a step out and complete some of the things I needed to do, and Kira could have a break from me.”

Matched in December of 2017 Kira sees Riley as the big sister she always wanted. “Riley is really fun and nice. She never gets tired of playing Life with me when they (mom and brother) do.

Learning to Play Again

More challenges were on the horizon for Kira when she had a bad reaction to chemo treatment resulting in aphasia – the loss of ability to understand or express speech. “For a solid two weeks, she couldn’t move anything,” recalls Sara.

That’s when Kira began working with MyMusicRx. Kira’s life at home had always been filled with music, the radio a constant soundtrack to her life. She can also play the piano, saxophone, and sing.

While affected by aphasia, Kira would receive visits from MyMusicRx, something she was grateful for. “You could see in her eyes that she was relaxed when MyMusicRx played. Music was something she could connect to while regaining her ability to move.”

MyMusicRx Specialist, Annie, even helped her to relearn the piano, teaching Kira how to move her fingers again.

Emotional Healing

Today, Kira is back to playing and singing, even performing in two #Bedstock music videos with MyMusicRx and continues to see her Chemo Pal for limitless games of Life.

Reflecting on their very hectic and difficult year, Sara notes that they wouldn’t trade their time with Riley or the MyMusicRx team for anything. “CCA’s programs really do change the atmosphere of how you’re living in the hospital. Kira had to be out of school for a year and didn’t get to have as many social interactions. The programs change how you interact with others and it was nice to have genuine positive interactions with people who are excited to see you. To families that are thinking about getting involved in CCA’s programs, I’d say go for it and give it a chance to change that (hospital) space. You need to take care of the caretaker and CCA is looking after people’s emotional growth and emotional healing.”

Make a Difference

Your donation makes a difference in the emotional wellbeing of children and teens facing serious illness. Donate today to support kids just like Kira.

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Will and Son Jack
Will and Son Jack

This is the story of my son Jack's short, wonderful life, my enduring friendship with Children's Cancer Association (CCA), and the difference your gifts make in the lives of families like mine. Thank you for your support.

The day I learned Jack had a brain tumor, I vividly remember not being able to catch my breath, or even breathe. I could not wrap my head around the word "cancer." I had no idea what to do or how to react, I only knew it was my job as his dad to make every day the best it could possibly be for him.

CCA was there for us, transforming moments of anxiety, isolation, and pain with friendship, music, and thoughtful care. A few instances stand out to me. They may seem to you, but they were precious to me, and I remember them well.

On our first trip to the hospital, a MyMusicRx volunteer was playing the piano in the lobby. Jack asked me when we were going to get to the hospital. I remember leaning down and telling him that we were already there. The first music experience with CCA was a defining moment for us. You could feel the tension lifting; the music was so comforting and made us all more relaxed and less anxious.

CCA somehow learned that we planned a trip to Disneyland between treatments. Jack was having a particularly bad day when someone knocked on our hotel room door. I was greeted with a plate of warm chocolate chip cookies - from CCA. This unexpected gesture made us feel like we were not alone, that we had support, and we're going to be okay. It's these small, precious things that can really matter, and it is what CCA does best. 

Jack never did get better. But from day one CCA was there. Once CCA is in your life, they are forever a part of your family. They NEVER forget Jack's birthday or the day he died; they literally send me a card every year signed by the entire staff.

Because of the incredible difference CCA made for us during an impossibly difficult time, I now serve on the Ambassador Board, to help spread the word about the organization. 

When you support CCA, you create so much joy for families like mine who know firsthand the trauma of pediatric cancer - thank you. Please donate, it really does make a difference.

With Heartfelt Thanks,

Will - Jack's Dad and CCA Ambassador Board Member

Jack at the Beach
Jack at the Beach

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Organization Information

Children's Cancer Association

Location: Portland, OR - USA
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Facebook: Facebook Page
Twitter: @CCAJoyRx
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Children's Cancer Association
Portland, OR United States

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