Prescribe Joy to Seriously Ill Kids and Teens

by Children's Cancer Association
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Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Prescribe Joy to Seriously Ill Kids and Teens
Ana
Ana

Ana might seem quiet and shy at first, but beneath that reserved exterior is an outgoing 15-year-old girl with a great sense of humor and a genuine interest in getting to know everyone she meets.

Ana is passionate about soccer, kayaking, hip-hop, and traditional Mexican dance. She also has quite the artistic streak and loves creating entirely new looks with makeup. “I don’t think of it as ‘let’s look pretty,’ I think of it as art,” she said with a smile.

Girl, Interrupted

In December 2017, Ana had just started her freshman year of high school. She was eager to dive back into her favorite subject, math, and take advantage of everything her new high school had to offer. Instead, her world was rocked with a diagnosis of Desmoid Fibromatosis, a cancer of the connective tissue. Her days became filled with long hospital stays and difficult chemo treatments.

Soothing Anxiety Through Nature

Ana, like many teens battling cancer, was filled with feelings of anxiety and isolation. Feeling disconnected from her friends, and with a baby sister on the way, Ana longed to bond with other teens who could relate to what she was going through. That’s when she decided to take advantage of CCA’s NatureRx program. Specifically designed for teens and young adults in treatment, NatureRx offers fun outdoor adventures in a safe, supportive setting.

“NatureRx is so helpful because it’s for teens,” she said. “It means a lot to be around people who understand me—we can all relate to certain things even if our diagnoses aren’t the same.”

Snowshoeing’s Better with Friends

Ana’s first event was snowshoeing on Mt. Hood. She was nervous on the ride up to the mountain—but with snowshoes strapped to her feet and surrounded by supportive peers, Ana found herself in her element. She spent the mile-long hike encouraging other teens to keep going and offered support when anyone stumbled. She even found a new friend and they ended up talking non-stop for the remainder of the four-hour trip.

Ana had so much fun on that excursion that the very next month she returned for NatureRx’s cycling event, where the teens learned to make quick repairs on their bikes and then sweat it out at BurnCycle’s stationary biking studio.

A New Beginning—and a New Support System

Valentine’s Day of 2019 was particularly sweet for Ana—that’s when she learned that she had completed her last chemo treatment. It was a day she thought would never come. “When I began chemotherapy, they never said, ‘You’ll do it for a year, and then you’ll be done,’” she explained. “It was more like, ‘We’ll see what happens.’

Ana says having no end date made it hard to stay strong—but this fiercely independent teen is no quitter. “I would sometimes complain that I couldn’t do it for so long, and I was tempted to give up,” she admitted. “But I didn’t. I’m really proud of that.”

Now that her chemotherapy is behind her and her condition has stabilized, Ana is now looking forward to getting back to the life she left behind. She’ll be returning to high school, resuming her beloved math classes, and getting involved in extracurricular activities. When she does, she’ll be backed by a full cheering section of new friends from NatureRx who are rooting for her every step of the way.

As for her future, it’s filled with possibilities. But after her experience with serious illness, Ana says her career path is clear: she wants to work in a hospital so she can give back to other kids just like her.

Ana Snowshoeing with NatureRx
Ana Snowshoeing with NatureRx

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Quick-witted Moxie is always ready to make a new friend, whether it’s a kid she met at school, a nurse, or even someone on the street.

“She’s not so good with ‘stranger danger,’” joked her father, Dax.

The Realities of Living with Cancer

Moxie has been on and off chemo for Optic Glioma, a tumor on the optic nerve since she was just six months old. For years she and her parents, Kristi and Dax, juggled a difficult chemo schedule and long hours of driving to receive specialized treatment.

In Fall 2015, the family made the move from California to Portland so Moxie could receive treatment at Doernbecher Children’s Hospital. That’s when she met her Chemo Pal, Ashley.

A Friend for the Entire Family

Long infusions at the hospital left a rambunctious Moxie bored. That all changed when Ashley began showing up to the infusions.

“Ashley has been such a relief,” said Dax. “We didn’t have to be completely embedded in the treatment all the time. I was able to write or get a coffee and it gave Moxie something to look forward to, something she actually wanted to do.”

“Ashley genuinely loved coming to visit,” chimed in Kristi. “It’s nice when someone else loves your child. It’s so special.”

For Ashley, being a Chemo Pal meant being there for Moxie and the entire family.

 

“I remember telling Kristi to go to the bathroom or get a coffee, and she was like, ‘I can?!’ Just this idea that she could take a break was foreign and I was glad to be able to do that for her.

 

One of my favorite memories was bringing Twister for Moxie to play and she was hooked up to her infusion machine with tubes running from her to the machine. All of a sudden, she’s playing this with all her friends and all these tubes were literally getting twisted! But they were having a blast.”

 

For Moxie, having Ashley around was special too and if you ask her, Moxie will gladly admit that she considers Ashley one of her heroes.

 

“She is always keeping me happy and has always looked out for me. Now Ashley knows Twister is not a good game for the hospital,” Moxie joked.

The Gift of Music

Moxie is a MyMusicRx enthusiast with a flair for performance. Her favorite instruments include guitar, keyboard, drums, bass, xylophone, and of course, she loves to sing! She loves it so much in fact, that she has participated in MyMusicRx’s annual Bedstock online music festival three years in a row.

An Endless Capacity for Kindness

Today, at the age of eight, Moxie still has treatments in her future, but her unwavering positivity and strength are not to be underestimated. Without a doubt, Dax believes Moxie deserves the title of hero.

“I am still baffled by the way she stays happy. Everything she’s done and been through—she just keeps going. She has the power of the sun somewhere in there. She’s stronger than me,” said Dax.

Taking each day in stride, Moxie’s greatest attributes lie in her endless capacity for kindness, something Ashley saw firsthand.

“There were multiple instances when younger kids at the hospital were frightened and crying,” said Ashley. “Moxie didn’t think twice about telling them ‘it will be fine, and it only hurts for a minute… and then you get to play with toys! Ashley go get all the toys!’”

 

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Elijah and friend working on robot
Elijah and friend working on robot

Stephanie and Ben are the proud parents of 12-year-old Elijah and 14-year-old Faith. The family lives an active life in the outdoors, backpacking, skiing, and stand up paddleboarding. Their home sits tucked away in the hills near Hood River with the beautiful Columbia River Gorge as their playground.

It was during one of these outdoor excursions that Stephanie and Ben noticed Elijah seemed tired, often stumbling and losing his balance. Though somewhat concerning, they chalked it up to a growth spurt. However, headaches became a frequent occurrence, sometimes causing him to throw up. Then one night, reality came crashing down when he began to scream in pain from a splitting headache.

Terrified of the pain their son was experiencing, Ben rushed Elijah to the hospital. Just a few hours later, Stephanie received a call. Elijah had a tumor in his brain, medulloblastoma.

Ben reflected on that night, still shocked that his son had been living with such a large tumor. “It was my first personal experience of massive denial. I watched him get the CT scan done and watched the images show up. I just couldn’t believe it at all. I thought it must be someone else’s head on the screen. The doctors were surprised he could talk and walk. He had been standup paddling a few days prior.”

Surgery removed the tumor from his brain, but it left Elijah with a loss of strength on the right side of his body. He had to learn how to walk, talk, and become left-hand dominant. Physical therapy was grueling and at times dismaying for Elijah. Some days he didn’t even want to leave the couch – then the Link program had a customizable robot delivered right to his front door.

Building Strength with CCA’s Link Program

“It was a major deal for us to get the robotics for him, we were trying to draw him out,” said Ben. “He was pretty sick and wasn’t really interacting. The robotics got him sitting at the table and going online to learn how to build things.

Link also gave him a subscription to a monthly STEM kit (Science, Technology, Engineering, and Math). Every time a box showed up, he would tear into it, he really enjoyed them. We had no clue what he was working on, and he’d have to teach us!”

“CCA gave me a robot. I have a controller app on my phone, and I can make it move,” said Elijah proudly. “It’s good for my right hand, for my coordination. I find it fun to put things together, building something from small parts. The STEM kits were really fun too.”

Link also helped the family purchase snow tires, ensuring that Stephanie could take Elijah to his appointments without worry. “Early on we needed assistance on our main vehicle which was going to be making the long drives to Portland and sometimes Seattle for treatment,” said Stephanie. “Right away CCA stepped in and helped with the repairs. When winter arrived, they also helped with snow tires. Driving through the gorge in the winter can be really dangerous, so it was great to know we could go back and forth safely.”

Honorary Trail Blazer Captain

Stephanie signed Elijah up to become an honorary Trail Blazer Captain through CCA. Elijah even met some of the players like Damian Lillard and long-time CCA supporter, Meyers Leonard. While a basketball game might seem like a common occurrence to some, for Stephanie, it meant the world. “It’s so important when you have a child who is sick to build memories and create new ones. We wouldn’t have been able to do any of those things without CCA.”

Faith, a huge fan of basketball was over the moon to see her brother down on the court meeting the players. “It was really amazing. We got to bring friends and family. I was so glad we were able to participate in that and it wouldn’t have been that way without CCA.”

Stronger, One Step at A Time

Today, Elijah is moving forward with chemotherapy through October of 2019 and is proud to share that he is self-regulating his calories and back to feeding himself after months on tube feeding. He’s also working hard to increase his core strength and balance while continuing to regain dexterity in his right hand through physical therapy and of course building robots.

The impact of your donations was felt across many aspects of Elijah’s life. Please make a donation today to ensure that families like Elijah’s are supported through one of the most difficult periods of their lives.

In addition, through the end of April, if you are a new donor or a monthly donor, your donation will be doubled, doubling the joy felt by families facing serious illness. Thank you.

Elijah and Family
Elijah and Family
Elijah Meeting the Blazers
Elijah Meeting the Blazers

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Joy for the Holidays (formerly known as Hope for the Holidays) was another resounding success for 2018’s season of giving. Lead by the Children’s Cancer Association’s (CCA) Link Program, and generously supported by Fortis Construction, this event harnessed the power of our dedicated community to provide joy to families during the holiday season.

Delivering that much joy is indeed a collaborative effort. Our amazing elves, the crew from the Nike Training Team, perfectly organized presents for transport at the third annual Gift Drop Off party. Individual volunteers made thank you ornaments, communicated with families, and delivered gifts.  In total, more than 1,500 volunteers put in over 1,900 hours of hard work.

Homes Filled with Joy

Christmas morning, 65 families woke to a home filled with presents, excitement, and joy. Here are just a few ways in which your support made a difference.

I Can Never Say Thank You Enough

“With everything going on this year Christmas was not looking promising. I felt so bad because my son had been through so much, which means my family had been through a lot too. I explained to the kids Christmas wasn’t going to look promising, but when they saw the gifts their eyes shined. Their smiles, I’ll never forget.

The morning the kids opened the presents they were so excited and enjoyed every minute of it. I can never say thank you enough for what you did for our family it was absolutely amazing. Every gift was perfect. [The sponsors] put a lot of thought into each gift. They were wrapped beautifully, and the extra touch of Christmas ornaments on some of them was priceless. I could say thank you a thousand times and still feel like there was more to say.” – Donovan’s Family

We Are Not Fighting Alone

“I came home from work after the gifts had been delivered, and it made me cry to see a tree, that had nothing underneath it before, now transformed into one of the best Christmases my children have ever had.

They asked me every day leading up to Christmas, ‘can we just open one?’ They were so excited to see the gifts that had been selected especially for them. When it came time for gifts, I just watched them open everything with tears in my eyes. They were so happy, so excited, and felt so special. It was amazing to see all of my children blessed in such a big way since much of the time and energy has been focused on Robert and getting Robert well.

Robert received this hoodie that says, ‘Every Day Warrior: Don’t Fight Alone,’ and when he opened that gift, I couldn’t stop myself from crying. We call ourselves Robert’s Warriors. It was such an amazing moment to feel like we are not alone. That to me was the most special gift.

I don’t know how to say thank you enough but thank you. Thank you to everyone who made this possible. I don’t know how or when, but I will do my best to pay this kindness and generosity forward.” – Robert’s Family

Tears into Smiles

“I can’t thank you enough for everything. I’ll always remember what you guys did for us during this hard time. You guys made my tears turn into smiles. It was hard trying to make Christmas special for my kids without a job and not being able to provide for them. You guys made that worry go away and, we are forever thankful for all that you did.” –Shaun’s Family

Support Our Link Program

Link takes the profound emotional and financial hardships of serious pediatric illness head-on, engaging a network of caring people and organizations to provide families with essential needs assistance and support. Donate today to provide children and their families with the resources they need.

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Heaven
Heaven

Two days after my daughter’s second birthday, I was handed a teddy bear and told by a doctor, “I’m sorry, it looks like Heaven has blood cancer.” I hate that bear.

Living in a hospital room with a sick child for weeks on end is an indescribable experience. Doctors and nurses coming and going, tests, tubes. So, when I heard another knock on the door, I warily said, “Come in.” This time however, it was Children's Cancer Association (CCA)’s MyMusicRx team, who gently asked if Heaven would enjoy some music. She had hardly been responsive for weeks. I said, “Sure, why not.”

The next thing I knew, Heaven was rattling the egg shaker and singing, and even dancing a bit in bed.

I cannot put into words the feeling of seeing your child come back to life. The power of CCA’s MyMusicRx program gave me a gift, a glimpse of hope, that Heaven was still my same little girl.

That’s when I learned about all the amazing ways CCA helps families like mine. The first day Heaven’s Chemo Pal Mentor Program match, Raina, came to visit, they just “clicked.” Heaven hopped right into her lap. I was shocked and so happy. To have a Chemo Pal mentor, whose sole focus is to create happiness for your child, is such a blessing. Raina made both of our lives 100% better. I can relax and talk to doctors and Heaven now actually looks forward to doctor visits.

CCA even made the holidays happen for us, and for my 11-year-old son, Shane, who was doing his very best to stay strong when Mom’s focus needed to stay on Heaven. We pretty much never left the hospital. The Link volunteer filled the hospital room with gifts, everything we put on our list – and more. It was beyond amazing.

When you contribute to CCA, these are the experiences that you make possible for families like mine who are overwhelmed and traumatized by pediatric illness – thank you.

Please support CCA today with a donation. Getting through a pediatric cancer diagnosis really does require more than medicine; it requires music, and laughter, and joy, and all those things CCA is really good at providing.

With Heartfelt Thanks,

Lacelin - Heaven's Mom

Heaven in treatment
Heaven in treatment
Heaven and Her Chemo Pal
Heaven and Her Chemo Pal
Heaven with Her Brother
Heaven with Her Brother

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Organization Information

Children's Cancer Association

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

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