By Kelly Carmody | Digital Content and Social Media Specialist
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.
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