Ungrounded By Leukemia, But Not Alone: Phoenix’s Story

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.”

Children’s Cancer Association 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.

The Strength to Move Forward

Today, Phoenix has taken charge of his own care. “He’s come so far from being shut down and angry to really advocating for himself,” said his mother, Rebecca. “He tells the nurses his preferences, and he’s really good at accessing his port! Things have eased up, and he’s much more responsive to treatment.”

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. If you sign up as a monthly donor in April, your gifts will be matched for the rest of the year, doubling the impact.