Little Soleil has an ear for rhythm and music and loves to sing. When a good song comes on, Soleil brings the dance moves. She loves art, using her imagination, dressing up, visiting fun places, and all things Disney. Soleil has an older sister and older brother, and possesses the determination and ambition that third kids tend to have.
She was a full-time crawler at 5 months old. She was pulling up and “couch surfing” at almost 8 months old. Her family knew it was only a matter of time until she walked on her own. In April 2020, just as the pandemic was hitting, everything changed. Soleil started falling. She could no longer crawl or walk along furniture. Her parents took her to her pediatrician and they didn’t find the change in her behavior concerning. After several weeks of visits to the pediatrician, a stay in the hospital, countless phone calls with medical professionals, and concerning symptoms, her parents could not take “it’s a stomach bug” as an answer anymore.
In June of 2020, Soleil finally received a proper diagnosis. Brain cancer. Soleil’s brain tumor was massive. It consumed most of the space in her brain. So much so, when they finally did the CT scan, she was in the operating room to release the fluid in her brain just 2 hours later. She had a successful full resection and underwent 6 months of aggressive chemotherapy and 3 stem cell transplants.
“We celebrated Soleil ringing the hospital’s cancer-free bell in January 2021,” said her mom. “The feeling of walking out of the unit with your warrior is nothing short of amazing!”
While in OHSU Doernbecher Children’s Hospital in Portland, Soleil and her family received free Healing Art Care Packages full of creative and lively art supplies from CHAP since, at that time, CHAP teaching artists were unable to meet the children in person due to the pandemic. Mom, Christinia, enjoyed making art with Soleil as well as getting creative on her own. “I had to keep sane,” she said. “And art was my outlet.”
When Soleil was home again, CHAP sent all three children a series of free CHAP in a Box shipments of themed art supplies. Her mom remembers marveling at the fact that a 2-year-old (Soleil), a 5-year-old, and an 8-year-old could all enjoy getting creative with the same exact art supplies in each of their boxes. “I don’t know how CHAP does that but they do,” she said.
Still able to be at home, Soleil continued to be monitored by sedated MRI’s every three months following her last cycle of chemotherapy. She maintained the status of cancer-free until last February 2022. One year and one week, from the day she rang the bell. The cancer had spread to her spine and treatment looks different now. Soleil had her second successful full tumor resection and is currently receiving chemotherapy 6 days a month and will be treated with proton radiation in the near future.
Soleil and her family are one of the thousands of children and families facing medical challenges that benefit each year from the healing power of art that CHAP makes happen. Making art of any kind has the power to reduce stress, provide an emotional outlet, create a distraction, and even bring families together. Art can provide whatever that child or family member may need at that exact moment. We’re only glad we met Soleil, her mom, and her whole family when we did so CHAP can support them throughout Soleil’s cancer journey.
Strong community partnerships are crucial to children and families going through medical challenges. One of our favorite partners is Embrace Compassion, a Portland-area nonprofit that hosts monthly opportunities for children with cancer and their siblings to have a hands-on experience at their farm that truly allows them to be kids. The children get to spend a day feeding the goats, checking on the chickens, planting a few seeds, and harvesting some goodness to take home with them.
This Summer, CHAP joined the fun at the farm a few times, giving the chance for kids to make art together. On one visit, we noticed that the goat house was painted plain white and we knew immediately that it needed some CHAPping up! So, on our next visit, we brought our paints and let the kids paint a vibrant mural on the house as the goats carefully supervised. The toughest part was keeping the curious goats out of the paint! The result was a colorful mixture of rainbows, sunshine, and flowers. There were tons of giggles, lots of laughter, and boundless creativity that day…and the goats fully approved of the results.
Unfortunately, neither CHAP nor Embrace Compassion can make these children’s cancer disappear but, when we work together, we can give the kids and their families a chance to experience joy and creativity - even for just a few hours.
During these uncertain COVID-19 times, it's more important than ever for CHAP to bring the healing power of art directly to the children we serve. So, we've been busy re-launching both in-person and virtual Art Clubs that are free for all children facing medical challenges and their siblings. It's wonderful to hear the joy and exuberance generated by the children as they enjoy getting creative together once again. Children's art-inspired birthday parties have also been popular, with guests sometimes exclaiming that it was the best birthday party they've ever been to.
CHAP has also hit the road, attending local Farmers Markets to entertain children (of all ages) and increase the happy energy with free art projects. This year, we have intentionally chosen markets in areas where historically-underserved children reside in order to ensure that the healing power of art reaches even more children who need it - regardless of their geography, race, religions, ethnicity, or any other potential barrier. In May, Congregation Beth Israel (Portland, OR) invited CHAP to attend their Mitzvah Day celebration so the children could make cards and decorate envelopes for hospitalized kids. And our new friends at a local farm that hosts monthly rural experiences for children with cancer and their families. Children get to pet the animals, pick the flowers, enjoy the on-going bubble machine, and more at the farm. They invited CHAP to brighten the families' experiences with messy, creative, farm-related art projects. It's an absolute joy for everyone!
"She's been having to spend a month at a time in the hospital," her mom shared with us. And now, during the COVID-19 pandemic, she spends hour after hour in her hospital room, often alone or maybe with one family member allowed to visit her. The procedures, the treatments, and the hours of waiting and wondering are almost too much to bear. And there are no support services like the Children's Healing Art Project (CHAP) weekly in-person healing art programs to break the monotony, give her a creative outlet, and bring her and her family the opportunity to experience the healing power of art during this incredibly challenging time. They are understandably temporarily on hold for the safety of the children.
Thousands of children in area hospital are experiencing the same thing she is going through. To CHAP, that's not OK. So, for the past 6 months, CHAP has been partnering with OHSU Doernbecher Children's Hospital to broadcast live, one-hour creative art sessions facilitated by CHAP teaching artists with great love and caring into the rooms of hospitalized children. Each week, CHAP delivers packs of carefully packed art supplies specific to the next week's broadcast directly to the hospital for staff to distribute to the children in their care. Then, at 2pm every Tuesday, the children are instructed to tune in to CHAP Creative Time and follow along as they make everything from Valentine's Day pop-up cards and mobiles to string painting and snow-globes (pictured here). "It really brings out her creative side!" adds her mom.
And what about the few months here and there that she is recovering at home? CHAP mails her boxes of art supplies and inspiring creative ideas directly to her home to enjoy! It's called CHAP in a Box and it's available to children dealing with medical challenges who are unable to safely leave their homes for medical reasons.
It's creative CHAP programs like these that continue to help children and families experience the benefits of the healing power of art, no matter where they are or what they are facing.
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