How Camp Out From Cancer care packages give kids a break from dealing with disease
In June 2011, Isaac Parris was just finishing up kindergarten and looking forward to a summer of fun.
But then the headaches started.
Isaac's mom, April Schippers, said they waited it out about a week and half, using ice and heat to see if it would alleviate her son's pain. Then, after multiple days of various doctor's appointments, a CT scan revealed a mass on his brain. Medulla blastoma, the most common form of childhood brain cancer.
Schippers, of Oswego, said Isaac was admitted into Rush-Copley Hospital in Aurora and then taken by ambulance to Advocate Lutheran General in Park Ridge. They found out his diagnosis on a Wednesday and he was in surgery by Friday.
"Our pediatrician told us because she didn't want us to hear from a stranger," Schippers said. "Even when she told me they found a mass, I don't really think I heard it 100%. I was naive. I thought they would do surgery, remove this and he will be fine. They said the mass was small and in a good location. Those were words I held onto."
After the surgery, Isaac took a few months to recuperate before starting radiation treatments in July 2011 to his brain and spine at the Northwestern Medicine Proton Center in Warrenville, which had just opened its doors in October 2010.
"It was very new. They said if it hadn't been there, we would have to had to go to Boston for his treatments," Schippers said.
Isaac endured daily radiation treatments, Monday through Friday, which also required him to be sedated.
"He would go to first grade every day and sleep half of the day at school. But we felt it was important to make everything as normal for him as we could," Schippers said.
In all, Isaac received 30 cranial and spinal proton radiation treatments and nine rounds of chemotherapy.
"He's a champ," Schippers said. "He was amazing, never in a bad mood. He hated his port, but he was amazingly resilient."
Isaac finished his chemo treatment in August 2012, and so far there is still No Evidence of Disease.
Schippers said that despite all of the worry, the worst thing that happened to the family also brought so much goodness.
"I know it sounds strange to say, but that year was so joyful. The worst year of our lives was also the best. We learned to live in the moment and stopped stressing about the small things. I swore we would never go back to living that stressed out lifestyle.
"So many people helped us. Complete strangers went above and beyond to help him."
So the family decided to pay it forward with their Camp Out From Cancer Foundation.
In June 2012, Isaac and his family returned to Lutheran General, as had now become tradition, to thank the doctors and nurses who had cared for him. This time, though, he came armed with care packages he had put together for kids who were also fighting cancer.
Schippers said that while Isaac was being treated he would receive gifts that maybe weren't always practical to keep, but she hated throwing them away because people were kind enough to give them.
The family wanted to give items that were practical and could be used in the long term. So they came up with the idea for tents.
Since Isaac was a minor, he couldn't enter the pediatric oncology wing. But a child life specialist at the hospital found a family that was willing to meet Isaac in the waiting room.
Five-year-old Sydney arrived with her mask and IV pole. She had recently been diagnosed with leukemia. Her family had yet to tell her.
Schippers said that Isaac, who is usually reserved, sat down to talk to the little girl. They commiserated about their ports, and Isaac even showed her the scar from his.
After the family went back to their room with the care package in hand, the child life specialist returned with a photo of Sydney smiling in her new tent.
"We just wanted to let the kids know we see you, and hopefully bring a little sunshine," Schippers said. "I never planned for it to become a foundation."
But seven years later, COFC has distributed 1,158 packages, working with Central DuPage Hospital in Winfield, Lutheran General and Comer Children's Hospital. The family also sends packages nationwide.
Isaac hand packs everything with the help of his sister, Ivy, 14. The kits include an indoor popup tent, S'mores Goldfish, glow bracelets, a lantern, books, reusable bag, and "I am Brave" socks from Notes to Self.
Ivy decided that siblings deserved recognition too. Ivy was just 4 years old when Isaac was diagnosed, and she spent a lot of time with friends and family while her mom tended to Isaac's needs.
"She was such a little mother back then," Schippers said. "She felt like she needed to be that strong one to hold it all together."
Each sibling now receives a $10 gift card so they can buy something just for themselves and a special encouraging message from Ivy.
Schippers said that she keeps in touch with some of the families who receive the kits.
"They become like family to us," she said. "We have bonded in ways many people can't understand."
Rose Roeder, then 2, found solace in the tent she received from Camp Out From Cancer. "It was really just a spot for her," said her mom, Emily. "We called it 'Rose time.' When Rose was having a bad moment, that's where she would go to escape everything."
- Courtesy of Emily Roeder
The Roeder family of Elk Grove Village is grateful for what COFC does. In January 2014, their then 2-year-old daughter Rose was diagnosed with Acute Lymphoblastic Leukemia.
The family was at Advocate Children's Hospital in Park Ridge when they met Schippers, who set up a table during a fair hosted by the Child Life organization.
"April was super friendly and charismatic," said Emily Roeder, Rose's mom. "I was so excited to see what she had to offer. I thought it was the best idea. It's hard to provide comfort and joy in the hospital."
Roeder said it was perfect timing when the tent arrived.
"It was a particularly tense chemo time," she said.
But Rose lit up when she saw the tent put together and all the other goodies that came with it. Within 24 hours she had it set up in the living room with her favorite toys and pillows.
"It was really just a spot for her. We called it 'Rose time.' When Rose was having a bad moment, that's where she would go to escape everything."
Seven years later, Roeder says the tent is still heavily used and remains a favorite spot to get away.
"They've put together this incredible program. It goes beyond just a token or a toy. It fills a real need for the emotional well-being of the child. We received a lot of gifts and resources, but that tent has been the most impactful," Roeder said.
Which is why Schippers and her family keep doing what they do. They manage to get the packages out through donations, like Giving Tuesday, which this year is Tuesday, Dec. 1, and on their website, campoutfromcancer.com.
"I am a huge proponent of not asking for donations," Schippers said. "I want it done in a meaningful way."
Isaac has also been the national ambassador for St. Baldrick's.
"That gave us a chance to give back to the research side," Schippers said.
Although Isaac's journey is far from over -- there are numerous side effects from his treatments and he still must continuously see his doctors -- Schippers is grateful for her son's continued good health.
"It never ends," she said. "It is never done. But he has such a good attitude. He's all in, so we have to show up, too."
For more information about Camp Out From Cancer, or how to send a care package, visit campoutfromcancer.com.
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Camp Out From Cancer Foundation
What: Camp Out From Cancer is a nonprofit foundation that sends camping-themed care packages for an indoor camping adventure to children who are fighting cancer.
How you can help:
• Follow Camp Out From Cancer on Facebook, Twitter or Instagram
• Share your own story
• Plan a fundraiser
• Make a donation
• Send a care package to a friend or loved one
Details: Email firstname.lastname@example.org; visit campoutfromcancer.com.