Saturday, November 17

Patients, families find hope in Chase Child Life Program at Mattel Children’s Hospital


48751_web.ns.4.30.sh.program.picbo.jpg

Isaac Arjonilla


Courtesy of CLARE SUOMI

In this 2011 photo, Grace Suomi, a patient in the Chase Child Life program, runs at Bruin Run/Walk two days after her last chemotherapy session.

Grace Suomi ran in the Bruin Run/Walk for the first time last year, just two days after finishing her last session of chemotherapy.

She was 6 years old.

Her parents were very cautious. She had just come out of the hospital, and her blood counts were fluctuating. So her father began the race walking her in a stroller.

But that wasn’t good enough for her.

She got out of the stroller and started running in her pink polka dot rain boots. Her father tried to put her back in the stroller, but it was no use. She kept getting up. She wanted to run the race on her own.

Last Sunday, Suomi came back to the Bruin Run/Walk ““ this time with no stroller in sight.

“This year, she wants to run because she can,” said Clare Suomi, Grace Suomi’s mother.

Grace Suomi is one of several sponsored children who participated in the 13th annual 5K Bruin Run/Walk. They all have one thing in common: Their lives were changed by the Chase Child Life Program at UCLA’s Mattel Children’s Hospital.

The program, which is the beneficiary of the annual Bruin Run/Walk event, aims to provide a supportive space for both infant and young adult patients alike where they can participate in activities ranging from arts, crafts and games.

“(It’s about) giving them opportunities to be doing things they should be doing,” said Hilary Gan, a child life specialist in the program. “This is not typically where kids should be.”

Mario Magaña Jr., 11, was another sponsored child at the Bruin Run/Walk. Magaña spent about a month in the hospital for surgery for ulcerative colitis.

Had it not been for Chase Child Life, he said he would have stayed in his room and simply watched TV. With Chase Child Life, he was able to go outside of his hospital room, play games, make art and feel more welcome.

Magaña said he ran in Sunday’s race to thank everyone who donated for him and the Child Life Program for being there for him.

“I will continue to show my appreciation for the Child Life Program and show that I do care for everyone at the hospital,” Magaña said. “I want everyone to feel like the way I did: loved and cared for.”

The program, which was originally established in 1968, was renamed last year after it received a $2.125 million donation from the Chase Foundation created by Robin Richards in memory of his son, Chase, who lost the battle to cancer when he was 2 years old.

Richards, who spoke at the Bruin Run/Walk on Sunday, has been working to support child life programs like the one at UCLA for 20 years.

A child life program like UCLA’s supported him and his family when his son was diagnosed with cancer.

“Most of the parents who come to the (Chase Child Life Program) will tell you that, other than the actual medical care, it is the single most important thing that holds their family together,” Richards said.

To provide support to patients, child life specialists also help educate patients and their families about the medical procedures they will undergo, Gan said. A specialist is assigned to each long-term patient and stays with that patient for as long as he or she is at the hospital, which can range from a couple of days to several months.

“The hope is, with education, preparation and support, we reduce anxiety and promote positive coping strategies,” Gan said.

Grace Suomi was just 5 years old when she was diagnosed with Ewing’s sarcoma, a type of bone cancer.

The first day Clare Suomi brought her daughter to the Mattel Children’s Hospital for treatment, Gan was standing in Grace Suomi’s new room, waiting for them to arrive. Gan helped Grace Suomi get settled and showed them around the hospital, including one of Chase Child Life’s playrooms, a colorful room with walls bursting with countless board games and toys.

Gan stayed with them the entire day.

“I could remember it like it happened yesterday,” Clare Suomi said. “It was the worst time of our lives, but they treated us so well.”

Ever since then, whenever Grace Suomi had to go to the hospital, Gan and Child Life were there to help take her mind off her cancer.

The specialists do not perform exams on the patient ““ instead, they explain to the child in understandable words what is going to happen to them using visual tools, like dolls.

A plastic doll that represented Grace Suomi’s body had multiple chemotherapy cords coming out of it.

“(The program) educated me and helped me explain to Grace that, all of a sudden, we’re in the cancer world,” she said.

Clare Suomi asked Gan to be there with her to help tell her daughter that she had cancer, that she would lose her long blond hair and what would happen to her body during surgery. Together they shaved her daughter’s hair as it was falling off in tufts.

“That’s where Child Life really comes in and becomes a part of your family,” Clare Suomi said. “I came to find out very quickly how incredibly important Chase Child Life was, is, and forever will be in our life.”

Grace Suomi will have reached one year of post-chemotherapy on May 13. She is now back in school and is still friends with Gan.

Share on FacebookTweet about this on TwitterEmail this to someoneShare on Google+Share on Reddit

Comments are supposed to create a forum for thoughtful, respectful community discussion. Please be nice. View our full comments policy here.