Members of Charlie Waller’s family and volunteers at the art show and auction, held June 22 at Dublin Square Irish Pub, 327 Abbot Road, speak about how the community has come together to support Charlie. Charlie was diagnosed with diffuse intrinsic pontine glioma, a rare form of brain cancer, on April 1. He turned 3 years old June 15.
Editor’s note: This is part two of an ongoing series on Charlie Waller’s struggle with cancer. Keep Checking The State News for updates on him and his family.
When John and Abigail Waller first were told their son was diagnosed with a rare form of brain cancer, they didn’t expect to have food brought to their house every day.
They didn’t expect nurses from Lansing’s Sparrow Hospital to bring their son, Charlie Waller, animals every day after his radiation treatment.
They didn’t expect more than 30 volunteers to help organize a charity art show and auction to help pay for medical expenses, family trips and other cancer charities.
They thought they would be isolated by the tragedy because often people don’t know what to say, so they don’t say anything, said John Waller, a Lyman Briggs associate professor.
But since Charlie’s diagnosis, family, friends and other community members have rallied to help John, Abigail — a field liaison and partnership coordinator in the MSU School of Social Work — and their daughter Esther Waller make the most of their time with Charlie, John Waller said.
“From our point of view, it’s vital to bind people around Charlie,” he said. “His parents will need the support, and also his sister (will).”
A community in the hospital
Although Charlie’s daily visits to Lansing’s Sparrow Hospital for radiation are over, he still meets with doctors regularly to monitor his health and the progress of the diffuse intrinsic pontine glioma, or DIPG, growing in his brain stem.
At the hospital, nurses, pharmacists, oncologists and other medical professionals are assigned to help Charlie, said Stephen Guertin, medical director of the Sparrow Children’s Center and MSU associate professor in the College of Human Medicine.
“There’s an entire spectrum (of medical professionals) that touch Charlie every time he’s here … all of which are touched by him,” Guertin said. “That’s sort of the hidden aspect of that.”
The determinedly positive approach of the Waller family and Charlie’s rambunctious personality make them “particularly easy to like,” Guertin said.
Doctors and nurses who care for Charlie quickly established a bond, he said.
“Nobody comes here and stays a stranger; nobody comes here and doesn’t have a whole team that just envelops them,” Guertin said. “You create a community for them — you create a community in the hospital.”
After Charlie’s diagnosis on April 1, doctors recommended the Wallers speak with Sandy Smith, a DeWitt, Mich., resident whose son died of DIPG in December 2009.
“Most parents … have such a desire to be there for the other families because they know how hard it is,” Smith said. “They want to be there to give support to other families. I definitely feel that way.”
Smith has been in touch with the Wallers and other families dealing with DIPG. Because of the rarity of this type of cancer and its quick effect — children with this type of cancer typically don’t live more than a year after their diagnosis — impacted families join together to cope, she said.
For Smith, passing on her knowledge of the disease and being a resource for other families is her way of giving back.
“I know how hard it is to wonder how long your child is going to live and even how your child is going to die,” Smith said. “We say things like, ‘I wish I could change this for you, but I can’t.’ At least I can offer understanding.”
Strengthened through hardship
Charlie’s illness has reconnected the Wallers with friends and family, John Waller said.
Now, John Waller’s mother visits regularly from England and is developing a relationship with Charlie, Abigail Waller said.
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Earlier this year, Abigail Waller’s parents moved to Michigan from Raleigh, N.C., to be closer to their grandchildren.
For the Wallers, their support has been instrumental. To Richard Graham-Yool, Abigail’s father, it means being a day’s drive closer to his family and being able to help organize fundraisers.
“With the tragedy of Charlie, we’re awfully glad we are here,” he said.
Friendships have strengthened through hardship, John Waller said.
“Close friends have become extremely close friends,” he said.
For Shannon Harkins-Padgitt, helping the Wallers is a “no-brainer,” she said.
Harkins-Padgitt is a family friend of the Wallers who helped organize a charity rummage sale for them in May.
Esther, 7, often plays with Harkins-Padgitt’s daughter.
“It just feels like a natural support,” she said. “They know our whole family is there for them on the good days and the bad days.”
When Stacey Messina first read about Charlie, “It hit a little too close to home,” she said.
Messina had never met the Wallers, but Charlie’s story struck her. She learned about his diagnosis on her daughter’s third birthday. Charlie turned 3 years old June 15.
For Messina, it was a sign to help.
Among more than 30 volunteers, Messina helped set up and organize the charity art show and auction yesterday at Dublin Square Irish Pub, 327 Abbot Road.
Working with the Wallers has taught her “something important about life,” she said.
“I’ve been spending more (quality) time with my daughter,” Messina said. “(I’m) trying to spend every moment that I can having fun with her.”
A bigger impact
To John Waller, the art show and auction was more than a way to raise money to help Charlie and other families suffering from DIPG: It meant bringing the community together.
The family is considering holding the event every year as a memorial for Charlie, John said.
“It’s ultimately going to be a very positive way of remembering (Charlie),” he said. “(It has) a very practical importance (and) also a very powerful community (impact).”
Despite their differences, members of the community have found unity in Charlie’s story, Abigail said.
“What we have in common is being human,” she said.
For more information and ways to help, visit friendsofcharlie.com
