Updated: Wednesday, December 20, 2017, 11:03 AM
Ten years ago, when Cindy Kerr’s teenage son, Ryan, was in what would turn out to be the final stages of a five-year battle with bone cancer, she decided to do something to brighten the lives of other children like her boy.
So Kerr and husband Gavin started Ryan’s Case for Smiles, a charity inspired by the cheery pillowcases they would bring to Children’s Hospital of Philadelphia to brighten up their son’s room. Nearly a decade later, their nonprofit has grown to 120 chapters in 360 hospitals, with more than 1.6 million volunteer-sewn pillowcases distributed to children throughout the U.S. and Canada.
Cancer wasn’t done with them, however: Last summer, Kerr, 60, discovered she, too, had the disease. Earlier this month, she had surgery to remove a tumor the size of a casserole dish from her abdomen.
The Kerrs’ second brush with cancer did not deter them from their mission; in fact, it’s only increased their resolve to help families like them. This month, the Wayne couple launched Coping Space, an extensive online resource for parents and children dealing with serious illness and for the family and friends who want to help them.
“Having spoken with hundreds of families whose children are facing life-changing illnesses and injuries, I know they also struggle with overwhelming stress and worry,” Kerr said.
The goal is to help fend off post-traumatic stress disorder, which strikes many families like theirs. Experts from the Center for Pediatric Traumatic Stress at CHOP and Nemours/Alfred I. duPont Hospital for Children provided research and strategies for the site.
Often when a child is in the grips of something like cancer, parents are so focused on the young patient they neglect their own well-being. Kerr said she was one of them.
Nearly a decade after losing her son, she still experiences some of the symptoms of PTSD. If Gavin, a former executive of CHOP and Inglis House and now an executive mentor, is late coming home or if she doesn’t hear from their grown daughters for a few days, Kerr said she becomes fearful that something bad has happened.
An estimated 42 percent of mothers of cancer patients develop PTSD symptoms, according to research by the Center for Pediatric Traumatic Stress. Only teenage cancer sufferers are at a higher risk, at 49 percent.
Siblings of the sick child can suffer such symptoms, too. The Kerrs said that for their older daughter, now 33, it took almost 10 years to quell the sense of dread she felt every time her parents called.
When age appropriate, the Kerrs say, parents should try to keep kids appraised of what is going on with their sick sibling. They thought they were protecting their two daughters by withholding some details about their brother’s illness, but the girls resented not being told.
Kerr said she and her husband have tried to keep their daughters informed about her own illness, even though it hasn’t always been easy.
“The first thing I thought when I woke up and they told me I had cancer in August was, ‘Oh my God, I can’t believe my girls and my husband have to go through this, because it’s just so hard on the family,’ ” Kerr said.
Small acts of kindness
Coping Space offers many suggestions for how friends and other family members can help. The Kerrs say time is the most valuable gift a person can give. Offer to sit with an ill child at the hospital so the parents can do something with their well children. Walk the family dog.
Acts of kindness, no matter how small, can make all the difference.
Earlier this month, Kerr returned home from surgery to find neighbors had decorated her home for Christmas. A wreath hung on their door, bows adorned lantern posts, and candles were in the windows.
“It was huge,” Kerr said. “I was in pain, and it just meant so much that someone would do that for me.”
And don’t forget about the well siblings, who often get overlooked. This time of year, people often come bearing gifts for the child who is in the hospital.
“Bring stuff for the siblings, because they’re going through this, too,” Kerr said.
In the new year, the Kerrs plan to launch another initiative called Caring Boxes, which will be packed with playthings and coping suggestions for young children who have siblings with a serious illness.
Even when hope turns to grief, family and friends can make a difference. One of the worst things well-meaning friends can do, the Kerrs said, is to stop talking about the deceased.
Two years after Ryan died, Kerr ran into a woman whose children had gone to school with her son. The other mother told her that she still had Ryan’s photograph on her refrigerator; he had so touched her children.
“That was the best gift she could have ever given me,” Kerr said, “ because I knew he was still in people’s hearts.”
‘What do you do with his stocking?’
The Kerrs know this time of year can make illness and loss especially hard for families to bear. The first Christmas after Ryan’s death was full of emotional land mines.
“How do you sign the [Christmas] cards?” Kerr remembers asking herself. “What do you do with his Christmas stocking?” The answer for the Kerrs — and, they stress, each family has to find what is right for them — has been to hang Ryan’s stocking with the rest of the family’s, with a note by Kerr tucked in, telling him what the family has been up to that year.
It is one of the many ways they keep Ryan in their lives.
They often think back to Ryan’s last Christmas at home in hospice care. The gifts that year were last minute; the Kerrs weren’t sure Ryan would make it to the holiday, but they strung his room with lights, and the whole family gathered. Ryan told them it was “the best Christmas ever.”
For this Christmas, the family will gather again, including a little granddaughter who brings the family so much joy. Kerr, who still has another round of chemotherapy ahead, wonders what the future may bring.
“It’s certainly crossed my mind,” Kerr said. “Is this my last Christmas?”
She has no answer to that question. But what she does have is the memory of what Ryan told her he loved most about his last Christmas:
“The love of family and friends. That’s the most important thing in life. None of the other stuff matters.”