When a child has cancer: One family's advice to other parents
January 29, 2014 | by Roberta Nichols
Gavin Wolfrank was only 7 months old in 2006 when his mother noticed the “blueberry” bruises on his tiny hand. Her normally active, happy baby suddenly turned lethargic and inconsolable. Ultimately, he was diagnosed with acute lymphoblastic leukemia.
That diagnosis was the start of a years-long ordeal, not just for Gavin, but for parents Ken and Diana, as well as sister Emma. Gavin soon began chemotherapy at a local hospital, ultimately going into remission. He stopped chemotherapy in June 2009, but by the following October, the disease was back.
For the fourth time, he underwent chemotherapy – this time to make him strong enough to endure his only chance at survival: a bone marrow transplant.
A donor was identified in February 2010 – a young woman from England named Catherine “Cat” Benson – and by the time Gavin walked into City of Hope in preparation for the bone marrow transplant in March 2010, he was as strong and healthy as he had ever been. But the family’s elation over finding a donor soon turned to fear, with Gavin forced to battle graft-versus-host disease.
Steroids to counteract the condition caused his body (particularly his head) to balloon, and after a fall, he stopped walking. Because his legs began to wither, his parents carried him everywhere, something of a feat given that he weighed 75 pounds and was eating “like a fiend.”
At long last, the cells began to work, the grotesque swelling subsided and the couple began to recognize their little boy again.
These days, the Wolfranks enjoy the novelty of normal family life. Emma is a 10-year-old fourth-grader, and Gavin is an 8-year-old second-grader who likes science and math. “He’s a little numbers cruncher,” said Ken. “He’s fitting in, finding his place and has all kinds of friends,” said Diana.
The former patient has been off medications for nearly three years now, and is powered by a miracle fuel. “Gavin,” said Ken, “is running on donor.”
We recently asked Ken and Diana Wolfrank to look back at the time of their son's diagnosis and ask themselves, "What do you know now that you wish you'd known then? What wisdom, soothing words or practical tips would you give to other parents whose child has cancer?"
Decorate your children’s hospital room and keep their imaginations stimulated.
“Ken made the room fun,” said Diana. He and Gavin's sister Emma spray-painted the shower curtain with trucks, happy faces and upbeat messages, and brought in decorative touches such as a giant Spider Man and Gavin’s stuffed monkey, “Extravaganza.” “I don’t know if people know how to spruce up their room. It does help brighten things up.”
Instead of letting Gavin watch endless television, his parents improvised distractions such as transforming the room into a fort, T-ball field or Legoland. When Gavin could venture outside, they carried him and his decorated IV pole out to the Rose Garden, where he played with his remote-control trucks. They had him make lists of what he’d do once he was well, like seeing NASCAR and having pizza.
Work as a team.
“Our attitude was ‘Whatever is required of us we’ll do it,'” said Diana. “It’s hard to go to the hospital at 2 a.m. but if they told us to do something, we’d do it. We were always a team.” When it came time to administer medications, “Emma would sing to him, I would hold him and Kenny would poke him. We’d say, ‘This isn’t fun, but let’s just do it.' It’s painful for parents to have to do this, but we stayed positive and wished for the best. It’s helped us remain sane and close. If we could find humor in serious situations, it helped us as a family. It has served us well in the big picture and we know that things could be very different. We live with that, too. But they’re not."
“Our children are still little, but they did a good job dealing with all this stuff,” said Diana. “Emma was 2 when this all started,” said Ken, and she spent much of her life in the vortex of her brother’s illness. She’d play puzzles with Gavin, watch endless replays of "The Chipmunks" movie with him, serve as his translator when no one else could understand his mumbles, and sit on the floor as he sat in the bathtub, playing farm with a “whole bunch of little plastic pigs. We’d wash them off and there were pigs everywhere,” Emma said.
“They have been very close,” said Diana. “She looks out for him, and I appreciate that. We need her to."
Question your child's caregivers.
The Wolfranks vividly remember hearing that their baby had leukemia – news delivered from a doctor who was brutally honest. Another doctor soon entered the room, patted Gavin’s head and told his terrified parents, “Don’t worry. Everything’s going to be OK."
“Even if you’re lying, thanks, I’ll take that,” Ken recalled thinking.
When they came to City of Hope and Anna Pawlowska, M.D., ran down the potential side effects of the forthcoming transplant, Ken asked, “Does anybody make it?’ The doctor assured them that many children survive.
"It was comfortable,” said Ken. “I could ask questions. I took a liking to Dr. Pawlowska right then.”
“I enjoyed doctors sticking their heads in just to say ‘Everything’s cool?’ It felt good when they told me his numbers were good. It got me through another day. I didn’t need a long visit – I needed to know if we were thumbs up or thumbs down.”
“Knowledge is powerful,” added Diana. “For doctors to explain things to you so you understand makes you feel better and know what to expect.”
“We think attitude has everything to do with how you deal with this,” said Diana. “Ken would say, ‘Look, Gavin doesn’t get a choice. We don’t get a choice.’ We kind of kept reminding each other of that. We take each day as it comes. We are very, very thankful and know how blessed we are. If we’re stuck in traffic, we say, ‘You know what? We’re not in the hospital. Life is good. We can handle this.’”
Gavin’s attitude also helped. “He was miserable but never said, ‘I don’t want to be here.’ That helped us get through the next day, the next moment,” said Diana. “He’s always had such a wonderful spirit. He’s just – happy. I’ve never seen anybody so sick just deal with it with such grace and such spirit.”
“We were lucky,” said Ken. “I suppose it boils down to looking at others and appreciating that their struggle is very difficult – and sometimes a lot harder – and that makes whatever position you’re in doable. Everybody’s got some issue. It’s gigantic to you, but compared to somebody else, not that big of a deal. Look at us today. We sitting here stylin.’ We’re good. If it all changed tomorrow, so be it.
“But today is great. And that’s much better than a lot of people we know. We still keep in touch with parents who lost their kids. They’re cool; they’ll ask, ‘How’s Gavin?’ There’s a mutual looking out for people [among parents who have survived cancer]. “I hope everything’s going well,” they’ll say.
“Today it is,” said Ken. “And I’ll take it.”
Watch the video "Gavin's Wish," about Gavin's desire to meet his bone marrow donor.
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