The question was, 'What would Tom do?'
From the Toronto Star May 6, 2010
It's a difficult question to ask a mother. And, you might think, impossible to answer:
How do you cope with the death of not just one, but two, of your children?
Sue Eyre looks baffled. Then she laughs, almost helplessly. Then she apologizes for laughing.
"But I don't know what to tell you," she says. "You just do. You have to cope. What else are you going to do?"
In fact, Eyre had two very different coping strategies.
She and her husband, John, were living on a dairy farm in England when their daughter, Sally, died at age 6 in 1989.
She'd battled cancer for two years and had had a kidney and a lung removed. Then the cancer moved to Sally's brain. A day after she'd been taken back to hospital, she died.
"She'd gone through so much, you can't imagine," Eyre says. "I asked if could take her home. Otherwise, I thought, she'd be in the mortuary, all alone in the cold and dark.
"I knew it was a selfish thing to do. I knew it would be valuable for them to be able to do research on her body. I felt bad but I said, 'No. Not another knife.' "
The Eyres immigrated to Canada in 2002 and lived on a farm near Orangeville. On July 30, 2006, their son Tom, 10, and his brother Jack, a little more than a year older, cycled to Grand Valley along what their mother calls a long, straight, quiet country road.
"I'd kicked them off the PlayStation," she says. "It was a gorgeous day. I said, 'Go and do something that boys do.'
"That particular day, Tom came in about six times to say, 'Bye, Mum.' I thought afterwards, why did he do that?"
As the brothers rode home, Tom's bike was hit by a truck. He died without ever regaining consciousness.
His family was at his bedside at SickKids when they made a decision that meant the difference between life and death for several other people. They donated their son's organs.
Eyre, 52, is sitting in a room at the hospital with Jennifer Berry, a registered nurse who works at SickKids with the Trillium Gift of Life Network, created to maximize organ and tissue donations for transplant. It's Berry's job to approach parents of critically ill children to explain the options available and offer them guidance and support.
She and John's mother leaf through an album of family pictures that Eyre has brought from their home in Belwood, southwest of Orangeville.
Tom, says Eyre, "was a great kid, so fit and healthy. He put 110 per cent into everything."
He and Jack learned to skate and played hockey, lacrosse and rugby together. Tom was a budding entrepreneur, too, who had his own chickens and sold the eggs.
Eyre recalls Berry that day as "this lovely, lovely, lovely person and not pushy at all. She made suggestions."
When the question of organ donation came up, Eyre says, "I can't say it was so nice. But it was nice, the way Jennifer did it. All the family was together. We were all on the same page. We said, 'What would Tom do?'
"Tom was always really good at sharing. We thought, this is a huge gift that he can give. This is what he would want.
"And it was an awesome thing."
Berry chimes in: "You said, 'Tom would think this was so neat.' "
"Jen went off to make some phone calls," Eyre recalls. "I could imagine people saying, 'Guess what, we've got a chance,' and flying into Toronto.
"The death of a child has to be the most devastating thing that can happen to a family. But this brought something positive into a negative and bleak situation.
"I know I'm strong," she continues. "I hope I'm not hard. I don't think so. That day was hard. It changes you completely. It makes you re-evaluate things.
"I'm not materialistic at all. I don't care what car I drive or what I'm wearing. People matter. Their lives matter."
No one seems sure exactly how many people benefited from Tom's organs. One person received his liver, small bowel, pancreas and stomach. His lungs, kidneys, heart valves and corneas were also donated. Two organ recipients have since died.
Tom's brother Jack is now 15. His sister Jayne is 28 and his brother, John junior aka "John-Boy, like The Waltons," their mother says and is 24 and farming in England.
Every time a suitable organ recipient was found, Berry made sure Tom's family was told.
"You said something I've never forgotten," she tells Eyre. "You looked at me and said, 'I know this is not the reason for Tom's life but it might be the reason for his death.' "
A special conversation
When she's on call and her pager goes off, it doesn't matter if it's 3 a.m. and she's been dragged from a deep sleep, Jennifer Berry has to be wide awake and ready to guide a grieving family through a vital decision.
Berry, 33, is one of only 19 people in Ontario whose job it is to explain the option of organ and tissue transplant from their loved one.
In her case, it's with the parents of critically ill children.
"I don't think originally I'd have picked pediatrics," she says. "But now I wouldn't want to work anywhere else."
She came to the job at SickKids five years ago, after working for two years in the same field in Columbus, Ohio. She's been a registered nurse for 12 years.
There's no script for this kind of task.
"I don't know going in exactly what I'm going to say," Berry explains. "It's a conversation. It's not just about information-giving.
"This is someone's life, someone's loved one at a time when all the decisions, all the control has been taken away. I want to empower them and give them control over something. Even if their answer is no. "An informed 'no' is as important as an informed 'yes.' "
Berry says not a lot of families refuse. "But it does happen. There are a lot of factors at play. I've had some conversations and walked away and thought, 'yes, that was the right decision for that family.' "
After working in intensive care in Kingston, Berry did "travel nursing" and short-term contracts at hospitals in the United States. She landed the job in Columbus almost by accident.
"I wasn't even sure where Columbus was," she says. "But I started and it just fit. It was another avenue of saving lives.
"I was terrified at first. The last thing you want as a human being is to cause further suffering. But then I realized that the worst has already happened. Talking to the family is not the worst thing.
"All the same, my very first time, I was so nervous. The grandfather of the person slapped me on the arm and said, 'Speak up, dear. I can't hear you.' "
For more information on the Trillium network, visit giftoflife.on.ca.
http://www.parentcentral.ca/parent/familyhealth/sickkids/article/804512--the-question-was-what-would-tom-do
[ Posted on Tuesday May 18 - 9:10 am ]
Latest news
The question was, 'What would Tom do?'
From the Toronto Star May 6, 2010
It's a difficult question to ask a mother. And, you might think, impossible to answer:
How do you cope with the death of not just one, but two, o...
[ More... ]
OETSG Bike Donation to TGH
OETSG presented a cheque for $6000 to the Transplant Unit Treadmill Room at Toronto General Hospital. The money was used to buy a bike for physiotherapy and an Oxometre to monitor pre/post transplant recipients while th...
[ More... ]
65_REDROSES on CBC
65_REDROSES will Premiere on THE PASSIONATE EYE on CBC News Network (formerly CBC Newsworld) on Monday, Nov.16 at 10pm ET/PT.
For 23-year old Canadian Eva Markvoort (aka 65_redroses, her online pseudonym), the clock i...
[ More... ]