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Jack Knox: Families of sick kids live with worry — and hope

Sep 21 2012

Madrona Fuentes was just over a year old when the fevers began this May. For a couple of weeks, they would come and go, come and go.
When the baby’s lips turned pale and she stopped breastfeeding, mother Michelle Purvis-Fuentes figured enough was enough, and took her to the ER.
“I thought they were going to call me a melodramatic mom,” the 35-year-old Victoria woman says.
Instead, after the blood tests came back, a doctor closed the curtain and broke the bad news: acute myeloid leukemia.
Mother and child found themselves being rushed by helicopter to B.C. Children’s Hospital in Vancouver.
That was June 5. They have been there ever since, living in a 12-by-12 hospital room.
“Madrona just finished her third round of chemo,” says Michelle, on the phone from B.C. Children’s.
The treatment is brutal, poisoning good cells with bad, but has been doing its job. And — a great relief — they found a cord-blood donor, a tough match for a child with a mixed racial background. That opens the door to a stem-cell transplant on Oct. 15.
“One hundred days after that, we get to go home,” Michelle says.
Only there might not be a home to go to. With the baby’s immune system compromised, the family knew they would have to replace mouldy windows and install a ventilation system in their Victoria home. A contractor stepped up to help, but then found mould in the walls. The hill became a mountain.
The family will move out this week, don’t know when, or if, they’ll be able to return, or where the money will come from. Mom gave up running her daycare when she climbed on that helicopter. Dad Rafael Fuentes took leave from his youth-corrections job, shuttles back and forth with their 41⁄2-year-old son. They’re chewing through their savings quickly.
Michelle’s friends from her Frontrunners running group have stepped in, organized a fundraiser at CFB Esquimalt’s Ward Room this Saturday, Sept. 22. Dinner, silent and live auctions, dancing, all for $30; call Sandy Perry at250-213-5658 for tickets. Michelle is always volunteering to help others, Perry says, so it’s time to help her.
Wish this were the first time we had heard this story, but it isn’t. Several times a year, a Vancouver Island child gets sick with cancer and a normal family life is turned upside down.
One parent, usually the mother, has to quit work and move to Vancouver, living in the hospital or Ronald McDonald House or somewhere similar. If the family has more than one young kid, the father has to quit work, too. The bills keep coming in at home, mom lives on cafeteria food, dad’s ferry fares mount and the rainy day fund runs dry.
We all know a story like that, which is why the annual Cops for Cancer Tour de Rock has been such a success, raising $16 million since 1998. The fight against pediatric cancer is an easy sell when you can picture the child’s face.
The 15th edition of the Tour de Rock begins this Saturday, the 17-member team rolling out of Admiral’s Walk shortly before 9 a.m. They’ll drive to Port Alice, then spend two weeks cycling more than 1,000 kilometres south.
Most of the riders are Vancouver Island cops, as usual, but among them will be Saanich’s Matt Webb, living proof that clouds can have silver linings. Diagnosed with Burkitt’s lymphoma three months shy of his fourth birthday, Webb grew up as a Tour de Rock junior rider, one of the cancer-stricken kids who join in team events. Now a healthy, happy 20, he’s riding the tour itself, a reminder that progress is being made; the Canadian Cancer Society says the five-year survival rate for children stricken with cancer has risen to 82 per cent.
That stat is a little misleading, though. It doesn’t talk about the lasting side-effects of cancer treatment, which can include organ damage, hearing loss, infertility and more.
Nor does it talk about how the disease can rip a family apart — or pull it together.
“We have learned a lot about ourselves, definitely strengthened our relationship, for sure,” Michelle says. “My husband and I have both adapted, jumped on a new train.”
It would just be nice to know where that train is going.