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Jack Knox: Parents keep hope alive for sick toddler

Madrona Fuentes turned two on Monday — too young, mercifully, to understand the doctors’ prognosis. “They say she’s not curable,” says her mother, Michelle Purvis-Fuentes.
Baby Madrona.jpg
MadronaÍs struggle is over. The beautiful little girl will suffer no more pain, which is why her parents speak of feeling peace not anger, of thankfulness not resentment.

Madrona Fuentes turned two on Monday — too young, mercifully, to understand the doctors’ prognosis. “They say she’s not curable,” says her mother, Michelle Purvis-Fuentes.

Michelle and Rafael Fuentes, Madrona’s father, got that news a couple of weeks ago, only days after mother and child had returned to Victoria from B.C. Children’s Hospital, their home for the previous eight months.

Now the family is anxious to move back into their real home, the one they had to abandon last fall after it was found to be ridden with mould. Thankfully, a white knight has appeared to help them with that.

And no, the parents are not giving up on their little girl. “We still have our eyes on hope,” Michelle says.

The first sign something was wrong came last May, when Madrona suffered a series of fevers. When the baby’s lips turned blue June 3, her mother took her to the Victoria General ER.

Michelle expected to be dismissed as a melodramatic mom. Instead, blood tests showed acute myeloid leukemia. A helicopter rushed both of them to B.C. Children’s, where life was reduced to round after round of chemotherapy and a 12-by-12 room.

Back in Victoria, Rafael, knowing Madrona’s immune system would be compromised, moved to replace mouldy windows and install a ventilation system in their house. A contractor volunteered to help — only to discover, as walls were ripped apart, that the mould was much worse than thought.

Vancouver Island families of children with cancer usually face financial hardship — one parent has to move to Vancouver for several months, while the other gives up work to care for the kids here — but the blow to the Fuentes family was staggering: their house needed $200,000 worth of repairs.

Rafael, on leave from his youth-corrections job, moved into a rented bachelor suite with their 41/2-year-old-son. With some breaks from local businesses and weekend help from a brother from Nanaimo, he tackled the renovations himself. Rafael and Michelle were determined to give their kids a real family home.

Good news came when a cord-blood donor was found — a long shot for a child of mixed ethnic background. Madrona received a stem cell transplant Oct. 22. After waiting another 100 days, mother and daughter were given the OK to return to Victoria and that cramped bachelor suite. The signs were promising.

That was three weeks ago. Two weeks ago, tests came back with devastating results: Madrona had relapsed. Doctors told the parents what they might expect, based on similar cases. In one example, the child lived two months, in another, eight.

Right now, Madrona is being weaned off steroids, the idea being that a revived immune system — it had been suppressed to increase the chances of the transplant working — could allow good cells to attack bad. Michelle and Rafael have also turned to traditional Chinese medicine. They are not surrendering.

They have good friends, many of whom volunteered at a work bee at the house last week. Then, a couple of days ago, Home Depot waded in, shooed the amateurs away, and said it would have real pros finish the renovations at no cost.

“It’s phenomenal,” Michelle says. “I’m so grateful.”

Friends from Michelle’s running group have shifted their focus to the family’s now-drained finances, organizing a March 2 event called the Run For Madrona. Participants can run or walk distances of one, five or 12 kilometres, beginning at 8 a.m. at the downtown Frontrunners store. Entry is by donation. For information, contact Sandy Perry at 250-213-5658, sperry@cruiseshipcenters. com.

“We’re really lucky to live in the community we are in,” says Michelle.

It shouldn’t be a surprise that people want to help, though. No parent should have to face losing a child, whether to cancer or a tragedy like Saturday’s Johnson Street fire. The mere idea leaves a knot in the stomach.

For now, the Fuentes family can be thankful that they were able to celebrate Madrona’s birthday together (though they had to bring her to Victoria General on Monday, as protocol dictates they should when fever strikes). “Ask her how old she is, she’ll say ‘three,’ ” Michelle says. “She has decided she’s done with two.”

Michelle and Rafael can also take comfort in the uncomprehending innocence of their children. “They’re able,” Michelle says, “to live each day for what it is.”

For the parents, that takes strength — the kind you hope you never have to find.