‘Ottawa’ ‘Butterfly Boy’ Steels Himself for Second stem-cell Transplant
Bracing for his second stem-cell transplant in seven months, Jonathan Pitre knows all too well the mountain in front of him, its hardships and precipices.
So he’s doing what he always does when confronted with such a steep challenge. “It’s all about staying positive, I think,” Pitre, 16, said in a telephone interview from Minneapolis.
There’s no checklist to prepare for his perilous journey, and no book that can calm all his misgivings.
“It’s mostly thinking about sticking together with the people you care about, your family,” he said of his preparation. “You have to stick to them very, very tightly and tell each other that, ‘It’s going to be OK and that we’re stronger than this. We’re going through this together, not just alone.’ ”
Pitre will face the transplant alongside his mother, Tina Boileau, who will also be his stem-cell donor.
Boileau has taken a second leave of absence from her government job to be at her son’s side for a treatment that could keep them in Minnesota for six months or more.
Later this month, Pitre will undergo a series of tests to ensure his heart, kidneys and other organs are healthy enough to withstand the rigours of the transplant. He’s still fighting the effects of a cold, but the blood infection that put him in hospital last month has been brought under control.
According to his current treatment schedule, Pitre will be admitted to the University of Minnesota Masonic Children’s Hospital on March 28. Then, in early April, he’ll begin eight days of high-dose chemo followed by one day of full-body radiation before his stem-cell transplant.
The chemo and radiation are designed to destroy his immune system and prevent it from attacking the donor cells.
Pitre is the first Canadian to take part in the clinical trial operated by the University of Minnesota’s Dr. Jakub Tolar, a pediatric transplant specialist who has adapted stem-cell therapy as a treatment for the most severe forms of epidermolysis bullosa (EB). It’s the only facility in the world that offers the treatment for EB patients.
Pitre suffers from recessive dystrophic EB, a rare, painful and deadly form of the disease.
Last September, Pitre suffered nausea, raging fevers and exhaustion in the aftermath of his first transplant, which ultimately failed when his own stem cells recolonized his bone marrow.
Pitre said he knows what to expect this time, but that doesn’t necessarily make it easier. “I know a lot of it was unpleasant. I know it’s going to happen again,” he said. “So I know a lot of that unpleasantness is going to come.”
The Russell teenager, however, said he’s prepared to face that future considering the promise that the transplants holds for him.
“I think of my family, I think of Gibson (his Boston terrier) and I think of all the good things that will come from this procedure, and after the procedure, how much more I’m going to be able to enjoy life, how much more I’m going to be able to enjoy time with my family, with Gibson.”
Although the procedure comes with life-threatening complications, it has produced dramatic improvements in two-thirds of those EB patients who have survived the transplant: tougher skin, reduced blistering and better wound healing.