It could be a very special Thanksgiving for teen
One year later, Jonathan Pitre is counting his blessings.
Last Thanksgiving, the Russell teenager learned his first stem cell transplant had failed, which meant all of the suffering involved had been for naught. This year, however, Pitre is celebrating the success of his second transplant — and the slow repair of his battered and scarred body.
He’s improved so much in the past two weeks that he has started daily physiotherapy and occupational therapy, and hopes to be released from the University of Minnesota Masonic Children’s Hospital next week, possibly on Thanksgiving Day.
“I’m thankful just to still be alive and kicking,” Pitre said in a telephone interview Friday from Minneapolis. “And it’s nice to be going up the stream, feeling better.”
The 17-year-old now does two hours of therapy every day to rebuild his strength and flexibility after months of being confined to a hospital bed. He has been in hospital for all but two days since his stem cell transplant in early April.
Late this summer, his nausea was so bad he would be sick every time he sat up in bed; he was so weak he couldn’t walk to the bathroom without help. “It was so hard,” Pitre said. “I had to lean on mom so much and lean on the IV pole also.”
But Pitre has authored a remarkable turnaround in the past few weeks thanks to a new round of steroids and an enormous dose of willpower.
“Now that I’m starting to feel better again, I’m not going back,” Pitre vowed. “So I’m staying strong. I’m making sure I do my concentration exercises, my meditation.”
Pitre regards his blistering skin disease, epidermolysis bullosa (EB), as a spectral force and he marshals his mental and physical energy to fight it. “He (his EB) figured that in my weakest time, he would throw everything he had at me. But with my family, with my team, with my own strength, we finally turned the tide in our favour. It was a battle of wills, but I’m starting to feel better.”
In physical therapy, Pitre is trying to stretch his limbs into more natural positions since his arms and wrists are bent by scar tissue, and his left foot is curled inward. He also wants to walk on his own again and so he’s doing squats and other strengthening exercises to rebuild his legs and buttocks. This week, he even broke a sweat. “One of my goals was to actually sweat during the workout: to prove to myself that I was working hard enough to break a sweat,” he said. “I don’t want to just do it halfway. I try to do the best I can.”
His goal is to walk his Boston terrier, Gibson. “Actually walk him, not wheeling him in my electric wheelchair,” he added. “I want to go for a walk in the forest with him off the leash with him running everywhere.”
Pitre said it’s hard to believe his skin is actually getting better, not worse, for the first time in his life. It might even be less painful, he said, but it’s hard to know because there’s so much soreness associated with his new stretching and exercise regime.
“I’ve learned that your own inner strength can be much greater than you imagined,” he said. “And I realized how strong we can be together: that when you have a team by your side, it’s a lot easier to get through something. That support increases your inner strength.”
Doctors considered discharging Pitre from hospital this past Tuesday, but a fever broke out Monday night. Tests for a blood infection have come back negative.
Pitre’s mother, Tina Boileau, said her son is the best he’s been in months and she’s hoping his body will be able to combat the infection on its own.
“He’s very determined to get out of here,” she said. “I’m thankful we have this long road under our belts.”