A year in Minnesota, no return date in the offing
Teen with rare skin disease looks forward to day he can return to Ottawa area home
Jonathan Pitre and his mother, Tina Boileau, will mark a bittersweet anniversary Saturday: their first full year in Minnesota.
Pitre, 17, arrived in Minneapolis on Aug. 19 last year to pursue the only treatment with the potential to dramatically improve his life and to escape the prospective death sentence imposed by his genetic skin disease, epidermolysis bullosa (EB).
The year has been a physical and emotional endurance test for mother and son — and there’s still no end in sight to their marathon.
“It’s almost hard to believe that it has been a year already,” said Boileau, “but we aren’t any closer to coming home.”
She called the year a gut-wrenching roller-coaster ride: “This is that roller-coaster that’s missing tracks.”
Pitre’s first stem cell transplant failed last October, which meant that he had to suffer through a second round of chemotherapy and radiation in April to prepare for a second attempt. That transplant has successfully taken root in his bone marrow, but it has been accompanied by a raft of complications, including bacterial and viral infections, kidney problems, blood pressure issues and breathing difficulties.
Pitre’s most recent problem is a skin infection on his back, which has proven resistant to antibiotics and to the bleach that Boileau normally uses to disinfect his wounds. As a result, she had to bathe her son’s back in bandages soaked in diluted vinegar.
His pain has been difficult to control, and Boileau spends hours each day and night gently rubbing her son’s back in an effort to relieve his discomfort. His nurses have joined the effort.
“It’s odd that someone with such sensitive skin wants to be rubbed, but it helps him more than any pain medication out there,” Boileau said.
Pitre is also battling another blood infection, and the skin on his face has started to be affected by EB blistering — a likely byproduct of the excess fluid in his body. He receives two units of blood each night because his body is not yet producing enough blood cells on its own.
“Every time we fix something, we break something else,” said Boileau. “Unfortunately, it has been like this for a while now.”
They have been in hospital for all but two days of the past five months.
Pitre received another transfusion of his mother’s stem cells Monday, and doctors are hoping it will boost his weakened immune system. It’s expected to take about three weeks for the stem cells to make their way to his bone marrow and to begin producing new blood cells.
Most of their time in the U.S. has been spent in their room on the third floor of the University of Minnesota Masonic Children’s Hospital. Boileau sleeps on the couch.
“We often just lay in bed together at night: we have the most beautiful sunsets out our window,” she said. “It has become so familiar that it feels like home away from home — but we can’t wait to get back to our real home.”
Boileau has learned much about her son during their difficult year.
“I always knew he was strong and determined, but he has continued to surprise me: He never gives up and tackles every thing that comes along,” she said.
“He’s so determined; he still holds on to that thought of being able to walk (his dog) Gibson some day.”
Boileau said her son’s skin continues to show signs of improvement — a fact that makes their medical ordeal easier to accept. They focus, she said, only on what’s in front of them each day.
“I just want to hear, ‘I feel good today, mom. This was all worth it.’ ”