Jonathan Pitre set to pass another milestone on remarkable road to recovery

After years of suffering through excruciating pain, and two months in a Minnesota hospital, Jonathan Pitre finally received some very encouraging good news this week: He could soon be discharged.

Russell teen showing great improvement after 2nd stem cell transplant for painful skin disease

Jonathan Pitre and his mother Tina Boileau enjoy some fresh air outside the Minneapolis hospital where the 16-year-old has been recovering from a second stem cell transplant. It was his first time outside in two months. (Tina Boileau/Facebook)

After years of suffering through excruciating pain, and two months in a Minnesota hospital, Jonathan Pitre finally received some very encouraging good news this week: He could soon be discharged.

"On Monday, the D-word kind of came out," said Jonathan's mother Tina Boileau on Thursday. "Last week discussing discharge would have been very far in my thoughts, and now it could be sometime between Monday and Thursday."

Pitre, 16, has been a patient at the University of Minnesota Masonic Children's Hospital in Minneapolis since late March, where he received a potentially life-saving stem cell transplant.

It was his second blood and marrow transplant to treat an exceedingly rare disease called epidermolysis bullosa, which makes his skin so brittle it blisters and tears. The first transplant, performed last year, failed.

This latest transplant appears to be working, as evidenced by the improved condition of the skin on Pitre's back.

On Wednesday, despite being connected to a tangle of tubes and medical machines, Pitre was allowed to spend some time outdoors with his mother.

"The breath of fresh air was very needed. After two months of being in the hospital, you don't know what you miss until you don't have it anymore," said Boileau. "This has been the highlight of our week. It's been definitely needed after going through such a difficult road."

'Whatever he's doing, it's working'

That difficult road included complications with Pitre's lungs, kidneys and liver, leaving him weak and at times struggling to breathe on his own. 

Pitre was resting Thursday morning, and wasn't available to speak with CBC.

"Last week was probably the hardest one of them all because not only was he really, really sick, but he was also experiencing some confusion and hallucinations," said Boileau.
The skin on Jonathan Pitre's back is shown before (left) and after (right) his second stem cell transplant. (Tina Boileau)

At one point last week Pitre's white blood cell count, critical to his ability to fight infections, dropped to a concerning level. Pitre's doctor assured him this was normal, and offered to give him medication to boost his white blood cell level.

According to Boileau, the 16-year-old looked at the doctor and in no uncertain terms told her he would talk to his body and empower it to boost the white blood cell count.

"Whatever he's doing, it's working," said Boileau with a chuckle. "We're not out of the woods even when we do get a discharge. There're always risks and complications that can happen, but we're definitely in the right direction, and hopefully the worst is behind us."

Following his discharge, Pitre would still need to visit the hospital daily for up to five hours for blood transfusions. Nonetheless, it's a milestone Boileau and her son will gladly accept.

"It's going to be nice to go back home every night, and being able to cook and relax a little bit," said Boileau, referring to the apartment near the hospital she's rented during her son's treatment and recovery.

Reaching for goals

This encouraging news for Pitre and his family comes as he gets ready to turn 17 with a birthday celebration in the hospital Friday. His mother has arranged for Pitre's favourite nurses to swing by with a cake, and for Pitre to take a special phone call.

It turns out Pitre loves fantasy stories and is in the process of writing a fantasy book. Boileau contacted one of Pitre's favourite fantasy authors, who agreed to chat with Pitre Friday and offer him some tips. 

It's another example of Boileau's effort to give her son goals to reach for.

"I'm really looking forward to seeing what the upcoming months have to offer to my son, to see the things that he'll be able to do that he hasn't yet," said Boileau.

"His biggest goal is to be able to take his dog Gibson for a walk when we get back home. So I keep giving him that goal and he keeps trying to reach it."