Jonathan Pitre finishes chemo, begins dangerous wait
|Montreal Gazette 13 Sep 2016 at 11:23|
“We’re still here, obviously, and we’re still fighting — and that won’t change,” said the Russell, Ont., teenager who was born with a severe form of epidermolysis bullosa (EB), a blistering skin disease. “I’m feeling good. I would say all is great, but of course there have been a few complications here and there. But that’s what a transplant is: we’re working through it. We’ll be back soon.”
Pitre, 16, has been battling a persistent fever since receiving a bone marrow transplant Thursday. His temperature has spiked, at times, to 105 F and higher, and his nose is running.Both arecommon complications post-transplant.
The medical journey that Ottawa’s “Butterfly Boy” has travelled the past two weeks has been exhausting.
He had a particularly difficult night Sunday since he had to empty his bladder every two hours to flush the toxic chemotherapy drug, cyclophosphamide, from his system. It can cause bleeding in the bladder.
At one stage Sunday night, Pitre wasn’t passing enough urine, so he was given a drug that made him go every 15 minutes.
His mother, Tina Boileau, who sleeps in his hospital room, helped her son parade all night to the bathroom with his IV stand.
“Yesterday was not a nice day for us, not at all. Both of us,” said Pitre, a champion of understatement.
Pitre was given chemo two days after his transplant in order to target the infection-fighting T-cells contained in the bone marrow donated by his mother. Those T-cells have to be destroyed in order to reduce the chance of Pitre contracting graft-versus-host-disease, one of the more serious complications that can follow a bone marrow transplant.
Staff on the blood and marrow transplant unit of the University of Minnesota Masonic Children’s Hospital constantly monitor Pitre’s temperature and vital signs, and continue to adjust his medications in an attempt to bring down his fever.
Pitre’s medical journey has also been complicated by the need to conduct a four-hour bath ritual every two days. The bath ritual, an infection-fighting measure, is doubly important now that Pitre is so immune compromised. But it means that he must endure the removal of his bandages, the lancing of new blisters and the re-application of his bandages when all he wants to do is sleep.
Each new problem area on his body — this week, the skin on his backside has opened badly — must be addressed. “We have to really make sure to go through every section of the body one by one. That just tires us out,” said Pitre.
Boileau said they work as a team and do “what we have to do.”
“We took this journey together and we’re seeing it through together —and we’re going to come back home together,” she said.“We feed off each other; that’s how we’ve always done it. I think nothing has changed really.
“I mean, last night, after he was sick and tired of going pee, he said, ‘I’m so sick of this.’ And I said, ‘Yup, we’re not giving up, right?’ He said, ‘Not a chance.’ He didn’t even have to think twice. It was, ‘Not a chance.’ ”
Pitre now enters a wait-and-see period as doctors look for signs that his mother’s stem cells have become established in his bone marrow and are producing cells capable of repairing his damaged skin.
There’s also the chance the donor stem cells will not engraft. Infections and other complications could threaten his life.
“In the next few weeks, what we’re hoping to see is that Jonathan will start producing my cells and white blood cells to help him start fighting infections,” explained Boileau. “His immune system is completely shut down now so these next few weeks are going to be pretty crucial.
“Hopefully, in four or five weeks, we’ll be able to see that he’s 100-per-cent engrafted, which is what we want and what we need.”
Pitre said he’s taking it one day at a time, and has not thought much about how his life might change if the transplant works.
“I’m not thinking about that much just in case it doesn’t work. I don’t want to get my hopes up too high just because I don’t want to be disappointed, and I don’t want to disappoint everyone else.”
For her part, Boileau said she hopes the stem-cell treatment affords her son a day without pain:
“I’d like to see him take some things for granted for a change. Just to be able to walk without pain or eat his favourite dish without saying, ‘My mouth is really hurting.’ I’d like to be able to keep him around for years to come.”