Jonathan is the best I’ve seen him in months. The doctors (are) they’re starting to discuss discharge again.
TINA BOILEAU, Jonathan Pitre’s mother, on his improving health.
Jonathan Pitre’s mother says she can finally see light at the end of the tunnel five months after her son’s stem cell transplant at the University of Minnesota Masonic Children’s Hospital.
“Jonathan is the best I’ve seen him in months,” Boileau said in an interview Wednesday. “The doctors have been so impressed with how much better he is that they’re starting to discuss discharge again.”
Earlier this month, Pitre, 17, was suffering debilitating nausea and exhaustion — the result of what doctors thought was a gallbladder or liver problem.
They’re still trying to understand what’s going on with Pitre’s gastrointestinal system — gallbladder surgery remains a possibility — but he has improved significantly in the past two weeks. He has started reading again and has taken interest in food, although he’s not yet eating.
“It’s a such a relief to see him like this,” Boileau said. “His days are much better now.”
The family is awaiting results from a recent liver biopsy and a gallbladder test that are expected to determine the course of Pitre’s treatment. Boileau, however, believes her son has turned a corner, and will be firmly on the road to recovery once his gastrointestinal issue is solved.
His white blood cell count has improved and is approaching the normal range even without medication to boost it.
“We can actually see light at the end of the tunnel,” Boileau said.
Pitre’s stem cell transplant in early April set the family on a medical and emotional roller-coaster. The transplant — his second — successfully took root in Pitre’s bone marrow, but it has been accompanied by a raft of serious complications, including bacterial and viral infections, kidney, liver and gallbladder issues.
Yet at the same time, the transplant also began to work its cellular magic: to improve Pitre’s diseaseravaged skin.
Pitre, who suffers from a severe form of epidermolysis bullosa (EB), has seen his blistered skin heal in ways that it never has in the past. “Big open wounds are decreasing in size and other chronic wounds have completely closed up,” Boileau recently wrote on Facebook, describing the phenomenon.
She posted pictures that documented dramatic improvement to his back and legs, and wrote of her heartfelt desire to hear her son finally announce, “I feel good today and this was all worth it.”
Pitre’s stem cell transplant is an experimental treatment for EB. It’s based on the theory that a stem cell transplant can offer EB patients a “systemic” approach to skin healing by manufacturing the key protein that their bodies lack — a protein essential to the development of collagen.
Collagen is the “glue” that gives skin its strength and structure, and those with Pitre’s disease, recessive dystrophic EB, are missing it.
Pediatric transplant specialist Dr. Jakub Tolar pioneered the treatment for EB patients at the University of Minnesota Masonic Children’s Hospital, which is the only health centre in the world that offers it.