‘Ottawa’ Jonathan Pitre Battles Blood, Lung Infections
Jonathan Pitre is back in a Minneapolis hospital with blood and lung infections — complications that will likely delay his second stem-cell transplant.
Pitre and his mother, Tina Boileau, went to the University of Minnesota Masonic Children’s Hospital last week for a check-up in preparation for the transplant, scheduled for March 8.
Tests revealed that Pitre had unusually low oxygen levels in his blood. Further investigation found that he had a respiratory virus and a bloodstream infection, likely caused by his surgically implanted central lines. The thin plastic tubes, used to deliver medicine, nutrition, blood and stem cells, are susceptible to infection.
Pitre, 16, has been in hospital for the past five days. He’s on antibiotics and is using an oxygen mask to help him breathe at night.
“He’s getting better,” Boileau said in an interview Tuesday. “But we have to make sure the blood infection doesn’t come back. We’re taking it day by day. He’s feeling better than he did, but there’s more progress to be made, for sure.”
Doctors want Pitre to overcome the infections before they begin a second blood and marrow transplant procedure.
The Minneapolis children’s hospital is the only facility in the world that operates an ongoing clinical trial to treat severe cases of epidermolysis bullosa (EB) with stem cells. The treatment holds the potential to halt the advance of Pitre’s rare and deadly form of the skin disease, recessive dystrophic EB.
People with RDEB have a fault in the gene responsible for a specific kind of collagen that connects the outer layer of skin, the epidermis, with those below it. The clinical trial seeks a “biochemical correction” to that fault. If the transplant works, stem cells will find their way to Pitre’s bone marrow, dispatch cells to his injured skin, and secrete a protein that’s essential to the development of collagen — the “glue” that gives skin its strength and structure.
Some EB patients have experienced dramatic benefits after their transplants: reduced blistering, tougher skin, and better wound healing. But the transplant is high-risk and is usually accompanied by life-threatening complications.
Pitre will undergo eight days of high-dose chemotherapy and one day of full-body radiation in advance of the stem cell transplant. His mother will again serve as his donor.
Last year’s procedure failed when Pitre’s own stem cells recolonized his bone marrow.
Boileau said even though everyone knows exactly what to expect this time, it doesn’t make the journey easier to face. “There’s a different kind of stress this time,” she said. “It’s not the unknown this time, it’s the known — and the known is scary because it was tough.”
Pitre suffered infections, fevers, nausea and exhaustion in the aftermath of his transplant last September.
Pitre and his mother spent five weeks at home in Russell earlier this year and returned to Minnesota last week. Boileau said her son is ready to face his next challenge. “When he got in the truck, he said it was time to go back,” said Boileau. “He wants to get it done so we can go home for real next time…We know we’re good to do this and we’ll come back.”
OHIP will finance the $1 million hospital procedure, while Boileau will be paying her own living expenses with the help of the EB charity, DEBRA Canada.