Setbacks have put Jonathan ‘though hell’, mom says
After a successful stem cell transplant, 16-year-old suffers complications
Jonathan Pitre has been on a medical roller-coaster in the week since blood tests revealed that his stem cell transplant has taken root in his bone marrow.
While his white blood cell count has soared — it’s now well within the normal range — he has suffered a series of complications that have severely tested his physical endurance.
“It has been a long few days,” said his mother, Tina Boileau. “He’s been through hell.”
Pitre, 16, is battling liver, kidney and gastrointestinal problems.
He has been diagnosed with typhlitis, a serious inflammation in part of his large intestine, which brings with it the risk of a bowel perforation. He has undergone a series of X-rays and ultrasounds to check for perforations, all of which have come back negative.
At the same time, Pitre is fighting a liver infection that has caused his fever to spike and his skin to yellow. His blood pressure has fluctuated and his kidneys are struggling to process all of the fluids and medications that have been pumped into his body. He hasn’t been allowed to eat or drink for days to protect his damaged gastrointestinal system.
Pitre will undergo surgery Wednesday to have another central line installed so that he can be fed intravenously rather than through his existing g-tube, which sends nutrition directly to his stomach.
All of the complications have made it difficult to deliver enough medication to control Pitre’s pain levels, his mother said. “It’s got to get better,” she said. Boileau is placing her faith in her son’s new immune system, which has been rebuilt with the help of her donated stem cells. “His white blood cell count is at 6.7 which is amazing,” she said. “And hopefully, that helps him fight everything he’s going through.”
A normal white blood cell count ranges from 4.0 to 11.
Pitre found out last Tuesday that the white blood cells in his system were all donor cells, which signalled that his transplant had successfully engrafted in his bone marrow. Bone marrow stem cells produce most of the body’s blood, including the white blood cells that are responsible for fighting bacteria, viruses and other pathogens.
Pitre’s lead physician, Dr. Jakub Tolar, said last week that the Russell teenager remains “extremely fragile and susceptible to all kinds of complications.” But Tolar also said the success of the transplant has established the precondition for his recovery.
It has now been 40 days since Pitre was infused with stem cells drawn from his mother’s hip bone at the University of Minnesota Masonic Children’s Hospital.
In the next three months, doctors will be on the lookout for signs of acute graft-versus-host-disease (GVHD), a complication in which the donor’s white blood cells turn on the patient’s tissues and attack them as “foreign.” Last week, Pitre showed signs of a rash, which can sometimes be a telltale sign of the disease, but a skin biopsy showed that the problem was not related to GVHD.
Anyone who receives stem cells from another person is at risk of developing the condition, which can range from mild to life-threatening.
Pitre suffers from a severe form of epidermolysis bullosa (EB), a painful and progressive skin disease tha t has inflicted deep, open wounds on his body.
It has been a long few days... He’s been through hell.