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MINNEAPOLIS- Jonathan Pitre has completed his nine-day regimen of chemotherapy and radiation and is ready for Thursday’s stem cell transplant that holds the potential to dramatically improve his life.
In an interview on the eve of that transplant, a tired but resolute Pitre said he’s taking his treatment one day at a time.
“I’m just trying to go with it,” he said. “I don’t think ahead … I just fight.”
The chemotherapy and radiation have combined to leave him feeling, at times, nauseous and chilled. He has trouble sleeping and has suffered headaches.
“It make me feels like crap, but I’ve got no choice,” said the 16-year-old, who was born with a severe form of epidermolysis bullosa (EB), a blistering skin disease.
The stem cell treatment he’s pursuing at the University of Minnesota Masonic Children’s Hospital is the only one of its kind available to EB patients anywhere in the world. He’s the first Canadian to undergo the treatment.
On Wednesday, Pitre received full-body radiation, which he says brought him from a five or six on “the scale of bad” to an eight. “I’m super, super tired right now,” he said late in the afternoon.
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children’s Hospital on the event of becoming the first Canadian to undergo an EB bone marrow transplant.
Earlier this week, Pitre somehow found the energy to organize a surprise birthday party for his mother, Tina Boileau.
He woke early Sunday to enlist the hospital nursing staff to help him with his plan. With his mother out of the room, he made her a card, while the nurses stashed balloons and a present inside a closet.
When she came back, Pitre said he was hungry and asked for a snack. Boileau, who thought her son had forgotten her birthday, opened the closet door to see that he had remembered. The nurses came in to help sing Happy Birthday.
Boileau has slept on her son’s hospital room couch every night since he checked in late last month. She burst into tears at his card, which read:
“I hope you will like this gift I tried to fix for you on this special day. I know this isn’t much, but I hope you’ll like it anyway,” he wrote. “It means so much you came with me. I had to do a little something for my very special mom. I love you. Have a good day.”
Pitre said he had to do something to mark the occasion “because she basically dropped her whole life to give me a chance at a better life.”
Pitre’s mother is also his stem cell donor. Early Thursday morning, Boileau will be taken into an operating room, where surgeons will bore two holes in her pelvis and withdraw bone marrow, a material rich in stem cells.
Tired after a draining round of radiation, Jonathan Pitre starts to nod off while getting checked by a nurse at the University of Minnesota Masonic Children’s Hospital.
In the afternoon, those stem cells will be infused through a central line into her son’s heart. The method ensures the cells are evenly distributed throughout his body. The transplant is expected to take about an hour.
The chemotherapy and radiation have been used to weaken Pitre’s immune system and prevent it from attacking his mother’s donor cells.
If the procedure goes as planned, the stem cells will find their way to Pitre’s bone marrow and begin to proliferate. Within weeks, doctors hope to find evidence that stem cells are being dispatched to Pitre’s injured skin and internal tissue, and are producing a protein that’s essential to the development of collagen — the “glue” that gives skin its strength and structure.
People with Pitre’s form of EB have a fault in the gene responsible for producing collagen.
“Hopefully,” said Pitre, “my body will start regenerating what it doesn’t have, which is the collagen. So with the help of mom’s cells, hopefully, I’ll be able to heal and have a better quality of life. That’s our big hope.”
The procedure has worked well for about two-thirds of the EB patients who have survived it, resulting in tougher skin, reduced blistering, and better healing. Eight of the 30 children who have undergone the procedure have died, most from infections.
So far, Pitre has managed to withstand the chemotherapy and radiation without serious adverse events. Tests have shown his vital organs are in good health. He has run a mild fever, but there are no signs of serious infection.
All of the medication has also made Pitre’s skin itchy. Even the hospital sheets have bothered him, so Boileau went out and bought him new ones. She washes them every day to prevent infection.
Pitre’s room has a commanding view of downtown Minneapolis; its walls are decorated with messages of encouragement and with portraits of his beloved dog, Gibson. On the ceiling above his bed are pictures of his family and friends.
A large IV stand, draped with bags of medication — including the powerful painkillers dilaudid and ketamine — follows Pitre everywhere.
Boileau said the hospital staff has been incredible. “We’re kind of lucky to be here: the team is pretty awesome,” said Boileau. “Everyone knows about EB, so it’s very comforting.”
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation.
查看原文...
In an interview on the eve of that transplant, a tired but resolute Pitre said he’s taking his treatment one day at a time.
“I’m just trying to go with it,” he said. “I don’t think ahead … I just fight.”
The chemotherapy and radiation have combined to leave him feeling, at times, nauseous and chilled. He has trouble sleeping and has suffered headaches.
“It make me feels like crap, but I’ve got no choice,” said the 16-year-old, who was born with a severe form of epidermolysis bullosa (EB), a blistering skin disease.
The stem cell treatment he’s pursuing at the University of Minnesota Masonic Children’s Hospital is the only one of its kind available to EB patients anywhere in the world. He’s the first Canadian to undergo the treatment.
On Wednesday, Pitre received full-body radiation, which he says brought him from a five or six on “the scale of bad” to an eight. “I’m super, super tired right now,” he said late in the afternoon.
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children’s Hospital on the event of becoming the first Canadian to undergo an EB bone marrow transplant.
Earlier this week, Pitre somehow found the energy to organize a surprise birthday party for his mother, Tina Boileau.
He woke early Sunday to enlist the hospital nursing staff to help him with his plan. With his mother out of the room, he made her a card, while the nurses stashed balloons and a present inside a closet.
When she came back, Pitre said he was hungry and asked for a snack. Boileau, who thought her son had forgotten her birthday, opened the closet door to see that he had remembered. The nurses came in to help sing Happy Birthday.
Boileau has slept on her son’s hospital room couch every night since he checked in late last month. She burst into tears at his card, which read:
“I hope you will like this gift I tried to fix for you on this special day. I know this isn’t much, but I hope you’ll like it anyway,” he wrote. “It means so much you came with me. I had to do a little something for my very special mom. I love you. Have a good day.”
Pitre said he had to do something to mark the occasion “because she basically dropped her whole life to give me a chance at a better life.”
Pitre’s mother is also his stem cell donor. Early Thursday morning, Boileau will be taken into an operating room, where surgeons will bore two holes in her pelvis and withdraw bone marrow, a material rich in stem cells.
Tired after a draining round of radiation, Jonathan Pitre starts to nod off while getting checked by a nurse at the University of Minnesota Masonic Children’s Hospital.
In the afternoon, those stem cells will be infused through a central line into her son’s heart. The method ensures the cells are evenly distributed throughout his body. The transplant is expected to take about an hour.
The chemotherapy and radiation have been used to weaken Pitre’s immune system and prevent it from attacking his mother’s donor cells.
If the procedure goes as planned, the stem cells will find their way to Pitre’s bone marrow and begin to proliferate. Within weeks, doctors hope to find evidence that stem cells are being dispatched to Pitre’s injured skin and internal tissue, and are producing a protein that’s essential to the development of collagen — the “glue” that gives skin its strength and structure.
People with Pitre’s form of EB have a fault in the gene responsible for producing collagen.
“Hopefully,” said Pitre, “my body will start regenerating what it doesn’t have, which is the collagen. So with the help of mom’s cells, hopefully, I’ll be able to heal and have a better quality of life. That’s our big hope.”
The procedure has worked well for about two-thirds of the EB patients who have survived it, resulting in tougher skin, reduced blistering, and better healing. Eight of the 30 children who have undergone the procedure have died, most from infections.
So far, Pitre has managed to withstand the chemotherapy and radiation without serious adverse events. Tests have shown his vital organs are in good health. He has run a mild fever, but there are no signs of serious infection.
All of the medication has also made Pitre’s skin itchy. Even the hospital sheets have bothered him, so Boileau went out and bought him new ones. She washes them every day to prevent infection.
Pitre’s room has a commanding view of downtown Minneapolis; its walls are decorated with messages of encouragement and with portraits of his beloved dog, Gibson. On the ceiling above his bed are pictures of his family and friends.
A large IV stand, draped with bags of medication — including the powerful painkillers dilaudid and ketamine — follows Pitre everywhere.
Boileau said the hospital staff has been incredible. “We’re kind of lucky to be here: the team is pretty awesome,” said Boileau. “Everyone knows about EB, so it’s very comforting.”
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation.
查看原文...
