One in a Million: The journey to a new life after bone marrow transplant
(KMSP) - Jason and Skyler Hrabe are trying to grasp the magnitude of what's coming.
"I thought it was something I was probably exposed to or doing,” said Jason.
In 15 years of working construction, Jason's taken maybe a few sick days. But now at age 33, just climbing a ladder is absolutely exhausting.
"Everything we had been planning for, it had just been ripped away so quickly," said Skyler.
Test after medical test left them in the dark for almost a year, until finally they discovered Jason is one in a million.
Jason has a rare disorder called PNH, which is destroying his blood cells.
"This also leads to failure of the bone marrow. The bone marrow is the factory in our body that makes all the blood cells that are present in blood," said Dr. Mrinal Patnaik from the Mayo Clinic.
There's a drug, which combined with bi-weekly blood transfusions, will keep him alive for a while, but it costs nearly a half million dollars a year.
"If you make it to 80, you’re only going to cost us $21 million, 500 some thousand," Skyler said jokingly to her husband during a Fox 9 interview.
FINDING THE PERFECT MATCH
His best option is to find a cure and for that to be a possibility, he's going to have to reboot his bone marrow with someone else’s.
Be The Match, a federally funded organization headquartered in downtown Minneapolis, keeps a registry of more than 12 million potential donors.
"We facilitate over 6,000 transplants a year, " said Mary Halet from the organization.
They want people between the ages of 18 and 44 to sign up.
Just swab the inside of your cheek for a DNA sample and send it in.
"Stem cells that come from younger donors provide the best outcomes for patients," said Halet.
A search of the registry found five perfect matches for Jason, all of them complete strangers.
"[It's] incredible, unheard of, as rare as the disease itself," said Jason.
And best of all, one donor has agreed to have stem cells extracted from his bone marrow to transplant in Jason.
"We're going to get through this and we're going to get through this together, and we're going to help people on the way," said Skyler.
The Hrabes have offered to let Fox 9 follow them on this journey to find new life. They hope, if nothing else, their story will encourage others to become donors.
Jason needs to keep up his strength until the transplant can happen; he gets regular blood transfusions and infusions of that very expensive drug.
It's a long, boring process of being stuck in a hospital room, but he's determined to have fun with it.
He shares his videos online with others around the world battling the same blood disorder.
Humor is his elixir for chemotherapy, too.
His own bone marrow has to be wiped out by chemo to prepare his body for what's coming from the donor.
"One of the side effects is tiny hands. I hear it goes away after a while," said Jason as he playfully displayed a set of toy hands.
THE REBIRTH
Transplant day begins with a "re-birthday" party complete with the "happy re-birth day to you” sung to him by family.
Jason's immune system is now gone.
If the transplant is a success, it will be re-born with that of the donors including whatever allergies they may have.
The logistics are mind boggling.
At Be The Match, a team has put together a travel itinerary; one of its couriers will pick up the donor's bone marrow and fly back to Minnesota.
The precious cargo never leaves their side.
"Since these are live cells and they're supposed to be transplanted into someone else, you know they can't go through the x-ray, they can't go through the check process that normal baggage does," said Parag Maski, supervisor of the donor contact team.
The deliveries need to happen within a 48-hour window, so it can be tricky.
Sometimes the courier even travels internationally to pick up the donor's stem cells.
BONE MARROW ARRIVES
Back in Rochester, severe weather has delayed the arrival of Jason's new bone marrow.
"I'm doing okay, I just need him to be okay," said Skyler.
Then just before midnight, his re-birth day gift arrives: four bags of precious stem cells that will enter his body through a plastic tube.
Jason doesn’t know who the donor is; that's confidential for now. But, he hopes to meet him and thank him in person.
WAITING GAME
It takes about three weeks before the new bone marrow will show signs that it’s working.
"One in five people don't make it to the one-year mark of a bone marrow transplant," said Patnaik.
One of the main risks is infection. Remember, Jason has no immune system after the chemotherapy.
It was inevitable that Jason’s hair would fall out. But he finds a sense of empowerment by making it happen on his terms.
“Okay, today is the day Jason takes control and the hair is going,” said Skyler as she watched him buzz it all off of his head.
For the next two months he lives in an apartment five minutes away from the Mayo Clinic. If anything goes wrong, he can get help immediately.
He wears a special mask to protect him from germs when he's out in public because getting a bug could be fatal.
"I'm the one who rides hard on him all day, ‘you got to lay down’, ‘wash your hands, wash your hands, wash your hands’, said Sharyn Resvick, Jason’s mother-in-law.
His mother-in-law cares for him during the week while Skyler's at work in the cities.
"Other than getting tired very easily, I feel fairly healthy," said Jason.
But two weeks later, he develops a fever and strange rash.
"I kind of, maybe, thought it was some acne," said Jason.
It's an early sign of Graft vs. host disease, a potentially fatal condition when immune cells from the donor attack the patient's cells.
Fortunately, doctors were able to treat it before it got serious.
Nearly 100 days post-transplant, Jason's blood is getting stronger. He has more energy and his doctor is encouraged by his progress.
"You can never drop the guard in this process, we have to watch him closely for the next several months," said Patnaik.
There will likely be challenges yet to come. But for now, Jason and Skyler have what they so desperately wanted a chance for - a future together - all because a complete stranger made the decision to be the match.
"They're going to be the reason my husband has a chance at a long life, and we're so thankful," said Skyler.
The bone marrow donor registry is always looking for more people. Communities of color especially need more donors to sign up. The process is simple and can be done online.