NewsNovember 27, 2019
Thankful People — 'He's gonna owe me big': Matthew McKee receives bone-marrow donation from twin sister Allee
Matthew McKee, an 11-year-old with aplastic anemia, receives a life-saving bone marrow transplant from his twin sister Allee. Their family's journey highlights resilience and community support.
Rachael Long
In late October, laughter permeated The Olson Family Garden at St. Louis Children’s Hospital as Matthew McKee got the chance to do something abnormal: run and play outside.
The 11-year-old Trinity Lutheran student was diagnosed in August with aplastic anemia, a rare condition in which damage to stem cells hinders the bone marrow’s production of red blood cells, white blood cells and platelets.
According to the Aplastic Anemia and MDS International Foundation, between 600 and 900 people in the United States learn they have aplastic anemia each year. Anyone can be diagnosed with the disease, but according to the foundation, aplastic anemia is most commonly diagnosed in children, young adults and older adults.
Before his diagnosis, Matthew was experiencing life the way you’d expect a young person his age would — by spending time with his friends, attending school, tagging along on float trips and annoying his twin sister, Allee.
Just before the first week of school, strange things started happening to Matthew.
Roughly two weeks before he was hospitalized, Allee and Matthew had been wrestling when — as part of what could only have been an epic battle between siblings — Allee bit her brother. Their father, Jason McKee, recalled seeing a “horrific” bite mark near his son’s shoulder.
“I was so angry with Allee,” Jason remembered. “I said, ‘Why would you bite him that hard?’ And she said, ‘Dad, I didn’t bite him that hard.’”
On Aug. 3, Matthew returned from a float trip covered in “significant” bruising, and as his mother, Wendy McKee, recalls, “more bruising than what it should be for a normal 11-year-old boy.”
Three days later, Matthew had a nosebleed that lasted for three hours. Not normal; we’ll take him to see the doctor tomorrow, his mother thought.
But when tomorrow came, Matthew awoke with something his parents described to look like a “nasty rash” called petechiae, a condition that causes pinpoint, round spots to appear on the skin as a result of bleeding.
That day, the McKees took Matthew to Saint Francis Medical Center in Cape Girardeau. A few blood tests confirmed some bad news: Matthew would have to be taken to St. Louis, immediately.
Transported north by way of ambulance, Wendy and Matthew left to find answers — they have not returned home since.
‘We see he has a sibling’
On Dec. 25, 2007, Allee was born 2 minutes before Matthew — an important time difference, depending on who you ask.
The siblings have what their mother calls a “love-hate” relationship. It’s a phase — she hopes.
But when Matthew got sick, Allee didn’t hesitate for a moment. Her parents recall one of the first things Allee said: “What can I do?”
“We were blessed with twins 11 years ago for a reason,” Wendy said with a smile.
While half of her family has been living temporarily in St. Louis, Allee has had to go on with life in Cape Girardeau as though things are normal. But when a sibling is suddenly diagnosed with a life-threatening illness, “normal” doesn’t exist.
“Oh, it’s really made an impact [on Allee],” Jason said. “You know, an 11-year-old girl, it’s hard for her to express her emotions. But inside, you know there’s just an ocean of emotion ... about this. ... We think of Matthew, but it’s so much her story, too.”
Though no one can take the place of her twin, Jason said it helps Allee to have extended family and friends around.
If everything else about Allee’s life has changed, her relationship with Matthew is ever the annoying, hilarious, infuriating, loving sibling relationship it always has been.
Just before she was anesthetized for the transplant, Jason said Allee was beginning to feel anxious about the imminent procedure. Not for a moment forgetting the many ways to leverage something over her younger twin, Allee said, “He’s gonna owe me big.”
More than a month later, sitting beside Matthew while he received a blood transfusion, Allee’s message remained the same. Asked how she feels about the chance to donate bone marrow to her brother, Allee, with a mischievous grin, said, “It’s good because I can bring it up and he owes me.”
Before they knew what was making Matthew sick, his parents said all signs pointed to leukemia.
“He had zero platelets,” Wendy said of the initial blood tests run at Saint Francis.
In fact, doctors had to rule everything else out before they could officially diagnose Matthew with aplastic anemia. Once diagnosed, the discussion surrounding odds for locating a donor tissue match was no walk in the park.
When Matthew’s doctors laid out his treatment options, Jason remembered them saying, “First and foremost, we see he has a sibling; we would like to test her to see if a bone marrow transplant is even a possibility.”
A 1-in-4 chance
A successful bone-marrow transplant can cure a case of aplastic anemia in a young person, where other treatment options may be more complicated and less effective.
Allee had a 1-in-4 chance of being the right genetic match to donate and save her brother’s life. Other treatment options presented to the family, as Jason remembers them, included a “drug-induced protocol that had a lesser success rate but [one that] still would have given him a chance,” and placement on a national donor list, an option with a higher risk of rejection.
“As a realist, when you hear a 25% chance, I’m already thinking of Step 2, thinking about the [other options], just [crossing] my fingers and praying that Allee is a match,” Jason said.
Matthew’s donor needed to be a human leukocyte antigen protein match, not a blood-type match. One of Matthew’s doctors in the hematology and oncology clinic at St. Louis Children’s Hospital explained the science behind a human leukocyte antigen protein match.
“You get half of those proteins from your mom and half of those proteins from your dad,” said Dr. Shalini Shenoy, a pediatric oncologist and the director of the pediatric stem-cell transplant program at St. Louis Children’s Hospital. “Fifty percent of the time, you’re going to be half-matched, so you’ll get the right set from mom and maybe the wrong set from dad. ... Twenty-five percent of the time, you share no antigens, no proteins at all because you got the wrong set.”
But the other 25% of the time, as was the case for Allee and Matthew, the donor and recipient will be a full match.
Shenoy explained Allee could not have been a better match for her brother, even if she had been born his identical twin.
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The fact Allee and Matthew are non-identical twins, Shenoy said, means there was no guarantee they would be a match. But, hypothetically, if Matthew had an identical twin, Shenoy said there would have been “some concern” about that kind of match.
“Something happened to [Matthew’s] bone marrow. His immune system just worked against his bone marrow and knocked it off. Would that have [been the case for an] identical twin? It would have been hard to say. Even if the twin was normal at the time of the transplant, would that bone marrow have held? Or would it have done the same thing again?
“Luckily they were matched, and so that made her the best donor for him,” Shenoy said.
A ‘good-spirited boy’
Before Matthew could receive his sister’s donation, his medical team had to eliminate what was left of his immune system by way of chemotherapy. It was a 21-day process involving an isolation room and constant fear of infection.
“[There were] so many things that could be just devastating, that could make him gravely ill,” Jason said. “Those 21 days, they lasted forever.”
The treatment Matthew went through didn’t just cost him his immune system, it also cost him his hair.
“He’s written in school papers that his best attribute is his hair,” Jason said. “You tell a kid he is going to lose his hair, and he fought that until the bitter end.”
“He spends more time in the bathroom than myself and his sister, doing his hair,” Wendy said.
After being told he would lose most or all of his hair, Matthew stubbornly — and with no small amount of pride — held on to about 25% to 30% of his hair, Jason said.
“He’s pretty proud of that,” Jason said, laughing.
Despite prolonged isolation, chemotherapy, a bone-marrow transplant, being away from home and missing school, Matthew never lost his good spirits.
“He’s had a smile on his face every day,” Wendy said. “He is a very good-spirited boy; he kind of goes with the flow, and he may not like what he’s doing, but by God, he’s got a very positive attitude when he does it.”
Matthew must remain in St. Louis for 100 days after his transplant, which took place Sept. 19. After that time is up, barring any complications, Matthew will finally return home, though he will be restricted to settings with a small number of people and limited visits from friends.
“He gets to go home but stay at home, more or less,” Jason said. “We’re going to have to be super, duper diligent in screening anybody that comes in to make sure they don’t have any symptoms of any kind of illness.”
Because his immune system had to be completely erased in order to receive a transplant, Matthew will also need to be revaccinated before he can return to life as he knew it.
“He has the immune system of a newborn,” Jason said.
Some of those vaccinations he will be able to receive a year after his transplant; but for others, the waiting period is longer.
“We’re looking at two years out before he can actually live life like a normal teenage boy,” Wendy said.
Matthew’s parents are optimistic he could return to Trinity Lutheran for the next school year.
‘A road that can be traveled’
Though Wendy and Matthew have not returned to Cape Girardeau since August, life back home hasn’t fallen apart — not by any means.
“We have a wonderful family at home that is supporting us,” Wendy said, noting family members have brought her winter clothes during visits, as the temperature was upwards of 90 degrees when she left town.
The family is living temporarily in a furnished Ronald McDonald apartment, keeping them close by the hospital and allowing Matthew distance from outside germs. Allee is mostly in Cape Girardeau, but she often makes trips to see her family.
Everywhere the McKees go, a community waits to support them.
“You don’t realize how supportive people can be until you’re put in a situation where you’re in need of help,” Wendy said.
A family member set up a GoFundMe fundraiser — which may be found at gofundme.com/f/team-mckee-matthewallee-bone-marrow-transplant — for the McKee family to help with medical bills, everyday expenses and other costs they have incurred over the last three months.
“It’s so hard to take a gift from somebody,” Jason said. “But so many people have come to me and said, ‘This is all we can do for you, and we’ve got to do something.’”
But that’s not the only way the community has stepped forward to help the McKees. Trinity Lutheran School in Cape Girardeau has hosted fundraisers and a blood drive in Matthew’s honor.
The school even took the time to recognize Allee during one of her volleyball games.
“They had her stand up and said some words, and they gave her a standing ovation,” Jason said. “It was just very special for her.”
The school even sold T-shirts with the words “Team McKee” as a fundraiser for the family.
“The community has just been wonderful ... Cape Girardeau, his school, family and friends — they’ve all just been amazing,” Jason said.
There is no easy way to navigate life after sickness touches a family, especially for parents of a sick child. But the McKees continue to give thanks in spite of their situation.
“I am most thankful the Lord is giving us a road that can be traveled,” Jason said. “Because some patients here don’t ... as bad as the road is gonna be, at least there is a road.”
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