After weeks of headaches, nausea, joint pain, vomiting and skin rashes, Jon Hustedt received a birthday gift the day before his 23rd birthday.

He was finally feeling better. Ninety-eight percent of his body’s bone marrow was from a transplant he received weeks before.

“He should’ve been a good match. But (the donor) was old and we kind of wondered if that’s part of what went wrong. He was also exposed to some kind of an infection. He had been exposed and my brother hadn’t … It was the best match we had, so we did it anyways. It should have gone well. Everyone said it should have went well, but then it didn’t,” said Jen Hustedt, Jon’s sister and a sophomore in LAS.

In just five days, his condition worsened and he was admitted to Children’s Hospital of Wisconsin. His body wasn’t processing the bone marrow in the way that it should have, and he was subsequently diagnosed with Graft Versus Host Disease (GVHD), a disease that destroys the recipient’s body by the donor’s white blood cells.

On August 29, Jon passed away of the disease and other complications involving his organs.

“It was nothing until it was over”

When Jon received his initial diagnosis, his sister was fiercely positive.

It was the summer before his junior year. He was completing a research internship focused on wheat at the University, and he was studying crop science and biotechnology in hopes of becoming a plant breeder.

After a day out in the fields, he got a routine physical at Carle Foundation Hospital.

But at the hospital, it became apparent that something was wrong when Jon’s blood counts were at panic levels. He was transported to Barnes Jewish Hospital in St. Louis in an ambulance, and 10 days later he was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH).

Aplastic anemia is a disease in which the body is unable to produce enough new blood cells. According to the Mayo Clinic, there are fewer than 20,000 U.S. cases per year.

PNH is a rare, life-threatening disease closely related to aplastic anemia, and is characterized by the destruction of red blood cells, impaired bone marrow function, blood clots and a 3-5 percent chance of developing leukemia.

Some patients with these diseases could survive for decades and experience only minimal symptoms.

In Jon’s case, for the two years leading up to his bone marrow transplant, he took medication, received mild chemotherapy and didn’t really tell anyone about his disease. He continued with schoolwork but decreased his course load to manage treatment and weekly doctor’s visits.

“He really thought it didn’t make him special, it didn’t mean he deserved more than other people because he was sick. … He just never drew attention to it,” Jen said.

Had a routine bone marrow biopsy not revealed that his condition evolved into a more fatal one, Jon would have continued along this path and waited until he completed his undergraduate studies for a bone marrow transplant.

Jon, like most patients, did not have a familial match, so when he found an unrelated 10 out of 10 match through Be The Match Registry, he proceeded with the transplant.

“Although ours didn’t go well it doesn’t mean it can’t go well for other people,” Jen said. “And maybe if we had had a choice of five donors, or two donors, and we picked the other one, it could’ve been a completely different thing.”

Be The Match

On Tuesday, the University’s chapter of Be The Match will hold a bone marrow drive in honor of Jon. The drive will take place from 11 a.m. to 3 p.m. at the Heritage Room in ACES Library and at the Illini Union in room 104.

“I think the reason we’re doing it is because Jon would’ve wanted us to and because we’ve been through it we know how helpful it is to people that can’t do it for themselves,” Jen said.

Emily Kay, treasurer of the University’s chapter of Be The Match and a sophomore in AHS, still remembers what it felt like when she was finally allowed outside of the hospital after receiving a bone marrow transplant.

“If I didn’t get the transplant, I probably wouldn’t be here. Just the chemo is not enough,” Kay said.

While on a vacation in Florida when she was eight years old, Kay was diagnosed with acute myeloid leukemia (AML), a fast-growing type of cancer of the blood and bone marrow.

The following five months felt longer than they were, and consisted of multiple hospital stays, rounds of chemotherapy and watching Animal Planet on TV.

Two years after the transplant, Kay’s parents surprised her at the airport with the donor who saved her life — a young woman from Australia.

“I just want to make an impact as much as I can because I am here, and there’s other people that aren’t. That’s why I really want to (be part of) Be The Match so I could give back,” Kay said. “It’s such an easy fix. I mean it’s not easy obviously, but people talk about finding a cure for breast cancer and this is something that is working so I feel like we should really support it and make sure they know it exists.”

And when Jeff Yacup, assistant director at the Illinois Leadership Center, donated his bone marrow last year, he felt this sentiment, too.

“The whole thing was relatively easy, and it’s probably one of the most significant things I’ve done in my life,” Yacup said.

According to Be The Match, the chances of a person going on to donate are one in 540.

Once a person joins the registry, he or she can donate through a peripheral blood stem cell (PBSC) donation or a marrow donation.

The former procedure is non-surgical and the one Yacup opted for. A drug increases the number of cells in the donor’s blood stream and then these cells are gathered in a short, outpatient procedure. The latter procedure is surgical and performed under anesthesia. According to Kay, most individuals who donate through this procedure feel as if they slipped on ice and may feel soreness in their lower back for a few days.

“I traded a day of my time, or a couple days of my time, to give somebody a day of life,” Yacup said. “I think I would do that even if it’s not going to stick forever. And I think that’s what I would challenge people to think about if they’re considering it or if they get asked, ‘What’s the value of time?’ And there really isn’t any.”

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