La Crosse man ‘pays it forward’ while waiting for bone marrow transplant

Carl Shedivy found a donor in a place he didn't expect

From the time they were kids, Carl and Denise Shedivy were destined to be a match for one another. “We’ve been together forever. We started dating in 8th grade,” said Denise.

This summer they celebrated their 30th wedding anniversary. Carl, an engineer at Trane Co., and Denise, a long-time elementary school teacher in La Crosse, were adjusting to life as empty-nesters and preparing for their golden years together.

“It was going kind of as planned. Denise was going to work a couple of more years at the La Crosse School District and I was planning to work maybe up to 5 more years and so a lot of planning around that,” said Carl.

For the most part, Carl was active and healthy for his age. A few years prior, he had been diagnosed with a blood disorder, but it was easily managed. And then came a bombshell. Denise said, “not ready for this diagnosis at all.”

The phone call from the doctor came in June during a vacation with Carl’s extended family.

“She said, we’d like you to come back for a consultation on Wednesday, ‘could you do that?’ I said I could, but I said I really want a good reason why I need to leave my vacation to come so she was very reluctant, but finally gave in,” said Carl.

The diagnosis was Acute Myeloid Leukemia. The cancer was already in 80% of his blood cells.

Carl said, “You know, when you’re with your family, it’s very tough to try to stay strong.”

Suddenly, their plans for the future put on hold; instead, preparing for the unknown. “We really don’t even have words for how overwhelming it is and how scared and unsure and just numb is a good word, it’s a fog, it’s disbelief and really scared,” said Denise.

Just a week after his diagnosis, Carl was at Mayo Clinic in Rochester getting his first round of chemotherapy. Carl said, “it’s all happening so fast, it’s really hard to stop, get too much of a pity party.  It was just ‘let’s go fight this thing.”

Denise said, “we agreed, pity party until the first drop of chemo, that’s where we would cry and feel sorry for ourselves and then we said, once the first drop of chemo, then we’re fighting.”

Doctors determined Carl’s best chance for a cure was a bone marrow transplant. They began looking for a potential match with those closest to him first. “Dr. Al-Kali’s going down his list of questions and he goes, ‘how many siblings?’ and I said 9 and he goes ‘no, no, no, how many blood siblings?’ and I said 9 and he goes ‘oh.’

One by one, each of Carl’s 9 brothers and sisters was tested to be a potential life-saving bone marrow donor. And one by one, “he’s got 9 so someone will match,” said Denise. And one by one, “we were just floored, like how can this be,” said Carl. No match. Denise says, “we were devastated.”

“There’s about a 1 in 4, 1 in 3 chance that any one of his siblings would’ve been a match so you think when there’s more siblings, there’s more likelihood that one of them would match, but that’s not always the case,” said Dr. Mark Litzow, a Hematologist at the Mayo Clinic in Rochester.

The Shedivy’s focus quickly turned to an organization called “Be the Match.” It’s a database of potential bone marrow donors.

“When we find a match, the donor has already agreed to be in the registry. We’ve asked them for a blood sample which was sent to us so we could confirm they truly are a match with Carl,” said Dr. Litzow.

Carl said, “first of all, I need it, if we’re going to find a donor out there that’s a perfect match for me, but we also thought from ‘pay it forward’ wouldn’t be great if we could get the word out there.”

Determined not to sit by and watch helplessly, Denise helped organize several drives to get people signed up and on the “Be the Match” registry. Events recently took place at UW-La Crosse and Viterbo.

“It’s pretty easy, you answer a series of questions online, then if you pass that, they send you a kit, it’s really a cotton swab inside your mouth, you seal it up, send it in to ‘Be the Match’ and they put you in the registry, it’s that simple to be in the registry,” said Carl.

And over the years, the process of donating, what is now essentially stem cells, has become less painful too. “It’s easier on the donor because they don’t have to undergo anesthesia and have the needle put in their pelvic bone many times, which makes them sore when they wake up,” said. Dr. Litzow.

Within a few months of Carl being put in the registry, several potential matches were found. It turns out his donor is half way around the world.

“It’s a gift of life that, to a total stranger is, I don’t know, it’s so hard to comprehend,” said Carl. “It’s kind of profound to just think about his own siblings who were more than willing and devastated when they found out they weren’t a match with him that these total strangers, somewhere, have the potential of saving his life. It’s overwhelming,” said Denise.

Their support system has kept the Shedivy’s fighting. And it keeps growing every day. Out of their strong family bond was born the phrase, ‘Shedivy Strong.’

“People have latched onto it and the photos we’re getting with creative banners with the Shedivy Strong message with people taking pictures, has been heartwarming.” “There have been days where I’d look at Denise and say ‘I can’t do this’ and then out of the blue a card will come from somebody you haven’t heard from in so long,” said Carl.

And while a complete stranger now has the ability to save Carl’s life, in reality, he found his perfect match a long time ago.

Carl said, “for me, personally, it just helps to think future. You know, it’s going to be painful, but I got the best caregiver in the world, we’ll get through this and go back to our plans.”

Carl’s cancer is in full remission as he awaits his bone marrow transplant.

The donor will donate his/her stem cells and they will be put in a cooler and flown immediately to Mayo Clinic.

Carl still has a very long road ahead of him. How his body accepts the new stem cells is the big unknown, but if the transplant is successful, doctors say he has a 40 to 50% chance of a cure. Also, if the cancer would happen to come back after the transplant, doctors have more options to be able to deal with it.

If you’re interested in getting on the bone marrow donor registry, just go to www.bethematch.org. They’re especially looking for people 18-44 years old.