BY NICOLE KIEFERT | PHOTO BY DAVID SZYMANSKI
FAMILY PHOTOS COURTESY OF DANIEL AND ANDREA KNUF
In 2013, Daniel Knuf — husband, father, baseball coach and, via his job, a world traveler — was living life as usual when extreme fatigue, unusual digestive issues and rapidly decreasing hemoglobin levels ushered him into the hospital.
“They said, ‘Oh, we’ll just run a few more tests. Nothing to worry about,’” Daniel recalls. “That’s when I ended up hearing that I had cancer.”
Daniel was diagnosed with multiple myeloma, a relatively uncommon, incurable cancer of the plasma cells that most frequently occurs in patients over the age of 60 — making Daniel, who was just 40 at the time of his diagnosis, an incredibly unusual patient.
“I always denied it,” Daniel says. “I didn’t want to be a part of it. [People would say] ‘Oh, you’re going to be a survivor.’ I don’t want to be a survivor, because I don’t want to have cancer.”
Daniel’s wife, Andrea Knuf adds, “It wasn’t even in my realm that something like this could happen. I mean, that’s not in my plan at all. We had two little kids. And I think everybody gets scared [because] cancer is such a broad word. … So then [I thought], ‘OK, what kind is it?’”
The more the couple read about Daniel’s diagnosis, the more frightened they became.
“[I felt] a lot of shock, a lot of anger — just upset with everything,” Daniel recalls. “I had a lot going for myself at the time and was really mad at the diagnosis.”
The couple began reaching out to family members for support as they began the harrowing process of researching and considering treatment options. One of the first people they called was Andrea’s father, Dr. Robert L. Truitt.
“My most vivid memory is calling Dad and him coming over,” Andrea says. “We talked about it, and I said, ‘Well, what does that mean? What’s going on?’ And he just hugged me, because he didn’t want to say anything. Because he knew. ... Nobody wants to tell you what the end result is going to be.”
“I knew what multiple myeloma was, the prognosis for multiple myeloma, and [that] it was considered, at that time, an incurable form of leukemia,” Dr. Truitt explains. “You don’t want to hear that when it’s one of your family members.”
As fate would have it, through painstaking research on bone marrow transplants for multiple myeloma, the Knufs learned that Andrea’s father was more than the general researcher she had always believed him to be. “At school, [people would ask,] ‘What does your dad do?’ I thought he was an exterminator, because [he] killed mice,” Andrea laughs. “All of a sudden we’re looking these things up and Dad’s name kept coming up. … It was really eye opening.”
Dr. Truitt was actually a member of the Medical College of Wisconsin team that perfected bone marrow transplant techniques to cure leukemia in the 1990s.
|Daniel and his wife, Andrea||Daniel and his sons, Cooper and Dylan|
|The Knufs in London|
|Daniel and his brothers, Mike and Guy, both of whom matched as donors for the transplants.|
“I knew he was a scientist, I knew he worked with mice, and he’d bring home slides all the time,” Andrea recalls. “He’d give presentations. … But I had no idea that he was a pioneer. I had no idea that this was so important to what we went through. He was just my dad.”
Able to simply explain complex treatments and offer realistic advice — as well as keep the Knufs as positive as he could manage — Dr. Truitt helped make the couple’s harrowing journey easier to bear. “I tried to express as much hope as possible, saying things are changing,” Dr. Truitt says. “It’s a tough [form] of leukemia, but there’s a lot of new things coming down and I knew a lot of my colleagues from different places that were working on it [and] developing new things.”
His impact — and patient nature — proved invaluable.
“I’m not a very linear person,” Andrea admits. “I don’t think that way. I couldn’t keep it together. It was scattering, and it was so nice to have somebody who was like, ‘No, it’s a day-by-day. Keep on track. This is what we’re doing,’ and to kind of ground me, because that wasn’t what I was doing at all.”
Dr. Truitt recommended his colleague, Dr. Parameswaran Hari at Froedtert and the Medical College of Wisconsin, to Daniel.
“I knew Hari’s reputation, and [I] knew that he was the one that Dan had to see, because he’s well-respected around the world for his skills in treating patients with multiple myeloma,” Dr. Truitt says. “Hari was very good at explaining to him, ‘You’re 40 years old, you’ve got two kids, so you’re the perfect candidate for really aggressive treatment.’
Daniel’s age and overall good health led him to accept aggressive forms of chemotherapy and then two bone marrow transplants for a cancer that was spreading rapidly and aggressively. “I was 80 percent cancer cells at the time, and they wouldn’t really tell me that when I asked for a staging,” Daniel says. “They wouldn’t because they don’t stage multiple myeloma.”
Within six months, Daniel had undergone intense chemotherapy to kill his whole bone marrow system and remove the cancer. Then he scheduled the two bone marrow transplants. The transplant, which once required the donor to be stuck with a large needle in the iliac crest (the outer pelvis) 100 times to collect marrow, a painful and risky procedure, has since developed to a much easier, safer and faster method.
“Now you can hook [donors] up to a machine that takes your blood— it’s called a leukapheresis machine — to remove the cells and give back the plasma,” explains Dr. Truitt. “So you remove the cells, give back the plasma, but you harvest mobilized stem cells, and you inject those.”
In another rare and remarkable occurrence, both of Daniel’s brothers matched as donors for the transplants. “There’s a one in four chance of having a sibling match, [and] he had two out of two match,” Dr. Truitt adds. “That’s very unusual to have two of his siblings that matched perfectly.”
By Sept. 6, 2013, Daniel had his first bone marrow transplant. By January, he received his second, both donations from his closest brother in age, Mike. Daniel was undergoing outpatient care, requiring very specific care instructions to prevent illness from crashing his incredibly weak immune system. Despite the nonstop cleaning, restricted family time, minimal visitors, dogs banned from the house, and constantly wearing a mask to prevent any kind of illness, Daniel still caught the flu, a bug that could have cost him his life.
“He had no immune system at all. He couldn’t fight anything,” Andrea remembers of the scare.
“That was a low point for me,” Dr. Truitt admits, turning to Daniel. “When I heard you had the flu, I got really scared. ... That’s the biggest cause of mortality is getting an infection during the early transplant period.”
The illness was a low point for Daniel as well, who recalls questioning what the outcome would be.
“I remember looking out the window at an art institute [that] was being built [and thinking], ‘I don’t know if I’m gonna see it,’” Daniel says.
Luckily, as Dr. Truitt explains, Daniel was likely at the “cutoff point” post-transplant wherein his body had enough cells to elicit an immune response to fight illness, which resulted in a full recovery.
Five years later, Daniel is still in remission, with only a few lasting side effects — a natural reaction of graft-versus-host disease — from the transplants. Side effects which, according to Dr. Truitt, may signal a full and rare recovery.
|Dr. Robert L. Truitt during his research time at the Medical College of Wisconsin|
“The patients who have no graft-versus-host disease are at a higher risk of relapse because that means the immune reaction is not strong enough that you can detect any clinical evidence of it,” Dr. Truitt clarifies. “If there’s a little bit of evidence, like his fingernails, his skin, his eyes, but not affecting any of the internal organs, that means there’s a strong enough immune response that there’s things going on which mean the leukemia can’t come back because it’ll be killed off too. … The number one predictor [of success] is low graft-versus-host disease.”
The family has taken an important lesson from the diagnosis: make every day count.
“It changes in a heartbeat,” Andrea explains. “Your new normal, our new normal, is way different.”
Daniel adds, “I think we’re finally getting back to planning for the future a little bit, but you always learn to take a day at a time and see what’s coming and just plan accordingly. So I think it makes you appreciate the next day that you’re together.”
After much deliberation, the family took the impulsive opportunity to visit London last year, noting how important it is to take advantage of the chances you have and put family experiences first.
“It just brings everything into perspective from that standpoint. Every family should have that idea that you don’t know what tomorrow may bring. And just being able to do it and enjoy it,” Daniel says.
“Who knows? Who knows what’s going to happen? We’re both working. [We’ll] make more money. We’ll be fine. And so we [went to London] and it was kind of [like] ‘Oh my God. We came so far,’” Andrea says, looking back on their long road.
“[The kids] learned a lot through that process, and watching me go through it. I think even today they’re both a little more passionate [about] some things than other kids,” Daniel adds, even noting his oldest son is currently an aspiring surgeon.
“Do it now because you don’t know what the future holds,” Andrea encourages. MKE
Daniel and Andrea Knuf and Andrea’s father, Dr. Robert L. Truitt