Show Thumbnails
Show Captions

When Lincoln Maziasz was diagnosed with leukemia shortly after his fourth birthday, it was hard for his parents, Katie and Drew, to come to terms with.

Really hard.

There were the logistics of treatment protocol. Especially in a family with two other young children: Carter, who was 6 at the time, and Layne, who was 1 at the time.

During Lincoln's first year of treatment, he needed to stay overnight at the hospital 33 times.

"That was hard on the other kids," Drew said. "Especially on Carter, who was old enough to worry, and then when he got up in the morning, he would have Grandma helping him get ready for the bus instead of Mom and Dad."

Those overnight visits were also hard for Drew. "I would have to go to work and try to concentrate, but then go to Children's and switch gears to focus on Lincoln."

And, for Katie, it was difficult in a different way because it was just always about Lincoln. She was in the midst of a career change when Lincoln was diagnosed, and she quickly discovered that having a full-time job would make Lincoln's care too difficult. "That first year was pretty intense," she said. "There were multiple appointments and hospital visits, plus there was so much uncertainty about what we would have to do. I needed to be home to coordinate everything."

Living with uncertainty

The uncertainty of Lincoln's treatment plan has also been difficult for the family. His first year of treatment was broken up into six 2-month windows, each of which included different medications, different appointments and different inpatient stays.

"Each time we started a new window, we would find out the details of what to expect," Drew said. The problem was that Drew and Katie wouldn't know how Lincoln would react to each new phase. "We would figure it out and get into kind of a new routine, but it always seemed like by the time we figured it out, we would have to go on to the next window."

That uncertainty was exacerbated because it turns out that Lincoln has a rare type of leukemia. Acute Lymphocytic Leukemia, known as ALL, affects between 75 percent and 80 percent of children with leukemia, and Acute Myelogenous Leukemia, or AML, affects about 20 percent of children with leukemia.

The difference between the two types is the type of cell affected. In both cases, the bone marrow makes too much of a specific cell, which means the cells are too immature to effectively fight infection.

Katie said the doctors were almost positive Lincoln would have ALL since it's far more common. However, when the tests came back, doctors discovered that Lincoln actually has both ALL and AML.

Doctors were also surprised to find that, in Lincoln's ALL, his T-cells are affected, making his disease even more rare since it's more common for B-cells to be affected in ALL.

"It is difficult to treat because they have developed treatment plans for ALL and AML, but there is not a specific plan developed to treat both," Drew said. "So you are essentially needing the ALL protocol to knock out both types of cells."

Even though Lincoln's treatment plan is complicated by his dual diagnosis, his treatment should still be over in March 2021, and his prognosis is good. Katie said that people with the more common type of leukemia would be considered cured five years after the end of treatment. Things are a bit more uncertain for Lincoln because of the second type, but his doctors are fairly confident that both can go into remission.

Even the doctors' confidence, though, isn't enough to completely calm Katie's mind. "The treatments might be done, and he might be considered cured, but you just never know if it will come back," Katie said. "I wish there was a point where we could say, 'OK, it's done,' but it never really feels like that will ever happen. And that's one of the hardest things, that there's no end."

Finding a community

Dealing with the emotional toll was so hard when Lincoln was first diagnosed that it was something they couldn't even talk about at first. "When Lincoln was first diagnosed, I didn't even want to say the word cancer," Katie said.

Drew agrees, and said that he took even longer than Katie to be willing to talk to others about it because he's naturally a private person.

Eventually, though, as the couple learned more about childhood cancer and had more questions about how other families dealt with it, Katie wanted to reach out to those other families, especially those she found on the MACC Fund Facebook page.

That community of parents who understand what they're going through has ended up being a safe place for both Katie and Drew to talk about Lincoln's cancer. "When other people ask me about how Lincoln's doing, they don't understand a lot of the words I have to use," said Katie. "And sometimes I just don't want to have to explain over and over what it means that his hemoglobin is low or something."

Those are words she doesn't have to explain when she gets together with her fellow parents of kids with cancer. "It's a family you never want to be a part of," Katie said. "But if you have to be, the MACC Fund Family is great to be part of."

It's a family Drew and Katie didn't know existed two years ago. They've also discovered how widespread childhood cancer is. Katie was surprised to discover that childhood cancer isn't that uncommon. She said that there are five or six children with cancer just in their community in Menomonee Falls.

"When we go to the clinic at Children's every Tuesday for Lincoln's treatments, it's always full with 18-20 kids," Drew said. "And I never recognize them; they're always different. All those kids have cancer."

Accepting the generosity of others

The past year and a half have been full of meeting new people Katie and Drew never realized were out there.

The families of kids with cancer, yes.

The doctors and medical personnel who have been so important at Children's Hospital of Wisconsin, yes.

But also thousands and thousands of people who want to help them and families like them.

"It's kind of a silver lining of the situation just realizing all the people who want to come together and help, and all the organizations we've come across," said Katie. "We never knew all these places existed before. We've met some of the most amazing people who are just so caring and kind and generous."

There are a few organizations that have made a particular impact on the Maziasz family.

Lincoln and Carter, who are both Brewers fans, got their dream bedroom created by Special Spaces, an organization that remodels bedrooms of kids with life-threatening conditions.

"They sent us away for the night, and when we came back, the room was completely redone, and it's so amazing," Katie said.

One of the walls is a mural of Miller Park, the boys' closet has a curtain with images of Brewers jerseys for each boy, and the bedding and furniture are all baseball-themed.

Carter got in on the surprise because the boys share a room, and the designers decided they couldn't leave Layne out of the fun. She was thrilled with the pink fluffy rug, pink curtains and bed tent she got out of the deal.

Katie and Drew especially appreciate that kindness, and the realization that Lincoln isn't the only child in the family going through a difficult time.

"We basically didn't have friends over to our house for a whole year," Katie said. "We were just like, 'sorry, it's basically like Lincoln has no immune system right now.'"

That's why the family so appreciated the excursions and events provided by organizations like Gamerosity, which organized a family prom and a summer outdoor party they got to participate in. And Camp One Step, which held a family camp in fall that they got to go to. And Flight to the North Pole, a Christmas party that included gifts, treats, games, a visit with Santa and, yes, a "flight" to the North Pole from Mitchell International.

"Sometimes it gets to the point where we can almost feel guilty because people are so generous," Katie said.

But both she and Drew agree that it's important for their family to get the chance to have these fun experiences. "There's so much we can't do because of germs," Drew said. "Normally we would be going to places like waterparks and stuff, and we just can't do that right now."

Parents, you're not alone

Follow along

Finding out about the generosity of others has been one of the silver linings of Lincoln's illness for his parents. Another silver lining has been the ability to put things in perspective.

Drew said he noticed that effect when he observed some Milwaukee Bucks players who were visiting Children's one day. "Here you have these guys, in their early 20s, living their dreams," he said. "And I could tell it was humbling for them and that it changed the way they see things. It's unfortunate that it takes children battling illness to do that to people, but it does change you."

If you want to help

Katie works with three other moms of kids with cancer in her community to run blood drives and encourage people to join the bone marrow registry. Just those four kids have needed 100 transfusions in their young lives. 

You can sign up to donate blood or platelets with Versiti Blood Center of Wisconsin, and join Be the Match for bone marrow donation.


Today's Best from Wisconsin Family




FOLLOW WISCONSIN FAMILY: Facebook | Twitter | Instagram


Read or Share this story: