Be positive, keep smiling and never give up.
These are words that Meghan Czerwinski lives by these days and for good reason.
The Waupaca High School senior returned to school Feb. 5 for the first time since a visit to the doctor revealed two inoperable brain tumors.
Czerwinski noticed she was having headaches, but didn’t tell her parents, Jon and Jennifer, right away.
“I was having headaches about a month before I actually told anybody,” she said. “They were pretty bad. I thought it was a migraine, so I would take Excedrin Migraine and they would go away right away. It was kind of like a pain in the back of my head and my neck, too. It’s hard to explain. I didn’t think anything was wrong.”
In late November, she went to Bethany Home in Waupaca, where she worked as a server.
“I had numbness on the whole left side of my body,” Meghan said. “I was serving food and I felt like I didn’t have a good grasp on the plates and stuff. I worked eight hours and it was like, ‘Something’s not right.’ That’s when I told my parents and I went to the doctor the next day. My doctor checked me out and I told him where my pain was. He said he had one patient in the last 30-some years that has actually come in and had a tumor. He said, ‘The chances of you having a tumor are probably very little.’ I had a CT scan done anyway.”
“I guess I didn’t even know she was having headaches,” Jon said at the family’s home in Farmington. “She was dealing with that with Jennifer. I come back from deer hunting and Jennifer says, ‘We have to take Meghan in the day after Thanksgiving, she’s getting numbness on her left side and she’s had headaches.’”
Getting the news
The Czerwinskis met at Riverside Medical Center in Waupaca and Meghan headed home after being examined.
“They said whoever’s going to read the CT scan will get back to us,” Jon said. “(Jennifer) calls me and says, ‘Get Meghan, tell her to turn around and come back.’ That was the start of it all. It was downhill from there. The day before, she was fine. Two days later, they’re digging into her head.”
“The tech came back out and he said, ‘Where’s Meghan?,’” Jennifer recalled. “I said, ‘She left.’ He said, ‘Well, can you get her back?’ I walked right back to the X-ray department and said, ‘What’s going on?’ He said he didn’t want to tell me. I said, ‘I’m her mother, she’s 17 years old.’ He took me back and showed me the picture and said, ‘There is something there, they’re probably going to want to transfer her.’ I lost it, I could just feel my body draining. She came to the clinic. I grabbed her and hugged her. I don’t remember what I said to her, but I was just crying. We were at Theda Clark an hour later being admitted. Worst thing ever in my life.”
“I was getting gas and my dad texted me and told me to go back to the hospital because mom wanted to see me,” Meghan said. “I walked in and my mom’s crying and she gave me a huge hug. I said, ‘Mom, what’s going on?’ She said, ‘You have a tumor.’ I was just in shock. I didn’t even know what to think. I was like, ‘What?’ I was crying pretty hard, but after an hour, I was OK. I kept saying I didn’t want to die because I didn’t know what was going to happen.”
“They found the big tumor on Friday and on Saturday, they had another doctor look at the MRI and they found the other tumor and they said that one was inoperable,” Jon said. “At that point, we didn’t know the outcome, but when you hear ‘inoperable tumor,’ what are you going to think? We’re all sitting in the same room. She’s crying, but you feel like you’re floating on a cloud and you can’t catch your breath. I walked out.”
Meghan went through the first of five surgeries Nov. 30 at Theda Clark Regional Medical Center in Neenah. Surgeons were able to remove 75 percent of the larger, egg-shaped tumor.
“They took 75 percent of the live part of it out because it’s so close to her central nervous system,” Jon said. “If they go any further, they could paralyze the left side of her body.”
“I was in the hospital for three weeks,” Meghan said. “It was just one surgery after another. After my major brain surgery, when they removed part of the large tumor, I had a hard time walking just because I sat in a hospital bed for so long. I kind of had to relearn the steps of walking. The large one is not cancerous, but they can’t do a biopsy on the small one because they’ll blind me because of where it is. It’s behind my pituitary gland, so it’s very dangerous to operate on. They can do chemotherapy and radiation on it, but they don’t want to do it yet because I’m still young. They said it’s most likely not cancerous because usually, they’re not. If it is going to grow, it’s going to be at a very slow rate because it’s a really low-grade tumor.”
The remaining 25 percent of the large tumor can’t be removed, according to Meghan.
“It’s too dangerous because of where it is,” she said. “They picked away at what they could and left the rest. I’ll have to have another brain surgery in two or three years to pick away at the large one again. If they want to do radiation or chemotherapy, they’ll do that.”
Her most recent surgery took place in mid-January at Children’s Hospital of Wisconsin in Wauwatosa.
“We had a good grip on the big tumor,” Jon said. “We thought we’ll deal with it and go with it. When they talked about an inoperable and untreatable one because of location, it scares the hell out of you. They don’t know (if it’s cancerous) because it’s so close to the optic nerve that she’d go blind if they attempted to do anything. Our understanding is the nerves for the optic eye are wrapped around that tumor. When that tumor grows, it puts a stress on those optic nerves. That’s why her left eye lost its peripheral vision.”
Although the second tumor is much smaller, it can’t be removed and could keep Meghan from driving.
“I’m not allowed to drive,” Meghan said. “I have to go to an opthamologist for a field vision test and that’ll determine if I can drive. They said I most likely won’t get my vision back because the tumor pushed my brain so much. My peripheral vision is what I have trouble with. My left eye is the most affected. They said I’ll be able to adapt to it over time, but right now, I have to really watch what I’m doing.”
Community support
It didn’t take long for word to spread about Meghan throughout the community.
“It’s amazing to see the support from not just the community,” Jon said. “It’s above and beyond and we talk about it every day. My mom goes to water aerobics and the fitness center and sells bracelets for $3 apiece. People we don’t even know are putting money in Meghan’s bank account. We have a Meghan’s Motivation benefit account and people have put $600 or $700 in that already by going to First National Bank and depositing the money. We have people buying T-shirts and saying, ‘I don’t want a T-shirt, just put this toward Meghan’s money.’ It’s been unbelievable and I can’t explain it.
“We have baskets and baskets of books, puzzles, games, food, jewelry and nice blankets from the first few days when Meghan was in the hospital,” he said. “I think we had over $1,700 in gas cards, $1,000 at (Jennifer’s) workplace and $1,000 at my workplace in cash donations. A good friend of ours for years gave $5,000 to her fund.”
“I want to thank everybody for the support,” Meghan said.
Facebook updates
The family keeps people updated on Meghan’s status through a Meghan’s Motivation page on Facebook. Jon writes most of the posts, but Meghan has also posted updates in the past.
“When I was in my surgeries, my dad would post statuses about how I was doing,” Meghan said. “It was really nice to wake up and have my dad read all the comments and who said this.”
“It was therapy for us and letting people know what’s going in our lives or Meghan’s life without having to make 500 phone calls,” Jon said. “It was bad between the phone ringing and text messages. We couldn’t keep up with them. This is a good way to inform everybody and let everybody know what’s going on while still leaving us to deal with it. We just needed time alone at first.
“When they did the biopsy, we had Jennifer’s side of the family and my family coming from Milwaukee,” he said. “We had 20 people there at the hospital and they sat there for six, seven hours. During the surgeries, I said, ‘Are we ready to write on there that Meghan has an inoperable tumor?’ It wasn’t something I just did. We had to let it sink in and do it at the right time.”
Back to school
Meghan had completed most of her required graduation credits before her surgeries, so she is only taking two English classes this semester: English 12 and Creative Writing.
“I’ll be going every day for a few hours,” she said. “After my last surgery, I knew that I probably wouldn’t have any more surgeries for a while. I kind of started getting things together. I only need an English credit to graduate. I pretty much finished all my credits during my junior year. I’m taking two classes, a half-credit for each class.”
She was also accepted to the University of Wisconsin-Oshkosh, where she plans to study physical therapy and attend school with her cousin and best friend, Brooke Trzebiatowski of Stevens Point.
“I got accepted to UW-Oshkosh right before all this happened,” she said. “I’ve been working on scholarships and financial aid. I think I’ll do OK once I get used to a routine.”
Returning to school for the first time in more than two months helped Meghan get back to a normal routine.
“I was excited, but I was kind of nervous, too,” she said. “It was kind of overwhelming because everyone wanted to say hi. Everyone was finishing their lunch. The bell rang and everybody ran down the hallway. It was kind of nice.”
Down the road
Why me?
It’s a question that Meghan asked several times.
“I told my dad that all the time,” she said. “After my tumor removal, I remember I was so sick and I said, ‘Dad, why is this happening and what did I do to deserve this?’”
“She has been so awesome,” Jennifer said. “I know she has said many times, ‘Mom, why is this happening, I’m only 17 years old.’ I don’t know the answer and I don’t know why, but her sense of humor and her smile and being upbeat helps everybody.”
“This is when she’s under anesthesia and she’s in an extreme amount of pain and just wanting relief from the pain,” Jon said. “She never says, ‘This isn’t fair’ or anything like that. She’s dealing with it.”
Jon is a jailer at the Waupaca County Sheriff’s Department, while Jennifer works at Waupaca’s ThedaCare clinic.
“It works out really well now because I’m home during the day with Meghan and she’s home with Meghan during the night,” Jon said. “We don’t need anybody here, but if there’s a problem, we want to have somebody here to drive her. You just feel that comfort zone if somebody’s here with her.”
Jon is the first to admit that his daughter isn’t out of the woods and may never be.
“This is probably something that follows her for the rest of her life,” he said. “If it doesn’t grow, she will still need an MRI every year for the rest of her life to make sure that it’s not coming back. I don’t think there’ll be any out of the woods for her ever unless they can get it under control. I think we have to get it into our minds that this is something that we’re going to have to deal with the best we can forever.
“As parents, we can sit there and say, ‘I wish we could take the pain away,’ but you can’t,” he said. “People ask us all the time how we deal with it. You know what? When it happens, you don’t have a choice, you just do it. You laugh and you joke and you try to carry on your life as normal as possible. You just cope.”