Creating a whole new normal
Packers’ fans are a caring group – sometimes described as the most winsome fans in the league – and it hurts us when others are hurting.
Empathy pours out of us to see injustice and pain anywhere, but it’s especially true of those in our fraternity.
A huge Packers fan, Meghan Czerwinski, could use an outpouring of care and prayers as she battles brain tumors.
You won’t find her complaining. Meghan is forever positive in all of her social media. She may ask for a little help before a daunting day, like the one she just had in Milwaukee a few weeks ago, but she won’t whine.
“Well, it’s been two years, you gotta deal with it over time, somehow,” she noted. “I mean I’m not positive all the time, everybody’s got a breaking point.
“I would not be anywhere near as positive without the support. That and the Facebook page (Meghan’s Motivation) helps a ton. I open up on the page more. I can just talk and let everything out. Everybody will listen to what I have to say. So that’s kind of nice. “
Many people lean on their religion in the form of prayers for hope. Meghan gets some help from her grandmother Jeanette Young on that.
“My grandma is very religious so she does a lot of that for me,” she said. “She keeps me on all her prayer lists. She’s very Christian.
“I am Christian, just not as strongly as she is. I will go to church, just not as often as I think I should. As I know I should, because I’m very blessed to be where I am.”
Where she is can be described as a 19-year-old girl who was first diagnosed with a brain tumor on what should have been a joyous holiday, setting her on a thus-far two-year ordeal.
Meghan’s first reaction was as heart-breaking as it was understandable.
“I went into the doctor the day after Thanksgiving, 2013, I was having some left-sided numbness,” she recalled. “I thought I had a pinched nerve and I’d been having some headaches and just wanted it checked out by my family doctor. I did the five-minute MRI test and they found out it was a tumor.
“I thought I was going to die!” Meghan admitted.
We both pause for a moment to choke back the emotion rising to the top before I finally croak, “What happened then?”
She continued, “They transported me immediately to the closest hospital that had a neurosurgeon, which was Neenah. They had another MRI that was a 45-minute MRI, and they found another tumor on my optic nerve. The next day they did a biopsy surgery and that started a whole fleet of surgeries. I stayed in the hospital for three weeks and they did 4 surgeries and that started a long road… a long, long road. I’m still going, seven brain surgeries later.“
Those seven include an initial biopsy to check the central nervous system glioma tumor, a nine-hour re-section carniotomy, a shunt placement, four shunt revisions and a pressure relief surgery. The Y-shaped v.p. shunt drains from a tube into her stomach.
Meghan also has an inoperable optic nerve glioma tumor.
“Because it could blind me if they try to touch it,” she explained. “My left eye has complete tunnel vision and my right eye I can see on the lower right side, but it’s almost tunnel vision. When I walk, I really have to focus.
“My opthamologist is really optimistic about what they’re going to be able to do in the future, the technology with the cones and rods. Hopefully, I’ll be able to get my vision back, but right now the nerve is so damaged they can’t do anything.”
“They’re both pretty large,” she said. “The central nervous tumor was the size of an egg before the surgery. I’m not sure of the size now. My opthamologist told me the optic nerve tumor is an inch long and the size of a pea around.”
After her Dec. 2 appointment – the latest in an every-three-month cycle – Meghan noted:
“My latest appointment, everything with my shunt looks good,” she said. “It’s all connected. That’s what we were most concerned about because it was bothering me, my head and my skull. My headaches. Tumor size looks good, cysts look good. Everything looks good, so they’re not concerned. So far, so good.”
‘So good’ is a relative term to someone with brain tumors. Meghan is still suffering some.
“They just put me on some new medication (to tame her constant headaches), so we’ll see how that works,” she explained. “It just takes a few weeks to kick in. As of late, they’ve been increasing. I’ve been having them daily, on and off all day, just a dull headache. (If they get worse) it’s mostly at night. Hopefully, they’ll put in a new shunt to see if that helps.
“I’m going to start up with the chiropractor (Miriam Leean) again. It seems to help, a lot.
“She’s a miracle worker with my headaches. She cracks my neck and I don’t know if it’s something with spinal fluid when I get swelling. It doesn’t work right after she snaps it, but the day after I feel amazing.
Another miracle worker is much younger – a five-year-old girl named Gianna Kronauer – and she worked her healing on Meghan’s heart.
“Oh my gosh, she’s adorable,” Meghan gushed. “She’s such a sweetheart. I met her after my oncology meeting in September (2015) when they found those cysts. Oh, I needed it so bad. She was so adorable. They found those two cysts and it was an awful day. I was playing with her while my mom was talking to her mom, and her mom said that when she was born, she had an eight-pound tumor on her tailbone and she weighed 10 pounds total.
“I was holding her and she was so playful, I never would have known she was sick. When I had a seizure in October, she sent me a message when I was in the hospital, ‘I love you, Meghan!’ Aw, I love her!”
According to Meghan, Gianna currently has a clean bill of health.
“When she gets older she’ll get implants, and she’ll have to go in to the oncologist for routine check-ins,” Meghan said.
The video can be found at Meghan’s Motivation Facebook page at Oct. 6.
Another angel appears in the form of her best friend and cousin, Brooke Trzebiatowski.
“We’ve been best friends ever since we were born,” Meghan said. “And when I was first diagnosed, she was the first person at the hospital besides my aunt (Jacci Olsen). She was there for every surgery. She was in the ambulance when I had my (first grand mal) seizure. She always has been and she always will be there for me, so she’s been fantastic through all of it.”
Her relationship with her brother Adam has grown since her tumors appeared.
“When we were little we weren’t very close,” Meghan noted. “Through the years we’ve gotten closer and when I got sick, we’re kind of like best friends. We’re very, very close.”
A final avenue of relief comes from her partner in crime.
“I have always been very close with my dad and now I’m even more after I got sick,” she explained. “Me and my dad are just very alike. We have the same sense of humor, especially when it comes to my illness. We joke about my illness all the time. That’s how I get through things.
“We’ll joke about my illness in the hospital and people will look at us like, ‘You are some sick people!’ “
You can spot the two together in several posts on Facebook pages for Meghan’s Motivation and her personal page. What’s missing is her mom, Jennifer.
“My mom doesn’t like to be in very many posts,” Meghan noted. “She’s in her pajamas a lot.”
You either hear of today’s miraculous cures or heart-wrenching failures, and while you obviously pray for the former, at least with either you get some resolution.
But Meghan is basically locked in limbo.
“We’re kind of stuck on what to do,” she noted of the most-recent results from a Dec. 2 day-long testing in Milwaukee. “My surgeon just doesn’t have any answers, so it’s a good thing/bad thing kind of thing. We’re not doing anything because there’s not much to do. They don’t want to harm anything. There was no tumor growth. There was cyst growth, but not enough to do surgery of any kind.
“You want to be proactive, but you feel if you do anything, you might harm something. You don’t know what the outcome is going to be.
“I feel like I should be doing something, like I should be moving on, but I’m kind of just waiting until I feel better, for sure, to move on. Because I don’t want to get a job or go back to school and start feeling sick again and take a step backwards and then be back here again. I’m just like waiting… and waiting and waiting and waiting. And then I know my parents would be mad at me and I’d freak out again and then I’d have another seizure. So I’m just going to take my time and be patient, even though I’m bad at being patient. “
Seizures are another symptom of the tumors that break up the harmony in Meghan’s life.
“Seizures are awful,” she said. “But at least I’m glad it’s happened before because at least I know what they’re like. When I had my first one last year, I had absolutely no idea of what was going on and I was seriously freaking out and I thought I was dying. The scariest thing of my life.
“And then when I had my latest one, I knew what was going on with my body, so I could go downstairs and tell my dad what was going on. When I was going through it, I knew what was going on. So I wasn’t panicking, and the feeling wasn’t as scary.
“The grand mal ones I’ve only had twice, but the partial ones I’ve had handfuls and handfuls and handfuls of times. I don’t even know how many I’ve had. They say it’s stress and environment, the adrenal in my system… they just don’t know. It could just be the tumors or the cysts. It’s mysterious.”
At least the treatment hasn’t included chemo.
“Nope, which is good,” she said. “We don’t like chemotherapy. It’s not good for your body or your immune system.”
Brain Tumor Awareness Day, Nov. 5, obviously isn’t as well known as other maladies that get whole months.
“I actually didn’t know about it until my aunt (Jacci) called this year,” Meghan said. “Everybody (the staff at Theda-Care Medical Center) was wearing gray and they took a picture. They got me and my boyfriend (Lucas Murphy) doing it. That was pretty awesome.”
The Packers connection
So just how long has Meghan been a part of the fraternity of Packers fans?
“Since I was born, born into a Packer family,” she said. “Everybody in the family is one.
“Packer parties were a big thing at our house. We’re an entertaining family, we always had parties at our house. I just listen to the guys when we watch the Packers. I don’t really know a lot about football. I can pretend like I know things.”
Meghan took that up to the next level when she got up close and personal for her first game at Lambeau Field on Oct. 18, with the Packers facing the San Diego Chargers.
“My dad wanted to make an impression and got front-row seats. He used to work at a car place and got tickets from somebody who he used to work with.
“He said, ‘I can’t make the game. You just use them.’ ‘Well, thanks, cool.’ ”
Meghan got a boost on Nov. 13, with the arrival of a special gift her dad had arranged. An autographed photo of linebacker Clay Matthews, III.
“That was amazing,” she stated. “I was not expecting that at all. That was the neat thing. I went down there (to our basement). I kind of caught on a little bit, because Fed-Ex dropped it off and it was labelled Meghan’s Motivation, not for our house.
“He’s one of the family’s favorites. When (my dad) told me he talked to (Clay) personally, I didn’t even know you could do that.”
Clay’s inscription read: To Meghan – Keep Fighting!
I don’t think there’s any doubt that Meghan will do that with all she’s got. This brave girl doesn’t know the meaning of quit.
Packer Nation, join her team at Meghan’s Motivation.
One of the biggest worries for any family with catastrophic medical care is the expenses not covered, or limits exceeded.
“We have very good insurance and we have a very good community, Meghan noted. “We’ve had a motorcycle benefit. A firefighter benefit, just a lot of small things done for me. A T-shirt benefit, a bracelet benefit. Just so many things done for me that have raised so much money for me and my family. It’s amazing. People have gone to the bank and opened up an account for me and donated anonymously.
That doesn’t mean Meghan’s family couldn’t use some extra help with current and future medical expenses. If you would like to help, contact the First National Bank of Waupaca, and make a donation under Meghan’s Motivation.
Facebook can often be frivolous, but Meghan finds it gives her a voice and confirmation she can’t find elsewhere. She bares her soul here:
Nov. 29, 2015
People think it’s crazy to see me, a teenager diagnosed at the age of 17 with an illness as scary as two brain tumors, overcome so many difficulties with such a good attitude. And to be honest, sometimes my own strength even surprises me. But it doesn’t mean I don’t struggle. On a daily basis, my friends and family see me try very hard to work with the disease that has taken so much from me, both physically and emotionally. The feeling on the left side of my body, a lot of my vision, the unknown future of my health, and quite a bit of my independence. Whether I show it or not, it has all taken a toll on me. But looking back at the past two years, I’m able to see all of the good that has come out of the bad. I’ve had unique opportunities and experiences that I never would’ve gotten without this life changing diagnosis. I’ve had numerous benefits to help me and family including a motorcycle ride sponsored by Kim Pope Memorial Ride! I’m a part of the Make-A-Wish program that has opened me up to a whole new world of opportunity. I’ve made friends and met so many incredible people that feel more like family. The countless number of surgeons, doctors, nurses, and staff from the hospital in town, in Neenah, and all the way to Milwaukee where I’m currently being treated, who have all at one time helped save my life with such compassion and gentle care. But it’s the constant support from everyone I see and everyone on this page that keeps me going. I’ve created a whole new normal for myself and it’s been a lot easier transition because of everyone that’s been here for me along the way. So I really want to thank you all from the bottom of my heart for everything that’s been done for me and my family throughout the years. Whether it was a gift, a letter, a message, or a comment on a post, it’s all motivated me to never give up. In a weird way, I’ve turned everything I’ve been handed into an eye opening blessing that has taught me so much. Two years ago today, I was faced with a diagnosis that would change my life. Words can not describe how grateful I am to still be here today. I look forward to so many more years of being able to proudly share my story, no matter what kind of challenges it may bring along the way!
Today is December 9th, which means one of two things. It is my moms birthday, and the anniversary of my craniotomy! The first picture is after that 9 hour surgery… I know it seems crazy to say, but I’m waiting for the day I go there and there’s a major change in my scan where my doctors decide to plan surgery. It just gets tiring going month after month and leaving with no answer but still continuing to have pain. But I guess that’s the thing with a mysterious illness, there’s no answer. And like my dad said in the last post, with the amount of issues in my body with the two tumors, two cysts, shunt with two draining ports, and headaches, the causing factors are endless. I was told shunt revision surgery was a possibility… I’ve had to make a lot of hard decisions over the last couple years but I’m glad I’ve had the guidance of my parents and my doctors at Froedtert because sometimes I can be rash. 🙂
Yesterday, I went to my very first Packer Game at Lambeau Field! It was an incredible day where we met incredible people. While we were tailgating, we were laughing and joking with people parked all around us. Fate brought our family with another family yesterday also! We got to talking more personally with them and they told us that their daughter was diagnosed with leukemia when she was 2 years old and was a Make-A-Wish kid. She is now 20 years old and in full remission of the cancer. My parents then told them about me and they were in shock when they were told about my illness. They told me that they never would’ve guessed how much I’ve been through by looking at me. We spent a couple hours grilling, talking, and joking around with them before we headed into the stadium. They all hugged me and wished me the best of luck, but reassured me that i didn’t need luck to come out on top. It’s crazy how things work out and we are incredibly blessed to have met another great family! We were in the first row of the game and it was pretty insane to see everything so up close! During warm ups, one of the footballs landed on the sidelines by us and a player from the Chargers came to get it. If you think they look big on TV, they’re even bigger when one is standing right in front of you! We had a lot of fun with the fans in the stand and even the cop standing on the sidelines! From start to finish, it was an amazing day and I’d like to think that the Packers dedicated that win to me. Thanks for a great day mom and dad and Rod/Casey Neuville for getting us the tickets!!
Facebook post[[Brooke Trzebiatowski – Two years ago today, our family received a call that broke all of our hearts. At just 17, my best friend was diagnosed with two brain tumors. With numerous surgeries, months in the hospital, constant headaches, seizures, and loss of vision and independence, this girl has amazed me since day 1 with a contagious smile and a fighting attitude. I know life has been tough on you Meghan, but you’ve inspired so many people with your attitude. I know it’ll be tough going back in on December 2nd and taking a few steps back will be hard, but I will be by your side along with all your family and friends. I can’t wait to spend nights in the hospital crammed in a tiny bed again with nurses constantly waking us up (I’ll even sleep in the green monster if you want) and I hope to annoy the crap out of Jon with the rolley chair. I love you all and I continue to pray for you daily! Happy 2 years of fighting Czerwinski strong]] As a reply to the post, facebook style:
[[Meghan – The gone, but never forgotten day 2 years ago. It’s a rough life, but I’m thankful every day to still be here to fight through it. Kickin’ ass since November 29, 2013.
Facebook post (via Jon Czerwinski)
Well we finally returned home from another bitter sweet day. I’m writing the post as Meghan’s tired and mentally drained. To start out the tumors show no growth and the cyst growing on the one tumor shows a small amount of growth but nothing serious. The frustrating thing is Meghan has constant headaches, pain on her head where the shunt splints off and small episodes of seizures. Her surgeon said with her weaning off her migraine medication and possible shunt drainage problems, he recommends a resection of the tumor as a last resort because he doesn’t believe that’s the problem and it’s a drastic measure for the slim chance of curing her issues. First, he said we’re going to try a new medication for a few weeks and see if that makes a difference and he wants her to try and do a flat bed rest day (no sitting up except for bathroom and eating) and see if the headaches are less painful or gone all together (this will tell him if the shunt is draining to much fluid when she gets up increasing her head pain. His plan of action would be to do a shunt revision then. Second, he would put a permanent tube in her cyst that comes out the skull and her scalp would cover it, they could access it with a needle and drain the cyst which he said could be every 6 months, a year or years, he said cysts are very unpredictable. Third, would be a resection. He said doing that would continue to weaken the left side of her body without regaining that back ever (something we never knew) and he believes that tumor is stable and he doesn’t want to irritate it. So right now it stands she will try the new medication but he also stipulated if she does not see an improvement in a few weeks and her health worsens by any means to call them and they’ll make a decision to do surgery to try and correct it. We were upset that nothing was found to help her but also happy the tumor is not growing. The surgeon said Meghan has so much going on in her head that pinpointing the exact problem is difficult and he doesn’t want to make a decision that could affect the rest of her life with only a 20% chance of curing her current issues. We’re going to bed as the day was long, the roads were terrifyingly dangerous this morning and we’re all emotionally shot. On a good note, we got home and Adam decorated the house for Christmas and had the whole place cleaned up and looking sharp. Thanks Adam. Hopefully Meghan can give you her side in the next day or two. Thanks for all the special words and messages it makes the day go by faster and gives us so much hope and support. We love you all.