Athina's Journey: A Story of Resilience and Hope

At just 15 years old, my life took an unexpected turn that would reshape my future. I'm Athina Merckx, and I live with a rare condition that affects only 2 to 4 people in a million. This is my story of challenge, courage, and unwavering hope.

It began innocently enough in February 2019 with knee pain after swim practice. What started as a concerning bump led to a diagnosis that would change everything - Desmoid Fibromatosis. Our search for answers took us to Columbus, Ohio, where I underwent surgery to remove the tumor. But this was just the beginning of my journey.

The recovery brought its own battles. I developed Chronic Regional Pain Syndrome (CRPS), experiencing pain beyond anything I could have imagined. Drop foot from nerve damage meant countless hours of physiotherapy, testing my determination daily. Yet even after a year of recovery and progress, my three-month check-up MRI revealed new tumors in my right leg.

My fight continued with multiple rounds of chemotherapy, starting in November 2019. The port in my chest became a constant reminder of my battle. While the initial two-year treatment plan proved too challenging, I persevered through various chemotherapy options, each bringing its own trials and disappointments. In June 2023, we tried a new approach - Cryoablation, freezing the tumors from within. Though this brought some relief, my journey with treatments continues.

Today, I'm facing new chapters in my story. I've recently completed IVF, thinking ahead to future possibilities - a reality many young desmoid patients must consider. There's new hope on the horizon with Nirogacestat, the first FDA-approved medication specifically for desmoid tumors. While balancing life as a full-time student at the University of Victoria, I remain optimistic about this next treatment.

My experience has taught me that while this disease may be rare, the strength to fight it isn't. Through Athina's Ride, I'm turning my personal battle into a movement of hope and action, proving that together, we can make a difference in the lives of all those affected by desmoid tumors.

A Desmoid Story
by Carly Nichols

It was an ordinary September afternoon. I decided to lay down while my youngest was sleeping. Before I had
fallen asleep, I rolled on my stomach onto what I thought was one of my girls toys. That’s when I discovered a
decent sized lump on my abdomen, right below my ribs.
I sat up on the edge of my bed, my mind racing. It felt like my stomach had sunk to my toes. What would
suddenly appear like this? My instinct told me it couldn’t be good.
My initial diagnosis was overshadowed by an urgent need to have my gallbladder removed. I was scheduled
for surgery and they were going to remove the lump at the same time. The surgeon sent me for an ultrasound
ahead of the surgery. Then I received a call that the surgery had been cancelled and he wanted me to go for
an MRI. Then a biopsy. Then the agonizing wait. The biopsy had to be sent on to the soft tissue team at LHSC
(in London, ON) for further review and confirmation of the diagnosis. It was aggressive fibromatosis: a
desmoid tumour.
I was referred quickly to an oncologist who was well familiar with desmoid tumours. We started with a watch
and wait approach (and naproxen). With MRI’s every two to three months it didn’t take long for her to see that
my tumour was growing at a concerning rate.
It was April 2020, the beginning weeks of covid. Everything was shut down, and my oncologist called to talk
about starting chemo. I could hardly believe the words coming out of her mouth. I was only 38. So while other
people had MRI’s and surgeries canceled due to covid, mine was getting pushed through as urgent. My port
was put in and days later I was sitting in a treatment chair, staring at the wigs on display, scared and
overwhelmed. It felt like time was standing still.
I went on to have thirteen months of IV chemotherapy (methotrexate and vinorelbine). Words still fail to
adequately summarize how hard that time was. It was such an array of challenging realities: the dread of
another treatment coming, being sick all over again with increased intensity as the months passed, the nurses
failed attempts of getting my finicky port hooked up and all the anxiety it brought. I wasn’t prepared for any of
it. How could you be? I especially could not have known how hard the mental struggle of it all would be. I
would hit walls and feel like I couldn’t possibly bare another treatment. My community around me was strong
and my faith sustaining, and somehow, I made it through, one treatment at a time. The hardest thing perhaps,
was navigating a desmoid diagnosis and treatment with young children. My girls were 1 and 4 when I was
diagnosed in 2019 and I tried hard to keep life as normal for them as I could in the months and years that
followed.
The one year mark came and went and I was struggling to handle the treatments again. Physically,
emotionally, and mentally, it was such a battle and I was still scheduled for another full year. It was to be a two
year treatment plan. It seemed impossible.
In my thirteenth month I saw my oncologist for MRI results. The tumour had stabilized three months prior, with
the slightest amount of shrinkage. Well, on that June day in 2021, after 37 treatments, I heard the news that
my tumour was mostly gone! It was too small to even assign measurements to! Treatment had been
successful! I could hardly believe my ears and I don’t think I’ll ever experience the kind of shock and relief that
I felt that day. All remaining 11 months of chemo were cancelled, including my treatment that was scheduled
for the following morning.
Recovering from all that chemo sure took time. I continued having MRI’s every three months, then six months.
They continued to be clear. Each time has been such sweet relief and a tremendous gift of time and health.
My last MRI was clear enough they said I could go a whole year before seeing them again. My next check will
be in June (2024).
I used to think that our lives are defined by the choices we make. Since my diagnosis, I’ve realized that it’s
really the experiences we didn’t choose that end up defining us the most. There is beauty though, in all of it.

In the ordinary days and in the diagnosis that you could have never seen coming. We are so much stronger
than we think we are. I hope my story gives hope to those recently diagnosed, or still doing treatment, for
those caregiving or wanting to donate to the cause. Together, we can find a cure.