Athina Merckx's Story

My name is Athina Merckx and I have quite a unique story. I have a diseasae that affects 2 to 4 in 1 million people. 

In February of 2019 I noticed pain in the back of my right knee. When I said something about it my family noticed a large bump had formed. First the doctors suspected it to be a Baker's cyst but after an ultrasound and later a biospy that was ruled out. The following months doctors diagnosed me with Desmoid Fibromatosis. We consulted a doctor in Columbus, Ohio who recommended surgery, and we ultimately travelled to Columbus in April of that year. Thankfully the surgery was successful in removing the tumour and I was on the road to recovery, which was not easy. 

While recoverying from surgery I developed Chronic Regional Pain Syndrome (CRPS), an incredibly painful neurological condition. I also developed drop foot because of the nerve damage that occured during the surgery which took countless hours of physio and over a year to recover from.

Months later one of my MRI's, that I get every three months, showed multiple tumours starting to grow in my right leg. This time I opted for a form of chemotherapy, a port was put in my chest and I started chemo in November of 2019. I was supposed to be on this chemotherapy for two years, however, the mental and physical side effects were too much for me to take so I stopped after a year. 

I've been on multiple different types of chemo's since, none showing successful progress. That is when in June of 2023 my doctors and I decided to try Cryoablation. Which attempts to freeze the inside of the tumours to kill them. The procedures affects for me were manageable with minimal loss of feeling in my calf and a couple days off my feet. 

I have recently stopped my fourth round of chemo and am doing IVF, something that desmoid patients have to think about for their future.

In August I am going to start a new FDA approved drug called Nirogacestat, it is the first medication approved to treat desmoid tumours and we are hoping to see some results. 

I am now a full-time student at the University of Victoria.

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.