“I just want to be a Mom,” I said with a cracking voice and eyes filled with tears after the doctor diagnosed me with the unexpected C word. I was sitting in a hospital room breastfeeding my newborn son with my mom by my side and my husband on the other end of the phone, miles away, caring for our 2 and 5 year old daughters. I sat there thinking, I am the healthiest sick person you’d ever meet; how can I have cancer? I later found out it's not just a common cancer, but I have an ultra rare sarcoma with innumerable tumors throughout my body. Oh, and it gets worse, the cancer is incurable…
It all started in 2016 when I had upper right abdominal pain during my fertility assisted pregnancy with our daughter Juliet. This was our third pregnancy, as I tragically delivered our son Gabriel born sleeping in 2014 and miscarried our second pregnancy in 2015. An ultrasound investigating the pain showed a haemangioma on the liver and it was explained to be of no concern but to follow up in a year's time. We brushed it off and my husband, Tyrrell (Ty) and I dove into our new roles as Mom and Dad.
In 2017, our family relocated from our hometown of Charlottetown, Prince Edward Island to Yellowknife, Northwest Territories, Canada for a work opportunity in education and social work. With the cross country move, I unknowingly forgot about scheduling the follow up ultrasound as we were enjoying our Northern life and welcomed our second take home baby, Adeline in 2018.
As we approached 2020, I finally requested the ultrasound after years of nagging intermittent pain, in particular, when I’d breath deeply. The haemangioma was still present, and another 12 month follow up was recommended. I continued on as a busy working mom until the Fall, when the pain intensified and it brought me to the ER. A chest CT found “several small noncalcified rounded pulmonary nodules” in both lungs. The physician reassured there was nothing to worry about and to return in 4-6 months for a follow up CT. We left with more questions than answers. Our primary care physician also reassured us all would be okay. She encouraged us to continue with our plans of starting our last fertility journey we had scheduled and to repeat the scan after delivery. We trusted their medical opinion and moved forward with our plans.
In June 2021, we traveled back home to PEI to enjoy summer vacation with family and deliver our grand finale. We had one pit stop to make first; our Adeline had two surgeries scheduled at the IWK Children’s hospital in Halifax, Nova Scotia to repair a birth defect in her kidney. Thankfully the surgeries went as planned but days later, our summer took a turn. Our newest addition, Hatton, was born 5 weeks early after a traumatic emergency c-section from Placental Abruption and undetected Vasa Previa.
After a NICU stay, we were finally at our summer home, starting our new chapter as a family of 5. My life was perfect until the abdominal pain returned again; this time significantly worse. I tried desperately to hide the pain; to cram in as many adventures exploring the island with the kids before our return to the North but this time the pain was different. It overcame me and spread throughout my entire abdomen. I collapsed with violent tremors and began vomiting . When I realized what was happening to me, we were on route to the hospital. In the few words I mumbled, I begged for my children; longing to be caring for them as their mom. Urgent testing began and after a week of CTs, MRIs, ultrasounds, countless blood draws 15 liver lesions and innumerable lung nodules were found. Shock, confusion and heartache ensued.
The MRI suggested the liver lesions appeared fluid filled; suspecting pockets of infection. We were assured that a cancer diagnosis was very unlikely. I began IV antibiotics, preparing for a long road ahead of IV treatment and it was at this time we knew the possibility of returning North may be in question; our hearts sank. We began working with an Infectious Disease Specialist to explore the infection further and agreed to travel to Moncton, New Brunswick for biopsy. Somehow I wasn’t scared, I felt some closure was coming my way for the years of pain I pushed through.
Given our state of COVID 19, I went alone to Moncton via ambulance and I was told I’d return later that day. After the procedure in the recovery room while I awaited for the paramedics to arrive, I had intense pain at the site. Within an hour the pain escalated from my abdominal area to my neck and shoulder. Within minutes, the room swarmed with nurses and doctors and I was in a CT machine again; my IVs were blowing, the CT contrast was trying to push through my veins and I knew something was wrong, very wrong. I closed my eyes and thought, my body was failing me, this is it... I begged out for someone to call Ty. I needed him; tears began to stream down my face when I heard the doctor yell out, “we got it,” and an internal bleed from the site was found. I was rushed to the ICU and waited for my family.
Two hours later, Ty, 4 week old Hatton and my mother arrived in Moncton while our girls stayed with family back in PEI. I felt peace again as I nursed my newborn. The radiologist explained further testing would commence, noting they are going to try to find the metatasties of the liver lesions, as the biopsy noted the core to be a solid, and not liquid previously indicated. Another week of further exploration with more CTs, an endoscopy, colonoscopy, and more blood draws commenced and Ty returned to be with the girls as I stabilized in hospital trying to focus on caring for Hatton.
On August 20th, we received the shocking news that I was diagnosed with an ultra rare form of cancer; a sarcoma. The doctor couldn’t pronounce the name; as he explained its rarity. He gave us a copy of the Pathology report and it read “Epithelioid Hemangioendothelioma.” We later learned, it’s EHE for short. We were told to drive back to PEI and await a telephone call for next steps. I can remember thinking, that’s it, we are discharged? I want treatment now; where's the oncologist? It didn’t work that way…Days turned to weeks when we finally received a call for a PET scan. I wasn’t shocked they found additional tumors; one in my thigh muscle and one on my knee. That’s when it hit…I have Stage 4, metastatic cancer…
After that news, we made the decision to leave our life in Yellowknife, NT as medical staff advised we should stay close to our greatest supports and have quicker access to medical care on the East coast. We wanted to provide our children with as much stability as possible; a life surrounded with family helping to raise our children as they were losing their mother; and Ty, his wife...
Not only were we navigating a devastating diagnosis, but our children needed us; Adeline was still recovering from major surgery, Juliet was starting Kindergarten and begging for her Yellowknife home; Hatton, our preemie, trying to catch up on milestones and now Ty, seeking new employment, all while arranging an unexpected move across the country.
A week later, we had our first Oncologist appointment in New Brunswick. We arrived with hope but left with complete heartache when we were told there was nothing they could do but offer chemotherapy to try to lengthen the short time I had left. They provided a timeline of less than 5 years, most likely 3. We disagreed with his prognosis, how can I feel so good, but yet be so sick on the inside? It was an emotional drive back to PEI thinking of our 3 beautiful children.
The next day we met with a Sarcoma Oncologist at the Princess Margaret Cancer Treatment Center in Toronto, Ontario via teleconference. She was familiar with EHE and was truly a breath of fresh air. She described EHE, as an ultra rare sarcoma, with an occurrence rate found in less than 1 in a million patients, and sadly there is no known cure or even a proper treatment protocol. Due to the uniqueness of this cancer, there is no way to put a time frame on one’s life. EHE can remain dormant for years, even decades, but it also can be very aggressive with little to no warning signs. So with this, she recommended a “wait and watch” approach and scan in 3 months to re-evaluate. She reminded us to “just live,” enjoy this time with each other and our children.
Ty left for Yellowknife to pack up our home, as we said goodbye to all our belongings via Facetime. Our children and I were heartbroken. While Ty was away, back in PEI, I suffered an acute asthma attack. An urgent chest CT showed an advancement in my cancer; growth and new tumors were located. We knew with this news our “wait and watch” approach would come to an end and my treatment would begin. On September 24th, 2021, I stopped breastfeeding our now two month old, and started taking 4 little experimental pills. The hope was to slow the growth and maybe even shrink the tumors. Sure enough, that's exactly what it has been doing…I am stable.
No new tumors, no growth, and the latest CTs even showed SHRINKAGE! This experimental drug is working, it’s actually working. Part of me is jumping up and down with excitement but the other part is exhausted. The chronic pain, the blood work and the repeated scans are constant reminders that my life has changed forever; our families life has changed forever. Every ache, lump or bump makes you question further metastities; your mind is always racing. You try to Just Live, take in every moment, not knowing when it’ll all be over. I didn’t sign up for this battle. I shouldn’t have to fight everyday for my life…but here I am; almost a year into this unimaginable journey as a now “retired” social worker, a loving wife, and a new “stay at home mom of 3” who wants nothing more than to watch her children grow up.
So here I sit, in our newly built home in PEI, waiting, and longing for a cure.