Living her best life for the rest of her life
Just last year, Heather Allen was living a typical life for a young woman in her 20s. She started a new job, was involved in two wedding parties, and was going through the ups and downs of renovations at her home in Ridgeway, Ontario.
Little did she know how much her life would change in the next few months.
“My anxiety was high. I’m normally a pretty calm person, but I thought it was stress,” says Allen. “My father was diagnosed with cancer in 2011 – and beat it – so I know what cancer patients go through. But I never thought something like this would happen to me.”
In December 2019, Allen was diagnosed with chronic myelomonocytic leukemia (CMML), a type of rare blood cancer. It came as shock, even to her doctors, since CMML most affects men aged 60 years or older.
From one diagnosis to another
It all started in November 2019, when Allen began experiencing symptoms such as vomiting, and muscle pain in her right shoulder. Then one morning, she was woken up by an intense burning sensation in her lungs.
“I went to urgent care in Fort Erie,” she says. “Immediately, they thought I was having a heart attack or a blood clot. I was sent to a hospital in Welland in an ambulance where I stayed for a week.”
Doctors there had diagnosed Allen with pericarditis, inflammation of the heart membrane. The inflammation was putting pressure on her lungs, making it difficult to breathe. Blood work showed Allen had a high white blood cell count, which doctors attributed to the infection. She was discharged from the hospital but would return a couple of days later after she started vomiting again. Allen was admitted for another nine days.
“My white blood cell count was very high. I had more blood work done at the hospital in Welland and found out my white blood cell count had doubled. In December, I had an appointment for a bone marrow biopsy.
That’s when I found out I have leukemia.”
Stem cell transplant during COVID-19
Heather Allen and Mark Silvestri spent the summer isolating at a local hotel close to JHCC, where Allen was undergoing treatment.
Blood transfusions helped Allen gain her strength back and she was scheduled to move forward with a bone marrow transplant in April 2020. Luckily, Allen’s sister was a 100% match.
“I was very optimistic,” says Allen.
But before she could move forward with the transplant, Allen learned from her doctors that her leukemia was worsening; it had developed into acute myeloid leukemia (AML). She was admitted to Juravinski Hospital and Cancer Centre (JHCC) where she stayed for over a month for chemotherapy and other treatments. The chemotherapy worked – killing virtually almost all cancer cells.
“I needed to be close to the hospital in case I developed a fever or an infection, so I stayed at a local hotel. And because this was during COVID, I wasn’t allowed any visitors other than my boyfriend, Mark. I couldn’t see family or friends. It all had to be over FaceTime,” explains Allen.
“I decided that I’m going to live my best life.”
Allen and her boyfriend Mark Silvestri spent the summer in isolation, building LEGO in their hotel room to pass the time. “I built a Harry Potter castle. It was therapeutic in many ways for me,” says Allen.
She would continue going to the hospital twice a week for blood transfusions, but after 88 days, the transplant from her sister stopped working. By late August 2020, her platelet count plunged, indicating the cancer was presenting again. In early September, Allen learned it was terminal.
“I decided that I’m going to live my best life. Mark and I went back to the hotel. My parents and my sister came and started helping me pack my things. I went home on September 11 and started planning our wedding,” explains Allen.
Her sister knew of a wedding officiant and a friend suggested a professional videographer to capture the wedding ceremony. On September 16, Allen and Silvestri were married in a COVID-compliant ceremony at a park in Fonthill, Ontario. What they didn’t know at the time, though, was that her care team back at JHCC was planning something special for her next appointment.
Surprise wedding celebration in the hospital
Allen’s care team at JHCC surprised the couple with a decorated room for Allen’s next appointment.
After learning her cancer was terminal, Allen shared the news with her care team at JHCC that Mark surprised her that same night by proposing.
To surprise Allen on her next visit to JHCC, the nurses from the oncology day services team decked out her room with wedding décor, even buying a cake for the newly-wed couple to cut.
Allen’s care team at JHCC bought a cake to celebrate Allen and Silvestri’s wedding.
“The team wanted to celebrate with Heather and Mark,” says Karen Robinson, clinical manager of inpatient oncology. “The team has so much compassion for their patients. Heather and Mark walked in and when they saw the wedding décor and treats, they were so touched.”
“We were so surprised,” says Allen. “They were like my family. They knew I was alone and were so comforting, so generous, and kind. The social workers were there for me every step of the way. I can’t say enough good things about them.”
Spend your time with the people you love
Allen continues to receive blood transfusions at JHCC to maintain a quality of life.
“When you’re in a situation you can’t control, you have to roll with it. Don’t waste your energy on negativity. I’m just going to live my life my way. Do as much as I can while I can,” says Allen.
“Time is expensive – you can’t get a refund and you can’t buy more of it. Spend it with the people you love.”
