After receiving the shocking news of her leukemia diagnosis, Lori (above) faced a gruelling chemotherapy regimen. She got the treatment she needed through Sunnybrook’s complex malignant hematology program where the most vulnerable patients get specialized care.
(Photography by Doug Nicholson)
Lori Girard wasn’t sure she needed to go to the hospital.
The 38-year-old from Scarborough, Ont., didn’t feel that bad. She had also booked a hair appointment that day to cover up her greys, and she didn’t want to cancel.
But her mom convinced her to get checked out and her fiancé, Mehran Jabbari, agreed. Within nine hours, Lori heard the shocking diagnosis. She had leukemia.
“I certainly didn’t need that hair appointment because two weeks later, I didn’t have any hair at all from the chemotherapy,” Lori says.
“I laugh about it now. It gives you perspective.”
It’s a story that’s all too familiar for the thousands of people diagnosed each year with leukemia and other cancers of the blood. People with these types of illnesses face intensive treatment and a challenging prognosis, requiring care in a highly specialized in-patient environment.
That’s why Sunnybrook developed and launched its new complex malignant hematology (CMH) program last year, so that patients like Lori can get the care they need.
‘I was in disbelief’
Lori had been having mysterious pain for a couple of weeks. A fit, healthy person with a thriving career as a buyer, she could explain away her jaw pain (“I must have slept funny”) and her shoulder pain (“I shovelled the driveway”). But when the pain moved to her chest and she could feel it was swollen, Lori agreed she should go to an emergency department. She still didn’t think much could be wrong.
“At six that morning, I told Mehran to head home and get some rest,” she recalls. “Within a half an hour, a doctor came in the room and said they’d found blasts in my blood, [which are] found in people with leukemia. I was in disbelief. I called Mehran and told him to please hurry back.”
Leukemia is cancer that starts in the bone marrow, most likely caused by a series of genetic events in the DNA, says Dr. Rena Buckstein, head of the hematology site group at Sunnybrook. It causes immature blood cells (blasts) to duplicate, take over the blood and weaken the immune system.
“These cells should develop into fully formed mature red or white blood cells and platelets, but they don’t,” explains Dr. Buckstein.
As a result, patients often have symptoms stemming from anemia (fatigue and shortness of breath) and low platelet counts (easy bleeding and bruising). They may also experience unexplained fevers.
Acute leukemias can sometimes be a medical emergency, Dr. Buckstein says.
“These immature white blood cells grow and divide very quickly; they can basically multiply overnight,” she says. “If the white blood cell count gets too high, the blood gets thick and sluggish, filling the vascular system with these slow, sticky cells. This can lead to stroke, heart attack, breathing difficulties and kidney failure. The immune system is stressed, so it can also lead to infections.”
It’s important to start treatment as soon as possible, Dr. Buckstein says. In many cases, the goal is cure. In others, it’s disease control.
Preparing for treatment
Over the next two days, Lori underwent more tests – first to determine the type of leukemia she had, and next to determine if she’d be strong enough to receive the intense treatment.
The results came back that she had acute lymphoblastic leukemia (ALL), b-cell type. It’s the more rare form of adult leukemias, the other being acute myeloid leukemia (AML).
Lori and Mehran were able to go home for just one night before her treatment began.
“It was really strange. The Friday was overwhelming: my fiancé and I cried a lot. I called my sisters and we cried a lot. I called my mom and we cried a lot,” she says. “Then, on Saturday something switched for us and we got motivated. We were done feeling sorry for ourselves. We made a decision to have a ‘when I get out of here’ attitude rather than an ‘if I get out of here’ attitude.”
On March 17, Lori went to Sunnybrook and settled in for a 28-day stay at the new CMH Unit for inpatient chemotherapy treatment.
“There were, of course, highs and lows,” Lori says of her time in treatment. “Some days I’d get up and be in a great mood and go on my walks and the days would fly by. Other days, I’d feel terrible, but I knew it would pass and the team did its best to manage the pain.”
More specialized, streamlined care
The inpatient CMH Unit, along with an outpatient treatment clinic, opened in Dec. 2018 after two years of intense planning, says Steffanye Michaelson, patient care manager of both units. With support from the provincial government and investment from Sunnybrook, an existing space was completely renovated to meet the care needs of this vulnerable patient population.
“We cared for complex malignant hematology patients before, but this increases our capacity and allows for more specialized, streamlined care,” Michaelson says. “It’s been amazing watching this project go from blueprints to a fully functioning unit and clinic.”
It’s already become a well-oiled machine, Dr. Buckstein adds.
Patients can be admitted to the 15-bed CMH Unit straight from the Emergency Department, the outpatient clinic or transferred from the community.
“Our outpatient clinic allows for much faster arrangement of all the necessary tests, chemotherapy treatments, procedures and transfusions,” she says. “And we couldn’t do it without this dedicated, expert, multidisciplinary team led by nurse practitioners.”
Staff rotates between the inpatient unit and outpatient clinic, which means they really get to know patients and their families.
“We’ve heard from many of our families that they appreciate this continuity of care. People know them and they know their stories,” Michaelson says.
It’s something that hasn’t gone unnoticed by Lori, who says she looks forward to seeing the team each week for her ongoing treatments.
“Everything in my life changed,” she says. “I am on a leave from a career I love. Our wedding is on hold. But being here took the worst days of my life and made them better. It could have been so horrible. Having this team surrounding me made me so confident in the care I was receiving.”