Wayne Clark is one of the first and few Ontario patients to receive a stem cell transplant in Buffalo while hospitals in his home province sort through a capacity disaster.
After nine months of outpatient chemotherapy for a blood disorder that could escalate to acute leukemia, Clark, now 71, was offered a shot in September 2015 to bypass the lengthy waiting list at Juravinski Hospital in Hamilton. At the time, he was one of nearly 200 Ontario patients on the waiting list for a stem cell transplant. His body was ready for a transplant four months earlier, but Juravinski couldn’t schedule one because of its heavy caseload.
However, Ontario’s Ministry of Health had struck deals with three U.S. hospitals — Roswell Park Cancer Institute in Buffalo, Karmanos Cancer Institute in Detroit and the Cleveland Clinic in Cleveland — to provide stem cell transplants to patients from the province.
Roswell could admit Clark immediately and offer in-patient care with round-the-clock nursing. If he stayed in Ontario, it was possible he would become an outpatient very quickly after the transplant, putting the burden of care for a medically fragile man whose body had just received a new immune system onto his wife, Ida.
“When I explained that to a couple of nurses at (Roswell), that this procedure in Ontario could be done as an outpatient, they couldn’t believe it. They said I misunderstood. I said, that’s one of the reasons I’m here. I wanted to be hospitalized for a critical medical procedure.”
Before the transplant can occur, the patient’s body must be prepared to accept healthy new donor cells. Chemotherapy and radiation are used to clear parts of the cancerous marrow, essentially creating space for the new stem cells to thrive.
The tricky part — the Goldilocks phenomenon, as McCarthy calls it — is figuring out the “just right” formula of drugs that will allow the donor’s immune system to eradicate diseased marrow without wildly attacking the patient’s normal tissue. It’s a common reaction called “graft versus host disease” that could be fatal.
In the first four weeks post-transplant, patients are monitored daily for signs of this disease. Medication is adjusted accordingly. Because the patient is highly susceptible to life-threatening infection during this time, recovery rooms are obsessively cleaned and pumped with filtered air.
The Clarks called Roswell Park home for four months.
During that time, Ida moved into a room at the nearby Kevin Guest House, which bills itself as “America’s first health care hospitality house.”
While the centre requires that patients travel with a caregiver, the ministry funds only the cost of medical treatment and nothing to offset the expenses incurred by patients and their families while receiving life-saving care in the U.S.
Roswell has agreed to subsidize lodging costs for its Canadian stem cell patients, so the Clarks paid roughly $10 daily during their stay. Hot meals were often provided in the house’s communal dining room by kind volunteers and the families of other patients.
Clark was in hospital for 28 days. After discharge, he needed to remain close to Roswell for months longer so he moved with his wife to a larger apartment unit that is part of Kevin Guest House. (The rate remained unchanged.) In the follow-up period, Clark developed a virus that required daily drug infusions for four weeks. When he wasn’t in hospital, it was Ida’s job to flush the ports on Wayne’s body with saline solution so his intravenous treatments flowed without clogging.
Clark is home in Brantford now, “getting over a cold that unfortunately has knocked the wind out of me.”
He’s weak, “not a lot of strength in my legs,” but it’s too soon to expect much change.
“You don’t look at change day to day,” he says. The recovery process is slow. “Very, very, very slow.”
But he’s optimistic and thankful that everything has gone as well as it has.
“I really can’t say enough to endorse the medical team and the entire experience we had,” Clark said.
“We have over 60 people every day who are directly involved in a patient’s care,” McCarthy says, referring to doctors, nurses, lab technicians, pharmacists and other support workers. “It’s an incredibly complex system so we have to develop as many efficiencies as possible. This is scary for them. If the patient is agitated and unhappy with what we do, it leads to bad care.”
McCarthy says the hospital follows an 80-20 rule.
“Eighty per cent of what you do can be standardized. Twenty per cent is used to think about the curveballs that get thrown at you.”
Clark, who rose through the ranks of a multinational firm to become one of its corporate executives, would like Ontario hospitals and Cancer Care Ontario to figure out a similar model.
“The way our hospital systems are run today, there’s a lot to be said about a business practice that needs to be changed and changed quickly,” said Clark.