ST. MARYS, ONT.—It’s Mother’s Day and Sharon Shamblaw’s children are trying to find just the right blouse, casual but pretty, for their mom to wear to her funeral. They decide on a dark, flowy tank printed with tiny white numbers. A black cardigan will cover her shoulders. Small white-gold hoops will adorn her ears. Her head will be bare, as it had been since late last summer. She never liked her wig.

“We told her she was cute so many times, she finally believed it,” her eldest daughter, Amanda, 26, says. “She looked adorable bald.”

In nine months, Sharon Mae Shamblaw, a 46-year-old full-time mom had gone from being diagnosed with a beatable form of blood cancer to becoming the latest casualty of a health-care system in crisis.

She was sent home to die, and she did; on Thursday, May 5, at 3:33 p.m., surrounded by her three kids and husband Larry.

Sharon was among hundreds of desperately ill Ontario patients in urgent need of an allogeneic (unrelated donor) stem-cell transplant to replace cancerous bone marrow with healthy new blood and immune-boosting cells from a donor. It was her best and only shot at being cured of acute myeloid leukemia.

While transplants have been offered for decades in Ontario, last summer the provincial health ministry agreed to outsource treatments to three U.S. centres because hospitals in this province lack the space and staff to treat everyone in need. The referral process has, however, proved fatally slow.

By the time Sharon arrived in Buffalo for her transplant in late January, the cancer had returned. At the time, a policy, which the health minister recently overturned, provided funded treatment only for patients whose leukemia was in remission, even though a transplant could still effectively wipe out the disease.

Literally hours away from her best chance at living, Sharon was forced to return to Ontario for experimental chemotherapy that did nothing but burn away the lining of her bladder, causing 10 days of searing pain that no medication could ease.

Hundreds of mourners turned out to Hodges Funeral Home on May 10 to say goodbye to the woman who made sure everybody’s kids got equal playing time on the soccer field when Larry was coaching, who checked the costumes on all of the performers backstage before her youngest daughter Morgan’s dance competitions, who was so beloved as a classroom volunteer that teachers and students once interrupted the school day to throw her a birthday party with cake and song.

Eulogy for Sharon

As daughter Amanda writes thank-you cards to those who showed up to the service and brought food to the house, she’s still trying to reconcile the reality of her mother’s death with the notion that it might have been preventable.

When Sharon saw a doctor last summer about the shortness of breath she had been experiencing and the fatigue that forced her to take breaks while mowing the lawn, she had reason to be concerned.

A bone marrow biopsy confirmed acute myeloid leukemia. That afternoon, she started her first round of chemotherapy.

Sharon was told she was a “prime candidate” for an allogeneic stem-cell transplant; that she had an 80 per cent chance of surviving. Cancer aside, she was healthy. She didn’t smoke or drink and she was active; she loved cycling with a friend or taking long walks with one of her daughters.

Larry, who has worked in car sales for the local Ford dealer for nearly 30 years, soon began hearing stories of half a dozen people around town who had battled blood cancer, gotten their transplants and were still alive decades later.

“That’s what we were expecting with Sharon,” Larry says.

When they learned that Princess Margaret Cancer Centre in Toronto was too busy to see Sharon, they didn’t panic.

“You’re just not told the urgency,” says Amanda, who took a break from her doctoral program in clinical psychology at Queen’s University to care for her mother. A nurse by training, Amanda had planned to accompany Sharon to Buffalo for the duration of the months-long treatment.

At the time, the Shamblaws did not know Sharon’s best chance of survival rested on getting a transplant within two to three months of her diagnosis, while she was in remission after her first round of chemotherapy.

This “international standard” was cited by Princess Margaret’s medical director, Dr. Mary Gospodarowicz, in April, a month after the hospital officially closed its doors to new patients seeking stem-cell transplants. The director explained it would be “irresponsible” for the centre to add patients to its eight-month wait list.

By December, four months after Sharon’s initial diagnosis, she was still in remission, but it took three rounds of chemo to keep her there.

Seven more weeks would pass from the time Sharon’s physician, Dr. Anargyros Xenocostas of London Health Sciences Centre, applied to have her treated at Roswell Park Cancer Institute in Buffalo to when she actually arrived for admission.

“I did my damnedest to get her to transplant,” Xenocostas told the Star before Sharon’s death. “That’s about as fast as I could push the system.”

A significant part of the delay was the time it took to perform the tests that determine genetic compatibility between a patient and donor. This process, called human leukocyte antigen typing, is critical to a successful transplant. Four months passed before Sharon’s donor was found by an Ontario hospital. When her case finally landed in Buffalo, Roswell repeated the search to make sure they had found the best match possible and located a more suitable donor.

In retrospect, Xenocostas and other physicians wonder if some of this laboratory work should be assigned to the U.S. centres to speed the process and avoid costly redundancies in work.

“Could we be doing better? Yes,” Xenocostas said.

“With everything that went on, we thought we were making progress,” Larry explains. “But everything we found out was always too late.”

Adds Amanda: “We should be told exactly what the facts are.”

The rationing of treatments, the extent of the crisis in Ontario and its consequences are some of the issues raised in a letter sent to Cancer Care Ontario a year ago this week from stem-cell transplant physicians across the province.

Why didn’t doctors raise these concerns publicly when government officials failed to intervene? Amanda wants to know.

“That’s not protecting anybody,” Amanda says.

“The system failed her and she’s gone,” Larry says. “She is the least deserving of that sort of mishap.”

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Since last fall, the provincial government has approved roughly 200 patients for U.S. transplants at an average cost of $500,000 (U.S.) per patient. In that time, only 19 people have received the treatment. How many died or relapsed before getting their shot is a question Cancer Care Ontario says it can’t answer. The government agency says the raw number is so small that to release it would risk identifying patients, a claim that has been questioned by Ontario’s privacy commissioner.

News of Sharon’s death came up during question period last week at Queen’s Park.

“Will this government promise that not one more life will be lost because of bureaucratic red tape and delays waiting for transplants?” Progressive Conservative Leader Patrick Brown (Simcoe North) asked.

“It is because I see this as unacceptable that we have acted,” Health Minister Eric Hoskins said. He reiterated the government’s plans to channel $30 million to hospitals in Hamilton, Ottawa and Toronto for new beds and create a second stem-cell program within the GTA at Sunnybrook hospital. After learning of Sharon’s plight in the Star last month, he quickly expanded guidelines for funded treatment, making leukemia patients who have relapsed eligible for transplant.

The day before Sharon’s death, a bouquet of pink tulips, her favourite, arrived at the house.

When Larry brought them to her bedside, he realized his wife had gone blind.

“I want to see them, I want to see them,” she said, her eyes wide open.

Mary Whaling, Sharon’s mom, brought a priest from their hometown of Stratford, Ont., to deliver last rites.

Brandon, 22, spent the night in a chair beside his mom, listening as her breathing became more laboured. Amanda was up through the night, too, giving her mom an injection every three hours to help with confusion and pain.

By early morning, fluid started building in the back of Sharon’s throat, making a raspy, wheezing sound when she exhaled.

“I texted her nurse to ask what was happening,” Amanda says. “It’s called the death rattle,” she was told.

“Everything you want to say, say it now,” Larry told his kids.

Brandon, Amanda and Morgan, 18, who had just started university in Ottawa when her mom got sick, each took one last turn talking with her privately; each told her it was OK to let go. Larry was the last up.

He and Sharon had gotten together on a May long weekend in the late 1980s at Wildwood, a conservation area in St. Marys — “the town worth living in,” according to a sign painted on side of its iconic old water tower. Sharon was a ringer for Julia Roberts, with her long, wavy hair and beaming smile.

After decades of weekends spent absorbed in the kids’ activities, he and Sharon were looking forward to a new chapter ahead. They had talked about taking longer road trips, exploring unfamiliar towns.

He had just stepped out of the bedroom when the kids called out.

“All of a sudden, she started coughing weird,” Amanda says.

Larry ran back, joining his kids at Sharon’s side.

Two breaths later, she was gone.

“She did that for us,” Amanda says, “waited until we were all by her side. That’s exactly her.”

It’s been nearly a week since the funeral, and the kitchen island is covered in vases filled with bright flowers sent by friends and family.

While Sharon wanted an open-casket service, the idea of being buried underground scared her, Larry says.

Her body was cremated in London.

On Friday, the Shamblaws brought her home.

One day, years from now probably, the burgundy urn with three butterflies that holds Sharon’s remains will be placed inside an eye-level niche of a columbarium at Avondale Cemetery in Stratford, near her late father, Eugene.

“We’re not ready yet,” Amanda says. “We’ll keep her here for a while.”