For Mandi Schwartz and Family, Truly Time To Be Thankful
SEATTLE – The Schwartz family can barely recall this Thanksgiving. Not the American one on Thursday, but the Canadian one last month.
The daughter was near death. About all Mandi Schwartz remembers is hallucinating about her fiancé. The brothers were away at college, shielded from the sight of their sister with up to 13 IV bags dripping into her body.
"I can't remember a lot of it. I think it was too much to handle," Rick Schwartz said recently. "I'm starting to forget things. My mind's going a little bit."
They are from Saskatchewan, where Thanksgiving was observed Oct. 11. Back then the Schwartzes were just thankful Mandi was alive. Now they have reason to celebrate.
"You feel like she's got a life again," Rick said.
It's not the perfect Thanksgiving story, but nobody who gathered here last weekend was complaining. They've come too far for that.
Mandi Schwartz, a Saskatchewan native, has been in and out of chemotherapy for more than 20 months since first being diagnosed with acute myeloid leukemia in December 2008. On Aug. 31, Schwartz entered remission once again after completing additional chemotherapy. She underwent a daily pair of hour-long radiation sessions between Sept. 15 and 17, and had another two days of chemotherapy on Sunday and Monday to prepare for the transplant.
Mandi and her parents moved here in July for the final showdown against cancer. By then the story was so well-known one of Mandi's new doctors came up and said she was honored to meet her.
Mandi is the Yale hockey player whose search for a transplant donor galvanized her school, her sport and thousands of people who'd never heard the phrase "acute myeloid leukemia."
She was originally diagnosed two years ago. After months of hospitals, treatments and anxiety, nothing would compare to a transplant.
"This is the hardest hockey game you'll ever play," a nurse told Mandi.
Like any hockey game, it's been a team effort. Mandi still can't quite grasp why her plight has inspired so many.
"I never thought I was that popular," she said.
There have been fundraisers galore. Thousands of people lined up to get their cheeks swabbed to see if their bone marrow would match. Many more volunteered to donate blood from umbilical cords.
Finding a suitable donor was just the opening drama. There were no medical guarantees when the Schwartzes pulled into Seattle in a donated RV. They settled into a little two-bedroom apartment near the Seattle Cancer Care Alliance.
There was lovely view of Lake Union and neighborhood of rolling hills. The walk to the SCCA offered an uphill trek where Mandi could gauge her condition. Not that she was in any shape to enjoy the scenery or fresh air.
The blood-cord drive had found two matches. They weren't perfect due to Mandi's mixed Ukranian-Russian genetic heritage, but they were close enough. The plan could be summed up simply enough: Kill the existing cancer. Inject new cells. Voila! A new immune system.
If only it were that simple.
The cancer returned a week before the scheduled transplant. Mandi was pounded with more radiation and chemotherapy. She went into remission and doctors moved fast.
A stem-cell isn't your usual transplant. There are no organs switched or tense 16-hours surgeries. On Sept. 22, two innocuous-looking bags of fluid were hooked to Mandi's arm. The entire procedure took less than an hour.
That was the calm. Then came the storm.
"Having a transplant is like someone sending you to hell and telling you to crawl back," said Carol Schwartz, Mandi's mother.
Nobody knew if the new stem cells would engraft in the bone marrow. With no immune system, the risk of infection was high.
Mandi developed lung infections and mucositis, a painful intestinal inflammation. She added 35 pounds of water weight. The days were marked by vomiting and delirium.
At one point doctors considered using an experimental drug that would have cost $2,000 a week. Her parents traded 24-hour shifts at the hospital, catching cat naps on the chair by Mandi's bed. Sometimes there was no napping at all.
"I'm a chicken," Rick said. "I get so worried when I hear about things that could happen. I must have aged 20 years in the past two. My wife handles it better than I do."
"I don't know. I just know every day with Mandi is a good day," Carol said. "I mean, where would you go if you were scared she might not get through it? If you knew how strong she was and how hard she worked in her teenage years to train. You put a lot of faith in her physical conditioning.
"It's hard to feel sorry for yourself when she's the one battling through it. You put on a happy face and try to be as positive as she is."
Such talk prompts an embarrassed smile from Mandi. Her friends at Yale always raved about her sunny outlook and stoicism. But Mandi admits there have been plenty of moments she felt anything but positive.
What helps her, what has helped everyone in Seattle, is knowing how many people have been waiting and watching and hoping and helping.
From Brennan Turner, a former Yale hockey player who organized donor-registration drives across Canada, to her teammates who recently "adopted" a sick 9-year-old girl in Mandi's honor.
Her youngest brother, Jaden, was drafted in the first round of the June NHL Draft by the St. Louis Blues. He's been playing this fall alongside brother Rylan at Colorado College. Rival fans will come up and wish Mandi well.
"She's always had that affect on people," Jaden said. "But this has just added to it."
The family's gratitude even extends to Dr. Tedd Collins. He's the New Haven immunologist whose daughter went through the same ordeal as Mandi. She didn't make it, which prompted Collins to start two charities promoting blood-cord transplants.
It turned out Collins had a history of shady fundraising. He's now under investigation for fraud, but Rick said he never expected nor wanted any money from Collins.
"He did nothing but help us," Rick said. "I have to give the man credit."
The Blues donated $10,000 to cancer research in Mandi's name. Last week, a group of friends in Saskatchewan did the same.
Insurance takes care of Mandi's medical expenses, but the family's expenses aren't covered. The money raised has helped her fiancé, Kaylem Prefontaine (pictured right), travel from Saskatchewan to Seattle every few weeks.
He's an engineering student who met Mandi in high school. It wasn't love at first sight, but that followed soon enough. In one of her toughest stretches in the intensive care unit last year, Kaylem showed up with gaggle of balloons and popped the question.
"One of the balloons also popped," he said.
It wasn't a bad omen.
"You can see her spirits pick up when he's around," Sandy said.
That's one reason last weekend was special. Kaylem, who's a good enough hockey player to be invited to tryout for Canada's world junior team, came to Seattle.
Jaden and Rylan also flew in. It was the first time everybody had been together since Mandi left Saskatchewan. It's a good thing everybody didn't show up for the Canadian Thanksgiving.
After 31 days in the hospital, Mandi was well enough to move back to her apartment. It wasn't much more than a hospital room with a better view, however.
She would still routinely spend eight to 10 hours a day at the hospital. Then she'd get home and Rick or Carol would hook her up to another platelet-pushing IV throughout the night, or they gently remind her to take one of the 35 pills she ingests daily.
And the worst part?
"I wasn't strong enough to get out of the bathtub," Mandi said.
It was pretty depressing for a 22-year-old who used to skate joyfully for hours. But Mandi's blood-cell counts have improved in the past few weeks. She's now down to three or hours of infusions a day.
"The doctors sense her body is recovering," Carol said. "They're giving her a little more freedom."
At first, her legs were barely getting her up that hill when she walked to the hospital. The risk of infection is still high, so her parents are always nearby with the trusty bottle of hand sanitizer.
Her brothers weren't sure what to expect when they showed up Friday. They'd talk to their parents almost every day, but Rick and Carol always sugarcoated the report on Mandi. She may have spent hours throwing up, but it would come out: "She's not having a great day."
It was all so the boys won't worry, of course. But the boys couldn't help it.
They were little hockey prodigies, talent honed from countless afternoons on their makeshift rink behind their house. Jaden and Rylan would smooth the ground, haul pails of water from house and let the Canadian weather do the rest.
Their sister would join the bucket brigade. If Ivy League opponents said she played a relentless game, there was a reason.
"I toughened her up," Rylan said.
When Mandi was in ICU last year, he would go outside and tend to the old rink. He wanted the ice to be ready for her return.
"That's how he dealt with it," Carol said.
At least the boys didn't have to deal with Mandi from a month ago. Her face is still puffy from the steroids and she gets exhausted in no time. But doctors encourage her be physically active, so the family headed to a Western Hockey League game Saturday night.
They stopped at a sports bar for dinner beforehand. The games and music and clattering dishes made it hard to hear. As they crammed into a corner booth, Rick looked down the table at his daughter.
Mandi gets cold easily, so she wore a ski jacket, ski cap, gloves and scarf. She closed her eyes and rested her head on Kaylem's shoulder. Jaden gently pressed his hand against the hood of her jacket, trying to help keep her warm.
"We don't know what she's going through, right?" Rick said. "Even though she's doing pretty good, we really don't know."
"She knows she's got to get out and do something," Carol said. "We'll see if she lasts the night."
They passed the hand sanitizer around the table and feasted on nachos, burgers and pizza. Then it was off to the ShoWare Center to watch the Seattle Thunderbirds play Everett Silvertips.
Mandi made it through all three periods. There was a promotion after the game in which women were invited down to the ice. They could take a shot at open goal and win a turkey.
"Come on, Mandi," Rylan said. "Take snipe."
"I just want to go home," she said.
No problem. The official family Thanksgiving was the next day and Carol had already bought a turkey breast.
The boys had a late-afternoon flight back to Colorado Springs. They won't be back before Mandi is scheduled to leave Seattle.
Barring complications, patients usually recover well enough to go home 100 days after a transplant. That would be New Year's Eve for Mandi. A full recovery takes about a year.
"You don't go day by day. You go week by week," Rick said. "It gets a little better each week."
Mandi has asked Rylan for one of his accounting books, just to get her academic mojo going again. She's just about able to bathe herself now. She's hoping for a wedding next summer.
Complications will inevitably arise. There's always the danger her body will reject the new immune system.
Everybody knows this hockey game is far from over. But as they gathered to eat turkey and homemade pierogies, they knew just getting to this point was reason to celebrate.
"I can feel my legs getting stronger," Mandi said.
That hill doesn't seem as quite steep as it used to be. And wherever it leads, Mandi knows she'll never walk alone.