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A Canadian woman is taking part in a remarkable study to help doctors learn how to stop multiple sclerosis in its tracks. But it's a dangerous and daring protocol that could risk her life.
Dyan Dixon has suffered from MS for more than 10 years. It's a cruel disease that appears to cause the immune system to go on the attack without warning.
Dyan suffers daily with tremors. She can no longer sign her name. She has trouble with her vision.
"If you knew me like 10 years ago, what I used to do" she says. "I went backpacking around Europe for four-and-a-half months. I can't even walk around the block now."
Dyan has an aggressive form of MS. It's called secondary progressive MS, meaning it's causing her body to deteriorate quickly.
"It's usually a wheelchair within 10 years," says Dr. Mark Freedman, a neurologist at the Ottawa Hospital.
The nerves inside the brain are covered with a kind of insulation called myelin. In patients with MS, the body's immune cells attack that myelin for reasons doctors don't understand.
There is no cure. But Dr. Freedman is leading a Canadian team undertaking a bold experiment in the battle against MS. He thinks there may be a way to arrest the disease; patients might not get better but at least they wouldn't get worse.
Now Dyan must make an agonizing decision: Will she continue to let her body deteriorate or will she join Dr. Freedman in his experimental new study to see if he can test his theory?
"The actual procedure that we're doing is unlike any other one that's been done," he says. "This is a project that will benefit everyone with this disease not just the people who go in it."
Freedman's team believes it's possible to arrest the disease if they can get rid of the immune cells that are causing the problem. The trouble is doctors don't know which cells are doing the damage. So they must wipe out all immune cells using the most powerful chemotherapy drugs around.
"We have to eliminate the entire immune system, which is impossible unless you have some way of bringing it back," he says.
Freedman's team will revive it by using stem cells to plant the seeds of a new immune system. Those stem cells will come from the patient's own blood and bone marrow.
That means patients have to undergo a bone marrow extraction -- one of the most gruelling treatments imaginable. The end result will hopefully be a fresh, MS-free immune system. It's a punishing regimen and clearly not for the feint of heart.
"When someone says to you, 'Yeah, okay, we might be able to stop this disease and there's certainly no guarantee you're going to get better, but there's a chance you could die' -- would you do it?" wonders Freedman.
"I don't think you can answer that unless you have this disease and you know what it's like to live with it on a day-to-day basis."
Freedman and his team have decided they need 24 patients to make the results scientifically credible. So far, they've had eight. They want Dyan to become No. 9.
"These are individuals who are not happy with the way they are," says Freedman. "They're obviously very courageous. They're willing to risk their lives. And they're very unhappy with the thought of continued disability."
When Dyan was first told about the study, she wanted no part of it.
"I was like, 'Oh my gosh, you guys won't believe what he wants me to do. He must be insane, like why would anybody do this?' So I just totally wrote it off."
"I mean, one of the side effects is death! I'm like, 'Death is not a side effect. Death is kind of like, the final thing.' It's not like throwing up and removing your hair. I can live with that. But it was like they called it a 'side effect.' And I said 'No, not doing it'."
Dyan also knew about the experience of the study's patient No. 6, John McCleary.
McCleary too suffered daily with MS. He was so weak, the most he could do with his kids, Kelsey and Mathew, was help with their homework. The idea of life in a wheelchair was unbearable. He believed the study was his last hope.
"It bothered him he might not be able to walk Kelsey down the aisle when she got married," says his wife Lisa. "So this kind of gave me a little bit of hope that maybe he could."
Lisa did not like the risks and urged her husband not to take part. But John was determined to go ahead.
"I was thinking: what if, he doesn't make it? So, I'd always throw at him, 'Okay you know what. We, what do you think is gonna happen if you don't make it then what's gonna happen here?"
"He'd always come back, 'It's not gonna happen Liz, it's not gonna happen."
At first he was right. Under Dr. Freedman's careful watch, John coped well with the punishing treatment.
"You're thinking wow, that's really great," Lisa says. "The next thing we know, he's coming home, it's wonderful. And then, boom. He's back in hospital."
McCleary was back in hospital and in serious trouble. His liver suddenly started to give out after weeks of brutal chemotherapy.
"It was a known complication that can occur when you use very high doses of that particular agent," explains Dr. Freedman.
John's liver never recovered. He was just 40 when he died.
As John's family mourned his death, Dr. Freedman also struggled with the loss.
"We're allowed to have I think two deaths out of the first 18 patients or something is what we figured for," he says. "Well, I was figuring on none. And I was not prepared to accept even one."
Freedman says John was a hero. His widow prefers to call him a pioneer.
"Hopefully this will help other people with MS, hopefully if they find something through John to stop someone else from maybe suffering the same fate," Lisa says.
That's Dr. Freedman's wish too. But John's death had him questioning his study.
"I thought: it's my job to make people better, not to lead to an early death."
As for Dyan, John's death hit hard. "I felt awful for him because I knew he had two kids and he's not much older than I am," she says.
But the MS continued to ravage her body. Six months after she was first asked to take part in the study, Dyan changed her mind -- or the MS changed it for her. She signed up and not even the risk of death could deter her.
"Yes, there's a five per cent chance of death, five to 10 per cent chance. But you have to look at the other side. It's a 95 per cent chance that this is going to work and it's going to stop the progression."
"I get worried about the kids because I won't be here," she adds. "But yeah, they'll be fine. We have a good support group. All our family will be right there to help them. So they'll be fine."
"I try not to think about it because then I get all weepy."
Dyan's husband Paul knows the coming months will be hell but he supports her decision.
"I think she's brave to do it. I mean, I'm proud of her. as a couple, I think we've gotten closer with going through the whole situation."
Despite Dyan's enthusiasm to get going, the death of John McCleary in April of 2003 delayed the study.
"We stopped the study for six months until we had a chance to review absolutely every piece of the data and make sure that there is something that we would do differently. And we changed the protocol," says Dr. Freedman.
Medical ethics committees later had to review the changes to the study. In the meantime, Dyan waited.
For her, the delays simply mean more disability. You don't have to be a neurologist to see the MS keeps taking a toll on her body.
"I've gotten worse to the point that I can't do as much as I used to be able to do. And I don't get that back. The treatment doesn't give that back to me. It just stops it from here forward," she reminds.
As Dyan waits, she tries to cope with all the stress with the help of an MS support group. Her fellow MS sufferers will be watching her treatment closely, believing if it works for her, maybe it could work for some of them. One of them wants to know about how the other previous patients in the study have fared.
"So, good, like so-o good," she responds. "The people who've done it and didn't die, on their MRI's there are no new lesions on the brain. They're clear, they have no new symptoms. It's like they're in remission."
Stephanie Rainville-Wray was the original pioneer in the MS study. In October 2001, she was the first person to undergo the procedure.
"It wasn't easy, it wasn't an easy treatment. So I'm hoping for the best."
It's now two years since she went through that treatment and her MS seems to be in remission.
"We know what someone like Stephanie would have done if she had gone on without any treatment whatsoever, she would probably have been totally disabled at this time," says Freedman.
That doesn't mean she's cured of the disease but it does mean that her MS is showing no signs of returning.
"I'm glad I did it and I'm glad the results are what they are, that there are actually no new lesions and no activity," Stephanie says. "Because before this, I was having an attack every three or four months. For the past two years I haven't had any attacks."
At long last Dyan's been given the go ahead. She's in hospital to begin the stem cell extraction
"We've been waiting, like, a year for this, so it's here, so I guess that's good. You can ask me when I wake up and then I'll tell you if it's a good thing."
Now, all Dyan needs is the courage to let her medical team start her on the dangerous treatment.
"I was all set before and now I feel like I'm chickening out again now," she says. "I mean I'm not going to chicken out, but I feel all that nervousness coming back again because I have to re-prepare myself mentally because now it's really going to happen."
The first step is to get the stem cells, the seeds for Dyan's brand new MS-free immune system. They take the cells from two sources: some from her blood and the rest from her bone marrow.
Doctors make a slit in her skin over her pelvic bone and then and use needles to core into the middle of pelvis bone and suck out the marrow. They remove one to two tablespoons of bone marrow at a time.
What's taken will be frozen for up to five years as insurance in case the stem cells don't grow properly or don't re-form a new immune system. This way there'll be a back-up.
Two months later, Dyan hits a road block. Blood tests show her body may not be strong enough to endure the potent chemo, meaning she may not be allowed to move ahead in the study.
Finally in June, doctors decide it's safe to continue. They now collect stem cells from her blood by strapping her to a machine for six hours that extracts the crucial cells.
When it's over, Dyan is finally able to relax at home with her boys, Jack and Kyle, before returning to hospital for more than a month of grueling chemotherapy.
Doctors hope the near lethal doses of chemotherapy will kill Dyan's immune cells, including the ones causing her MS. but they're also hoping that she'll be strong enough to handle this onslaught.
By July, the drugs are taking a toll on Dyan, as expected. She's extremely vulnerable to infection and off limits to anyone who might be carrying a bug. But her sons are given a chance to visit her in hospital.
Dyan and Paul decided long ago their boys needed to see their mom go through the treatment no matter the outcome. It's a happy visit with the children blissfully unaware of how much danger their mother is in.
"They don't know any of the risks. And I don't know that it was really necessary to get them prepared for something that may not happen," explains her husband Paul.
"So, for them it's just a matter of: mom's in the hospital so the doctors can make her better. And if anything were to happen, we'll have to deal with that later."
By the end of July, Dyan's old immune system is dead -- something that would normally be fatal. She is now ready to have her stem cells replaced.
The transfusion goes well and Dyan is entering the final stage of the study: recovery. She's still at great risk. And after a month of living in hospital, she just wants to go home.
But then just as things are looking good, Dyan's liver begins to show signs of trouble -- just what Dr. Freedman had feared the most.
"Naturally, the first thing that pops into your head is when John died. That was the start of what went wrong," Paul says, thinking of patient No. 6, John McCleary.
Paul calls his father, a minister, and tells him to start praying.
A week later, Dyan's liver suddenly starts to get better. In a week she's made a remarkable recovery. She's so well in fact, that after five weeks she can finally leave the hospital.
Doctors are now watching for any symptoms to see if the MS returns to her brand new immune system. The good news is that in the two years it's taken Dyan to go through this journey, doctors have been tracking the other patients and the MS hasn't returned in a single one.
"We are pretty convinced we did what we set out to do. We were able to knock out the immune system in these patients and fortunately for them there's been no sign of resurgence of a disease," says Dr. Freedman.
Doctors tell Dyan it will be a year before she gets her strength back. And it could take several years before doctors know for sure if her MS has been halted. But she's already noticing improvements.
While the doctors may get the accolades, Dr. Freedman insists it's the patients that really deserve the admiration.
"It's not the doctors at all. You know, we can design lots of things on paper. But it's the patients who make the study happen. It's their commitment. It's their courage."
"If these guys aren't heroes I don't know who are."
One final footnote: Dr. Freedman says that to his complete surprise some of the patients who entered the study before Dyan have not only stopped getting worse -- they're actually getting better.
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