Mom ecstatic as boy gets gift of health – Telegraph-Journal

By April Cunningham

Zackary Shaw may not make it home for Christmas, but he’s already received the greatest gift.

After years of battling leukemia, including a second diagnosis last spring, the nine-year-old from Back Bay, near St. George, has just received news that an umbilical cord stem cell transplant was a success.

“My heart is exploding with so much happiness right now,” says his mother, Courtney Shaw, who remains with Zack at Sick Kids Hospital in Toronto, on Thursday. “It was the best feeling in the world to tell him he fought cancer for the second time. There are no words to describe what I’m feeling.”

Preliminary results from Zackary’s October stem cell transplant were a 100 per cent match, Shaw says, meaning his old cancer cells are gone and he is completely cancer-free.

The news could not have come at a better time for Zackary and his parents, who have spent months in Toronto after a series of intense chemotherapy and radiation treatments leading up to the transplant.

He was diagnosed with chemotherapy for the second time in May, just seven months after finishing treatments. This time, the cancer had spread through his blood, chromosome 21, brain and spinal fluid and his bone marrow.

But just as Zackary and his mother hoped he would be given the all-clear to return home to the Maritimes in time for Christmas, a series of infections led to his readmittance to hospital.

Shaw, who has been forced to keep her chin up, saying positive through the battery of tests, treatments and pain she has been forced to watch her son endure for the past four years, called it “just another bump in the road.”

What was once a Christmas wish to return home to St. George, west of Saint John, faded to a slim hope of even making it as far as Halifax, where Zackary would remain close to pediatric oncologists at the IWK and where they could reunite with his sisters, Jennika, 14, and Harley, 4, who remain in St. George.

“We aren’t sure when we’ll be home,” Courtney says. “But if we don’t make it, we will Skype the girls Christmas morning from here.”

The latest setback had wiped Zackary’s typical sweet, demure smile from his face — aside from the day he had the chance to meet a few members of the Toronto Maple Leafs, his mother says. He was downtrodden, leaving his mother to make any attempt she could to bring a smile to his face, as they played “Russian roulette” with his fragile immune system.

This latest news was the lift he needed.

******

Back in 2012, Zackary had been lethargic and ill for months, and while his doctors thought he had throat and ear infections, the antibiotics they prescribed weren’t doing a thing. They finally sent him for bloodwork.

“I got the phonecall at work,” Shaw says in an interview over Facebook video chat, Zackary snuggled next to her. She was just a few days into her new job as a Charlotte County physiotherapist when she received the news that her four-year-old son had leukemia. “I couldn’t even go home to pack my bags. They wanted him straight through to Saint John, and at 4 a.m. the following morning we went by ambulance to Halifax.”

It was scary, Courtney says, but she put her trust in doctors and the healthcare system.

“When you’re going through this, you don’t know what to expect,” she says. “It was all a foreign language to me.”

Little did she know she was entering a medical world she would become only too familiar with over the coming years, as they ferried Zackary back and forth between Saint John and Halifax for nearly four years.

He finished his final treatment on October 17, 2015.

Only a few months later, on May 30, the cancer was back.

It seemed to come out of nowhere, Courtney adds, since only six days prior, Zackary’s weekly test results were completely clean.

“Then he started having signs of weakness in his arms,” she says, adding it was a symptom of infection. “He couldn’t write, or pick up his chair at school to put it on his desk at the end of the day.”

Zackary was at his father’s house one day — his parents are separated — and he went to the Saint John Regional Hospital for bloodwork to see what was behind the weakness.

Once again, Courtney got the call at work. “He had relapsed. This time, it was a more intense diagnosis,” she says. “That’s why he needed the bone marrow transplant.”

Although Courtney and Zackary’s father, Jaret Wentworth, were told he would likely need the transplant, they were warned that even with 28 billion people on the registry, the chances of a match are rare.

One day before the St. George community organized a September bone marrow clinic — which attracted nearly 200 people willing to add their names to the registry — officials found two matches suitable for Zackary.

What ended up being the selected match came from the umbilical cord blood of a baby boy, which they hoped would make Zackary healthy again.

In a process that only took 25 minutes, the small bag of blood dripped through the lines in Zackary’s chest, leaving what Courtney describes as a strange yet pungent odour or cream corn in the hospital room for days after the transfusion, Courtney says. The smell leaked from her son’s pores.

******

Ask Zackary his age, and he jokes that he’s 100 years old.

What does he want for Christmas?

He shakes his head, looking down. “Nothing.”

The past few weeks have left a boy that his mother describes as “always playing, always on the move,” utterly depleted.

“He was very, very sick this time around,” she says of the second diagnosis. “He just didn’t have the energy to do anything.”

He lost his hair much faster, too.

The first time Zackary was diagnosed with leukemia, life because a series of predictable tests and treatments. But nothing has been predictable about these past few months, Courtney says.

“It’s been one disaster after another. Bad news upon bad news. So when we get good news, we’re like, ‘Finally.’”

As a mother, Courtney says the entire journey through cancer, the disease that can only be described by expletives, has been a lesson in patience.

“Doctors are slow,” Zackary chimes in. Courtney laughs.

“There’s never a true answer,” she says. “There’s always a possibility of something else happening. There’s always a waiting game. It’s one test to the next.”

Courtney has her down moments, for sure, but staying positive is so important, she says. In fact, it’s the only way to soldier on.

“No parent wants to see their child suffer,” she says, eyes welling up with tears. “It can get emotionally hard sometimes. But you just keep going. Life doesn’t stop.”

Terry Fox’s escort

Terry Fox

I recently met a 10-year-old boy who was diagnosed with a rare form of leukemia about three years ago. He’s now cancer-free and a normal kid, but to look in his eyes, he has the wisdom of a weathered soul.

He’s been through more pain than most of us would endure in a lifetime. And he lives with the reality that an illness linked to his life-saving bone-marrow transplant could attack his organs at any time.

“They’re just bumps in the road,” he said to me with the sweetest smile, as I interviewed him and his parents for a Telegraph-Journal story appearing Monday.

So here we are, 33 years after Terry Fox embarked on a cross-Canada journey to raise money and awareness for cancer research.

He made the journey so children don’t have to suffer, and, like the boy I met Saturday, so that they have a chance at life.

As runners, and as Canadians, I believe it’s so important to remember Fox’s legacy through the annual Terry Fox Run, which is Sunday, and do what we can to help.

I may not have been born when Fox ran his Marathon of Hope, but I know someone who was a part of his remarkable journey. Doug Ryan is my best friend’s father, a retired police detective, and he has been kind enough to allow me to share his memories with you.

Alicia and her dad, Doug Ryan
My friend Alicia and her dad, Doug Ryan

“Before I joined the OPP in 1978, I had done a lot of long distance running.  I knew the effort, stamina, strength and pain involved in pushing myself to the limit. In August, 1980, I was directed to escort Terry Fox from Gravel River as he made his way westbound through our area. Gravel River is about 45 km east of Nipigon on Highway 17. The only stretch of highway in Ontario more challenging than this area would have been the long hills before Wawa.

“Terry and his support team were ready to go when I got there, about 8:30 a.m. After a brief introduction and instructions from his brother, the escort began. Their camper truck was out front, then Terry, then me, about five car lengths behind, in a black and white Ford with the emergency lights activated.

“When he began to run I was overcome with emotion in less than a minute. The true gravity of the introduction, only moments earlier, became very apparent.  I was watching this young man making history and I was privileged to be trusted with his safety. Privileged to have just met a champion the world was watching. Privileged to have just met a young man who was pouring his heart and soul into the whole world’s fight against cancer. 

“Within minutes I was moved to tears when I thought about the effort he was putting out to continue his laboured, off-balanced stride. It made me realize that I had hardly pushed myself at all in my own running. It wasn’t long until traffic began to pull over. Westbound vehicles would pull out to pass us, go several hundred yards up the highway then pull over. Everyone would get out to cheer Terry on and make a donation. Eastbound vehicles would also stop and wait for Terry’s approach. The enthusiasm and donations were non-stop hour after painful hour.  Many of those cheering and clapping were also moved to tears at the same time. Cancer has reached every family in one way or another and Terry’s efforts stirred up those emotions in all of us. As a young boy, I listened to my grandmother slowly die of cancer in the next room. It felt like Terry was putting himself through all this, just for her.  

“By mid morning Terry stopped for a break and went down to the water’s edge. He wanted to be by himself. It was very apparent to me that he was in tremendous pain. He was clearly favouring his stump side and the expression on his face was that of a man enduring serious pain. I recall he had a bit of a dry cough when he was talking to his brother.  Like the cough of an asthmatic. I didn’t think he would make it up Kama Hill, which was about halfway to Nipigon. Again, I was moved to tears, as he slowed to a walk to try and make it to the top of the biggest hill in our area. It didn’t seem possible that anyone could push themselves this hard, day after day. It took me a week to recover from one marathon. He was doing one marathon each day, against all odds. I was hoping he would stop, for his own sake.  

“Terry Fox. The most determined, most influential, most important and the most inspirational person I have ever met. It was the most memorable day of my career.”

(Remarkably, Fox made it about 120 km past Nipigon, close to Thunder Bay, before the cancer spread to his lungs and he was forced to end the run. He died nine months later.)