Susan Beresford’s Story of Leukemia, Loss & Love

“It doesn’t matter who you are, your successes or status in life, losing a child is universally life’s biggest heartbreak.”

These are the heart-wrenching words of Susan Beresford, a 51-year-old Canadian woman who lost her 12-year-old son Nicholas after a gruelling battle with leukemia.

Beautifully written in her own words, Susan shares her courageous journey through cancer, death, and the ongoing grieving process in HerScoop’s latest Inspirational Mom segment.

While 13 years have passed since her tragic loss, Susan admits she still cries when she writes “this hard stuff” about her “Huck Finn” kid that loved to visit, dream big and fight against the bullies.

In a candid piece, Susan gives a raw and open account of how she watched Nicholas go through brutal cancer treatments that left her sweet son “nothing more than bones and skin after the year long illness.”

She goes on to recall the friendships that were made during his illness, the desperation for a second opinion in his final weeks, and the last moments she shared with her son.

Admitting that writing saved her soul, Susan has since created the blog, Head in my Hands, a safe place for bereaved parents to connect and share.

And through it all, Susan says, “I’m now blessed to know of enduring strength and compassion.” Continue reading her inspirational story of leukemia, loss and love.

Nicholas, my second child, was born July 22, 1987 in Killam, 40 km from our rural home in northeast Alberta. I went into labor just as my husband, a volunteer first responder, was called to attend a motor vehicle accident.

Kind farming neighbors took me to the tiny hospital and my three year old son to their home. With an audience of the entire nursing staff, three nurses grateful for something to do, I had a short and quiet labor – “Shhhhh, you’ll disturb the other patients!” My husband arrived just as Nick made his entrance.

Unlike my first son Frankie [now 28] who was gorgeous when he entered the world, Nicholas, with his wrinkly red face and misshapen head, had me a little worried.

Once recovered from the trauma of a quick birth, and motherly bias put aside, Nicholas was a cute baby. Frankie has my blue eyes while Nick took after his Dad’s dark coloring, but he had my outgoing personality. As Nicholas put it, he was a great “visitor.”

“Where ya been?” I’d ask him.

“Visiting Mrs. Demoskoff.”

The problem was that he started his “visiting” when he was too young to be leaving the yard on his own. He wasn’t even in kindergarten yet when he banged on the neighbor’s door. She opened it to a brown eyed little boy who told her his name was “Gloria.”

Nick was impressed with Mr. Demoskoff’s dump truck parked near the road as we drove past so he picked their yard to visit. Nicholas was also good with time on his own, a ‘Huck Finn’ kid who loved to throw on a backpack, take the dog and explore the woods behind our little acreage. We had moved back to the west Kootenays when Nick was three months old to be near my family after my dad died earlier the same year.

Frankie was a conscientious child who only had to be told something once or twice, while we had to keep reminding “Nick the dreamer,” over and over again. Our oldest liked to hang out with his Dad and tinker on the tired vehicles our limited budget afforded. Something always needed fixing around our place. Frankie could sit and concentrate on a task. Give Nick a job and it wouldn’t be long before he had wandered off and was in the yard rolling on the grass with one of the dogs, or in a tree with the cat. I’m the same way – easily distracted.

Nicholas was bullied at the country school he attended from kindergarten, yet he would get in the way of bullies to stop other children from being hurt. He was eleven years old when he asked if he could change schools.

We moved him for his last year of elementary. Within his first month he became a peer counselor, was well liked and happy.

One day the school called, “Susan, this may sound kind of weird but Nicholas is falling down – a lot.” The doctor ran tests and everything came back negative.

A few months later in January 1999, I watched Nicholas sleep. He’d been home a few days from school with the flu. That day it had seemed he was on the mend and I let him play outside in the snow, but later he was feeling ill again, and went to bed early.

I watched his shallow breaths, his swollen belly and flushed cheeks and thought, ‘This is more than a bug.’ The next day the doctor told me, “It might be some form of mononucleosis, but I think it’s leukemia.”

I sat down, smiled, and then felt like a fool.

By evening we’d been airlifted to British Columbia Children’s Hospital and Nicholas was in critical condition. They removed two litres of fluid from the area around his heart and then inserted tubes that continued to drain fluid from both lungs. His liver and kidneys were failing and blood tests showed he was full of leukemia cells.

I’m told he might not survive the next few days. His dad was working in the States and my mother was at the farm with fourteen year old Frankie.

And Nick asks me, “Are you OK Mom?”

Eventually Frankie and his Dad joined us and we lived between the unbelievable support of the Ronald McDonald “House” and BC Children’s Hospital (BCCH). We grew amazing friendships over cups of coffee sitting at one of the round pine tables in the kitchen at the “House.”

Nicholas’ leaves from the hospital were rare. While he slept I borrowed umbrellas from the nurses on the ward and walked miles in the rain, calmed by the gray sheets of water that matched my mood.

The leukemia, being deemed as “refractory and aggressive,” was brutally treated.

Persistent nausea made Nick retch and heave; he was nothing more than bones and skin after the year long illness. When the induction (first round) chemo did nothing to slow the advance of cancer cells, he was given a “cocktail” of radical treatment. His bone marrow activity stopped. No good cells, no bad cells, nothing grew inside his bone marrow.

It was felt the chemotherapy had destroyed the “stroma” or garden where the blood grows, the same as when they ready a person for a bone marrow transplant, except Nicholas wasn’t in remission.

My husband and I received shots to stimulate the growth of cells in our own bone marrow. I had no issues but Nick’s dad suffered with arthritic type pain. Our white cells were harvested at Vancouver General Hospital and then infused into Nick so his blood activity was actually our cells; we were giving him our immunity.

Nicholas constantly ran a fever. His body was an open door for infection and two areas of fungus, the size of golf balls, grew between one lung and the chest wall. Surgery to remove them took seven hours and it was speculated that if he survived, would the long incision in his back heal?

In May 1999, I was at the Ronald McDonald House when through the door walked my husband with a stricken expression. My stomach lurched. He was supposed to be at the hospital with Nick. “Why are you here?!”

“Your mother died.” It wasn’t until years later that I was able to grieve her death.

Frankie turned fifteen in September. He never begrudged the focus on his little brother. When Nick felt well Frankie played video games with him. Sometimes Nick was cranky and unreasonable, and in “normal” life Frankie wouldn’t have put up with the abuse but now he was gentle and patient.

I felt Frankie’s hand pat my back more than once, “It’s OK Mom.”

Through that year our friends and family looked after our home and animals and raised funds that allowed us to be together. Children sold cupcakes and had bottle drives; businesses held golf tournaments. Our home town RCMP detachment ran 624km to the coast, picking up the interest of BCTV along the way.They filmed a bald and skinny “kid with cancer” Nicholas stepping off the elevator into the lobby of the hospital, and the tears on the faces of the police members.

Dave Scatchard was a Vancouver Canuck who dropped by the Ronald McDonald House one day to hang out with the kids.

Nick was the only one there, and didn’t know who Dave was because our family didn’t watch hockey, but they became friends. Dave regularly dropped in at the House or the hospital. He was at Nick’s 12th birthday celebration in July. Dave said Nicholas never felt sorry for himself. They didn’t talk about the cancer because Nick believed he was going to beat it. Dave told us, “I always felt better after hanging out with him.”

I ached to gather up Nicholas into my arms for a full body hug. He used to be a rounded healthy little boy, now he was bony and sick and couldn’t tolerate hugs, “It hurts Mom.”

So I sat at the end of his bed and gently massaged his feet and then drew faces on the pads of his toes, a different expression for each toe, and he’d bend his big bony knees, draw his foot up and smile at the silly faces. When he was frightened and refused to cooperate, as when he needed a feeding tube (many times) put through his nose into his stomach, I had to be firm and insist.

He’d gag while the nurse put the tube into the back of his throat, his arms would flail and I’d have to hold them and speak into his ear, “That’s it! You can do it! Keep swallowing, help it go down! Almost over!” And when it was done I would go into the bathroom and cry.

In August, BC Children’s told us there was “nothing more they could do for Nicholas, and he is going to die.”

It was an inconceivable statement. We applied to a different pediatric oncology group and were accepted for experimental therapy in Calgary, Alberta. The therapy was much kinder, but Nick continued to deteriorate from the disease.

Nicholas dreamed a grand wish of meeting Jack Hanna, the host of his favorite television show Jack Hanna’s Wildlife Adventures, but the wish foundation stalled with his unusual request. Through Dave Scatchard, his friend Todd Scott, his friend Rosalyn Campen who worked for ‘A Channel,’ a television station in Calgary, her friend that ran a Petland in Calgary who knew Jack Hanna, it happened that one day in November the phone rang, and a voice with a distinct American accent asked to speak to Nicholas. “Hi Nick, this is Jack Hanna. I heard you wanted to come and visit me.”

Just before Christmas our family spent four days at the massive Columbus Zoo in Ohio cuddling baby Siberian Tigers and hand feeding romaine lettuce to Manatees.

Having a daughter who is a survivor of childhood leukemia Jack Hanna took Nicholas into his heart.

With the help of friends in the medical profession we were able to take Nicholas home for his last Christmas. Amid twinkly lights and holiday music I bought gifts for a little boy who might not be alive to open them and who surely was not going to be alive for long to enjoy them. I use the CD case he unwrapped with long, thin fingers and a tired smile, “Thanks Mom and Dad.”

On January 3rd Nicholas arose from the couch and said “Please take me out.”

Bright sunshine lit crystals in the snow and Nick with his nose pressed against the window asked me to drive past his school. Then we traveled the narrow gorge alongside Pass Creek so he could stop at the snowmobile shop in Crescent Valley and say hello.

That evening his dad and I couldn’t take our eyes off our youngest child’s delicate profile; in awe of Nick’s energy as we sat through “Toy Story” at the theatre. This was the calm before the storm.

“I can’t move my arm!” Nick’s voice jerked me awake the next morning. “My head hurts!” Terrified, he asked the question he’d never before asked, “Am I dying?”

I couldn’t answer him and I’m glad I never did. I phoned the Children’s hospital in Calgary. I knew there was nothing anyone could do, but how do you prepare for your child’s death? By some greater intervention I was able to speak with his compassionate oncologist.

“I’m so very sorry. I pray his death will be gentle for all of you.” He felt that Nicholas had stroked.

I went back to my son, calm, realizing I needed to just “be” with him in the moment, to “follow” him, as his life came to an end. Nicholas never spoke another word to me. A few minutes after that phone call he closed his eyes.

Lazy flakes of snow fell on and off all day, our beautiful valley was covered in a heavy white blanket. It was evening, friends and family had taken turns sitting with Nick and now they talked quietly in the kitchen and living room of our house. In his little bedroom, his Dad and I held a small hand. Each breath came hesitantly, the next one we anticipated, hoped for, yet we told him to go with the angels who were there to take him away from the pain and fear, don’t look back and fly away.

The next breath never came.

I put his beloved snowmobile toque on his smooth bald head. Then I climbed into his bed, took him upon my lap and hugged his still body until his Dad gathered him up and took him out of the room.

I couldn’t figure out how my heart continued to beat when it hurt so much to breath.

My abysmal grief made me contemplate taking my own life. I agonized over Nick’s suffering, his shortened life, Frankie’s grief and lifelong loss of his little brother.

At night I dreamed of a well Nick, a sick Nick and sometimes I woke up feeling he’d just left my arms from a hug. Each morning I was exhausted, and the reality of his empty bed across the hall was a sledgehammer to my heart.

Nick’s dad and I never had a strong relationship, and even though we shared the profound experience of his life and death, we continued with our dysfunctional ways. I added a bigger burden when I pushed my resistant husband into starting an adoption for two kids who needed ‘whole’ people, not the broken husks we were.

I didn’t take medications or begin to drink heavily, and I continued to fill the journal I started at Nick’s bedside, mostly to record the foreign language of medicine but it had morphed into a way to excise the horrors of childhood cancer from my skull.

After his death my writing saved my soul.

Losing Nick through a long illness forced us to slow down and cherish the time we had with him. I hate the pain and fear my child suffered and would change that if I could, but I can’t imagine the mind numbing horror of a ringing phone and a voice saying your child was dead. We had time to say goodbye.

Initially after Nick’s death I was determined to make my marriage work. Eighteen year old Frankie was stoic and refused to talk about his little brother yet I heard him crying at night. I regret the further pain it caused my son, but I left my twenty year marriage in the fall of 2002.

You could say we were doomed, a statistic, because more marriages don’t survive the trauma of losing a child. But most of the bereaved parents I’ve met are still in their relationship, so, I blame the demise of ours on bad habits we couldn’t break.

For years in the evenings I had walked the dogs along our dark country road. It was my time alone when my boys were either in bed or watching television with their dad. I never had a strong faith but would pray when I wanted something.

While Nick was sick I begged for his life on my knees. After his death I walked and watched the stars and prayed to a God I was angry with for letting my son die, but more than ever I’m a believer because I can’t think this is the end, and I’ll never see Nicholas again.

I used to be pleasantly ignorant of a world where children die, but, I’m now blessed to know of enduring strength and compassion. I try to not forget the lessons I was taught. And I’m really grateful for what I have, because as bad as it gets, I know it can get a whole lot worse.

For more from Susan, go to Head in my Hands.

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