A Sippy Cup of Chemo: A Family's Journey Through Childhood Cancer

By Sue McKechnie

In a small Ontario town, an average family is faced with an ailing child and no answers. After several missed diagnoses, the family is sent to SickKids Hospital in Toronto. There, the devastating verdict is delivered: there is a cancerous tumour lodged in their 18-month-old son’s brain. This is much more than a story about a little boy battling cancer. It’s a story of a family confronted by the biggest challenge one can ever face. As they juggle the needs of their healthy child, their jobs, their finances, and even finding a place to sleep, they must learn to rely on a network of extended family, friends, and a giving community. It’s a story of a loving couple whose relationship is tested beyond the boundaries of normal who come to support each other in their contradictory impulses to fight their son’s cancer at all costs or to accept the inevitable outcome that awaits him. It’s a story about parents who are forced to take on the roles of nurse, pharmacist, therapist, researcher and advocate in a world filled with experts who don’t know their young patient on a profound or personal level. It’s a story about a non-religious couple who come to believe with absolute certainty that there is life after death and that their wonderful son may have passed from this life, but still exists and gives them courage from another. Finally, it’s a story about the legacy of courage and hope that Shawn leaves within this circle of people; a legacy of helping other families struggling through this journey who need to realize that they are not alone. All proceeds from the sale of this book will be donated to Meagan's Walk (www.meaganswalk.com) benefiting the global leader in pediatric brain tumour research; The Brain Tumour Research Centre inside of SickKids Hospital.

• Language: English
• Publisher: BookBaby
• Release date: Jan 15, 2016
• ISBN: 9781483560120

Book preview

2013

PROLOGUE

When the idea came to us to write Shawn’s story, my husband Keith and I pondered our reasons for doing so. The biggest reason was to have a written account of Shawn’s journey and our experience as a family through his initial diagnosis, various treatments, terminal diagnosis, death, grief and beyond grief to an undeniable belief that Shawn is still with us.

When we told family and friends that we were writing Shawn’s story, we were asked many times why we would want to document such a painful time in our lives and reopen emotional wounds that may have begun to heal. Keith answered this question by comparing grief to a muscle in your body that you don’t use. It hurts like hell the first time it’s forced upon you and some give up, unable to get through the initial pain. For us, the more times we exercised through the burning agony, the stronger and healthier we became.

There were lessons learned. We will not lie down and allow them to go unshared. Instead, we hope to give purpose and meaning to tragedy. Shawn was with us for such a short time, but he changed the very make-up of who we are and how we move through our daily lives. If there was a purpose in his death, it was to show us that people—friends, family and total strangers—have the ability to make a difference. Even though we are not religious, he showed us that we can be spiritual in the knowledge that the world is made up of so much more than our five senses tell us. Finally, Shawn made us slow down and appreciate each other. He essentially gave us a scale with which to measure what truly matters.

He showed us that true love endures all things—even a child’s death. That said, we would much rather have Shawn with us and to have gone through life never knowing that a beautiful little boy could have brain cancer.

Chapter 1

UNUSUAL BEHAVIOUR

Shawn was born on December 7, 2004, in the small town of Orangeville, Ontario. His two-and-a-half-year-old sibling, Jayme, was thrilled to have a little brother and loved all the attention that being a big sister brought. Shawn was a normal baby, passing the infant milestones early and running around the house by his first birthday. He was a happy, funny little man who loved to get into mischief and chase his big sister.

In late March 2006, Shawn’s sleeping habits changed. He began to wake up several times a night, restless and irritated. At only fifteen months, like most children his age, he was in a constant state of teething, so we administered some Tylenol and hoped for a better night’s sleep for all. After a week, the irritability increased to the point that he seemed distressed even during the day. We decided to take him to our family doctor, who examined Shawn and did not find anything significantly wrong. He had no fever, no diarrhea, no vomiting, and no outward signs that would suggest anything other than maybe a cold and some teeth coming in.

Relying on our doctor’s advice, we continued to comfort him and administer pain relief in the hope that the cold would run its course. However, with each passing day, we saw no improvement. Voicing my concerns to friends, one suggested to me that boys are different than girls and often tend to be much more emotionally dependent than their female counterparts. I remember being so frustrated with Shawn’s constant need for attention that in my sleep-deprived state, I yelled at him to please stop crying and threw my cereal bowl down to the floor, causing a deep rivet in the hardwood.

A week after our first appointment with our family doctor, we visited the clinic again and voiced our concern that Shawn just didn’t seem like himself. He wanted to be cuddled all the time and didn’t want to play or participate in any social activities. Shawn was then diagnosed with an ear infection and prescribed a round of antibiotics. We were relieved to know that in a few days, when the medicine took effect, Shawn would feel better. With this in mind, we continued our regular schedule of Keith working five days, me working four, and the kids spending their days with our wonderful sitter, Sheila Amos.

Closer to the end of the week, Sheila voiced her own concerns about Shawn. He wanted to be carried around constantly, seemed out of sorts most of the time, and wanted nothing to do with his playmates. This was very unusual behaviour; he was normally such a happy little guy who loved playing with his daycare buddies. We talked about this being the age when children start to test boundaries by acting out to see how much they can get away with. We even discussed the possibility that due to his ear infection, Shawn had gotten used to the attention over the last few weeks. I suggested that Sheila let him cry for a little while to see if he would settle down when he realized he wasn’t going to be carried around.

As the days passed, the antibiotics showed no signs that they were helping at all. Shawn grew increasingly weak, stumbled when he walked, and wanted to be carried everywhere. For the third week in a row, we headed to our family doctor’s office to try to get some answers. When I mentioned Shawn’s unsteady gait, the doctor held a crying Shawn at one end of the examining room and told me to stand across from him at the other end. I called Shawn’s name and held out my arms. Of course, in his distress, he walked over to me with no difficulty. Our doctor didn’t seem overly concerned and pointed out that the ear infection may have moved into the inner ear, causing Shawn to be lightheaded or dizzy. That could account for the difficulty he was having getting around.

That Friday night, after Shawn had gone to bed, Keith and I fretted that even though we had continued to administer the antibiotic, Shawn was no better. I was frustrated with our family doctor. Not only did I feel he was not taking me seriously when I relayed Shawn’s symptoms, but I sensed that he thought of me as an overly anxious mother. We decided that first thing in the morning, we would take him to our local after-hours clinic for a second opinion. But as we sat having breakfast that morning, Shawn fell over sideways from a sitting position while playing on the floor. Keith scooped him up, put him in the car and took him to the Emergency department at our local hospital, Headwaters Healthcare. I got Jayme ready and took her over to my brother Gary’s house so they could watch her while I joined Keith and Shawn at the hospital.

When I arrived, Shawn was asleep on an examination table. Keith expressed his confidence in the young Emergency doctor who had immediately taken action with a barrage of tests. The last had been a CT scan and he was awaiting the results. Even though Keith had no experience with such things, he couldn’t help but feel the number of white coats bustling in and out of the technician’s booth during the scan, coupled with the amount of time it had taken, was unusual. I remember being thankful that someone was finally doing something to get to the bottom of this so Shawn could start to feel better.

Finally, the young doctor re-entered the room. He shook my hand and introduced himself to me. To this day, I wish that I could remember his name, but at the time it seemed to be of little significance. He had been working with Shawn all morning, trying to figure out the cause of his distress. Keith had mentioned that the doctor had been very good in taking the list of ailments seriously and was genuinely interested in getting to the bottom of things. He asked us to sit down. He told us that he was very, very sorry but the CT scan showed that Shawn had a mass in his brain. He couldn’t tell us much more other than to say that they had contacted SickKids Hospital in Toronto and assured us that it would be the best place for Shawn. He suggested that we could take an ambulance but by the time the arrangements were made, it would be faster for us to make the drive ourselves. He gave us directions, some information about SickKids, handed us the CT scan results on disc, and discharged us within a matter of minutes.

It was Tuesday, May 2, 2006, a date I will never forget. We went home, packed some of Shawn’s things and headed to Toronto. We had heard of SickKids Hospital of course, as it is well known as one of the world’s leading children’s health-care facilities. We had never been there, though; in fact, we rarely went to the city at all. Keith and I didn’t talk much during the 90-minute drive. I think we really didn’t know what to say to each other and were processing the unbelievable turn our lives had just taken.

I do remember thinking about a radio-a-thon that I had listened to a few months earlier on my way to work. Several of the well-known stations in the city had broadcast from SickKids for three days to raise money for the various programs, research and equipment needed for the hospital. I had listened to the many, many stories of kids with numerous life-threatening ailments and the impact SickKids had not only on them, but their families as well. I had felt so blessed to have healthy children and couldn’t imagine facing the unknown of a severely ill child. By the second day of the radio-a-thon, I had become so distraught over the stories that I had switched to another station. Each day, I promised myself that I would donate as soon as I made it to the office, but the good intention was forgotten as soon as my work began. I guess this was one of those incidents where you think it can’t happen to us. But it does.

Just before arriving at the hospital, I talked to Gary’s wife, Marilyn, to check in on Jayme and ask if they could watch her for the day. My brother Gary is six years older than I am and had met Marilyn when they were only sixteen, so she had been in my life since I was ten. They were the steadfast couple, the anchor that held together the pieces of our family after our parents divorced in my early teens. Whether they liked it or not, they were the ones that my older brother Mike and I had turned to with all of our adolescent problems. It had not changed since then; they were still the ones we turned to for advice and encouragement. We were close, having dinner together almost every weekend and spending summer holidays together. It would be no hardship for Jayme to spend the day with them, as she loved the attention of her two older cousins, Casey and Alyssa.

I explained to Marilyn that we were taking Shawn to SickKids. When she asked me why, I lied and told her that we didn’t know anything but that our local hospital thought SickKids would be a better place for us. We weren’t ready to tell anyone what the CT scan had revealed until we knew more about what the future held.

Once inside the SickKids Emergency department, we waited with all of the other families. Finally, we went through the many administrative procedures and paperwork to register Shawn as a patient. Once Shawn was officially admitted, he was given something for pain and we were moved to another small room in the Emergency wing. Under no circumstances were we to give him anything to eat or drink so we took turns trying to keep him busy and distracted as the time slipped by. When the nurse came in to administer an IV, Keith and I looked at each other with horror. Did we have to torture Shawn like this? I lied down on the bed with him, holding him still while the IV needle and tube were inserted. He let out an ear-piercing scream, but it was over very quickly and Shawn became more concerned with the tape on his hand than with the pain he had experienced. We were assured that the doctor would be with us soon. In the meantime, we took Shawn on short walks up and down the hall with his IV pole, coloured with the crayons and books provided, and played peekaboo until we were all exhausted.

Just after dinner, we met with Dr. Mainprize from the neurosurgery team. He brought the CT scan up on the screen in the small patient room. As he walked us through the various images, he explained that Shawn had a large posterior fossa tumour and severe hydrocephalus. The posterior fossa is a small space in the skull found near the brain stem and cerebellum. When a tumour grows in the area of the posterior fossa, it can block the natural flow of spinal fluid, causing a buildup of fluid and pressure called hydrocephalus.

Due to the size of the tumour and the severity of the hydrocephalus, Shawn would need to undergo surgery as soon as possible. Dr. Mainprize seemed surprised that it had taken so long for Shawn to be diagnosed as his hydrocephalus was so severe that he wouldn’t have survived another week without intervention. I thought about the three weeks we had wasted shuttling back and forth to our family doctor. Had we put our complete faith in him and not acted when we did, Shawn would have died.

In fairness, Shawn had not shown many of the more typical signs of a brain tumour such as vomiting and fever. His age may also have played a role in the misdiagnosis as he was unable to verbalize the specifics of how he was feeling. However, as we repeated to various nurses and doctors our history of multiple clinic visits, it wasn’t lost on us through their head shakes and frowns that our family doctor had not properly stepped up to the plate.

In hindsight, there were clues of Shawn’s deep discomfort. He wanted to rest his head on a pillow at various times during the day, as if he was tired of holding it up. Sometimes he would even hit his head and yell no, as if he were telling it to behave.

Surgery was scheduled for first thing in the morning. We were transferred to the neurosurgery wing where Shawn would spend the night under constant care in a ward-like setting with other critical neurosurgery patients. Keith and I took turns walking away from the noise of the hospital to call friends and family with the news. My first call was to Marilyn. She was at a loss for words, but assured me that Jayme could stay with them as long as was needed. My mom, Mary, was living with them at the time so I gave Marilyn the unpleasant task of sharing the news while I called my dad to let him know. I phoned our sitter, Sheila, who had shown great concern for Shawn over the last few weeks. Finally, I contacted my best friend, Krissa, who broke down sobbing, then chastised herself aloud for not being stronger for me. I asked her to spread the news to our circle of friends and to be the pipeline for information so I didn’t have to make multiple phone calls. Keith called his mom, Ann, who was of course devastated but promised to relay the news to their side of the family.

Around midnight, Shawn finally settled down so Keith and I went out into the hall to talk. We were anxious to know about the complexity of the surgery, what the outcome would be, and what we could expect going forward for Shawn. They were fairly certain it was a cancerous tumour called an ependymoma but would not be 100 percent positive until a piece of the tumour was analyzed after surgery. We were scheduled to meet with Dr. Michael Taylor early in the morning, just before the surgery. They assured us that Dr. Taylor was an outstanding pediatric neurosurgeon who specialized in several tumour types, including Shawn’s.

Although each tumour type is different, Dr. Mainprize had given us some startling facts about brain tumours in general. They are the leading cause of cancerous deaths among children in every country in the world. At Sick-Kids, there are over 100 new cases diagnosed annually. There is no way to predict or prevent them. The cause of brain tumours remains unknown, so researchers at Sick-Kids and all over the globe are investigating both environmental and genetic factors. SickKids itself has the only laboratory in Canada completely dedicated to pediatric brain tumour research.

Even though we had been told many times over the last few hours that there was no known cause for a brain tumour, it was very hard not to think of possibilities. Was it the satellite dish mounted on the roof outside Shawn’s room? Was it the fact that I didn’t breastfeed or because he fell down the stairs when he was six months old? Was it the pesticides in the food we all eat or because I worked at a plastics manufacturer when I was pregnant? Was it a quirk in our genetic make-up? Was it a combination of some or all of these things? The truth is that there was and is no answer as to why a beautiful, funny, blue-eyed boy had a 4 cm cancerous tumour in his brain.

We were overwhelmed by the situation and didn’t know what to think or feel at that point. We truly didn’t understand the severity of Shawn’s case. I remember feeling anxious, but not necessarily scared. I was sure that everything would be fine. Shawn was in the best possible hands and, cancer or not, he would prevail.

While Keith and I were talking, my brother Gary strode off the elevator. He couldn’t sleep and had needed to make the drive to see if we needed anything. It meant a lot to both of us to have him show up like that in the middle of the night. After an hour of quiet conversation, Gary went home feeling much as we did at that point: helpless and uneasy in a situation that was out of our control.

For the rest of the night, Keith and I took turns trying to rest on the chair beside Shawn’s bed or in the cushioned window wells that overlook the hospital atrium in the hall. In the early morning, after a sleepless night, we met with Dr. Taylor. He explained what the surgery entailed and went over the best- and worst-case scenarios. The tumour was located close to