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

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...