3
TREATMENT

When the doctors suggested they'd start the treatment, Mum said they provided her with a summary of what the treatment would involve. Again, there were more tears and mounting fears within the family. Mum poorly understood the chemotherapy and doctor speech, but years later she said she was just happy they were going to try to save me.

The medical staff apparently kept reminding Mum that the odds of my survival were extremely low. The family didn't really take that news into consideration. Instead, they merely thought: ‘Treatments are starting, so we've got hope.'

Mum and I on my first birthday, about to receive my first dose of chemotherapy at Camperdown Children's Hospital.

The doctors came in to inform Mum that they were going to start me on my treatment: ‘They'll be starting in the morning.' It would be 2 May, the very first anniversary of my birth — I was barely a year old. Mum remembers asking the medical staff whether we could hold off for just one day so that I could enjoy my special day with my family, but their reply was as definite as it was immediate: ‘Every minute counts.’

Rather than focusing on the grim facts and the excruciating side-effects that the treatments would have on my tiny body, my family later explained to me that they had decided to see the first day of my treatment as marking the time that we started to beat this cruel and insidious disease.

As Mum told me when I was old older, a cake arrived the very next morning, bearing one little candle. Nevertheless, it was a very short-lived celebration; one moment, the candle was blown out, and the next, one of the doctors marched through the door, followed by some of the nurses. It was time to commence round one of chemotherapy treatment, which provided my best hope of survival. My family really had no idea whatsoever how it was going to make me feel, or the impact that it was going to have on my body.

On the first day of my treatment, the doctor located my strongest vein, and through it the first lot of chemotherapy was injected. Years later, Mum told me that her immediate reaction was a feeling of excitement, but her belief that this was the stuff that was going to both rapidly and very effectively make me better turned out to be very short-lived.

Within five minutes, I started projectile vomiting, and the vomiting could not be stopped. It was as violent as it was persistent. In fact, according to Mum, the vomiting was so intense that the back of my throat became so badly burned it would bleed. Then, after the vomiting stopped, I could not eat, because the burns turned into painful and tender blisters. At the start of my treatment, my cycle was nine days on and three days off, and after every treatment, Mum became more convinced that I was going to die. I was just so sick.

Years later, Mum told me that for a while she started to leave the room during the treatment — just so that she could sit outside to get some fresh air. While outside, she would cry so hard, because she was just so helpless; there was just absolutely nothing she could do to either make me better or ease my immense suffering. I recall that as I grew older, my mum would always try to hide her tears from me, because she would never want me to see her visibly upset.

Regardless of her efforts to hide her sadness from me, as a one-year-old I would have been intuitively aware of when she was sad. Her eyes were constantly glassy, even though she worked so hard to hide her fear and sadness from me. Her unflagging and selfless strength is something that I will forever admire. To this day, her strength instils in me both inspiration and a determination to be like her.

A number of years after treatment, Mum explained she'd very quickly realised my first round of treatment was not going to equate to a short or temporary hospital visit, because the side-effects of the treatment were taking a serious toll on my body. In fact, she recalled one morning she awoke from sleeping in the chair beside my bed, only to see a look of despair, confusion and fear on my face. I was sitting up in bed, holding handfuls of my own hair, and trying to comprehend what was going on.

Throughout the night, my eyelashes and eyebrows had fallen out, and I was starting to look like a gravely ill little boy — much like a number of other children in the ward who had undergone the same treatment and died.

After a year had passed, Mum came to a level of acceptance about where we were headed within the hospital environment, and the journey we had no choice but to take. She was remarkable. She could always see the light and she constantly managed to maintain her optimism and hope, irrespective of how low and dark our days became during the treatment journey.

Even as a little guy, I apparently always loved to help others. Mum tells stories about what she used to do after I had my chemotherapy; she would try really hard to get me to sleep, because when I went to sleep after chemotherapy, I would not vomit. At two and a half years old, I began to tell the other children in the ward to do exactly the same thing as my mum kept trying to do for me.

The other children were in their beds, awake, vomiting, and extremely sick and miserable. According to Mum, I would stand up in my cot and instruct the other children: ‘Hey, boy; you go to sleep. You won't be sick.' Clearly, I was keen to share with the other kids in the ward what had helped me.

Me at 18 months old, having chemotherapy through a drip into my head so I can have two hands to play with.

On my own, I also worked out that if I counted to one hundred, the needles would be in and the pain in my hand would be gone before I even knew it, so I got very good at counting, and boy, did I learn fast!

After the chemo had really started to kick in, my mum started carrying me around, like most mothers do. One morning, I just started crying incessantly, and Mum could not understand why. The crying continued for two days, and my mum said to the doctor: ‘This is not normal; please do something!’

Dr Mary ran heaps of tests and found that the drugs had made my bones so brittle that they had cracked. I had several fractures under my armpits, around my elbows and both knees. This was caused by one of the drugs, called vincristine. They stopped the drug immediately and I had to wear a helmet. I was in a cast, and elbow pads and knee pads had to be worn to prevent further damage! It was critical that we protected my bones as the pain was immense.

This went on for two months, and finally, the bones repaired themselves. Unfortunately, Dr Mary needed to restart the vincristine again. I can only imagine the pain Mum would have felt being so utterly helpless, and not being able to help or take my pain away.

There were times during the days of chemotherapy treatment that I was not permitted by the medical staff to be outside in the sunlight. Sometimes, there would be around 15 to 20 kids outside playing baseball, and for once, these kids were actually enjoying their lives. All of the parents had a ball, and we had to run around the yard, still attached to the trolleys that held our intravenous fluids, which in many cases had become permanently fixed to our hands.

Dr Mary would come out to yell at Mum. She'd say: ‘It's wonderful what you're doing, but Michael's the only child that shouldn't be out there.' Mum never wanted to treat me any differently from all of the other kids. For instance, from a young age, she insisted that I use the toilet in the hospital. She taught me how to make my bed, as well as how to use a knife and fork. Ultimately, she made me feel like I was a normal kid — at least I thought so anyway.

Throughout the treatment journey, Mum continued to remain very naive about blood groups, and she also had a poor understanding of the damage that the chemotherapy was doing to my normal bodily functions. On one occasion, it was getting really close to Christmas. Mum just so desperately wanted to go home to be with Dad and the girls so that the family could spend Christmas together.

Regardless, Dr Mary informed my mum that my bloods were not good, and that we couldn't go home; we had to stay where we were during the Christmas holidays. I remember that Mum felt so strongly she ended up getting a bit nasty with the doctor, and she accused Dr Mary of being inhumane.

She even went as far as criticising Dr Mary for having no consideration for our family. Even at three years old, I felt that Mum's complaints against Dr Mary were very unfair. Dr Mary basically acted like an old-school teacher, and she firmly and authoritatively requested for Mum to venture outside my room into the hall, so that she was away from me.

My mum obediently followed her request, which sounded more like an order, and Dr Mary followed her into the hall. Even though they were in the hall, I could still hear their conversation.

As a child, I thought the first question Dr Mary posed to Mum was really weird: ‘How old do you think I am?’ Years later, Mum said that she had actually tried to be very kind in her answer to the doctor.

She replied, ‘Strange question, Mary. Around 45?’ Mum said she looked much older than that, but she was trying to be really nice, hoping that the doctor would be flattered by Mum's response and would let us go home to the rest of our family for Christmas.

Dr Mary sounded weary, although nonchalant...