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Day 27: If only…

Damian's blue cancer folder

We have started going through our things in preparation for moving house.

I pulled open a drawer and sitting on top of the telephone directory was an A5 sized blue plastic folder. My heart missed a beat as my eyes focused on this folder. I felt so many different emotions in that moment. I stood there staring at the folder.

I was handed this blue plastic folder on Wednesday 25 August 1993.

I took it out of the drawer and opened it. The first words I read were:

You will know now that your child has cancer and we will have spoken to you, your child and the rest of your family…

I found myself struggling to quell the tears even after all these years.

It was suddenly that fateful day.

My 10 year old son Damian had not been himself for a while. His only complaint had been a sore tummy and feeling tired. I had a sense something wasn’t right when he didn’t want to play rugby that winter season but didn’t dwell on it any further. I made numerous trips to the doctor with him but these didn’t seem to unearth anything of any consequence – a virus and then asthma were the most serious of the doctor’s diagnoses. However, Damian didn’t seem to get any better. He started spending a lot of days at home and not going to school.

On this particular morning in August 1993 our family doctor decided to send us off to the Accident and Emergency Department of our local hospital; he suspected Damian had pneumonia. He had contacted us at 6am to find out how Damian was and I knew he was worried about him.

By the time we reached the hospital Damian was in a bad way. He could barely walk, he was complaining of really bad tummy pain and couldn’t stand straight, he was vomiting, and had diarrhoea. After a blood test and a chest X-ray, and a lot of waiting, we were informed that Damian needed to be admitted into hospital for treatment. They confirmed the diagnosis of pneumonia.

We headed off to the children’s ward with my son curled up in a ball in a wheelchair. He had a high temperature at this stage and was very quiet.

We arrived at Ward 18 and walked through the double doors; not for a minute imagining that this place would become a second home to us over the next two years. On either side of the long corridor were bedrooms filled with sick kids – the ward was very full. I noticed a lot of the kids had bald heads. They were hooked up to all sorts of drips and equipment. I thought how lucky we were that Damian’s problem was relatively minor in comparison.

It was almost 1pm when Damian’s father and I were called into a room to meet with the doctor. We walked into the tiny room that was barely the size of a double wardrobe. There were four people sitting there waiting for us – a nurse, a specialist, a registrar, and the charge nurse for the ward. I did wonder why it was necessary to cram so many people into this room to tell us that Damian needed some IV antibiotics.

The word LEUKAEMIA came like a bolt out of the blue. It turned out that the pneumonia was the least of my son’s problems.

“What? Did I mishear that? What is going on?” My mind was racing and a panicky feeling was starting to surface.

The specialist, who turned out to be a paediatric oncologist, kept talking. I heard words like acute lymphoblastic leukaemia, T cell, high risk, chemotherapy, radiotherapy, 70%, 3 months, 2 years … but all I could focus on was the word leukaemia. I kept hearing it over and over again in my head.

“This can’t be happening. It’s not possible. They’ve made a mistake,” were just some of the thoughts whirring around in my head.

All I could think about was that my 10 year old son had leukaemia; he had cancer! This meant he was going to die. This is what life experience had taught me. People with cancer die – they don’t survive!

“You’ve made a mistake,” I said out loud to the doctors. “You can’t possibly make such a diagnosis after only a blood test and a chest X-ray.”

It turned out there was no mistake and Damian’s leukaemia was so advanced it was very easy to make the diagnosis. They explained everything to me but I was in a state of shock. None of it made any sense and I was so scared.

“What am I going to say to my son?” I asked.

I didn’t know how to tell him how seriously sick he was and not break down in tears. I didn’t know if I could answer his questions. Reality dawned on me. Damian’s body was in such a bad way they needed to start chemotherapy immediately to save him. Things were not good and there were lots of things to worry about.

“Oh my god, what do I do? How do I handle this? What preparation do we get to deal with situations like this?”

The specialist offered to talk to Damian and explain what was happening to him. I had to be strong – my son needed me to be strong.

“Thank you,” I replied. “I want to be there when you talk to him.”

“Off course,” said the specialist.

However, when Damian asked the specialist “Am I going to die?” I couldn’t stop the tears from flowing down my face.

“I am going to beat this,” responded my son after the doctor had explained that they were going to do everything they could to help him stay alive.

Later that day after I had calmed down a bit I started analysing what had happened in the previous few months. If only I had done this or that maybe this wouldn’t have happened … If only I had been more forceful with the doctor … If only I listened to my gut instincts that were telling me something was wrong … If only … If only … If only …

So began a journey that will never be obliterated from any of our lives. It is a journey I wouldn’t wish on anyone. It is a long and arduous journey. It is a journey where you learn what really matters in life. It was love that helped Damian and the rest of us keep going. Love, and being there for him, was all I could give my child as he fought for his life. It was his battle to fight but our role was to let him know he wasn’t alone. He was never, ever alone. He still isn’t.

This blue folder that I came across today contains hundreds of blood test results, details of Damian’s chemotherapy regime, growth and height charts, my notes on things I needed to remember or things I needed to tell the doctors, contact details for medical staff, and many other things that were important at the time. This blue folder contains a medical story of a young boy’s struggle to stay alive and a mother who did her very best to help her son achieve this goal.

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