IT HAPPENED TO ME: Declan Molloyhad chemotherapy for nine months after he was diagnosed with acute myeloid leukaemia (AML). This is his story, as told to Fiona Tyrrell
I WAS NINE when I was diagnosed with leukaemia. My parents didn't tell me that I had cancer. I was told that Luke would be staying with us for a while, but that then he would go away. I didn't know that Luke was cancer.
My mam knew there was something wrong with me because I had lost lots of weight. She brought me to our GP to get my bloods checked.
I was taken to Crumlin Hospital in Dublin. They thought it probably was leukaemia, but it was not fully diagnosed until I was given a lumbar puncture and they found out that I had the adult form of leukaemia called AML (acute myeloid leukaemia). This is much stronger than the children's version.
My treatment started straight away. I was brought into theatre and a Broviac catheter was put into my chest. This is a tube used to take blood and give chemotherapy and other drugs during treatment. In the children's hospital this tube was given the name Freddie.
My chemotherapy started the next day and it went on for nine months.
The first few days were fine. I just remember being thick with my parents because I was out of school and my friends were not allowed to see me. But then the chemo kicked in and I was totally wiped out. Chemo kills off every cell in your body whether it is good or bad. Even your hair cells, which is why your hair falls out.
It is hard to describe how you feel on chemo. I was drained, I had no energy and no appetite. I slept a lot and had no concept of time. I was not even in the mood to watch TV. There is only so much Barney you can watch anyway.
Visitors would come in and ask me how I was and I had to repeat the same answers all the time.
One of my mam's friends gave me a keyboard and I played music on it as much as I could.
My treatment was divided up into 10-day sessions. Then I had a break for a few weeks to recover. I was allowed home during this time, but because my immune system was broken down I was more at risk of getting an infection.
I got an infection after every chemo session and had to return to hospital. I usually went to my local hospital for that. I also had to get a lot of red cell and platelet transfusions. As my treatment went on the chemo got stronger.
My mam and dad, Tony and Maira, had to spend lots of time with me so my brother Stephen, who was five at the time, was shipped off to stay with Granny. His life was put on hold.
My treatment started in October and finished up in June. Tests confirmed that the cancer had gone. The final stage of saying goodbye to Luke was getting Freddie the catheter out. I have been in remission since then.
That summer I spent 10 days in Barretstown. I was told it was a camp for sick children. I was dreading it. I guess, having been sick, my self-confidence was gone - I had no hair, no friends and I was very nervous.
I had an amazing time. Barrretstown helped rebuild my confidence through therapeutic recreation. I am not sure how it works. It is like magic. Going from being a sick child in hospital with no energy to standing on top of high ropes with lots of kids who have had the same experience egging you on is amazing.
We didn't really talk about our illness at the camp. We all knew we had something in common, but avoided talking about it. I guess we were all tired of talking about it.
That September I went back to my school, Killenard National School in Portarlington, Co Laois. I had missed a whole year at school. All my friends went onto fifth class, but I had to stay back. That was tough. I felt that I was back with the babies, but I make friends easily so it went okay.
Now I am 16 and in fifth year in Rathangan Post Primary School. Lot of kids my age slag me off for being very mature or very grown up. I had to grow up very quickly. In science class I knew much more about biology than other kids.
I was never angry about getting leukaemia, but I did get frustrated at times and wonder: "Why me?"
Lots of people around here know I had leukaemia and often I'm referred to as "the lad that was ill". People say: "Aren't you great?" I get sick of that sometimes.
I recently played the lead role in Oklahoma, the school musical. Now some of my granny's friends describe me as "the lad that was in the musical". That's an improvement.
For a while I wanted to study medicine or nursing. I wanted to give something back. Now I am not so sure. I really like music and maybe I'll do that after school.
I think about Luke every day still. When I was in hospital I made friends with Aoife, a girl from Drogheda. She was able to tell me what to expect because she was a month ahead of me in treatment. We are still very good friends and her mother and my mother became best friends too.
This summer I am going back to Barretstown to start my training to become a cara - a volunteer at the camp. When I am 18 I will work in the summer as a volunteer.
Readers are invited to write in about their own experiences of the health service, good or bad.
Responses should be sent to healthsupplement@irish-times.ie