In 2018, when he was seven, Cillian had a cold for a while. He had lost weight, but we thought that was because he was more active and had been playing in the snow. We blamed his cold on the snow too. A few weeks later, he had stopped eating, saying he felt something was stuck in his throat and he couldn’t swallow. I also noticed he wasn’t sleeping and was sitting up in bed every night.
Doctors said it was a chest infection but he suddenly became very ill and was critical. He nearly passed out in the car on the way to hospital and couldn’t move, talk or walk.
The hospital thought it was pneumonia and we still thought that when we were sent to Crumlin. He was admitted to the heart ward and, after lots of scans and tests, a doctor told us there was a mass pressing against Cillian’s heart and windpipe. Being naive, I thought the ‘mass’ meant fluid from the pneumonia. I’ve never felt as numb when the doctor said the mass was a tumour and that he had cancer – T cell lymphoblastic lymphoma.
He had to go to theatre to have a chest drain put in to drain the fluid off his lungs but because his breathing was so bad they couldn’t put him asleep for the procedure and he couldn’t lie down flat as the tumour was pressing against his heart and windpipe.
It was touch and go afterwards – his breathing and heart were so compromised and his team said it was up to Cillian if he was going to survive the trauma of having the chest drain put in with no anaesthetic. I couldn’t see through the tears, I couldn’t breathe, it was all too much. I had stayed pretty strong up till this point, not thinking it was serious.
But Cillian began to defy the odds and in less than a week a doctor came to us with a big smile on his face to tell us that the tumour had been reduced by 50%! We were over the moon everything was moving in the right direction.
When he moved down to St. John’s Ward, Cillian was the new boy on the ward, it was the first time we had seen a child with cancer other than him and he looked at me with fear in his eyes. Every family’s story is different, but we all shared the same pain – fear for our children’s lives.
We got to our room and my teaching began. I had to learn all about his bloods –
Neuts, HB, white cells, platelets. I also had to learn how to clean and flush his Hickman, how to bathe him properly.
We were not allowed house plants, to clean in the same room as Cillian, to be near building sites because of the dust, large crowds, spray deodorant, share food or drink, touch his vomit after being sick because his vomit is toxic after chemo… it’s a lot to take in when your mind is already filled with so much.
When it was time for Cillian to get his Freddie (which gives access to veins for chemo and blood transfusions), he was well enough to lay down and be put to sleep. He had spent the last month sitting up because he knew his body couldn’t take the pressure of lying flat. I was so nervous and so was Cillian. Even though they said everything was fine it was so scary.
It was so strange seeing a tube running under my child’s neck and sticking out of his chest. I felt ashamed that I didn’t know all children with cancer have these freddies. I couldn’t believe the first time I knew about what these kids go through is when it happened to my own child. It didn’t seem right. We all know what adults go through why not our children?
Taking him home scared me the most. Cillian couldn’t walk, the steroids were so strong and affected him badly. We had to help him into the car and up the steps of the house. The first night home we went to give him his medicine before bed and I couldn’t figure out the dosage. I panicked and broke down, I phoned the hospital and told them we need to go back I can’t do this on my own. I don’t know what I’m doing. Something so small and I was panicking already. How we will do this for three and a half years!
With one month to go now till treatment ends and Cillian gets to ring the bell, my anxiety is worse than ever. My life for 3.5 years has been about monitoring Cillian’s bloods, his temperature, keeping track of prescriptions and keeping on top of infections – constantly focusing on numbers. I don’t know how to move on from that.
Cillian, on the other hand, is doing amazingly. He has just joined a hurling team and is fighting through the leg pain from his steroids with the knowledge that he only has five days left of them and he will be just like everyone else.