When Jack was four, I noticed some lumps on his neck and the bottom of his hair line. I took him to the GP, who thought it was lymph nodes and we were swollen and we were told it was common. After another few weeks I returned, only to be told the same. To me, Jack’s seemed to be getting bigger every day but we had an upcoming appointment with a paediatrician so I decided to mention it to her.
She checked him over and ran blood tests. I always remember on my way home my phone rang so I pulled the car over and it was the paediatrician explaining that three of Jack’s bloods were low and she would need to run another blood test. I was so upset as I didn’t understand but we went back the next day and got them repeated. This time they were lower again so we had to go back on Monday to have them checked again and at that point, she sent a referral to Crumlin.
The next day I got a call from Crumlin hospital telling me there was a bed for Jack. I was in shock, it was so unexpected. My husband worked in Dublin so all our family rallied round to help with the other three kids. The youngest was only six months at the time.
I headed off on the 4-hour journey with my parents, arriving late at night. I still had no clue what was ahead of us but by lunch time the next day our world fell apart. We were told what no parent wants to be told – your child has cancer. We were heartbroken and trying to be brave so Jack didn’t get upset.
It was explained to us that he had Acute Lymphoblastic Leukaemia and that he would need three and a half years of treatment in Crumlin. We live four hours away and have three more kids at home – how were we going to do this? I can’t go back to work…it was overwhelming. But when your baby is sick you would go to the ends of the earth for them.
What was supposed to be a 10-day stay in Crumlin turned into three weeks because Jack was so ill. We were away from home and all our family and it was so hard and yet I remember feeling so sacred taking him home from Crumlin – in case I missed something or that he would get worse. I was afraid to leave his side or to take him out of the house near people.
Jack was amazing – I suppose he was so young he didn’t understand. He was an outdoor child and when he took sick he was unable to walk without pain. We couldn’t even touch him.
I had to learn so much – a terrifying new language of chemotherapy, platelets and HB neuts, how to do chemo, bloods and dressing changes. Jack called me his nurse and I would have done anything to help him.
For the first year we traveled weekly to Crumlin and had to stay in hotels as Jack’s treatment was just a day case, but some took a few days at a time. After that it was monthly visits and if Jack was ill we had to stay in our local hospital.
The Beads of Courage Programme was so special for us as he was able to explain what each bead meant and why he got it. The string of beads got longer and longer. The play specialists were amazing too. All Jack wanted was watch his iPad but they got him to draw, play and interact again and it took the pressure of us as parents. We also had shared care with our local hospital, where Childhood Cancer Ireland funded items for the isolation rooms where we spent so, so many nights. It made life that bit easier.
Jack finished treatment in Aug 2018, having been diagnosed in April 2015.
Jack is now 11 – a happy little boy who loves football and playing with friends and always making us proud. A cancer diagnosis changes your life forever. Even when the hair has grown back, the Freddie is gone and Mr NG is out and chemo has finished, life never goes back to life before, you just learn a new normal and never take anything for granted. You appreciate life.
Jack is enjoying life and so thankful he does not remember most of the really hard times. But as parents, we will never forget.