My son's leukaemia - a father's story
Jack McGrath was diagnosed with leukaemia just after Christmas in 2003. He was 4 years old. Kevin is Jack’s dad. This is his story of this time and life since.
I didn't think it could be possible
During Christmas, Jack had been listless not wanting to play with either his new toys or his cousins. He then developed bruising on his legs. My mother-in-law contacted the emergency doctor because she was so worried about Jack. She thought she was whispering on the phone, but my wife Amy and I both heard her say she was concerned it could be leukaemia. To be honest, I didn't think that could be possible. We thought he was just under the weather. If I didn’t think it was possible, then in my mind, it wouldn't happen. But we took Jack to our doctor for a blood test and later that day got a message saying we had to take Jack to our local hospital straight away.
Doctors were waiting for us when we arrived and they said Jack may have acute lymphoblastic leukaemia. My instant reaction was to cry. I remember sitting in the playroom, Daisy and Jack were playing, and the doctor said the diagnosis would have to be confirmed in London. Jack would need further tests. I thought Jack was going to die. I couldn’t see any different outcome.
We were rushed to the Royal London Hospital by ambulance, where a bone marrow aspiration confirmed the worst.
Acute lymphoblastic leukeamia
We discovered that Jack’s body was overrun with leukaemia. If you could have taken it out, it would have been the size of a football. The doctors explained the treatment Jack needed. He had to take a cocktail of drugs every day for the next 3 years. We asked how long he would have had if we hadn’t taken him to the doctor when we did. They said he could have slipped into a coma, with only about 8 weeks to live. He would not have made his 5th Birthday. Jack started treatment that day.
The first few weeks
The first few weeks were unbelievably hard. Amy stayed with Jack at the Royal London Hospital and I drove up every day. Luckily, there was often somewhere we could stay that was run by a charity - you just had to give a donation. It was a real blessing. Amy's parents had Jack’s little sister Daisy. They both work but managed to look after Daisy and visit Jack and Amy.
I am self employed, and so the situation obviously had a great impact as I was not able to earn anything. We had a mortgage to pay and bills – including fuel bills of £69 a day! To say we were in dire circumstances is an understatement. Even now, we are still trying to get our heads above water.
I had Daisy as much as I could. I would pick her up in her pyjamas from her grandparents. She was only 9 months old and was away from Amy and Jack, so I wanted to be with her as much as possible.
Our life - with leukaemia
Jack was in hospital for 3 weeks but he continued to have treatment once he came home. This meant we lived from day to day. Our kitchen was like a hospital, our house was constantly being cleaned, and we had to limit visitors because Jack could pick up infections very easily. It was very scary - this was not the life we were used to.
We administered Jack’s medicines, and when he could not manage the stairs we had to carry him. He was sick a lot of the time, so his bedding was always being changed. Because of the steroids he had to take, Jack’s weight fluctuated dramatically. Jack on steroids was a whole new ball game. We never knew which Jack we would get, the emotional one that wanted cuddles, or the angry one. Mostly it was the angry Jack. Steroids change your child beyond recognition. We just wanted OUR Jack back.
We couldn't go to crowded places in case Jack caught an infection, so he couldn't go to the cinema or other places children should go. Amy couldn't go to work because she needed to care for Jack, as well as suffering from anxiety. I worked as much as I could, but sometimes I was totally physically and emotionally drained. We constantly had to travel to London, for Jack’s bone marrow aspirations, lumbar punctures and IV chemotherapy. We would have to leave at 4.30am, try and get Jack in the car without causing him too much discomfort, then get the wheelchair in. Often Jack couldn’t eat because he would be having an anaesthetic. This was heart wrenching for us and frustrating for Jack.
Even though Jack’s leukaemia is now in remission, he still has to go to the hospital for check ups. Since his treatment, he has problems with his legs and he has to wear night splints and ankle braces in the day.
I did not really speak to anyone about Jack, only Amy. I couldn’t explain what we were going through. I didn't want to sound as if I was droning on to people, and it upset me too much to talk about it all. This was something that we would cope with as a family. What got us through the worst times was sticking together. I found being honest, realistic and having family around that are 'just there' helped me most. We also found which of our friends and family wanted to help, who kept in contact, and who stuck around.
Amy and I were told early on that a majority of couples do not make it through this. Well, we are still together. Amy and I have broad shoulders now and we know what is important in life. We are fearful of the future as there is no guarantee in life, but we are lucky we still have our Jack. We cannot and will not ever forget that.
My pride in Jack
Jack’s leukaemia has made us much more aware of the impact of cancer. As a family we have raised money for different charities. I am very proud of Jack. The way he has fought his cancer and the fact that now he is so willing to help others.
To other dads
If you have been told your child has cancer I would say
- Be honest
- Be strong
- Cry if you need to
- Ask lots of questions
- If you are not happy with something, say so
- Never feel in the way - you are that child's father
- Try not to shut your family out
- Some people will not know what to say to you but they are not being ignorant, they are probably nervous
- Get ready to watch a lot of kids' TV!
- Acute lymphoblastic leukaemia is the most common type of leukaemia diagnosed in children
- It is more common in boys than girl
- Around 8 out of 10 children now survive this type of leukaemia
Jack has been a Cancer Research UK Little Star. Do you know a Little Star? Cancer Research UK’s Little Star Awards, celebrating the courage of children with cancer, are open until February 2010. Visit www.cancerresearchuk.org/littlestar for more details
On CancerHelp UK, there is more information about acute lymphoblastic leukaemia. There is also a section on children’s cancers in our question and answer section. Choose ‘children’s cancers’ from the drop down menu of cancer types.
Sharing your story
The 'Your tips and stories' section of CancerHelp UK provides tips and support for people currently coping with cancer and treatment. You can use the Your tips and stories contribution form to tell us how you coped, so that other people with cancer, or their families, can gain help and support from your stories.
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