The following article is the personal story of Bray Cancer Support Centre client Cathy Lynch, whose son Dylan was diagnosed with leukaemia.  Cathy has written this story in order to help other parents who may be going through a similar journey with a child.  The story is in Cathy’s own words, please do not reproduce without gaining the permission of the author.  Copyright 2014 Cathy Lynch.

On the weekend of June 21st 2013 we were just like any other family. My son Dylan played in a soccer tournament on the Saturday and finished his round robin matches in tennis on Sunday. His sister Emma who was six was out playing with her friends and having fun and they were both looking forward to their summer holidays. Dylan had his school tour on Monday and I had made an appointment for Dylan to see his GP on Monday afternoon. He had had some bruising on his chest a few weeks previously which had gone away so I did not take much notice of them. Then he started to complain that one side of his tummy was harder than the other. Again I did not take much notice until he said it was hurting him and then a number of bruises appeared on his legs. As I was working my husband Cathal took him to the GP. Cathal phoned me in work to say that the GP said that the pain and hardness in his tummy was due to an enlarged spleen and he said he would have an appointment in Crumlin for us by the end of the week or that we would be sent in through A & E. Cathal got a phone call from the GP shortly after and was told to bring Dylan into Crumlin straight away. Cathal and Dylan picked me up from work on their way to Crumlin. Little did I know then that I would not be going back for quite some time. We were seen almost straight away in A & E and they were not happy with Dylan’s blood tests so he was kept in overnight. The next day we were told that either Dylan had an infection or it was leukaemia. I could not believe that my healthy 10 year old boy who had shown no signs of tiredness or infection, all the things you would expect, could have leukaemia so I convinced myself he had an infection. It was not until I saw the consultant appear with his team of about 8 that I realised this was not good news. Myself and Cathal were sat down and told that our son had Acute Lymphoblastic Leukaemia otherwise known as ALL. Our whole world fell apart. How could this be happening to us? The only other part of that conversation I remember is the consultant saying that he would be fine and would grow up healthy and have children of his own. Everything else is an absolute blur.

The next days’ went by in a haze. Dylan was diagnosed on June 25th 2013 and treatment started the very next day. He was transferred to St Johns Ward which is the Oncology Ward in Crumlin Hospital. He was brought to theatre where he had a lumbar puncture where chemo was inserted into his spine, had a sample of bone marrow taken and had a Hickman line inserted. This line all the children refer to as their Freddie and this is where all his treatment was given and all bloods were taken. We were told at the time that his Freddie would become his best friend and boy were they right. I cannot imagine how things would have been if Dylan had to get a needle every time he needed treatment or bloods taken. The day after this Dylan was given his first round of chemo and to see him sitting there attached to a drip containing chemo was almost more than I could bear. At this stage Dylan was not aware of his diagnosis but as he said to me after “Mum I knew you would not be crying if I was just sick”. Trying to find the words to tell Dylan was the hardest things we as parents have ever had to do. We just could not find the right words to say. A few days after he was diagnosed Dylan saw a boy on the ward who had lost his hair and asked his Dad that dreadful question “Dad do I have cancer?” Cathal and Dylan then had the conversation we were so dreading. Our 10 year old boy now knew that he had cancer. He was obviously upset but I don’t think either Cathal or myself knew what a brave, courageous and positive son we actually had.

Dylan was kept in Crumlin for ten days and the first phase of treatment was explained to myself and Cathal and also the medications he would have to take at home. At the time I remember thinking how am I ever going to get used to all this but it is amazing how fast you get used to these things when you have to! We were given a list of dates and the treatment he would be having. We were told that the first six months of treatment would be very intensive as the aim was to get rid of the leukaemia cells and then keep them away. In total Dylan’s treatment was to last for three and a half years. The first phase of treatment was very tough on Dylan and he lost a lot of weight and his hair followed shortly after. This was one of the things Dylan was dreading but he dealt with it in a very mature way. He wore a hat for a while especially when going to school but after a few weeks he stopped wearing it altogether. Dylan had a bone marrow test after seven weeks of treatment and this was to assess how well the treatment was working. That phone call to say that the treatment was not working as well as they hoped and Dylan would have to go on to more intensive treatment was the lowest point for me. I had accepted the fact that Dylan had leukaemia and we were going to get through this but I was not prepared for this. I arranged an appointment for Cathal and I to see the consultant and when he said to us that these results were a good thing for Dylan I thought he had gone mad! He explained that previously this test had not been done and therefore they would have continued to treat Dylan as before but now that they knew the treatment was not working as well as it should be they were able to do something about it. This made me feel a lot better. There was another bone marrow test done approximately ten weeks later and that phone call to say that Dylan was now in remission was the best phone call I have ever had. We still had a long road ahead but at least we knew that the treatment was working.

It is very hard to explain the past year of our life’s but suffice to say that I don’t think we will ever have a tougher year. The first four months for Dylan were the hardest and during this time he was in Crumlin three times for unscheduled visits the longest being for two weeks when he developed pancreatitis a rare side effect of one of the chemo treatments he had received. This was when Dylan was sickest and at this stage he had lost approximately seven kilos. He had to have a feeding tube inserted which was one of the most traumatic things for him. His summer holidays were spent lying on a couch unable to do anything. It was only when he began to feel a little better that he began to really miss all the activities he used to do. Seeing him look out the window at all the boys playing football on the green was heart wrenching for all of us.

In the past three or four months life has improved dramatically for Dylan. We are now only in Crumlin once a month for treatment. He is on oral chemo all the time and steroids five days a month. He is back playing tennis and has returned to goalkeeper training. In June he got to go to Wimbledon to see some of his favourite tennis players playing and he had an absolute ball. It is amazing how much you appreciate the simple things in life and boy is Dylan making the most of his summer holidays this year.

There are a lot of people who deserve our thanks and praise. We would have to say a big thank you first to Dylan’s GP Dr Philip Sheeran Purcell who acted so quickly once he saw Dylan, to Dylan’s consultant in Crumlin Prof Owen Smith and to Fiona, Claire, Lorna, Rosanna and all the doctors and nurses in Crumlin who have done their best to make our journey a little easier. We would also like to thank all the staff in the Bray Cancer Support Centre especially Veronica, Joan, Serena and Eimear who have helped us through this last year. A few people have said to me that they did not realise the Bray Cancer Support Centre treated children. Well let me say they do cater for children and they do it brilliantly. Both Dylan and Emma love the reflexology, massages etc they receive there and of course they always look forward to the treats! On a personal level I would also like to thank our families and friends who supported us and without whom I do not think we would have gotten through this.

I will sign off by saying if there is anybody reading this that is going through a similar situation to ours I would have to say it probably is the worst thing that you will ever go through but things do get better and there is support out there. Take all the help you are offered as believe you me you need every bit of it. The best part of all of this is seeing your child come through the other side. There is no nicer feeling in the world than that.

Cathy Lynch

Copyright 2014 Cathy Lynch