Andy Cox shares his son's story
“We were over in England and we knew something was wrong with our son Eoghan. He was complaining of a stomach pain. He was sent to Wexford general. They performed a scan and that was when the word ‘tumour’ was first mentioned. They referred us to Crumlin the same say. He was examined there and went for a biopsy the next morning. That was when we got the initial diagnosis – they knew that it was a Burkitt lymphoma. Because Eoghan was diagnosed with Evan’s syndrome when he was 2 years of age that resulted in him having his spleen removed when he was 5. Professor Owen Smith wondered whether there was a link between the 2 conditions and so research sample bloods were sent to Germany for analysis. To date, no association such as Autoimmune Lymphoproliferative Syndrome (ALPS) has been found. He was 16 years old.
The treatment in Crumlin was superb once we got onto Saint John’s Ward. Professor Smith was so persistent with the information and tests. Eoghan wasn’t an active part of a clinical trial, but we allowed his bloods to be taken for research.
When Eoghan was having his chemo it was horrendous. That was tough, really tough. He couldn’t swallow. He lost weight. He was weak. He couldn’t eat and his size plummeted. He was so miserable. He just wasn’t himself. He looked like a skeleton walking. He was very gaunt. He was skinny and bald – like a stick insect. It was very hard to watch as a parent. Bizarrely, he was really upbeat about the whole thing. He was joking about his appearance and just laughing at himself.
He was fifteen going to the sperm bank. It was such a strange experience. He was still joking and laughing. I think he was trying to keep us laughing to stop us from falling apart. I guess if we fell apart it wouldn’t have worked. None of us actively tried to be strong. We just had to be, for each other.
When your child is sick, it is a pivotal moment to reassess and all the unimportant or silly things fall away. We didn’t argue about anything trivial or petty during the treatment. It was not a positive thing that happened by any means, but it’s probably made him a little bit harder long-term. Now, he is mouthy, opinionated and cheeky – a normal sixteen year old! He was really keen to get back to school. He never uses his disease as an excuse or a crutch. He loves being back with his mates. He’s in TY now and he’s thinking of what subjects to pick for his Leaving Cert.
For Eoghan, the future is great. He’ll be studying for his leaving cert next year. We have a parent - teacher meeting tonight. He wants to go to college and do history, then he wants to go on and be a teacher. He has a real passion for history, particularly 20th century, and geography. He loves Asian history – someday he wants to go to Asia and travel more of Europe. Most kids would want to go to Disneyland but he would love to go to a place rich in history and culture. He wants to see everything and do everything now. Travelling is his passion too. His hunger for different cultures and countries is unreal. He digests books – he could read until the cows come home! He is such a smart kid, some of the things he comes out with just blows my mind.
For me and his mum, at the end, it was so drawn out. We had gone through so much and everything was on hold. Afterwards, you look back and realise how bad things were and how lucky you have it now. You’re almost on auto when you’re going through emotional trauma. I love reading but I couldn’t read when I was in Crumlin. I couldn’t concentrate. I just couldn’t engage my brain when Eoghan was sick. It was a struggle to do the normal things. You don’t see the point of doing anything beyond what you absolutely have to and then there’s the fact that you’re so knackered. I was so lucky because work were great. They were so understanding in HR of what we were going through as a family. There are things I don’t remember from when Eoghan was going through treatment. I don’t know if it’s because I was so knackered or if it’s because I blocked it out, but I always remember how decent the people around me were. Small things, like a text, a call, or even someone handing you a cup of tea, were sometimes what got me through the day. Now Eoghan is out and about a fair bit now, back to his old self. Now, we can finally breathe. It’s such a relief.” – Andy Cox, Eoghan Cox’s father, 12th March 2018.