Watching his teenage son, Eoghan, go through chemo was “horrendous, tough, really tough”, says dad Andy Cox.
The journey to St John’s Ward, Crumlin Children’s Hospital, had begun with the 16-year-old complaining of stomach pain while on a trip to England. “We knew something was wrong,” says Andy.
At Wexford General Hospital, Eoghan underwent a scan and it was then the family first heard the word ‘tumour’.
“They referred us to Crumlin the same day,” says Andy. “He was examined and went for biopsy next morning. That was when we got the initial diagnosis — they knew it was a Burkitt lymphoma.” Like leukaemia, Burkitt lymphoma is a blood cancer. Blood cancers are the most common cancers in children — but at the same time a fairly rare disease.
“In Ireland, from childhood up to age 18, there are somewhere between 50 and 60 a year,” confirms Professor Jonathan Bond, recently appointed to the newly-established Brendan McGonnell UCD Professor of Paediatric Molecular Haemato-Oncology Chair.
According to the Lymphoma Association, symptoms of Burkitt lymphoma usually develop quickly, over just a few days or weeks. The most common symptom is one or more lumps, which often develop in several parts of the body. These are caused by lymphoma cells building up in lymph nodes, causing them to enlarge.
Seeing his son sick and watching him endure chemo, Andy says he “just couldn’t engage my brain. 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. 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”.
On chemo, Eoghan couldn’t swallow. He lost weight and 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.”
And yet, says Andy, the bizarre thing was Eoghan was really upbeat about the whole thing. “He was joking about his appearance and just laughing at himself.”
This sense of humour had also sustained Eoghan — and his parents— when the teen went to the sperm bank to freeze his sperm prior to treatment. “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.”
Having to think of freezing one’s sperm while reeling from a cancer diagnosis is difficult for any man, says Bond — and yet, it’s so necessary.
“Treatment could result in infertility or it could damage the DNA in the sperm, causing mutation. I would say it’s traumatic, particularly so for an adolescent having to think about having a future family. It might be easier for a 20 or 30-something to think about these issues. But for a child — having to think about doing this to preserve chances of having a child yourself — it would be pretty difficult mentally.”
The prognosis for children and teens hit by blood cancer has improved dramatically over the last decades, says Bond.
“Fifty years ago, every child with it would have died, whereas now survival is 85%-90% for all comers.”
With Eoghan now recovered, his dad says:
We can finally breathe. It’s such a relief. He’s out and about a fair bit now, back to his old self. It wasn’t a positive thing that happened by any means, but it’s probably made him a little bit harder long-term.
“Now, he’s mouthy, opinionated and cheeky — a normal 16-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 thinking of what subjects to pick for Leaving Cert.
“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’d 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’s such a smart kid, some of the things he comes out with just blow my mind.”
At Crumlin, Eoghan wasn’t an active part of any clinical trial but his parents allowed his bloods to be taken for research. Now, a new research programme has been established at UCD with the aim of improving survival rates of children and teens affected by blood cancers.
Professor Bond’s research will focus on understanding how normal gene regulation is subverted in acute leukaemia — the ultimate goal is to develop new and better treatments for every child and adolescent with this blood cancer.
Bond cites two main problems with current treatments for leukaemia: a significant number of children and adolescents suffer relapse. And the non-specific — and very toxic — chemo used can leave side-effects for a long time.
“The main acute one is suppression of the immune system, so the person’s very vulnerable to infection — and a bad infection can kill you.” Steroids also constitute a big part of leukaemia treatment but they too leave a legacy of side-effects.
“They cause problems with blood supply to the bones, which is worse in adolescents because they’re growing. This can cause a lot of pain and in severe cases joint surgery may be necessary.”
At UCD, the aim will be to find targeted, specific treatments for blood cancer, thereby bypassing potential side-effects. Bond estimates it will be two to three years before research “generates a meaningful result”.
For Andy Cox, accompanying your child through a difficult illness is a perspective-changing experience.
“When your child’s sick, it’s 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.”
For him and for Andy’s mum, 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.”
And there were blessings along the way for which Andy’s grateful.
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.”