Louis’ story: Non-Hodgkin’s lymphoma diagnosis at two

Louis was diagnosed with non-Hodgkin’s lymphoma at just two years old after his parents noticed he had developed a squint in his eye and it was slightly bulging. After various tests, doctors confirmed Louis had cancer.

Louis went on to have seven cycles of chemotherapy. He received treatment during lockdown which meant only one parent could be with him at any one time and he didn’t see his sister, Isabelle, for weeks at a time.

“He had a little bit of eye pain he was rubbing his eye, we didn’t think much of it, just thought it was an irritation. It was around the following Monday we were going to book an appointment – but just before that happened over the weekend he started to get a squint and his eye started to look like it was slightly bulging, then the Monday we took him to the GP. The GP said looks like a squint, not uncommon can be fixed but he thought it was a bit odd that it came on as quickly as it did and also that it happened now as opposed to earlier in his life. He said he wanted to go to an auxiliary hospital and get an eye specialist to look at it.

“On the Thursday we then went to see the eye specialist, day 13, they looked at it and thought he needed a scan so they did a CT scan and said there was something behind the eye so they referred Louis to Southampton and they basically said they’ll phone within one to five days then they literally phoned the next day.

“They did MRIs and on the Sunday they said they didn’t need a biopsy to confirm, they knew it was cancer and it was growing quite quickly, the size of an apricot. They didn’t know it was non-hodgkin’s at that point, they thought it was nasopharynx which is more serious. On the Sunday we had a chat with the consultant and they said they were going to do a biopsy but we’re not going to wait for the biopsy to start the treatment itself.”

Due to covid restrictions, Dad Chris wasn’t able to be at the hospital when they received the initial diagnosis.

“It was totally unexpected. I was on a zoom call on the Sunday because of covid. It was due on the Monday [start of treatment] but it ended up being the Tuesday, so straight away.”

Louis went on to have seven cycles of chemotherapy, which meant being in and out of Southampton hospital. Due to covid he could only have one parent in at a time. He didn’t see his sister and his parents would spend a few minutes together every so often.

One of the hardest conversations Chris had to have when Louis was diagnosed was telling his older sister, Isabelle, the news.

“We didn’t really explain much to her for the first few weeks because we didn’t know what we needed to explain (nor how) – but we knew at some point we needed to explain it because he was going to be in hospital for quite a while and we needed to explain to her without lying what it was. One of the first things we did was we went on the internet and looked at how you’re supposed to explain it to a six-year old and there was all sorts of stuff on there like you need to tell them it’s not their fault, and it’s not something you can catch like a cold and all sorts that you just wouldn’t think of.

“As Mum was at hospital with Louis, I took her out and we bought Louis and her a toy, had a McDonald’s, made sure I told her in the afternoon and not before bed and basically read through a script and explained what it was, made sure I explained it was cancer, explained about chemo what it would do to him in terms of losing hair”

Throughout Louis’ treatment, his family were supported by a Young Lives vs Cancer social worker, Emily. She was there to help guide them from accessing financial support to offering a listening ear to help find the strength to face cancer.

“Emily who comes in weekly, she comes in to check we’re coping but she knows how to navigate things like admin and bureaucracy and things we’re entitled to receive like financial support. Basically comes in and we have a good chat – nice to have someone looking out for us just as our family and friends would in many respects.”

Louis has now finished treatment, he is back at home with his family and doing well.

“He started school this month – it was a milestone that at one point, we thought may not happen, so it was an emotional day all round. “