A mum whose brain tumour has returned almost 20 years after she was first diagnosed says she “will do anything” to find a cure for the disease so she can be there for her four children. Emma Fox, 35, was first told she had an Oligodendroglioma - a primary central nervous system tumour - after having a seizure on the bus home from school.
Aged 17 at the time, the teenager had suffered with migraines and occasional seizures from a young age but they were put down to febrile convulsions. It was only after she had an MRI scan was she given the devastating diagnosis that there was a large mass on her brain and was rushed into emergency surgery.
Emma, from Gwynedd, said: "Because I had been suffering from the age of about three or four with migraines and illnesses I always knew that there was something wrong. I think I was diagnosed on September 23 or 24 and I was in the Walton Centre (a neurology hospital in Liverpool) within four days. So it was pretty quick.
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"My mum was working abroad as a holiday rep at the time, so she'd had to get an emergency flight home to be there with me in the hospital. I think my mum and dad were more worried than me, I know they were more worried. Dad cried in the hospital room when I was diagnosed, when they told me there was a tumour in my brain."
Emma said at the time she didn't really process it and wanted to go back to her "normal" life and finish her A levels. It is only now that it has returned and she has children to consider that the gravity of the diagnosis has really hit home. At the time she was told that the tumour was grade two and slow growing but would always eventually return despite surgery.
"I didn’t cry, it was only recently when they told me it had come back did I cry. Back then I didn’t have any kids, I was 17 I thought I was invincible. I was in my A level years, I just wanted to get back and do my A levels. All I wanted to do was just go home, go back to normal life." Fortunately the surgeon was able to remove all of the tumour and she didn't need any further treatment such as chemotherapy or radiotherapy.
Emma had been having regular scans since her first diagnosis and sadly in June 2019, one of these scans showed that the tumour had returned after she suffered her first seizure in six years. In December 2020 she said her consultant was concerned at how much it was growing and advised surgery to remove it again.
This was cancelled by a Covid outbreak at the hospital as there was "a very real chance" Emma "wouldn’t make it" had she caught the virus while immunocompromised. Three years on and she is still waiting for the tumour to be removed.
"This was the first time it had come back. After it was removed before he (her consultant) didn't really want to give me a timeframe but he said on average it'll be roughly about seven years before it comes back, that’s usually the case for most people.
"A few years ago, I started to get the migraines again, and the dizziness, I just started to feel how I did the first time I was diagnosed, so I knew there was something going on. And then at my next MRI they confirmed it started to grow. I still haven’t had a date so I am in limbo now.
"My health is getting worse as I'm getting older. I'd rather him do the surgery now. If I've got a fighting chance, I've got more of a reason to get through it now. My kids need me." Emma now has four children ages 14, 13, five and three and says this has made her view the diagnosis.
"It's really got to me and I think it is probably because I've got the children to think about, the first time around it was just me. I try not to think about it too much."
Emma has now had around seven seizures in a fourteen month period and says she is concerned that these are caused because the tumour is growing or spreading without her knowledge.
"Normally my seizures are because I've forgotten to take my medication, or I've not eaten so my blood sugars are dropping and it affects the electrolytes. But this last one was unprovoked, I’d made sure I had taken my medication, I’d eaten at every meal time but I just went down. I just blacked out and had a seizure. I want answers you know, is it because it is spreading?" she said. "It is definitely getting worse. So that's what's making me think, right, okay, it is the tumour?".
Emma says that she has made sure her children are aware of her illness and say they all deal with her seizures differently. Her husband works away during the week so they have had to be aware of what is happening to their mum.
"I've got a 14 year old, he's had to deal with seizures since he was three years old. So I had to teach him how to use my phone and how to open the door to let my dad in. My 13 year old is autistic and his way of dealing with it is to just shut off. I don't know if it's just his way of coping with it or he just doesn't get it.
"Everyone's got a different coping mechanism. I've got a five year old and she knows that mummy falls over and mummy has to lie down and sleep and she's caring most of the time or she will sit and she'll just give me a cuddle, which is nice.
"And then I've got the three year old who is a little whirlwind most of the time, but when I've had a seizure, he sits beside me and he calms down. I don't hide it from them. They know that it will make me sick and maybe I'll have to have an operation so they're going to have to be good for daddy."
Emma is now on a watch and wait scheme, with a follow up scan in June to assess whether she still requires surgery and when. Despite her fears, she says she is "determined" to beat the tumour. "I have to get through it for the kids. My older two don't have their biological father in their life. I don't want them to lose me as well.
She has been working with Brain Tumour Research to try and raise awareness for the condition as well as raise money to help fund research.
"There's very little funding and is the biggest killer of under 40s. And although I've been told that it's highly unlikely my children will inherit it, there is obviously the chance of developing this brain tumour. I believe mine was caused by a fractured skull when I was three years old, but they can't prove that. "I want to make sure that if they ever have this thing that they might have a found treatment for them."
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