Kylie Weatherby

3 min read

Kylie Weatherby, of Thetford, Norfolk, was 36 weeks pregnant with twins when she was diagnosed with a brain tumour, later revealed to be a glioblastoma (GBM), after having a seizure in May 2021. She was rushed into surgery 10 days after delivering her babies. After further surgery to rebuild her skull, chemotherapy and radiotherapy, Kylie was told she showed no evidence of disease. Sadly, after enjoying more than 12 months of clear scans, in December 2022 she underwent surgery for suspected regrowth of her GBM. This was later revealed to be a grade 2 plemorphic xanthoastrocytoma (PXA) for which the 34-year-old is now undergoing chemo.

Kylie tells her story …

I moved to Alabama in 2012 after marrying an American serviceman I met whilst working as a housekeeper at RAF Lakenheath, in Suffolk. We went on a blind date, hit it off, dated for a couple of years and then married in 2011, not long before he was medically discharged and forced to return home. At first being in the US felt like I was on holiday, but eventually I settled into life there. My husband and I broke up but life carried on and I began working as head hostess at a family-owned restaurant, which is by far the best job I’ve ever had.

In the summer of 2020, I started feeling like I had brain fog. It went away but as COVID-19 hit, I felt it more and more. I also started getting really tired. I was having to sleep as soon as I got home from work but I put it down to stress because of everything that was going on.

“Then, towards the end of the year, I found out I was pregnant with twins and figured that was to blame for my foggy head and extreme tiredness.”

When I was 36 weeks pregnant, in May 2021, I had my first seizure. I’d been sent home from work towards the end of my shift because I was tired and had swollen feet. I got back, walked the dog and went straight to bed. Then, sometime between midnight and 1am, I woke up feeling sick and rushed to the bathroom. I remember being on my knees with my head over the toilet before waking up with an ambulance crew around me.

“My dog woke my partner up in time for him to find me having a seizure on the bathroom floor and call 911.”

I thought I might have had pre-eclampsia, which my mum had suffered from during both her pregnancies, but I was given a scan at the UAB Hospital in Alabama and told I had a brain tumour. It was overwhelming but my main concern was for my babies. The doctors kept an eye on me, but told me to enjoy my last weeks of pregnancy. I delivered Luca and Malena by caesarean section on 28 May. Everything went smoothly and I was soon able to return home. Their dad went back to work four days later and that’s when I passed out again after feeling intense pressure in my head. I had just enough time to call him and an ambulance. 

“The next thing I knew I was coming out of surgery.”

It wasn’t possible to rebuild my skull straight away, so I was sent home wearing a helmet to protect the exposed part of my brain until 1 July by which time the swelling had reduced sufficiently.

“It was the day before that surgery I learned my tumour was a grade 4 glioblastoma (GBM).”

The significance of that and what it meant to have a terminal diagnosis didn’t hit me for a good few weeks. I was alive and breathing and just trying to stay as positive as I could for my babies’ sake. After being discharged, I was on about six different medications, but they altered my moods such that I quickly had to come off them. Now all I take is the anti-seizure drug Keppra.

“In August 2021, I started six weeks of combined radiotherapy and chemotherapy.”

I felt tired but I knew that it was helping me get better so I didn’t mind too much. I lost a bit of hair in the last two weeks and I came out in a red rash on the left side of my face, which became really itchy, but I was determined to get through it.

“I had monitoring scans in October, January and April and was relieved to be told I showed no evidence of disease.”

Things didn’t work out with Luca and Malena’s dad so I began making plans to return home to be closer to family. I had always intended to go back but the time suddenly felt right.

In May 2022, my mum and stepdad came to Alabama to help me with the move. I hadn’t wanted to see them before then. I think I knew I had to be strong for the kids and seeing them would cause me to have a meltdown. We landed in the UK on 4 June.

“I was pleased to finally be home but, after living in America for 10 years, it was a lot tougher to adjust than I had expected.”

Everything seemed to be going ok until a routine scan in October 2022 led to some shocking news. I was informed there had been regrowth of my GBM and was scheduled to go under the knife at Addenbrooke’s in Cambridge on 5 December. I was a nervous wreck. As soon as I heard they had found something, that was it. I started crying and saying repeatedly “I can’t leave my babies”.

“It was a very emotional day but fortunately the tumour they found was small and could be operated on.”

The tears returned after I was wheeled into the operating room but the staff were lovely, holding my hand and cuddling me to offer reassurance. I think the enormity of my journey hit me all at once. I hadn’t had any time to prepare for my first surgery but this time I had a couple of weeks to think about what could go wrong. 

“It was as I was recovering at home that I received the news my tumour wasn’t regrowth of my GBM after all.”

It was an entirely different tumour, a grade 2 plemorphic xanthoastrocytoma (PXA). This was hard to believe and gave me a lot to be thankful for. 

“As a precaution, in January 2023 I started a six-month course of chemo.”

Having to do this again didn’t put me in the best place mentally but I’ve been working on myself and am now in a more positive frame of mind. My last course had to be delayed because my platelet count was too low but this is being managed. I generally find that I’m ok for the first three days of treatment, then I spend two days feeling nauseas and another two days recovering before that treatment ends and another cycle begins.

My faith helps keep me strong. I try to live each day as best I can, believing them to be blessings. I make an effort to connect with other patients on social media and find that helps us feel less alone. My advice to them is to never doubt themselves because they’re stronger than they think.

“I also strive to make a difference by raising awareness of brain tumours and the need for further investment in brain tumour research.”

My mum has taken part in the Brain Tumour Research 10,000 Steps a Day in February Challenge, whilst my sister has taken part in the charity’s Walk of Hope and my nephew did the 100 Squats or Star Jumps a day in November Challenge. For my part, I’m always happy to be involved in publicity and recently had the pleasure of visiting the BBC studios in Elstree to talk about my experience with EastEnders scriptwriters and Danielle Harold, the actress who plays brain tumour patient Lola.

“The soap’s current brain tumour storyline, which the charity is working with them on to ensure it is portrayed as realistically and sensitively as possible, is really important and one I’ve been watching with great interest.”

Kylie Weatherby
March 2023

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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