Bethany's story
Just weeks before her 2nd birthday, Bethany was diagnosed with stage four high risk neuroblastoma, after a lump was found in her tummy. She needed intensive treatment for a year and half, and was clear of her cancer for around six months.
But two years after her initial diagnosis, a routine scan in May 2019 showed that the cancer had returned in her head. Beth needed more chemotherapy and the tumour was successfully removed. Eight weeks later, another scan showed cancer spots in her hips. Beth carried on with her treatment for another three months, but in September 2019 another routine scan showed that it hadn’t worked.
It was then that her family made the extremely hard decision to stop Beth’s treatment, take her home and give her the best life they could in the short time they had together. On Christmas Eve 2019, Beth quietly passed away. She was five years old.
Jill, Beth’s mummy shares their story.
Beth’s symptoms and diagnosis
“You never think your child will have cancer. Like many families, we had never heard of neuroblastoma when Beth was diagnosed. ”
“We’d gone back and forth to the doctors and I felt like an over-zealous mum. We were told she was teething and that it was a viral infection.
Beth was diagnosed with neuroblastoma when she was 22 months old.
But I knew something wasn’t right - she didn’t look ill but she wasn’t sleeping and was only eating very little. She also wasn’t walking even though she was nearly two and she kept falling down when she tried to stand. When Beth developed a yellow bruise under her eye and her lymph nodes started swelling in her head, I took her to the GP surgery. I’d had enough. We needed help and we needed answers.
The locum doctor immediately noticed the mark on her eye. He sent us home, contacted our local A&E and we waited for our call. That same day, he called and told us to take her to the children’s ward. That’s where our rollercoaster journey started.
We took Beth to the hospital for blood tests, initial scans and x-rays. The doctors thought it could be cancer but they didn’t know what cancer it was. We were then sent from our local hospital in Kent to St George’s Hospital in London for a biopsy.
That’s when we found out it was neuroblastoma. She had a Hickman link put in, had a week in hospital in London then we went to the Royal Marsden Hospital to start chemo.
Nothing fazed Beth during her treatment
Beth started the RAPID-Cojec high dose chemotherapy regimen that night which was really scary, especially on our own. But nothing fazed Beth. She was always so happy and positive during her treatment.
She had a stem cell transplant and high-dose chemotherapy but only complained about her nasal tube. She was home six days after having an operation to remove the tumours in her brain. She had a seizure because of the immunotherapy but five minutes after it ended, Beth wanted to play on her tablet!
We were so proud of her fighting spirit.
Beth adored Peppa Pig
But the cancer returned
“ When we were told the cancer had come back for a third time, we were just gutted. We couldn’t believe it was happening again. This cancer was relentless. What were we going to fight it with now? ”
Nothing fazed Beth during treatment
Beth was cancer free for about 6 / 7 months, but after a routine scan, we were told the cancer had returned to her head. She carried on with chemotherapy and had Temozolomide for 12 weeks to keep it at bay. We got a call from the hospital to say they would like to try and remove the tumour and two days later, she was in surgery. It was a whirlwind. Incredibly, the surgeon was able to remove the whole tumour.
But despite all that, eight weeks later another scan showed cancer spots in her hip. When we were told the cancer had come back for a third time, we were just gutted. We couldn't believe it was happening again.
This cancer was relentless. What were we going to fight it with now?
The scans showed that the cancer had spread from her head to her toes. Beth was offered a clinical trial but we could see how weak she was and the trials were still in their early stages. We didn’t know how much more she could take, we didn’t know if the cancer would keep coming back, and we didn’t know if the treatment would work. How were we going to fight it when none of us, including Beth, had it in our tanks to fight anymore?
We made the decision to take Beth home
“Choosing to take your child off treatment is the hardest decision you can ever make. But we wanted to enjoy the time we had with her and we knew it was where she would want to be.”
So, around two weeks before her fifth birthday, when the doctors told us there was nothing more they could do to help her, we made the decision as a family to take her home. Choosing to take your child off treatment is the hardest decision you can ever make. But we wanted to enjoy the time we had with her and we knew it was where she would want to be, surrounded by her favourite bun-bun and Lucy Dog toys.
We were able to make some really special memories in the time she was at home. We went to Peppa Pig World, Thomasland and even to Disneyland. We were going to celebrate Christmas early but she just wasn’t well enough. We still decorated the house like we always did and had a little tree just for her.
Beth slipped away quietly on christmas eve 2019
“I asked Beth if she knew she was going to become an angel. She looked at me and nodded...She slipped away quietly next to me at 10.30am on Christmas Eve and I told her “I love you. Fly high.” ”
Beth and her little brother James
In the days before Christmas, Beth was in and out of sleep, and was awake for only ten minutes at a time. Around this time, I asked her if she knew she was going to become an angel. She looked at me and nodded.
On the 23rd December, her little brother James gave her a kiss goodnight - not knowing it would be the last night with his sister - and we made Beth comfy in our bed. On the morning of Christmas Eve, we read a story and watched The Gruffalo’s Child on TV. She slipped away quietly next to me at 10.30am and I told her “I love you. Fly high.”
On Christmas Day, we gave James his present from his big sister - a new scooter. When we took him for a ride, there was just one little cloud in the sky that looked like an angel’s wing. We knew she was watching and I truly believe she waited to become a Christmas angel.
We involve Beth every year at Christmas time - she has a Christmas Eve box and we hang decorations on her special tree. This year on Christmas Eve, we’re going to have lunch in her honour, blow bubbles on the beach and celebrate her life.
I wonder whether things might have been different if Beth was diagnosed earlier or if her treatment was different. If I can save just one child by helping a family recognise just some of the many different symptoms of this vicious cancer by sharing our story, I’d be so happy.
Every donation to Neuroblastoma UK that has been made in Beth’s memory means the world to all our family. And I know that these donations will help children like Beth get kinder treatment and one day, find a cure for this aggressive cancer.”
Big Give Christmas Challenge
This year Neuroblastoma UK are taking part in the Big Give Christmas Challenge 2024.
Donate on the Big Give website between noon on Tuesday 3rd December and noon on Tuesday 10th December 2024 and double the impact of your donation.
One donation, double the impact.
For one week only, any donation you make to our project, Innovation to Impact: A Cure for Neuroblastoma will be DOUBLED - up to £5,000! With your support, we can accelerate research and give children with neuroblastoma the future they deserve.