Holly Atkins Fooks, from Marshalswick, in St Albans, Hertfordshire, was just 11 years old when she died from a glioblastoma (GBM). She began suffering from migraines, pain behind her eyes, nausea and vomiting in July 2014, but, despite a scan revealing an abnormality on her brain, it was not until March 2016 that she was diagnosed with a brain tumour. She underwent two debulking surgeries, six weeks of radiotherapy and three courses of chemotherapy, but, sadly, her tumour continued to grow. By the time she died in September 2017, Holly was blind and had been bedbound for several months.
Here is Holly’s story, as told by her grandmother Jacky …
Holly was funny, happy and full of life. She loved animals, playing with her dolls and bossing her poor granddads around when she played schools with them. Her name was a happy name, rhyming with jolly and emotive of the joys of Christmas, when she was born.
“Like all grandchildren, she lit up our lives.”
Sadly, she is no longer with us, having succumbed to an aggressive glioblastoma (GBM) in September 2017. This horrible disease, which kills more children than any other cancer, appeared suddenly from out of nowhere and meant Holly’s happy, carefree days were numbered. She has since become another statistic. Unbelievably, just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002.
“I don’t understand how so little can be invested in trying to find a cure for a disease that is killing our children.”
Holly had a perfectly normal life until 2014 when she began suffering from unexplained sickness. However, no one thought much of it at the time. She was eight years old and young children often get sick for all sorts of non-sinister reasons. When she started getting headaches, the doctor thought she might be suffering from migraines. We didn’t think she was and were puzzled as she was taken back and forth to the GP.
When Holly started having mild partial seizures, affecting only her eyes and head, we tried to think of logical reasons why they might be happening, such as shop lighting. They were strange because you could talk to her during an episode and she would respond if you asked her to do things. Eventually, she was referred to the Luton and Dunstable University Hospital’s neurology department.
In October 2014, Holly had a big seizure and was taken to the Luton and Dunstable where a brain scan revealed something tiny in her brain that shouldn’t have been there. The hospital blue-lighted her to Addenbrooke’s Hospital, in Cambridge, for further investigation, suspecting a potential brain bleed. There was no bleed but scans revealed there was something. However, the specialists didn’t think it was a brain tumour.
“They described it as a ‘partially calcified developmental venous abnormality’ which they likened to a freckle or a small birthmark on her brain.”
Holly was scanned every six months to monitor the abnormality, but some of these were done without contrast dye, so proper comparisons weren’t possible. She was also referred to a local epilepsy clinic which put her on anti-epileptic drugs. After this, Holly made repeated visits to hospitals and doctors as her mum, Clare, was unhappy with her diagnosis. She felt Holly’s seizures weren’t normal and wanted to get to the bottom of what was causing them.
“In March 2016, Holly’s brain scan revealed her abnormality had changed, increasing in size from 4mm to 8mm.”
This is the point at which the specialists became concerned. At the end of April, Holly bravely underwent brain surgery to remove it. Two weeks later, the team operated again to remove as much marginal tissue from the brain as possible without causing damage.
“Poor Holly had been through loads of tests and now two brain operations, but she was amazing and took it all in her stride.”
She never got upset and accepted whatever had to be done. She made a good recovery, much to everyone’s relief, and we were pleased the ‘thing’ in her head had been successfully removed.
“The bombshell came on 27 May 2016 when Holly’s parents were told this innocuous ‘thing’ was, in fact, a cancerous brain tumour for which there is no cure.”
Treatment could extend life but her tumour was terminal so the end result would be the same. There’s no point trying to explain the effect this news had on our family, friends, and even the surgeons. However, Holly never knew her poor prognosis. No one saw the point of telling a 10-year-old child she was going to die. The adults alone would bear the agony of knowing the truth. Learning her name had been passed to the local children’s hospice was utterly horrendous and felt like a knife through the heart.
“Late in the summer of 2016, after Holly had recovered from her operations, she began six weeks of intensive radiotherapy.”
She had to wear a special mask and lie alone on the bed while her brain was bombarded with radio waves in the hope of destroying the remaining cancer cells in her brain. Despite how scary the scenario was, Holly lay there happily listening to One Direction songs. She had her special pink blanket (pink was her favourite colour) and her dolly and doggy soft toys for comfort. She also took oral chemotherapy drugs, but these were abandoned after being found to have no effect on her cancer.
“Glioblastoma blasts its cells out and around the brain so they spread and take root elsewhere.”
It is a hopeless disease to eradicate and there is no cure. Sadly, the cancerous cells in Holly’s brain weren’t fully eradicated and so they returned. Holly was unaware although she was gradually told about tumours and that she was very ill.
We celebrated our shared birthdays on 2 January 2017, Holly 11 and me a bit older. We both wore inflatable golden crowns, like the Queen, and had a lovely family gathering with lots of fun. Looking back, I realise how precious times like this were.
“Now every January my birthday is a reminder of the devastating fact Holly is no longer with us.”
She was taking a cocktail of drugs, anti-sickness, anti-seizure, painkillers, steroids and more. Steroids help to reduce swelling in and around brain tumours, but they have awful side effects. Holly’s weight increased because of them and she became bloated with a puffed-up face. Of course we all accepted the changes.
When Holly found she couldn’t move her left arm properly, she insisted on feeding herself one-handed and held her limp arm close to her body, jokingly calling it her ‘dodgy fin’. When her legs stopped working properly and she could no longer get upstairs to her beautiful newly-decorated pink bedroom with fairy lights, a stairlift was installed and she was given a wheelchair.
“Clare was determined to fight the cancer and keep Holly’s life as normal as possible.”
Sadly, Holly’s tumour grew quickly and she deteriorated. By the summer of 2017, she had become bedbound. A hospital bed was installed in the living room so life could revolve around Holly, with visits from friends and family always welcome. One day I got a phone call to say Holly had requested ‘Nanny’s special paprika chicken’, so I soon found myself going over as guest chef.
Clare did an amazing job devoting herself to Holly’s care, but she was often exhausted. Simple tasks such as toileting involved a hoist and plenty of time. Clare slept on the sofa downstairs so she could be there for Holly 24 hours a day, seven days a week but visits from outside services and hospice nurses became more frequent. Eventually, Holly began attending a children’s hospice for a day or two at a time and was given a room for whenever she wanted it. It was fantastic.
“Clare said the hospice was like a hotel with nurses and it allowed her to have a much-needed break.”
Holly lost her sight but, true to form, she didn’t complain and instead felt around for things. It was so cruel to watch this once happy, bubbly child so affected by the cancer in her brain. We all tried to carry on as normal but we knew it was hopeless.
“We gradually watched our beloved granddaughter spend more time asleep than awake, unable to do anything except lie there.”
Visitors, especially younger ones, were so brave as they tried to smile and be cheerful with Holly whose little dog Rocky didn’t understand why she, his boss, wasn’t playing with him anymore. Holly finally died in the late afternoon of 21 September 2017. She was just 11 years old.
I can’t say she slipped away quietly. It was quiet as she was unconscious and in no pain because of the drugs she was on, but she fought to stay in this world. She was surrounded by those who loved her and she didn’t want to leave.
“Her heart, strong and young, fought to stay beating but the evil forces of her brain tumour finally overcame her body and it stopped – it was the saddest day of my life.”
Holly always wanted to ride in a camper van. She loved them so much that Clare found her a specially converted one in which to travel to the crematorium. It had pink streamers waving from the roof corners and we all wore something pink in her honour. Holly’s casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful dolly and doggy and we sprinkled fairy dust over her casket as we said ‘goodbye’. We like to think she’s in a special place now, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things, just as she used to.
“We will never forget her.”
Jacky Atkins
April 2024
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Holly’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure