In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Holly Atkins Fooks
Holly was just 11 when she passed away in September 2017, less than two years after being diagnosed with a highly aggressive brain tumour for which there is no cure. She endured two brain surgeries; chemotherapy and radiotherapy, the maximum amount a child could be given. Her family was devastated when, despite treatment, the brain tumour grew back leaving Holly disabled and bed-bound.
“Holly always wanted to live in a camper van; she loved them, and so she travelled to the crematorium in a specially-converted camper van with pink streamers waving from the roof corners. We all wore something pink in her honour. Her casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful Dolly and Doggy and we all sprinkled fairy dust over her casket as we said goodbye. We think she is out there somewhere in a special place, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things – just as she used to do. We will never forget her.”
Holly’s story is told by her mum Clare and grandmother Jacky:
Holly was full of life, funny and happy. She loved playing with her dolls, loved animals, she had just discovered make up and handbags and loved to boss her poor granddads around when she played schools with them. Born in January, she was called Holly - a happy name, rhyming with jolly and emotive of the joys of Christmas.
Like all children and grandchildren, she lit up our lives. We speak in the past tense because Holly is no longer alive. She died last September 2017 aged 11, after a courageous battle with glioblastoma multiforme (GBM), one of the most aggressive types of brain tumours you can have. Her happy, carefree days were numbered and, sadly, she has become another statistic
This horrible disease kills more children than any other cancer and wipes out the equivalent of a whole class of children every year. Unbelievably only 1% of the national spend on cancer research has been allocated to one this devastating disease which is killing our children. The treatments alone have not progressed in many years, a standard treatment for many and available to Holly only in capsule form which became increasingly difficult for her to endure.
Since the age of seven Holly had odd episodes of feeling unwell and sometimes vomiting which we assumed was down to some bug or other which she had picked up. Children are sick all the time for all sorts of simple reasons.
Holly was active and healthy otherwise, swimming, horse riding, dance lessons and doing well at school. She was a normal happy little girl. When Holly started complaining of headaches and an “achey eye” in the mornings, my instincts as a mother told me something was wrong. I took Holly to an emergency optician appointment and a GP appointment straight after. The eye test didn’t reveal anything worrying which put my mind at rest, our doctor felt it could be migraines so Holly was prescribed medication and I was instructed to keep a diary of any headaches. Life continued as normal for us, only one headache easily treated with the medication.
Around three months later we were walking to school and Holly called to me that her eye had gone wobbly, having been trained in epilepsy I instantly recognised Holly to be having some sort of seizure, it was unusual as she was able to communicate and follow simple instructions, not typical at all of seizures I had seen over the years. A referral was then made to our local neurology department but whilst waiting for our appointment Holly complained of feeling unwell and had another much larger seizure which resulted in her being admitted to hospital. A CT scan was performed and, along with Holly’s father, I asked to go and speak to the doctor in his office. It was one of those moments that every parent dreads and a moment that we sadly would become used to.
The consultant told us that they had discovered a very small area on Holly’s temporal lobe, it was felt this was an AVM, a small tangle of blood vessels on the brain, these appeared stable however we would need to be blue lighted to a more specialist hospital as Holly may need urgent surgery. Along with a resuscitation nurse and two paramedics, Holly and I were rushed to Cambridge. I can’t describe how frightening that felt.
Following an MRI with contrast, it was revealed that there was no AVM but a tiny calcified area, measuring just 9mm in size. We were told it was nothing to be concerned about, only that it had started to cause problems that could be treated with anti-epilepsy medication. I was reassured that the findings were not typical of a tumour and they were in fact 99.9 % certain is wasn’t, it could be as something as simple as a mole, freckle or a birthmark.
Holly was discharged and she was to have repeat MRIs every three to four months to monitor the abnormality. She was also referred to the local epilepsy clinic and put on anti-seizure drugs. During this time Holly suffered further seizures, diagnosed as focal seizures, and we were backwards and forwards to the hospital, she had so many tests but never complained, it had become our new way of life. There are times when as a parent you question your own sanity, I was the only person who had seen Holly’s seizures, was I overreacting, imagining them? But my head and instincts knew there was something terribly wrong. As a family we were always looking for answers and trying to make sense of it all.
In March 2016 a routine MRI revealed the abnormality had changed. It had increased in size and the consultants were taken by surprise. This was the first time the words “brain tumour” had been brought into the equation. I was again reassured that the tumour appeared to be benign, very small but needed removal. At the end of April, Holly bravely had surgery to remove the tumour which would then be sent for a biopsy. To watch your young child being prepped for such an invasive operation, I won’t try and explain; along this journey there have never been any words to come close to how I’ve felt.
Holly’s father and I were the only ones allowed near her in the ICU and we both felt so relieved, another surreal feeling watching your child in intensive care, with a whole team to herself, taking care of her. She was an absolute star, our sweet, beautiful child didn’t cry or complain once. All the ICU nurses instantly fell in love with her.
A second brain surgery followed two weeks later as the first biopsy carried out was inconclusive. Poor Holly, she had been through so many tests and now two brain operations. She was amazing and just got on with it as she always did. She never got upset but just accepted whatever was done. To everyone’s relief she made a good recovery and we were pleased that the brain tumour had been removed. The bombshell came on 27th May 2016 when we were informed that the histology results showed the tumour was a GBM, one of the most aggressive types you could have. There was no cure, only treatment to extend life for as long as possible but the end result would be the same.
It is impossible to explain the effect this news had on us as parents, Holly’s grandparents, friends, everyone, even the surgeons. Holly knew she had a brain tumour, even before she had surgery, but we chose not to share the prognosis, why tell a ten-year-old child she was going to die? It would serve no purpose. The adults would have to bear the agony and, among them her doting brother Bradley, aged 20, whose heart was broken. Being told her name has been passed to the local children’s hospice only added to our pain; it was horrendous.
On June 15th 2016, after Holly had recovered from her operations, she began six weeks of intensive radiotherapy and chemotherapy, taken within an hour of her radiotherapy. It was the day before her brother’s birthday and to leave him and have to prioritise one child over another broke my heart yet again.
Holly had to wear a special mask, another procedure done a few days before, watching her every day for six weeks, her brain being bombarded with radio waves, felt so desperate. Despite this scary scenario she was always happy and lay there listening to her Zane Lowe CD. She had her special pink blanket (pink was her colour) and her much-loved soft toys Dolly and Doggy, her special comfort toys that she had since a baby, that had been with her at every moment. Once treatment had finished we went on holiday with one of Holly’s grandmas, she had been by our side throughout all of Holly’s treatment, and six weeks had taken its toll on us all.
On our return Holly was to start a maintenance dose of chemotherapy, a much higher dose than before, she could have had it for up to 12 months. Unfortunately due to the higher dosage her already-weak body didn’t tolerate it well, endless blood tests and weekly trips to hospital revealed this. She managed three cycles. A capsule dissolved in warm apple juice, highly toxic, an already sick child crying at each cycle because she feels so sick she can’t bear the taste, and further vomiting, another impossible time to describe to anyone who didn’t witness it, this was the only treatment option.
Any decisions with continuing treatment were sadly taken out of my hands. Holly’s seizures and further headaches were back ten-fold, I could go through every appointment, every conversation with doctors, paying privately and going to Harley Street, homeopathic doctors the list is endless. I was fighting for my daughter’s life at every angle possible at this point.
You see GBM blasts its cells out and around the brain, it has long tentacles, these can’t be seen on an MRI, so they spread and take root elsewhere. It is a hopeless disease to eradicate. There is no cure. Sadly the cancerous cells in Holly’s brain were not all eradicated and the tumour returned. This is such an aggressive cancer which defies treatment and sadly after the onset of symptoms an emergency MRI was carried out it confirming our worst fears, all treatment had been futile, nothing further could be done to keep our beautiful Holly here with us all, where she belonged.
Holly shared her birthday with her grandma on her dad’s side and, on 2nd January 2017, they celebrated by wearing inflatable golden crowns like the queen. Holly was 11 and grandma was a bit older! We had a lovely family gathering and lots of fun. Looking back, we realise how precious times like this were. Grandma has had another birthday since then but Holly is no longer here. You can’t halt time and the days of 2017 continued to pass. It would have saved a lot of heartache if we could have stopped it. Now we have to look back and treasure each moment we spent with Holly. The year went too quickly.
Holly was taking so many different drugs to try to combat her sickness and seizures, painkillers, steroids and more. The steroids reduce any swelling in the brain but have terrible side effects including weight gain. We just accepted the changes, she was still our beautiful girl and at least the medication was keeping the awful headaches and seizures at bay. In January 2017 she found she couldn’t move her left arm properly, I only realised because she kept pulling her sleeve down, my poor Holly was trying desperately to protect me, her mum. She still insisted on feeding herself one handed and held her limp arm close to her body, joking about it, calling it her naughty fin (like in Finding Nemo).
Next her leg became weak and Holly couldn’t get upstairs to her beautiful newly-decorated pink bedroom with fairy lights, so a stair lift was installed and she also had a wheelchair to help her get round. Holly started to go into the children’s hospice for a day or two. She was given a room and told she could use it any time. It was fantastic. Like a hotel with nurses we said and it gave me a bit of a break even though I never left Holly’s side.
The hospice became mine and Holly’s lifeline, I couldn’t have got through it without them, and she was able to swim, play games, do art, and go on trips. We were all determined to fight this cancer, I wanted to keep life as normal as possible but, sadly, the tumour grew quickly and Holly deteriorated. By the summer of 2017 she was bedbound. I tried so hard to not let it control her or us and we spent every day giving Holly the happiest of times, even if that meant eating cake at 3am!
Her hospital-style bed was in the living room so life could revolve around her and visits from friends and family were always welcome. Visits from outside services and hospice nurses were becoming a daily occurrence as they monitored Holly’s care. Simple tasks such as washing, using the toilet, changing position, involved a hoist and plenty of time. I slept on the sofa downstairs in order to give her round-the-clock care.
Holly’s eyesight gradually deteriorated again although she didn’t say anything. It was only when she asked for some help with her phone screen that we noticed. True to form she didn’t complain but just felt around for things. This once happy and bubbly child was now so affected by this cruel cancer in her brain. It is a horrible disease and it was dreadful to watch its rapid and devastating progress.
We all tried to carry on as normal but we knew it was hopeless as we watched our beloved daughter gradually spend more time asleep than awake, unable to do anything except just lie there. Her little dog Rocky didn’t understand why his boss and best friend wasn’t playing with him anymore and visitors, especially younger ones, were so brave as they tried to smile and be cheerful with her.
Holly passed away on 21st September 2017 in the late afternoon after a month of deteriorating further. She was 11-years-old. She was surrounded by those who loved her, she didn’t want to leave and had fought so hard, it was the saddest day of our lives. I can never explain the heartbreak of losing my precious beautiful child; she was so incredibly strong and brave I wasn’t ready to let her go, but I couldn’t bear her suffering anymore either.
Holly always wanted to live in a camper van; she loved them, and so she travelled to the crematorium in a specially-converted camper van with pink streamers waving from the roof corners. We all wore something pink in her honour. Her casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful Dolly and Doggy and we all sprinkled fairy dust over her casket as we said goodbye.
We think she is out there somewhere in a special place, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things – just as she used to do.
We will never forget her.
Clare Fooks and Jacky Atkins
Brain tumours 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.
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