In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”
Here Darcyana’s mother, Debbie, tells her story…
Darcyana was born on the 13th July, 2013. That moment life changed for ever for her Dad, Gareth, and me. She was absolutely perfect with the most beautiful blue eyes – all 7lb 6oz of her.
We were blissfully happy – Darcyana was reaching her key stages of development, often ahead of time – she crawled at eight months and started walking at 11 months.
Then suddenly in early December 2014, Darcyana couldn’t get herself up off the floor. We took her to A&E at James Cook University Hospital in Middlesbrough where we were told she had a greenstick fracture in her wrist from falling over and landing awkwardly. She had a cast put on which was removed a few days before Christmas.
A few days later, Darcy woke up feeling poorly, with a temperature. She had flu-like symptoms for several days.
In early January 2015, we became very concerned when we noticed that Darcyana’s right foot was inverting and that she was toe walking. This was causing her to fall over frequently and bang into things. She had also stopped using her right hand (the one she had fractured) and didn’t seem her normal happy self. We asked to be seen at the fracture clinic again and they reassured us that her wrist had healed, but referred us to the orthopaedic department at James Cook University Hospital (JCUH) in Middlesbrough.
Darcy’s appointment was in March and we were told that her bones were fine, but that we should see our GP to be referred to a neurologist.
Over the course of the next few months, Darcyana started first vomiting early in the morning every couple of days, progressing to vomiting daily, often more than once. She was even more miserable. We took her several times to the GP surgery, where we twice ended up seeing a nurse as there was no doctor available. She was diagnosed with an ear infection twice and given antibiotics each time.
We still hadn’t received an appointment to see a neurologist, so more waiting. Meanwhile, we remained increasingly anxious about our precious daughter, who obviously wasn’t her normal happy self and continued to walk in her strange way, falling over and banging into things, while not using her right hand.
Finally, we received an appointment letter but it was more than 13 weeks away – 96 days! I was so angry. I had the feeling that everybody thought I was being an over-protective mother. Why could nobody see my baby needed help? It was such a nightmare!
During early April, Darcy was poorly with a high temperature, sickness and seemed very weak. We were given a variety of reasons for this, ranging from an ear infection to a virus. Darcy continued to vomit in the mornings but was ok in the afternoon. However, by 18th April, when by now she was vomiting all day, the GP decided to send us to the paediatric assessment unit at JCUH. We were hopeful that someone would take her symptoms seriously, but all that happened was that Darcyana was rehydrated and sent home with a diagnosis of gastroenteritis.
Darcyana improved slightly, but by 1st May she had lost the ability to walk unaided. It was so frightening. We took her straight to A&E where despite everything I told them, they insisted that she had sprained her leg! Of course, I was nowhere near convinced and went straight to the GP to demand a more urgent referral to the neurology department.
At home, I started googling Darcyana’s symptoms which came back with either a form of cerebral palsy or a brain tumour. I was convinced it was cerebral palsy, but how was I going to get anyone to take Darcyana’s condition seriously. No one was listening to me?
The following day, Darcy couldn’t stand and was vomiting a lot. She had a temperature again so back I went to the GP. I repeated all my concerns for the umpteenth time and on this occasion, suspecting she had sceptic arthritis in her hip, the GP sent us back to paediatrics at JCUH. At the hospital, I immediately expressed my fears that she might have cerebral palsy and they arranged for Darcy to have an MRI scan a few days later on 7th May. FINALLY SOMEBODY LISTENED!
Half an hour after the scan, the consultant asked Gareth and me to come to a side room. I knew it was bad news. She told us our beautiful little girl had a four centimetre tumour. I collapsed into tears, thinking about all those months of being ignored. Why? A mother knows when her child is really not well.
We were blue-lighted in an ambulance to the Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle. I was so scared about what would happen. At the hospital, we were told that the tumour was causing fluid to build up in Darcyana’s brain, causing the weakness in her right side. Gareth and I were wracked with guilt, pain and worry.
Meanwhile the medics needed to move fast to save her life.
The very next day, on 8th May, 2015, our poor little daughter was taken to theatre for a five hour resection of the tumour. We were distraught as a family. Everything was happening so fast – it was too horrendous to take in. I really thought Darcy wasn’t going to make it.
Finally, just before 6pm we received a call to go up to the recovery unit. Darcyana, our little fighter, was ok – she had made it through surgery. She was alert and comfortable. We were able to cuddle her and she said: “Car, Mammy, home!”
We had come so close to losing Darcy.
In the paediatric intensive care unit, we noticed her moving and feeling her right hand and arm. Everything was starting to work again! The next evening Darcy was moved to the ward to start her rehabilitation process.
The staff on the ward were fantastic and so reassuring, but it was an agonising wait for the biopsy results. During this time Darcy started to walk again with both feet flat on the floor and was using her right hand. Her speech was clearer too. She seemed to be racing back to full health so quickly.
Five days after her craniotomy, we were told that Darcyana’s tumour was a low grade polycystic astrocytoma. There was a small part of the tumour which the surgeons had not been able to remove and this would be monitored in case it grew back. It was such a relief. The months of pain, anger, worry and unanswered questions started to melt away and on 15th May we were allowed to take Darcy home to continue her recovery.
Just 22 hours later, however, Darcyana had to be readmitted with a staph epidermis infection and was also found to have fluid building again in her brain. Three days later our brave little one was back in theatre for an external ventricular drain to be inserted. The next day, because it had got blocked, Darcy had to have another one fitted. On 28th May we returned home again, after the drain had been removed.
Six hours later, however, we were back yet again in Newcastle. Darcyana had cerebrospinal fluid (CSF) leaking from one of her wounds. She underwent another operation to have a lumbar drain inserted which made her very unwell. Basically, it caused an imbalance of pressure, with it being low in her lumbar region and high in her head, resulting in her brain being pushed down.
The following day, Darcy was rushed to theatre – her fifth operation – for an urgent subdural drain to remove the fluid from her brain and to help rebalance the pressure. We thought we were going to lose her all over again, but within 24 hours she was looking great and seemed to be so much better.
However, it now seemed that Darcyana had become drain dependant. Every time her drain was turned off she became symptomatic. Darcy now had developed hydrocephalus so the neurology team decided she needed a further operation to fit a ventriculoperitoneal (VP) shunt. This happened exactly one month after her first operation involving resection of the tumour.
Again Darcy bounced back and on 12th June we were discharged again. It seemed that five weeks of agony was over. The neuro team were confident that in a few months she wouldn’t need the VP shunt anymore. We settled down to enjoy life as a little family again. But our rollercoaster ride wasn’t over…
Soon after Darcyana’s second birthday in July, I noticed Darcyana’s mobility had decreased.
On 24th August, we went for a routine MRI, only to learn that Darcyana’s tumour had started to regrow. It sent us reeling again – we had thought that apart from regular scans we had seen the end of trips back and forth to hospital.
In September and still just two years and two months old, Darcy started a year of chemotherapy which fortunately she coped with pretty well.
However, in December, less than a year after Darcy was diagnosed with a brain tumour, I found a lump in my breast. I underwent tests which showed it was just dense tissue. I continued to decline and the lump grew bigger, but I just kept getting told I was fine. I suffered severe breathlessness, hip pain and had low blood platelets for five months.
In April 2016, I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice. I was in so much shock, the first thing I said was that I wanted to go home and watch Emmerdale with Darcyana.
All I kept thinking was that I had my little girl to look after. I don’t have time to be poorly.
Every bit of energy I have goes on caring for Darcyana. I already know everything there is to know about cancer because of what she has been through, so I think that softened the blow for me.
I began chemotherapy alongside Darcyana – her on Fridays and me on Mondays.
In September, 2016, just one month before Darcyana completed her chemo, I began hormone therapy to keep the cancer stable. Devastatingly, however, I learnt in December that the cancer had spread to my left lung, pelvic area and ovaries. I started a new treatment, but the tumours kept growing and cancer was also found in my other breast.
It was a lovely surprise to be awarded the Champion Parent award by our regional newspaper, the Teesside Gazette, in December 2016, but even more so that Darcyana was awarded Champion Child of Courage
In June 2017, I was put onto a new daily dose of oral chemotherapy. I also have injections in my stomach to strengthen my weakened bones and I was given an implant also into my stomach to stop my ovaries producing oestrogen and feeding the cancer. Sometimes I feel breathless because of the tumours in my lungs and I have difficulty with my mobility, but I just try and stay positive. My condition has stabilised with the treatment, but there’s never going to be a cure.
In July this year we were away on a caravan holiday, provided by kind-hearted people in our community. Darcyana lost her balance and fell down the stairs out of the van, smashing her collar-bone. Added to this she had started limping again and not using her right hand so it wasn’t a surprise when her scan in September revealed that her tumour had grown a couple of centimetres. She is back on chemotherapy – a weekly injection in her port back at the hospital in Newcastle, where she also receives occupational therapy and has an ECG to make sure her treatment isn’t damaging her heart.
Incredibly, Darcyana is always smiling. We have recently got a puppy – an adorable little Jackahuahua (Jack Russel crossed with Chihuahua) which brings us all a lot of joy and Darcy is looking forward to Christmas. She now understands what Santa is all about and we can’t wait to see her face when she opens her presents.
Gareth has been a rock throughout. He has to do so much for both of us, driving us to and from our hospital appointments, cleaning the house, cooking the tea and bathing Darcyana, but he does it all without ever complaining. He is a life-saver, keeping us going.
Although it is scary knowing my cancer is incurable, our priority is Darcyana. We couldn’t bear it if anything happened to her.
My mission now is to raise awareness of brain tumours and their symptoms, as well as of cancer generally. Mothers know by instinct when their children are seriously ill and we can’t always just accept that the medical profession will come up with the right diagnosis first time, or even the tenth time.
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. At the current rate of spend it could take 100 years to find a cure.
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.