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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Darcyana Aspery-Walsh – In Hope

Darcyana Aspery-WalshDarcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. Despite months of morning vomiting, right-sided weakness and balance issues, her parents felt they were fobbed off with unconvincing diagnoses and made to feel like they were being over-protective. Here Darcyana’s mother, Debbie, tells her story…

“My mission now is to raise awareness of brain tumours and their symptoms. 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. Sometimes you just have to keep knocking on the door until someone finally listens. Thank God someone did listen… just in time. We came so close to losing Darcyana.”

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.

On the 26th March, we needed medical help again. I telephoned the GP as Darcyana had started vomiting between 5am and 8am every couple of days and I was worried she had some form of stomach bug. I was advised to hydrate her with dioralyte. 48 hours later, with Darcy still no better, I booked her an appointment with a nurse as there were no GP appointments available. She was now vomiting daily at regular times and seemed even more miserable than usual. All the while she continued to walk in the same strange manner and had her right hand in a tight fist.

The morning we saw the nurse, Darcyana had vomited three times. Having examined her, the nurse noted that Darcy’s ears were red and inflamed, although her temperature was normal. She sent us away with a prescription for amoxicillin for the apparent ear infection and an instruction to give her paracetamol for the pain and to continue with the dioralyte.

Darcy seemed to improve (although the morning vomiting continued), but I booked an appointment to see the GP as I had still not heard anything about the referral to see a paediatric neurologist. It turned out that the GP hadn’t been contacted so he told us he would get in touch with the hospital right away. We were to return home and wait for a letter.

So, more waiting. Meanwhile, we remained increasingly anxious about our precious daughter, who continued to walk in her strange way, falling over and banging into things, not using her right hand while no longer having her sunny disposition.

Five days later, we again booked an appointment and again had to see the nurse practitioner because there was no GP available. Darcyana had been unwell with a temperature of over 37 degrees for three days and although she hadn’t vomited the previous day, she was off her food. This time the nurse found that Darcy’s right ear was inflamed, her throat was red, her tonsils were enlarged and she had a blanching rash on her back. We were sent home to get a urine sample which we successfully obtained within five minutes, so we quickly returned to the surgery. The results of the sample showed no abnormality so we were prescribed more amoxicillin and paracetamol.

Finally, we received an appointment letter to see a neurologist. We would have been relieved, but for the fact that 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? Darcyana’s balance was deteriorating and she had no grip in her right hand. She wasn’t the same happy, cheeky girl she had been just a few months earlier and I really felt she was depressed. 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!

Just 30 minutes after Darcy had been scanned 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. Our poor baby had suffered for so long – five months had passed from when I first voiced my concerns and during those long months we had made numerous trips to the GP surgery and hospitals trying to get someone to listen.

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 and as it was in the midline it was blocking the flow and also pressing on nerves, causing the weakness in her right side. They asked me whether Darcyana had been complaining of headaches. The answer was no. Darcy was only a toddler and didn’t know how to explain how she had been feeling all this time! 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. I had had to fight all the way to get the medics to take all her symptoms into account and then to take them seriously. If she hadn’t ended up with an MRI scan on the day she did, in all likelihood we wouldn’t have got Darcy the surgery she so desperately needed in time.

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, but basically she was going to be fine. 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 big 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. She is now about halfway through and doing well, although we had a hic-cup recently when it seemed she had developed an allergic reaction to the chemo.

In front of Darcyana, I try to stay strong and positive. I think I have done a pretty good job as she has no qualms about going to hospital and loves the fuss that the doctors and nurses make of her, as well as time spent with the other sick children.

When it comes to her regular MRI scans, however, I have to leave Gareth to take Darcy as I can’t bear to see her knocked out.

We have been living through every parent’s worst nightmare, but we have been comforted hugely by our local community, who have been so supportive – if we go to the shops, everyone wants an update on how Darcyana is doing and they have even helped us raise money for toys for the playroom on the ward that cared for Darcyana.

My mission now is to raise awareness of brain tumours and their symptoms. 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. Sometimes you just have to keep knocking on the door until someone finally listens. Thank God someone did listen… just in time. We came so close to losing Darcyana.

Debbie Aspery – February 2016

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