“This should never have been part of Ramona’s life” says her mum Vicky.
“She should have been focussing on the usual priorities of a nine-year-old girl – going to school, reading the stack of books in her bedroom, cuddling our pet cats, Norman and Clawdia, and rehearsing for her role as Rafiki in the school production of The Lion King”.
It started in February 2021 when Ramona was at home having attended school part-time during lockdown as her parents Vicky and Mark were both key workers.
Vicky said: “Ramona was sick most mornings, we thought it was just a stomach bug. Then she was being sick every fortnight, then every week and then a few times a week. She missed lots of school because, every time she was sick, they wouldn’t let her attend for 48 hours. Ramona enjoys school so this made her really sad. She loves learning but, as an only child, school was also her time for socialisation.”
The family did not know that this sickness was a classic symptom of a brain tumour. Vicky said: “Why would we? I had only heard about brain tumours affecting adults – we didn’t know then that they are the number one cancer killer amongst children and adults under 40-years-old”.
Visits to the GP
Ramona visited the GP on a number of occasions. They asked all the usual questions about Ramona’s appetite, hydration and temperature. Vicky said: “Each episode of sickness was treated separately. No one seemed to link up the multiple times the same thing had happened to our girl. Tests for everything from a bacterial infection to giardiasis revealed nothing.”
The COVID-19 pandemic meant that most of the Ramona’s appointments were over the phone. She only saw a GP face-to-face once.
In the end, the family took Ramona to A&E when the sickness continued. And on 10th May 2021, 12 hours after they arrived at the paediatric A&E at Stepping Hill Hospital in Stockport, Ramona was diagnosed with a brain tumour.
Vicky said: “It is both deeply worrying and frustrating that we had to battle so much to get a face-to-face appointment for a young child with persistent problems.
“We were then blue-lighted to the Royal Manchester Children’s Hospital and I have never been so scared in all of my life. I felt like I was in a horrific dream. I was alone with Ramona – Covid meant that Mark hadn’t been able to come with us. And I had to call him to tell him the awful news. It was the worst phone call that I have ever had to make. We were both, of course, devastated.”
“I couldn’t be more proud of our amazing daughter”
Ramona had surgery four days later to remove the tumour which was soon confirmed to be a pilocytic astrocytoma. The operation took nine hours – an hour for every year of Ramona’s life.
The surgeons managed to remove all of the tumour and Ramona didn’t need any further treatment.
Vicky said: “She has been nothing short of legendary in her recovery. I couldn’t be more proud of our amazing daughter. She has some numbness in her legs, which has been put down to nerve damage. She also has some weakness in her right hand which we’re getting help with as well.”
Vicky and her family found the lack of support following Ramona’s treatment difficult as the pandemic meant that all support was over the phone. That is when they found us.
“I found out about The Brain Tumour Charity’s Headsmart campaign…”
Vicky said: “That’s how we found out more about The Brain Tumour Charity. I searched online as soon as we were back home in the hope of finding information which wasn’t bogged down in medical jargon. I wanted to find other families who would know, through their own experience, what we were going through too.
“Doctors really need to listen to parents – we know what we’re talking about. I found out about The Brain Tumour Charity’s Headsmart campaign after searching online before we took Ramona to A&E on that difficult day of her diagnosis. At the time, I had quietened my gut feeling because we had been told that Ramona didn’t need urgent help.
“Headsmart has a simple message to speed up diagnosis through greater awareness of the signs and symptoms of brain tumours in children and young adults. So, we’re obviously not alone in having to wait months rather than weeks for the right care. Maybe if there was more awareness, even within the medical community, I wouldn’t have had to fight so hard just to get an accurate diagnosis.
“I am sharing our story in the hope that it might give another family the confidence to trust their instincts and push for more. But, now, it’s time to heal. What matters now is how well you walk through the fire. We will be OK.”
Ramona now enjoying school and surrounded by strong friends who have helped her every step of the way.
Her mum said: “She’s just been so brave – not the big showy bravery but the quiet refusal to do anything at anyone else’s pace but her own. She just wants her normal back – don’t worry, my darling, it is coming.”