Little Brainstrust

Patient Stories

Poppy's Story

Poppy’s Story
In June 2010 we noticed Poppy, our 4 year old daughter, had developed a slight squint. At the same sort of time Poppy’s pre-school leader began noticing she had become quite clumsy and was sitting on other children; she suspected dyspraxia. We arranged an appointment with our GP who, after examining Poppy, gave her a clean bill of health. We were so relieved.

A couple of weeks later, on the morning of Thursday 15th June, Poppy really struggled to come down the stairs. I really couldn’t believe what I was seeing but after the clean bill of health we were given decided I needed someone else’s opinion. I took her into pre-school and explained what had happened and my concern and asked them to keep a close eye on her and let me know what they thought. I spent the next 2 and a half hours at home worried sick and googling Poppy’s symptoms. I came to the conclusion there was something more sinister going on. I rang Chris at work who reassured me I was just over reacting. When I went to pick Poppy up, pre-school confirmed that Poppy had been extremely clumsy all afternoon and just did not seem herself. They suggested she may be suffering from an ear infection and suggested I took Poppy back to the GP’s.  I took her that afternoon, this time to see a different GP at our practice. She was concerned with Poppy’s gait and referred us into the paediatric department at Macclesfield.

We went straight to the hospital where we were greeted by a registrar, who examined Poppy and seemed more that a little concerned that her pupils were fixed and dilated.  He called in the on call consultant who after examining her again took us to one side and explained there was something causing pressure in Poppy’s eyes. He was more than 50% sure it was a tumour.  We couldn’t believe what we were hearing. We were kept on the ward that night. Poppy slept soundly, Chris and I didn’t sleep at all.

The following day we were booked in for an emergency MRI. Poppy had to be sedated and Chris and I were really scared. Within half an hour the results were in and the devastating news was delivered … Poppy did indeed have a brain tumour. It was described as: “extensive, in an area of the brain that was inoperable, possibly wrapped round her brain stem and there was little hope for her”. We were completely devastated, totally floored and heartbroken.

10 very long days later, in a different hospital in Manchester, Poppy had an ETV (Endoscopic Third Ventriculostomy) to drain and normalise the pressure in her brain, which had caused hydrocephalus. She also underwent another scan, this time a better quality one. With these latest results, the oncologist gave us the unexpected and reassuring news that he thought that actually Poppy’s tumour was in the tectal plate region and was likely to be low grade. We weren’t given much information, but told that if it grows, that’s bad, if doesn’t, that’s good. We were so relieved to hear this news. We were told Poppy had to go for 3 monthly scans. For these, she needed a general anaesthetic and there was a week’s wait each time for the results. Time went on and on and on. Poppy was getting very distressed - she particularly hated the mask she had to wear for the general anaesthetic. We absolutely dreaded these scans.

We were getting more stressed than we could cope with. It was so traumatic we unwittingly missed a scan and Poppy was at 8 months since her last one. We really didn’t know what to do next, or where to turn. We contacted brainstrust in 2012, who suggested we take Poppy up to Alder Hey Children’s hospital to see Mr Connor Malluci. With nothing to lose, we went there for an appointment. We were thrilled to hear Poppy could be scanned and receive the results in the same day, but she had to be awake for the scan. She wouldn’t go in. We went back a week later to try again, and Poppy very bravely went through it.

The consultant was really helpful. Here we were finally given the facts and figures we had been longing for. Poppy had another ETV. And now she doesn’t have to go back for 8 months.

A year since her fist appointment in Alder Hey and Poppy is now living life as a really lovely, lively 7 year old. The last year has been transformative for her; all her confidence has come back and she’s not frightened anymore. She’s a proper little cheeky comic who is always dancing and singing, and very well behaved (when she’s not jumping up and down!). Thanks to Mr Mallucci and brainstrust, our family is now living a relatively normal happy life and are at last beginning to look forward to the future with a much more positive attitude.