Most people refer to their grandmother as gran, nana or grandma. But when Fifi was growing up she thought grandma sounded like Jam Jar and from then on this is what Fifi's grandmother has been known as.
Fifi, her mother Mya and Jam Jar have been huge supporters of BTRS over the years and with such an amazing nickname, who better to be the faces of our 2015 'Change for the better' Jam Jar campaign?!
In the Easter of 2005, when Fifi was just three years old she was diagnosed with a very rare and very aggressive brain tumour and because of this they hadn't really successfully treated any other children in the UK. This meant the protocol for treatment had to come from the U.S. Due to the greater population over there, they had managed to identify a protocol that seemed to be working.
All of Fifi's treatment took place in the UK, following the protocol relayed from doctors in the U.S. This is amazing when you think about it, that we have such incredible medicine over here, but they will still go that extra mile for children like Fifi, as the initial prognosis wasn’t great.
Fif’s treatment was focussed on the most important thing, which was to achieve a total resection. This meant she had to undergo 9 hours of Neuro Surgery, followed pretty much straight away by chemotherapy. She had a very high dose chemo, which lasted for pretty much the whole of 2005. I think it would be fair to say she spent the whole of 2005 in hospital. It was a harsh course of treatment, but Fifi’s cancer was aggressive, so we had to fight fire with fire. In-between that she had radiotherapy to the full head and spine every day under general anaesthetic, this was for six weeks with the weekend off. However she was absolutely amazing throughout the whole the thing.
When was Fifi first diagnosed and how old was she?
That was the Easter of 2005 and she was 3. Because Fifi’s cancer was very rare and very aggressive,
What kind of impact did that have on Fifi at the time?
At that point, because she was so young, she really just looked to me to find out how she would be feeling. So as long as I was upbeat, happy and buoyant about everything then Fifi was the same. The play specialists in hospital were an incredible help too. Even on the days when she was only well enough to just about sit up, they would still bring activities to her bed side and really encourage her with whatever she could do. Fifi actually looks back on hospital with quite fond memories to be honest, which is brilliant. I think its part an age thing, being so young she didn’t know much different. However now she’s not scared at all to go back into hospital or the clinic.
What impact did this have on the rest of the family?
Well I was a single mum at the time and in a way that was a great thing, as I didn’t have to worry about anybody else other than Fifi. I spent every night and day with Fifi in hospital, staying in the same room. The company I worked for at the time were amazing as they paid my salary for the year, which took a huge pressure off. A lot of people going through this have different things to worry about financially but at that point we didn’t, so we were really fortunate. So again from some people’s point of view it can be a real struggle, but it was just Fifi and I against the world and as long as we had each other that was all that mattered.
How did things turn around when Fifi started getting better?
Well she had all her treatment and responded really well to everything. Obviously there are things that happen as knock on effects from the treatment. She lost some of her hearing with the radiotherapy and it’s had some effect on her cognition and learning. However she tries incredibly hard at school and received a lot of support too. There have been a lot of issues, but every time there’s an obstacle there’s always been a solution to overcome it. So as long as there’s an option, we’re happy and will soldier on. Fifi does this in such an amazing way; she’s bright, always bubbly and just so positive. She’s currently doing so well at School, she’s in year 8 and really loves it. Every day she looks forward to school and always tells me about her day, how it’s been fantastic or epic! I know I’m biased but she takes my breath away on a daily basis with how lovely and bubbly she is.
How are you and Fifi involved with BTRS?
We love BTRS, we were actually at Morrisons this weekend shaking tins! Fifi also held a big fundraiser for her Birthday at school this year in aid of BTRS, holding a fashion show with one of the local shops in Howarth. Its little things but it all helps.
How have BTRS supported you and Fifi?
BTRS were the first and only charity apart from Candlelighters that we had any contact with. They’re just amazing, I think the really strong point of BTRS is the people that work there, they’re just wonderful people and so kind. They’re not just a charity that does things like children’s parties, which we do love by the way, but they also raise money for research which is so important. If we ever have any questions, we know we can ask the charity and they’ll point us in the right direction. However it all comes down to the fact that they’re lovely people too. I’ve been lucky enough to have a tour round the lab and see the incredible work they do first hand. The fact that they’re doing such much needed work is fantastic in itself. We love BTRS, they’ve been brilliant for us.
Could you explain how Fifi’s Grandma gained the name Jam Jar?
So this is a weird one, but Jam Jar sounds like Grandma and when Fifi was younger she would call her Grandma, Jam Jar. From that it just stuck and now everybody calls her Jam Jar! The children on her street call her Jam Jar and even when we go to parties everybody knows her as Jam Jar. Grandma loves it though; she’s absolutely fine with it.