Brain Tumours & Brain Cancer Charity – Samantha Dickson Brain Tumour Trust

To donate online to Hannah’s Fund, please click here. 

My name is Hannah Louise Jones and I was born on the 21.07.93, which makes me 16. I have been raising money for Samantha Dickson Brain Tumour Trust for some time now. I want to share my experience and help others to be supported in difficult times. 

I was just like any other ordinary teenage girl, with many hobbies like piano, kungfu, gymnastics and skiing. I love my life and everyone in it. I started having small epileptic pauses which became worse in April 2008. I eventually got medication and it all settled down; I thought it was great, being back to normality. However, the fits increased and the doctor requested that I had a sleep-deprived EEG and a brain scan just to eliminate the small possibility of my pauses being caused by a brain tumour. The doctor didn’t think anything would show up on the brain scan however; it was just to be extra safe. 

In the summer holidays of 2008, reality set in: on Friday the 8th of August to everyone’s shock and disbelief, I was told I had a brain tumour in my right temporal lobe and I should go into hospital on Sunday ready for an operation. At first I was so shocked and upset - why me? On the Sunday morning I insisted on working at the weekend job I had in a hotel before I went into hospital. Sunday came around very quickly and, before I knew it, I had everything set up and ready for my operation that Tuesday. 

My first operation lasted 8 hours; the surgeon at the hospital only managed to remove 5cm of tumour as he said he wasn’t confident to remove any more as it was near my optical nerve and may have damaged my vision. It only took me 3 days to recover from this operation. I then went home. 

We had to go back in on the 19th of August for the results, to find that my tumour wasn’t cancerous! I was given the choice by a different surgeon who thought he could remove the rest of my tumour: either he could operate or the other option was to monitor it and see how it goes. I chose to have the operation. 

So, on the 28th of August I had my 2nd operation. Everything went well and the surgeon managed to get my entire brain tumour out. I recovered well and came home after four days. I was just relieved everything had gone as perfectly as can be. 

I was at home recovering from my 2nd operation, still with my stitches in, when on the 4th of September I started to leak brain fluid; so back to the hospital I went. I was put onto a back drain, meaning I had to wait until the leak sealed. 

On the 15th of September, while still in hospital, I was given the results from the tumour removed at the second operation and it was cancer! They called it a Grade 3 Anaplastic Astrocytoma. I kept strong and took the news in my stride. Without my friends, family and the amazing staff at the hospital, I don’t think I would be so positive, but I am very grateful that I have all of these networks. 

I started my chemo- and radiotherapy on Monday the 29th of September; I had 6 weeks of radiotherapy and six cycles of the chemotherapy drug Temozolomide. I didn’t really have much of a choice, but that’s the way it goes. 

On the 4th February 2009 I went back into hospital as the tumour had recurred.  They were successful in removing tumour from an artery in my brain and inserting Gliadel Wafers into the site, but it didn’t go as well as the last time as I had a stroke following surgery.  I couldn’t walk at first but am now recovering well with a small left-sided weakness.  All the staff at Alder Hey Children’s Hospital were brilliant again. There are so many lovely staff and they are all so fantastic, they make being poorly easier!  Mr Mallucci and Dr Pizer are really amazing, so amazing!  I told mum I was actually looking forward to going back into hospital to see all the staff. After the third operation, they changed the chemotherapy and I had that until October 2009. At this time it took my bone marrow a long time to recover and I had to have several platelet transfusions. 

 Now I have MRI scans every 3-4 months and we enjoy the times in between. 

 This is a picture of me and my sister Molly – showing you can still have fun even when you’re on chemo!  I’ve also got lots of photos of happy holidays we’ve been having in between treatments. 

Petition

My family and I started a 10 Downing street e- petition as we believe this disease has to take a higher profile. The petition has now closed and we had over 4,000 signatures. 

Fundraising

I want to raise lots of money and awareness of my Umbrella Fund because brain cancer is so rare and has so little funding. It is easy for people to say it gets little funds; however, action has to be taken quickly if we are EVER to overcome this terrible disease. 

Thank you to everyone who has helped, donated and supported me.  With your help we can get one step further in the research for a cure for this horrible disease. 

It’s unbelievable how kind people are: friends, family and strangers are continuing to donate money – thank you so much, you’re all so kind. 

As at March 2010 we have raised £61,917!!!!! And we’ve already started to spend the funds on research projects into high grade brain tumours. 

If you wish to donate online please visit SDBTT – Hannah Louise Jones Fund  

2008

In November 2008, I went to see ‘Beyond the Barricades’ at North Wales Theatre and raised £384.40 through a collection made at the end of the performance. 

The cast of this production also donated £150 from their company; they came out at the end to meet us and were all very lovely and supportive to my fundraising. We keep in touch with them. 

A social evening at my friend Katie’s house with a raffle raised £512 including a £150 cheque donated by Saleeb.

A coffee morning at a village near my Nana raised £3,433 with many events in the community centre. The whole village turned out to support me and many people were overwhelmed; more people were at the community centre than ever before in the small Welsh village. The spirit was outstanding within the hall. 

Just before Christmas, my close family members took to the streets of Liverpool to run the Liverpool Santa Dash all dressed as Santas while my cousin and I collected amongst the crowds. Altogether, we raised above £1,000. 

My previous primary school had a retiring collection at their Christmas event, raising £410.24. 

2009

 I have met some fantastic stars and celebrities like Ollie who wore one of the hoodies and he now has an SDBTT pin on his hat.  

I have also met some amazingly brave people who have been affected by this disease, like Annie Kell, Christie Butler and Kev Taylor. They too are fundraising. Kev Taylor has created a website so that he can keep people updated on his and others’ stories. Thanks Kev! You can visit: http://www.hannahbananabraintumour.co.uk/

I’d like to say a big thank you to Dan Allera of Allera Clothing Printers, for providing us with hundreds of hoodies – and on a quick turnaround too.  They’re brilliant for raising money and awareness. 

I have sold hundreds of hoodies at my school and in my area.  They have the  ‘Head to Head’ logo of Samantha Dickson Brain Tumour Trust on the front, with “Support Hannah Banana” and “Support Brain Tumour Research” above and below the heads.  We sell them for £20 each (plus the small cost of postage) and they are made to order.  Adult sizes are: S, M, L, XL and XXL and they’re available in most colours.  If you would like to purchase a Hannah Banana Hoody, please contact my Auntie Jan at: sdbtt.hannahbanana@googlemail.com. You see lots of people wearing them in and around Chester and many more people want them!  My oldest hoody wearer is over 80 and the youngest is 9 months old.  It just goes to show, not all people who wear hoodies are bad! I started the hoody idea and it snowballed from there. 

My friend Annie Kell sells them too; she’s got her own name on them as people she knows obviously want to buy hoodies with her name on in order to support her. She has sold loads too! Thanks Annie. Annie also had a fantastic party in January and made over £1,300 for SDBTT. 

You can see some pictures of the hoodies at Kev’s site: http://www.hannahbananahoodies.co.uk/ 

  

Huge thank you to:  

The Ship Inn  in Handbridge. They did a raft race on the River Dee on 12th July 2009. They have also held quizzes and collections and have raised in excess of £1,000. 

Auntie Sue’s belly dancing teacher, Emma Wheate, held a Hafla near where my auntie lives in Redditch.  They held a raffle and auctioned some champagne.  The event raised a fantastic £642 and at the end of the night I got to join in with some belly dancing too!     

On May the 17th 2009 Emma and Kay ran 10k at the BUPA Great Manchester Run; Emma has only just had a baby so I think she was very brave taking on this challenge. 

People at M&S Money have also been working incredibly hard to raise funds.  Kelly and Jeff have both run half marathons, raising £1,000, which will be matched by HSBC’s charity scheme.  A whole department is sponsoring the charity by doing various fundraising activities throughout the year.  Here are a few of the fantastic and enjoyable events: selling muffins, sponsored runs and walks, and even bag-packing at Sainsbury’s in Chester. 

A big golfing event with Dennis Taylor as an after dinner speaker raised funds for SDBTT and two other children’s charities. Loads of staff at M&S Money have bought hoodies too(!) and raised well over ten thousand pounds. 

In 2009, Castell Alun School’s year 10 students held fundraising events and raised a fantastic £182.30. 

The Kimnel Hotel in Llandudno has raised over £500 doing bingo and a silent auction.  They have plans for further fundraising too, with a collection tin at reception also. 

On the 3rd April 2009 my Nain arranged a choir concert at Cymau. It was held in the Bethesda Chapel; the Cymau Male voice choir were brilliant. Again, the whole village seemed to turn out; I am so grateful. It was wonderful.  Local musicians also played instruments and sang.  My friend Sian sang a special song for me which was ‘Hero’; she was so brave to get up and sing in front of everyone. Eleanor played the harp, Julia played the saxophone which was very jazzy and my sister Molly played a tango on her violin. I was so proud of her. The evening made over £1,700, which is fantastic. 

On the 17th March 2009 I attended a fundraising event at the Joya night club in St Annes which raised £768. This was organised by Diana &; Mick Woods. It was amazing.  There were fantastic singers: Loose Ends (a group), Jenny Ball, Michael James & Jodie. Fundraising can be such fun as well.

The staff at Jewson’s at St Anne’s Blackpool have raised £500 from fundraising events: a swear box, non work uniform day, etc. Staff were even ‘fined’ for not making a cup of tea and had to donate money to the cause. It’s fab!! 
 

 

 
In February 2009, a charity Sportsman’s Evening was held at Aldo’s Bar in Liverpool. This function was organised by my Uncle Nigel and his friend, Mick. 

Ex- Liverpool player John Aldridge was a very entertaining speaker (if you are over 18, Dad said!). There were some fabulous prizes such as signed photos and shirts from Steven Gerrard and Fernando Torres, a signed Everton football and loads of other prizes. 

The weather was terrible that night (with snow blizzards) but I attended the beginning of the event with my Mum, Dad and sister, Molly, as I wanted to inform people about this disease and thank them for supporting brain tumour research. We got some funny looks as we three ‘girls’ walked in.  I think they thought we were the entertainment. We left before the entertainment started but judging by my Dad’s photos it looks as though everyone had a good laugh with the comedian, Willie Miller. The event raised over £3,000, which is amazing. Big thanks to John Aldridge and Willie Miller who gave their time and full support at no charge. 

AFC Waverton Under 9 Jets have been amazingly supportive.  Their Under 8’s team and all their dads have bought hoodies and when the Under 9’s Jets team won their league they were presented with “Hannah’s Cup.” I was so pleased – I’m their number one fan – they’re brilliant!  Here’s a photo of the team in their black hoodies…… 

On 15th January 2009, £300 was donated by the Women’s Guild, who had held a charity lunch at Leeswood Flintshire; a further cheque for £250 was also donated. 

Over £150 was raised by Edge Hill University with a Christmas card collection organised by Mike Reynolds.  Thank you; better than sending cards! 

My Auntie Sue and her friends Anne and Linda raised £107 with a Bring & Buy and Tombola, at the Redditch Childminders’ AGM.  They also raised a further £50 from a car boot sale. 

My friends, the Mellor family, raised £40 selling cakes during the interval of The Steels (a Chesterfest event.) 

A pub in Mancot raised £60 with a quiz night. 

In 2009, Acre Hall Primary School in Flixton, Manchester, did a ‘Wake & Shake’ event which raised £135. This was organised by Hannah Kissell. 

In 2009, we had collections at Co-op, Asda, Sainsbury’s and even at Bangor on Dee races, and this was arranged by my Nain. I never cease to be amazed by people’s co-operation and generosity: in time, personality and money. 

In 2009, Ewan raised £30 selling cakes on a stall

Caergwrle Garage collected £52 from customers

Barrow Boys Pub whip round raised £35

A school sponsored event at my auntie’s school raised £300

In 2009, Matt Burton ran a Marathon and raised £650

In 2009, Hey House C of E Nursery School raised £225

In 2009, Annie Kell raised £41 from a ‘guess the name of the dog’. It was a real dog!! 

Christmas 2009 saw another successful Cymau Community Centre Christmas event, with live entertainment and Eisteddfod performers (raising over £4,000). I am sure that you have gathered by now that there are too many fundraising events to list them all, but you know who you all are. 

Tony Mayled ran that London Marathon in under 4 and half hours and raised over £1,200: what a feat! 

Local Hero Award – Child of Courage and BBC Switch Teen Hero Award

I was presented with a local hero award – Dee 106.3’s ‘Child of Courage’ in July 2009. 

I also was presented with the BBC Switch ‘Teen Hero’ award in London in 2009 and it was an amazing event that will never be beaten. I had to go on stage with thousands screaming at me I was so nervous. I met and posed with N-Dubz, JLS, Fearne Cotton, Peter Andre (yes, he really is that nice!) and Kimberley [Girls Aloud], but the best was meeting Alexandra Burke and receiving my award from her; she was beautiful on the outside and she was lovely with me. 

I plan to continue my fundraising for the Trust and spread much more awareness about brain tumours. I hope that my story has given more people a positive view about the situation and also shown how being positive can really help you to progress in life. Never give in! 

Also, it is so important to have fun and enjoy your fundraising activities – why not try a few of the ones we have had fun with? Every little amount is worth it, from a few pounds to thousands. It all adds up. 

April 2010 has seen 3 clear scans so far, but I hope I have a long way to go yet. 

Our thoughts are with Christie and Annie and family at this time. 

Planned Events for 2010

• Three Peaks Challenge in June: the tallest peaks in Scotland, England and Wales in 24 hours;
• Fiona Rackham running;
• Luke Tillen in the Great Manchester 10k Run;
• Trevor doing the Iron Man Challenge and also Hurlston Hall Ball with Debbie Wright;
• Bag packing events.

If you would like to contrubute to Hannah’s Fund, please donate online here.