My story and the people I have met along the way
My name is Hannah Louise Jones. I started raising money for the Samantha Dickson Brain Tumour Trust after being diagnosed with a brain tumour at 15. I want to share my experience which I hope may help others in difficult times. One thing I have never lost is my sense of humour or personality.
History
I was just like any other ordinary teenage girl, with many hobbies like piano, kungfu, gymnastics and skiing. 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 I had a sleep deprived EEG and a brain scan just to eliminate the small possibility of a brain tumour. The doctor however didn’t think anything would show up on the brain scan, it was just to be extra safe.
Much 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 and three days my scan I had my first operation. At first I was so shocked and upset, why me? But at least there were treatment options for me.
My first operation lasted 8hours, the surgeon at the hospital only managed to remove 5cm of tumour as he said he wasn’t confident to remove anymore as it was near my optic 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 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 or the other option was to monitor it and see how it goes. I chose to have the operation. I had my 2nd operation, everything went well and the surgeon managed to remove all visible brain tumour. I recovered well and came home after four days. I was just relieved everything had gone as predicted.
I was at home recovering from my 2nd operation; I started to leak brain fluid, so back to the hospital I went. I was put on a back drain to lower my pressures around my brain, until the leak sealed. In hospital I was given the results from the tumour removed at the second operation and it was cancer! They called it a anaplastic astrocytoma[ grade 3]. Without my friends, family and 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 love my life and everyone in it. I had 6 weeks of radiotherapy and six cycles of the chemotherapy Temozolomide. I didn’t really have much of a choice, but that’s the way it goes. This is me before my chemotherapy.
February 2009 I went back into hospital as the tumour had reoccurred for a third time. 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 or feed myself 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. 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 (PCV without the V) for 6 cycles until October 2009. At this time it took my bone marrow a long time to recover and I had to have several platelet transfusions, I spent a lot of time in my bedroom, and hardly got out of the house.
Now for the fund raising, awareness raising, and times 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, and we believe that fighting brain tumours should be locally, nationally, and also at a Government level, so why not lobby your MP and keep this high profile. Unless your MP is reminded to pressure the Minster for Health, little will be done to encourage Governments to fund research into Brain Tumours, perhaps one day as much as other cancers are. There is a Minister responsible for cancer services at the Department of Health (2012) Mr Paul Burstow, your local MP can write to him for the best effect. The more who lobby, the more chance for change.
2008
In November I went to see beyond the barricades at North Wales theatre and raise £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, and we keep in touch with them.
A coffee morning at a village near my nana raised £3433 with many events in the community centre. The whole village turned out to support me and many people were overwhelmed, it was the most people who have been in the community centre before in a small Welsh village, the spirit was outstanding within the hall.
Just before Christmas 2008 my close family members took to the streets of Liverpool to run the Liverpool Santa dash all dressed as Santa’s as me and my cousin collected amongst the crowds. All together raising above £1000.
I am also very grateful to the trust for organizing for me to meet Mcfly before their gig, it was such a surprise and they were all gorgeous and I was quiet for once. Stunned!
Fundraising from 2009
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 had raised £ 61,917 and we’ve already started to spend the funds on research projects into high grade brain tumours and below the journey continue
I have met some fantastic stars and celebrities like Ollie who wore one of the hoodies.
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 and he makes no profit either.
I have sold hundreds of hoodies at my school and in my area. They have the SDBTT logo and” Support Hannah Banana (my nickname). 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. Just goes to show, not all who wear hoodies are bad!
We sell them for £20 each (plus 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
People at M&S Money have also been working incredibly hard to raise Money and monies have been price matched by HSBC charity scheme. A whole department is sponsoring the charity by doing various fund-raising 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. Bag packing is very hard work, and we believe everyone should try it at least once, and you learn so much about people.
A big golfing event with Dennis Taylor as an after dinner speaker, that raised funds for SDBTT and two other children’s charities and loads of staff at M&S Money have bought hoodies too! and raised over £10,000.00 alone on this one event.
On 3rd April 2009 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. Eleanor played the harp and 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 £1700 which is fantastic.
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!
In 2009 we have had collections at Co-op, Asda, Sainsbury’s and even at Bangor on Dee races. I never cease to be amazed by people’s co-operation and generosity, in time, personality, and money.
In 2009 Matt Burton did a Marathon and raised £650, and Matt continues to support us in many ways.
Local Hero Child of Courage
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), Kimberley [girls aloud], but the best was meeting Alexandra Burke and receiving my award from her.
Christmas 2009 with another successful Cymau Community Centre Christmas event, with the angelic voices of Hannah [another one] and Ffion [over £4000]. I am sure that you have gathered by now there are too many fundraising events to list them all, but you know who you all are.
Tony Mayled ran that London Marathon in 2009, followed by my dads friend Dr Jeremy Brown in 2011 again over £1,000
2010 winter on one of the Peaks
Three peaks challenge, highest peaks of Scotland/ England/and Wales in 24hrs arranged and completed by the Kell family and friends raising thousands of pounds, a father and son led team, Mike to the left of the flag and Will high above.
Speaking at Houses of Parliament with SDBTT
In 2010 I was at the House of Commons to launch the manifesto and speak at the launch to all present to give my account of life with a brain tumour. My oncologist was also there, and my family. This is also when I continued to lobby my local MP, and continue to do so.
Luke Tillen has done so many sponsored 10k runs and raised well over 10 k as well for SDBTT, he also founded the THHN that my family and I have had a wonderful time at in Torquay, both Luke and his lovely family are now close friends of ours. Luke is also very modest.
We have the continued support of Marks and Spencer’s money, and future events being planned.
We are also Sainsburys of Chester Charity of the year 2011, and the target for the store is £ 20,000, which would be a fantastic amount of money and completed four days of bag packing in August 2011, thanks to my school friends at Christleton High school. On the bank holiday weekend, with friends and school friends bag packing raised £3,600 and all who gave up there time.
So far Sainsbury’s have helped us raised £7,000 thanks to a variety of activities including a tombola, bag packing, balloon race, hoody sales and a barbeque at the Rake and Pikel.
They still have many more events planned which include:
Pub Quiz Night at the Cherry Orchard (10th November)
Football Match – Hoole Park (30th October)
John Downham – 26 day Pacific-Atlantic Cycling Tour coast to coast USA
Fashion Show – Feb 2012
Bangor on Dee races have supported SDBTT on ladies day, and this year we held a bucket collection at the end of the day reaching £1,900 in a couple of hours.
WellChild awards in 2011
I was nominated by my Friend and THHN founder Luke Tillen, and have met with Prince Harry at London for the bravest 16 plus female award. Prince Harry is the patron and he was lovely to me (in white), my sister and Luke.
August 2011 and some hope
I have seen 4 scans pass with no tumour progression and I am making the most of every 4 months, but I hope I have along way to go yet. This has shocked my oncologist in a nice way, and in August I got my A level results, A* health and social care (double award) and B in Psychology, again shocking my Oncologist, and I am going to University to be a primary school teacher.
I’ve just had my latest scan (November 2011) and the great news was that it was clear. I have been more fortunate than many friends I have met on my journey. I have met some amazing and very brave people who have been affected by this disease, and very sadly Annie and Christie both died from a cancerous brain tumour in 2010. I plan to continue my fund raising 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 how being positive can really help you to progress in life, never give in!
Finally, thanks to all my friends who give up their time and their parents to raise funds and support event, it is a team effort, and to all those who donate and share their stories. Finally, no matter what the amount or support you give, it All helps and is worth it for those in the future. As to what the future holds for my family and I, who knows, we go day by day and make the most of each one. There are many other events and people not named, far too many to mention on one web page.
Hear more from Hannah and her family about their story as they star in SDBTT’s latest film
If you wish to donate online please visit SDBTT – Hannah Louise Jones Fund