The Hannah Louise Jones Fund

Raising funds for The Brain Tumour Charity, inspired by Hannah who is living with a brain tumour.

Hannah's Story

My name is Hannah Louise Jones and I started raising money for The Brain Tumour Charity after being diagnosed with a brain tumour when I was 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.

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 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 after 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 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 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 second operation, everything went well and the surgeon managed to remove all visible brain tumour. I was just relieved everything had gone as predicted.

I was at home recovering from my second operation when 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 an 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 six 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.

In February 2009 I went back into hospital as the tumour had reoccurred for a third time. They were successful in removing a tumour from an artery in my brain and inserting Gliadel Wafers into the site but it didn't go as well as the previous time as I had a stroke following surgery. I had been told before my operation this was very likely.

I couldn't walk or feed myself at first but now I'm 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.. After the third operation they changed the chemotherapy (PCV without the V) for six cycles until October 2009. 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.

August 2012 and some hope...

I have scans every 4-6 months with no tumour progression which shocked my oncologist in a nice way. I am making the most of every four months but I hope I have a long way to go yet. In August 2011 I got my A level results, A* Health and Social Care (double award) and B in Psychology, again shocking my Oncologist, and have got through my first year at University training to be a primary school teacher.

I've just had my latest scan and the great news was that it was good. I have been more fortunate than many friends I have met on my journey, many others have not been so fortunate.

Raising awareness

My family and I got over 4,000 signatures for our e-petition to 10 Downing Street as we believe that fighting brain tumours should have a higher profile and be funded locally, nationally, and at 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.

In 2010 I was at the House of Commons to launch the manifesto with SDBTT and to give my account of life with a brain tumour. My oncologist was there and my family. This is also when I continued to lobby my local MP, and continue to do so.

I have met some amazing and very brave people who have been affected by this disease; very sadly Annie and Christie both died from cancerous brain tumours in 2010.

Some good memories...

Through my three years of treatment I have collected some awards. In 2009 I won the 'BBC Switch Teen hero' award, The 'Well Child' bravest teen female in 2011, 'National Rotarians Young Citizen' 2012, and been nominated for the 'Third Sector 'Volunteer of the Year' award in Sept 2012, won a Diana Award in July 2012,and carried the Olympic torch for all those with Brain Tumours . At every opportunity my family and I speak at events, raise valuable funds and raise the profile of brain tumours detection and improved treatments.

I have also been helped along the way by more fun times, and other organisations. Dame Ellen McArthur and sailing with her in the Round the Island race 2011 was fantastic.

Fundraising

I started fundraising 2 weeks after my second operation, my target was £10,000. I reached that target within a few months, but so many people got involved I couldn't name them all, Marks and Spencer's Money, Sainsbury's Chester, Bangor on Dee race course and the coffee mornings, sponsored events, endless bag packing, bucket collections, has taken the total in 2012 to over £120,000.

Thanks to all my friends and to their parents who give up their time to raise funds and support events - it is a team effort - and to all those who donate and share their stories. No matter what the amount or support you give, it all helps and is worth it for those in the future. There are many other events and people not named, far too many to mention on one web page.

July 2013 (and made it to 20th birthday!)

Bucket collection at the evening meeting of Chester Races on 18th July.

A fab turnout of Hannah's friends and family- we had 24 people in total collecting and with the race goers generosity collected £3208.44!

'Don't stop me now' music gig, held at Alexanders and co-organised with Gaynor Williams and her daughter Lauren who have also been affected by a brain tumour in the family. Taking place on a hot sunny evening, 8 acts gave their time for free including Anna Houghton, Sam Mellor, Kuzo, Mark Pountney, Hank Tilly, Leon Soutgate, Mike McKnight and Kiera. The venue was also free and a big thank you, raising £865.50 and additional matched funding from MBNA.

Upcoming events include the Telfords Warehouse music gig with 'The Loose Kites' on the 10th August, as well as another race course bucket collection at Bangor on Dee races in August. Thanks to the Chester racecourse for choosing the charity.

2011

We were the Chester branch of Sainsburys Charity of the Year and the target for the store was £20,000, which is a fantastic amount of money.

April

London Marathon: my dad's friend Dr Jeremy Brown raised over £1,000

July

Bangor on Dee Ladies' Day supported The Brain Tumour Charity raising £1,900 in a couple of hours with a bucket collection at the end of the day.

Christleton High School friends, students, and teachers were excellent and helped me get through school through all the operations and treatments. My head of year and friends came to visit me on the ward, what a school, I was so lucky to go there. My first idea was selling hoodies and now they are everywhere. They raised awareness and funds for the charity and thanks to Allera printers and my auntie Jan they continue too.

To order a Hannah BT hoody in any size or colour for £20 with discounts for child sizes. Email Hannah's Auntie Jan at

sdbtt.hannahbanana@googlemail.com

They are good quality, warm, and raise funds as well.

If you wish to donate online please visit The Brain Tumour Charity – Hannah Louise Jones Fund justgiving page.

I have been so lucky to meet so many people along the way, and my scans for the past 5 years have been better than I ever could have expected. My next scan is July 2014. My Oncologist and Neuro surgeron have had an article published about me in a neuro-surgical journal. It is only through aggressive surgery, complete visible tumour removal, Gliadel chemotherapy wafers left in my brain during the third operation that I am still here. But that I have to have scans every 12 months and never get the all clear. The highlight of 2013, other than having good scan results, is the photo shoot with Rankin that is on display at the Walker art gallery Liverpool in the 'Alive' exhibition. Rankin is such a kind and down to earth person. The exhibition is well worth a visit, and so many pictures are on display capturing those living in the face of death.

2010

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. The very modest, Luke Tillen has done so many sponsored 10k runs and raised well over £10,000l for The Brain Tumour Charity. Luke founded the THHN and my family and I have had a wonderful time in Torquay. Luke and his lovely family are now close friends of ours.

We have the continued support of M&S Money and future events are planned. So far Sainsbury's have helped us raise £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.

2009

Hoodies - I met some fantastic stars and celebrities like Olly 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 Dan makes no profit either. I've sold hundreds of hoodies at my school and in my area. They have the The Brain Tumour Charity logo and "Support Hannah Banana" (my nickname). You can see lots of people in and around Chester wearing them 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're 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 email my Auntie Jan.

People at M&S Money worked incredibly hard to raise money which was matched pound for pound by HSBC charity scheme. A big golfing event with Dennis Taylor as an after dinner speaker, that raised funds for The Brain Tumour Charity and two other children's charities and loads of staff at M&S Money bought hoodies too and raised over £10,000.00 on this one event alone! We've 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.Matt Burton did a Marathon and raised £650, and Matt continues to support us in many ways.

Cymau Community Centre Christmas event - another success with the angelic voices of Hannah (not me) and Ffion which raised over £4,000.Tony Mayled ran the London Marathon.