Lucy's ES Research Trust

http://uk.virginmoneygiving.com/SomeoneSpecial/lucysESresearchtrust

Born: 07/12/1996 - Passed away: 18/12/2015

We have decided to team up with The Ewing's Sarcoma Research Trust (Reg No: 1145849) This non profit organisation is doing amazing work on finding a cure for this rare and terrible disease that affects children and young adults. It is imperative that more work is done to improve the help available on top of the chemotherapy and radiation currently offered. So, please help us to raise funds to help the work of Ewings Sarcoma Research Trust, in a bid to ensure that others do not need to be affected in the same way as Lucy and others like her who are suffering from this rare form of cancer. There is so much more that can be done if more funding is dedicated to research.

Lucy was a healthy 8 year old girl when she became very ill with pneumonia in the summer of 2004. It wasn't until a follow up appointment to check that her lungs had cleared three months later, that a large mass was found in her chest.

A biopsy was done on Lucy's 9th birthday and a week later we were given the news that no parent wants to hear. Our little girl had cancer. Ewing’s soft tissue sarcoma.

How could this be? Why had this happened to her? Our emotions were all over the place, but we didn't have time to think about our own feelings. Our main focus was getting her through this.

Chemotherapy (VIDE) was given for nine months and radiotherapy soon followed. Through this sad and torturous time, Lucy remained strong and positive. The side effects to the chemotherapy made Lucy feel terrible. We pushed to get a peg fitted for her, as she was unable to eat properly and had lost so much weight. Through all of this, she missed 18 months of school,but that didn't stop Lucy from striving to achieve her goals.

Lucy soon went back to school, moved on to secondary school and passed all of her GCSE's with 11 A’s! She had a particular interest in photography, baking and psychology. Her dream was to go to UCL in London to study psychology/criminology. However, halfway through her first year of sixth form, we got more terrible news during a routine check up with her oncologist. Her Cancer had returned in the Spring of 2014, it had come back in the same place as before.

Another dose of Chemotherapy (VAI) was prescribed with the hope of shrinking it enough to remove the remainder through surgery. Again, Lucy remained positive throughout. Lucy was often neutropenic due to chemotherapy which meant she was could not continue with her school work and was unable to see her closest friends, but despite this, she pushed on with her fight and remained determined. During this time, Lucy planned a Sarcoma UK barbecue that went on to successfully raise £900. Lucy was responsible for all of it, the music, food, invitations, garden decorations and even the Sarcoma UK cake that she baked and decorated herself. She certainly had a talent for organising and planning events.

I remember one time when I was feeling low, I asked her why this had to happen to her? I will never forget her reply. She said “Why not, it's better me than anyone else”.

Lucy's chemotherapy lasted for seven months and the surgery soon followed at The Royal Brompton Hospital in Nov 2014. Open heart surgery was carried out in order to remove the mass from her chest. The Surgery was successful, however recovery was very slow. High dosage chemotherapy was an option but as recovery took longer it was decided that it may have caused more harm than it did good. Lucy's kidneys were struggling with treatment and her heart was showing signs of strain due to all the chemotherapy and radiation her body had endured over the years.

Finally in May 2015, Lucy's Ewing's Sarcoma made a return for the third time. Why had this happened again?? This came as a complete blow and Lucy decided that she did not want any more treatment. We as parents understood and supported her decision as we could see what the chemotherapy had done to her already. All that Lucy was offered at this point was chemotherapy to manage the cancer and to prolong her life, but, what quality of life would the chemo allow Lucy to have? She chose to continue without the chemotherapy and enjoy the time she had left feeling as well as she could. We tried every alternative route we could find, including alternative therapies and clinical trials, but Lucy didn’t want to spend her last few months in and out of a hospital 3-4 days a week taking part in a trial that was unlikely to help her. There really was nothing else out there to help her.

After Lucy’s terminal prognosis, she remained strong, courageous and positive.

In July of last year, we had a lovely holiday in Cornwall which she arranged for the family. Our daily activities had been planned by Lucy as well as the evening meals organised and cooked by her. We went to The Eden Project and Lucy went on England's largest zip wire. It was perfect.

In September, Lucy bought herself a Pomeranian puppy. We felt it would give Lucy something positive to focus on as all of her closest friends were moving away to university. She took on the challenge of a puppy with all the determination that you would expect from Lucy and took her puppy along to obedience school, ensuring that she passed the puppy foundation course.

Last November Lucy organised a family and pet photo shoot. Again, she arranged everything even down to our outfits. She was the perfect planner of all things.

Lucy also organised a family hand cast so we would have something to keep and cherish forever.

Lucy's 19th birthday was on the 7th December and then she decided to bring our Christmas Day forward to the 8th December, followed by Boxing Day on the 9th. All Christmas food was pre arranged leading up to the day, we even had tasting sessions to make sure that everything was perfect on our Christmas Day. Lucy gave us all presents on Christmas Eve, inside our parcels were our Christmas Day outfits to wear with our our own festive headwear and a candy cane stick. Our Christmas Day was perfect. As we awoke on our Christmas morning, Lucy had already prepared us all a Jamie Oliver Christmas Egg Nog (she was a Jamie Oliver fan) The table was decorated like never before! It was the best Christmas ever.

Eight days later on the 18th December Lucy sadly passed away.

Since Lucy's passing, we have been recieving weekly Hello Fresh boxes. We wasn't aware of what she had planned. Obviously, Lucy wanted to ensure that those closest to her were eating fresh and wholesome cooked meals. She knew her Mum wasn't the most adventerous of cooks. Lucy had also arranged for bouquets of flowers to be sent to her 17yr old sister on her birthday by surprise and Mum for the following year once a month by Bloom & Wild!

As you can see, Lucy was a very strong, brave and inspiring young girl. With everything she had to contend with in her life, she never stopped thinking of others first and formost. What a true inspiration she was and still is!

The money that we raise will be dedicated to funding research into alternative therapies only, as we are all too aware of the terrible effects that chemotherapy and radiation have on the human body. Our aim is to help discover more treatments that don't harm the vital organs of these children and young adults who are already in such a vulnerable position and ultimately, we hope to find a cure.

The logo for this page is one that Lucy designed herself.

Total donations: £3,491.40

Peter Cornforth

15.07.17

£10.00 (+ £2.50 giftaid)

Good luck Lucy, I hope you overcome all your problems

Manish

11.06.17

£20.00 (+ £5.00 giftaid)

Well done Naz for completing the colour run yesterday

Anonymous

09.05.17

Brenda Stevens

02.02.17

£5.00

Donation from Brenda Stevens

Kieran Twomey

11.01.17

£100.00

Sylvia Marsh

27.11.16

£10.00 (+ £2.50 giftaid)

What a sad but inspiring story! Lucy was indeed a daughter and sister to be proud of! I wish you even greater success in your fund-raising.

Customers & Staffs @ Goffs Oak BOOTS

25.10.16

£141.83

Money collected from charity box

Eamon McElduff

16.09.16

£20.00 (+ £5.00 giftaid)

I have also had sarcoma of a different sort - chordona. After treatment at Royal National Orthopedic Hospital in Stanmore, I am now fully cured. This is a wonderful Research Trust.

Daniel

14.09.16

£220.00 (+ £55.00 giftaid)

:-)

Leyla

14.08.16

£100.00

With love from Leyla, Meryem, Anita and Tarik xxx

 

The amount raised above includes the total raised on linked pages where there is a common charity. To see what the charities which this 'Someone special' page supports have each raised from direct donations, see the charity totals below.

 

Ewing's Sarcoma Research Trust
Total raised: £3491.40

The Ewings Sarcoma Research Trust seeks to raise funds for much needed research into this rare, but curable, form of bone cancer. The charity also seeks to raise awareness amongst those groups most affected, namely teenagers and young adults.

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Total raised
(inc. all linked fundraising pages where there is a common charity)

£4,506.40

Total raised (+ Gift Aid)

£4,926.30

Offline total

£1,015.00

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