Lucy's mum, Lynne, tells her courageous story...

We were on holiday in July 2018 when Lucy started to suffer from constipation. We took her to our local GP who arranged for Lucy to have blood tests, but the tests showed nothing untoward.

Three weeks later Lucy was still suffering from constipation, so we took her back to out-of-hours GP. He sent us away with a prescription for Movicol, a laxative for the treatment of constipation.

The very next day Lucy's legs were not working properly so we went back to the GP on the Friday evening, who sent us to Altnagelvin Area Hospital in Derry. When we got to the hospital Lucy was unable to put one foot in front of the other. She was finally able to go to the toilet whilst we were at the hospital, and I thought that we would finally be able to go home.

The hospital wanted to keep Lucy in to monitor her, and by the next day, she was paralysed from the waist down. Lucy was sent by ambulance to Belfast Children's Hospital on the Saturday, and on the Sunday, she was sent for an MRI scan.

The medical team called me and my husband in whilst Lucy was still having the MRI and told us they had found a tumour in Lucy's back. We were totally shocked to receive this news.

Lucy was kept on the Paul Ward at Belfast Children's Hospital for about 4 weeks whilst they carried out various scans and tests. Initially, they were unable to extract enough of the tumour to carry out a biopsy, so it was decided that she would have an open biopsy and at the same time the surgeon would remove as much of the tumour as he could. This was because part of the tumour was pressing on her spinal column, causing the paralysis.

This surgery took place on the 10th August and, after this first surgery, we were told that the damage was done and Lucy may never walk again or it would take her a long time to regain any movement. Lucy was having none of it and, just a few nights later, she started moving her legs. It was following the biopsy that Lucy was given a diagnosis of Ewing sarcoma.

Approximately two weeks later Lucy started her chemotherapy. She was treated with vincristine, doxorubicin, cyclophosphamide, ifosfamide and etoposide. The doxorubicin was terrible, and after every round Lucy would develop terrible mucositis. She had 10 cycles of chemotherapy at Belfast Children's Hospital, before she was transferred to Birmingham Children's Hospital in England for surgery.

Lucy had surgery to remove the residual tumour and to remove three of her vertebrae, which were replaced by two of her ribs, held together with carbon fibre rods and Jazz Bands.

The surgeon had to keep the use of titanium to minimum as Lucy was having proton beam therapy later as part of her treatment. The surgery was a success in that they were able to remove all of her tumour, and for that we will be forever thankful.

Unfortunately, Lucy had to have further surgery just two and a half weeks later. The carbon rods did not hold, and they had to be replaced with longer carbon rods held in place with titanium screws.

Lucy was supposed to be returning to Belfast Children’s Hospital for more chemotherapy and then to Germany for her proton beam therapy, but she was in so much pain recovering from her surgeries, her medical team arranged for her to have the rest of her chemotherapy at Birmingham Children’s Hospital and her proton beam therapy at The Christie.

Lucy started her remaining 4 rounds of chemotherapy about 2 weeks or so after the surgeries. She was so poorly at the end of the chemotherapy and had lost so much weight she was given parenteral nutrition as she just couldn’t eat.

We then went up to Manchester for the proton beam therapy. She had 27 proton beam treatments in total. Despite the aggressive and relentless treatment at the proton beam centre, there were days when Lucy, a shopaholic like me, was still able to enjoy the shopping in Manchester.

Lucy completed her treatment 11 months after diagnosis, and she initially went for follow up appointments every 3 months to Belfast. At each follow up appointment she would have an MRI scan and a chest X-ray. The frequency of the follow up appointments was reduced to 4 months, and then 6 months. Sadly, after Lucy’s last set of scans the oncologist told us there had been a recurrence of Ewing sarcoma in Lucy’s lungs.

Lucy’s treatment has meant she is left with pain in her back, and she missed out on so much school and time with her friends. We spent 5 months in England and whilst Lucy’s Dad was able to come and visit when he could, it was very hard for Lucy’s older brother.

People have been so kind throughout this whole experience. A lot of friends and family fundraised for us to help with expenses which was a great help as we could focus on getting Lucy through her journey without the added stress of bills, also when we were in Manchester a man paid for some treats for Lucy in a well-known stationery shop which really made her feel very special.

We have also kept in contact with the taxi driver who used to drive us to The Christie from our apartment, and he even sent Lucy a Lego set for her birthday. We even met up with Lucy’s spinal surgeon at the recent Bone Cancer Research Trust Conference in May.

I have always known Lucy is amazing, but I am just so proud of her and the way she has coped with her treatment and surgeries. She is such a smart, bright, funny little girl who keeps us all going with her personality. She’s never too far away from a joke or a prank.

Research into treatments for Ewing sarcoma is so important. We need to find better, kinder treatments that will improve outcomes for Ewing sarcoma patients like Lucy.

The Bone Cancer Research Trust is not just about finding better ways to treat bone cancer, it’s like a great big extended family with support for families in every aspect of their cancer journeys which makes even the most darkness days bearable.

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