Derian House Childrens Hospice
Sarah’s Story
Sometimes it’s impossible to take on board the emotional turmoil involved in the death of a child, perhaps because we simply find it too painful to consider.
But when we hear the story from a real life perspective, in the words of the people involved then we are compelled to confront the emotional issues and travel a road of self discovery. This is how it was for us – this is Sarah’s Story..
Along with her brother and sister, Becky and Charlie, Sarah had always been an energetic and happy child. She had danced from the age of three, entering shows and competitions and winning lots of awards for ballet and tap, so in the winter of 1998 we were concerned when Sarah complained of pain in her lower left leg. She was busy rehearsing for a dance production when the problem became so distressingly painful that it required a visit to the hospital casualty department. Initially the doctor who saw her felt it could be shin splints caused by all her dancing, and requested diagnostic x-rays and an MRI scan to determine the exact cause of Sarah’s pain. But three days later we were in Birmingham Orthopaedic Hospital for further scans and a biopsy of Sarah’s tibia. I struggle to remember those two weeks of waiting for the results, for our lives were turned upside down when Sarah was diagnosed with Ewing’s Sarcoma, an aggressive bone tumour in her left leg. This then, was the start of our journey – an emotional roller coaster ride into an unknown and unexpected world.
She was immediately transferred to the Royal Manchester Children’s Hospital, and from there to the Young Oncology Unit at the Christie Hospital where they began a course of treatment to try to rid my beautiful daughter of the cancer that was threatening her life. Watching your child undergo chemotherapy and endure the side effects it brings – the endless sickness, and shock of losing her hair, is the most dreadful experience anyone should have to bear. And as the months pass, you find yourself reflecting on the, “what ifs” and “maybes”, as children you’ve come to know, undergoing the same traumatic journey as your child, lose their own individual battle for a future.
Sarah underwent numerous operations to remove tumours from her leg, and metastatic deposits from both her lungs. Each tantalising high point of her being in remission was countered by the equally heart-stopping bitter disappointment of yet another relapse. Then in the summer of 2001 she was told that her only hope of recovery was to have her leg amputated. Despite this devastating news Sarah dealt with the surgery in her usual inimitable way – always with a smile and such fighting spirit. She never complained, or asked “why me?”
After the amputation, friends and strangers alike raised funds to provide sufficient money to buy a special prosthetic leg which would enable her to do most of the things other teenagers do – and she did! Shopping trips, discos, sleepovers - Sarah did the lot. The hospital suggested that we visit Derian House for Sarah’s physiotherapy as it was so much closer for us than Manchester. I have to admit that the very word “hospice” sent a shiver of fear through me, as I initially imagined sick and dying children in a subdued and sombre atmosphere. Nothing could have been further from the truth! On visiting the hospice for the first time, within minutes we found ourselves being offered tea in a bright and noisy dining room full of children, their families and hospice staff. It wasn’t long before Sarah’s brother, Charlie was off playing, and as we left after that initial visit his first question was “When can we come back, it’s brilliant!”
However, despite everyone’s best endeavours, in the summer of 2002 Sarah began to experience pain in her back, especially on taking a deep breath. As we sat waiting for the scan results I felt a sense of foreboding that the news wouldn’t be good, that we’d been down this difficult road so many times before.
Even this anticipation couldn’t have prepared me for the mixture of anger and helplessness on being told there was nothing more they could offer Sarah. As a parent you’re the one who always sets the world to rights for your child – how can you accept that there is nothing you can do to make this right, how can you accept that your beautiful child is going to die? Overnight we went from using Derian House for physiotherapy to being told that we now had open access as Sarah was no longer simply life threatened, but terminally ill.
In the Spring of 2003 she was well enough to go to Euro Disney. We had a wonderful five days, and Sarah seemed to blossom. She appeared so well over that summer that it was almost impossible to believe that her lungs were being ravaged by cancer. In September she managed to return to school, and was delighted to be chosen as Senior Prefect. It seemed incredible that she’d attended all of her five years at secondary school with cancer. Already she and her friends were discussing their School Leaver’s Ball, an event nine months away, and ball gowns and limousines became the talking point of the day.
By early October the progress of Sarah’s disease was evident, as signs of it began to appear on her back, and her pain was such that her medication had to be increased weekly. We knew then that Sarah would not live to see the School Leaver’s Ball, and we decided to celebrate her 16th birthday like no other! She wanted to take all her friends out to supper, and travel in style by limousine. A few days before the big day we had to go to Derian House for some pain control for Sarah. The staff were fantastic, and said she would go and celebrate her birthday if they had to carry her out to the car. We managed to get home again on the afternoon of her birthday. When her friends arrived and realised what a fantastic evening lay ahead, their faces were a picture! Sarah was on such a high from the excitement of it all – who needed morphine? But the evening was touched by an unexpected tragedy. One of Sarah’s friends, who had a prior engagement on the night, was involved in a road accident, and died the following day. Sarah insisted on going to the funeral without her wheelchair, and despite intense pain walked into the church unaided.
The following weeks, in the run up to Christmas, saw Sarah unable to attend school at all, and her medication was increased every few days. Nevertheless we had the most wonderful Christmas Day, full of laughter and far too much chocolate!! On Dec 27th we were back at Derian for more pain relief. Sarah had been invited to a New Year’s Eve party and it was all she talked about. We got her home in the afternoon, and as usual she had her painkillers, put on her smile and went to the party. But within five days we were back at the hospice for help to control Sarah’s pain which was becoming unbearable. It was such a relief to have experienced nursing staff on hand to reassure both us and Sarah, and to take over the administration of her treatment regime.
Sarah’s room became a home from home with everything she could possibly need. School friends came to visit, and she even had a sleepover. As a family we had a flat upstairs where we could take time out, sleep and prepare our own meals if we wanted, which allowed us time to relax with Charlie and Becky, and yet still be only a shout away from Sarah.
The evening of my birthday arrived in early January. It was Chinese New Year, and the staff arranged a wonderful Chinese banquet, along with a cake baked by one of the hospice volunteers. I couldn’t have asked for a more memorable birthday, surrounded by family and friends.
The next morning Sarah woke with a high temperature, and it was evident she was very ill – she was struggling to breathe and extremely pale. Sarah had developed pneumonia, and the staff told us gently that she would not survive the week.. The following days and nights were the darkest you could imagine. But our darling Sarah fought on, and remarkably somehow pulled through yet again. The staff were like an extended family for us – they laughed with us and they cried with us. We couldn’t possibly have managed without their wonderful love and support.
On February 25th, eight weeks after being admitted we knew we only had a short time left with our darling girl. She slept most of the day, waking only to tell us over and over again with her beautiful smile, how much she loved us. At 10 o’clock she softly slipped away in her sleep surrounded by the family and staff she loved so dearly.
More than twelve months have passed since we lost Sarah, and not a day goes by when we don’t talk about her. Some days we laugh at the memories, and others we cry. As a family we couldn’t have coped without the love and support we were given at Derian House throughout Sarah’s illness. We will always hold a place in our hearts for the staff and volunteers who make it a warm, caring environment, full of love and laughter for all the children and families who walk through its doors.
Our story is just one amongst many. There are many other children and families like ours, who will need that same love and support to cling to in their own dark moments, and it’s vital that Derian House should be there for them as it was for us. Yet despite this overwhelming need, the hospice, which is open 365 days a year, only receives funding from central government to provide 2 days of care – the rest has to be raised by voluntary donations. Derian House was there for Sarah, and for us when we needed it most. Please help us to ensure it will be there for other families like ours – please make a donation today..
Thank you.
Lynda Heyworth
