Gill, Emma's mother, shares her story
The biopsy confirmed it. Emma began chemotherapy and we were told that she would need 6 cycles to be given every 3 weeks. After 3 cycles she would have an operation to remove the tumour, Emma's tumour was 12 inches long. They had told Emma that they may have to amputate her leg, but if they could, they would perform a leg salvage operation. This involved taking out her femur bone and replacing it with a custom made titanium prosthesis.
The chemo was terrible; nothing could have prepared us for this. She was violently sick, her hair fell out in clumps and she hardly ate. Through all this, however, she never lost her wicked sense of humour or that lovely smile. Emma was upset seeing the younger children suffering and she would say 'I'm better off than them. They are so young.'
After 3 sessions of chemo Emma was seriously ill, her kidneys and heart had been affected. At this point there was a doubt that she would be able to have the operation. A few days before the operation she some how fought back. To everyone's surprise the day before the admission date at the specialist hospital we were able to bring her home for the night before leaving for her to have the operation.
Still smiling we met the consultant who would perform the operation. Emma signed the consent form, but put down that if they had to take her leg off they would have to wake her up to tell her. She couldn't bare to wake up not knowing if it was gone. We were told Emma would be in for three weeks. The operation went well according to the surgeon and she kept her leg. Two weeks later Emma walked into our local hospital, with a huge beaming smile. It was the first time she had walked aided by crutches for over 3 months.
Although weak from the chemo she exercised daily, getting more strength in her leg and her goal was to start driving again. Emma drove me to her last chemo session. Then she drove us two hundred miles to her Orthopaedic out patient appointment. The consultant was amazed.
The next few months were brilliant, she regained her strength quickly and her hair grew back much to her delight. All Emma wanted was to be normal, go to the pub or a club. We had weekends away; it was just lovely to watch Emma living life and being so happy.
We still had monthly oncology out patients appointments. This was always hard as you always dreaded them and what you might be told. We booked a holiday last minute just before we had a clinic appointment as they were so pleased with Emma's progress. We were told she would be fine and to start making plans to go back to college. We came away so happy. The day before we went away Emma had her 3 monthly CT scan.
The holiday was lovely, and Emma looked so well. I rang up for the results when we got back home. It was the worst news ever; it was back, this time in her lung. I shall never forget Emma's face. She was devastated, but despite everything was still smiling whilst at the clinic. Within a week she went to have her thoracotomy to have all three tumours removed. She then asked whether she was going to die. To which they replied 'No not this time.' Emma bounced back and still smiling bribed the doctor to let her come home early by climbing two flights of stairs instead of the one he had instructed her to do.
Within weeks the cancer was back in her leg and in her other lung. She returned for more surgery to remove the tumour from her leg and then we received the worse news ever. She had multiple tumours in her lungs and was told they were inoperable. We asked them not to tell her yet and a few days later she had a lovely 19th birthday. As a special treat we arranged for a stretch limo to take her to a health spa and again Emma was smiling all the time. We had the best Christmas ever followed by a holiday in Florida fulfilling Emma's dream to swim with the dolphins.
They told her on our return that they could not cure her and she would die from the disease but they didn't know how long she had left to live. On our drive home Emma said 'she had nothing to look forward to, only a life in a coffin'. Over the next few months she deteriorated but we still went out everyday with her and she still kept her smile. Some how she managed to arrange a surprise 25th Wedding Anniversary party for us. Shortly after this things got a lot worse. Emma asked the consultant to be honest and tell her how long she had left to live. She replied 2 weeks.
Whilst lying with her on her bed that night she said she hoped it wouldn't be as long as that, as she was so tired. She asked us loads of questions about dying and what would happen to her. She asked us if we could get the vicar to come around, which he did and Emma arranged her own funeral. She stated 'no religious stuff, no hymns and requested her favourite songs'. She told him she wanted to be buried because she was afraid of fire. Just before he left a butterfly flew in the window and he told her that that was a sign of new life. Emma took her oxygen mask off, smiled and said 'I will be back.' Emma died 2 days later aged 19 years, surrounded by family and friends. It was Emma's special day because Emma was so special and although a strange thing to say, it was a beautiful funeral.