by Lesley Parsell
Our beautiful daughter Laura was diagnosed at the age of 24 with cancer. This cancer had been growing in her abdominal cavity for a very long time, but as with many cancers there were no visible symptoms. This was a rare type of cancer called a sarcoma. This is a fatty tissue cancer that does not invade organs within the body, but sticks to them. So unless they are diagnosed early or are in an area of the body where an extra margin around the tumour can be removed, an operation is not usually possible. This was the case with Laura. Our only hope was chemotherapy, to shrink the tumour. Unfortunately everything was against Laura. It had been growing for so long that it had attached itself to her major blood vessels and research into sarcoma treatment is very slow due to the rarity of this type of cancer.
Laura was originally admitted to our local hospital, but was soon referred to University College Hospital (UCH) London. She was put under the care of Dr Beatrice Seddon, who has specialised in the treatment of sarcomas. Dr Seddon is a wonderful person as well as a fantastic doctor and she related to us with great care and truthfulness. She answered our worries and concerns to the best of her abilities. Unfortunately the choice of chemo was very limited, but initially Laura responded well and the growth of the tumour was halted and even shrank slightly. After some time the tumour began to grow again and a new treatment was needed. During all of this time we were not only supported by Dr Seddon, but also by Macmillan Cancer Support. A lovely lady called Deidre Driver. She really is an earthly angel and when we were struggling with not only the disease, but also the NHS system, she was always available for help and support.
The next chemotherapy treatment did not have any impact on the tumour and so we had run out of approved chemo drugs. What would you do as a parent? What the NHS was saying to us was that's it, stop and wait for her to die. Dr Seddon could do no more for us within the NHS system.
At this time there was a new chemo drug for sarcomas, but it had not been approved by NICE and although we applied for funding this was refused. We were not ready to give up on Laura and decided to fund the drug ourselves. We believed that the application for funding had been presented to the Exceptional Treatment Panel at our local PCT. Laura was presented with an opportunity to go on television to talk about the refused funding and because of this I contacted our PCT. I subsequently discovered that the request had not been treated as a special case, even though all previous funding had also been referred to them. After three days of contacting different people by telephone the PCT decided to fund the drug. Is it right that we had to fight for help, when we were in a very vulnerable state of mind? Our daughter was dying and we needed care and consideration. Perhaps we are lucky that we have the ability and support from friends and relatives to fight for our rights, but what about all the people that cannot.
Roger Wilson from Sarcoma UK also supported us. Roger gave of his time and knowledge to help us to achieve all the help for Laura that was humanly possible.
This is a fairly new charity that is helping to further research in cancer drugs that will also help to treat sarcomas. Their dedication and enthusiasm is inspiring.
Unfortunately Laura was not able to tolerate the new drug and although she was admitted to The Royal Marsden Hospital in Surrey for a drugs trial, she was too weak to begin the treatment. This is another wonderful hospital with very special staff. Laura spent six days in The Royal Marsden and lost her fight for life on the seventh day. Laura had fought this terrible disease with a strength and fortitude that was amazing to witness. The support of all the special people around her I am sure made a difference.
Laura died on 24 February 2008, she had fought this disease for two years. She was a fantastic primary school teacher, loved by all the children in her care and just starting out in her life. She was 26 years of age.
Their needs to be more consistent help for the wonderful people that dedicate their lives to caring for people suffering with terrible diseases such as cancer. This is why I support anyone who is trying to make a difference. Colin and Laura were sometimes in UCH at the same time. Colin was being treated for Leukaemia. Laura was being treated for sarcoma. Their experience exactly the same with all the hospital staff around them. They make a difference and all funds raised will make a big impact for the hospital and staff. I applaud the effort Colin is making and will be with him all the way in mind if not in body, as I am sure Laura will be.
