Caroline’s story
Our beloved Caroline was just 26 years old when she was diagnosed with an inoperable brain tumour. Originally diagnosed and treated as a P-NET tumour she fought it bravely for a year, undergoing treatment at the Christie in Manchester and then in Cologne Germany. Ultimately she lost her battle and died at home on 20th November 2013, just before she was due to be married, surrounded by her family and fiancé.
Caroline was a bright, outgoing and cheerful girl, growing up as part of a large family in Hale, Cheshire before going onto Leeds University to get a degree in events management.
There was never a question of her doing anything else as she always loved being the life and soul of the party or family gathering, organising parties and nights out for her friends.
It was just over a year after she came back from doing a ski season in Whistler that her eyesight began to deteriorate and she started to exhibit symptoms of double vision, a burning smell and a sense of Deja Vu. She was referred to Hope hospital in Salford but they failed to recognise the symptoms as being typical of a brain tumour and didn’t ensure she had a MRI scan that would have diagnosed her condition correctly. After a misunderstanding about appointment times they refused to offer her another appointment for a scan, instead attributing the symptoms to a thalmic nerve issue or even a migraine! It was only when she went for a private scan that we received the awful news that she had a Primitive Neuro Ectodermal tumour (P-NET) that could not be removed by surgery.
The next 11 months were filled with an intensive series of radiotherapy and chemotherapy treatments that initially offered some hope of a cure. However the radiation treatment was only partially effective and destroyed the body’s immune system preventing her ability to receive further chemotherapy. In September 2013 her oncologist said they really couldn’t offer her any more treatment and to go home to see her time out.
We never gave up hope of finding a cure for Caroline so after getting all her medical records and doing some very rapid research into alternative therapies, we took her to the Cologne Medical Centre in Germany for dendritic immunotherapy treatment. In some ways Caroline enjoyed the adventure of it all, but more importantly we all felt that at least we were doing something positive. The doctors at the clinic looked at the scans we had brought from the UK and thought the tumour looked more like a Glioblastoma that was potentially operable. They referred us to a Neurosurgeon at the hospital in Cologne for a second opinion. He was very surprised that it had not been operated on in the UK and agreed to carry out an operation to try and remove as much of the tumour as possible.
Caroline’s condition started to deteriorate very quickly from that point and the operation had to be carried out as an emergency. Despite our lack of German language skills, the level of care she received in Germany was excellent. It became clear to us that in Germany they were more prepared to operate using techniques not yet available in the UK.
The operation was partially successful in that a large part of the tumour and associated oedema was removed, but could have been more effective had it been offered earlier in her treatment. However it did give her more time to spend with her family even if it didn’t change the final outcome. She had one last adventure, flying home in a private jet. It seems trite to say that Caroline fought her illness bravely, without complaint and kept her wicked sense of humour throughout, but that was the truth.
Caroline had been a lifelong giver to several charitable causes and we know that she would have wanted to continue to try and help others in whatever way she could.
Her family have decided to set up a supporter group in her memory, with the twin aims of funding early diagnosis of tumours and promoting research into new treatments such as dendritic cell therapy and proto neuron treatments etc. that potentially could improve outcomes for other sufferers in the future.
There will be fund raising events at which all are welcome to take part. We would particularly welcome all who knew Caroline to stay in touch with the family and use this fund to keep her memory alive. We can be emailed on mail@joncowan.co.uk or please call on 0161 928 7991
Donations to the fund can be made via via the button at the top of this page or by clicking this link: http://uk.virginmoneygiving.com/CarolineCowan. Thank you.