Story About SophieUp to the age of 19 months Sophie seemed to be a normal, healthy little toddler. She walked before she was a year old and her speech was well ahead of her age. And that cheeky smile of hers would have got her out of all sorts of trouble. But this was the time her illness began to show; firstly with occasional vomiting and soon after on a regular daily basis. For a while this was diagnosed as a viral condition but, after the first week, we were all concerned that this was more than a virus.
Sophie’s condition was getting worse; at 21 months her mood was changing; she was no longer that happy little girl and she was quickly loosing her ability to walk. Who knows how she was suffering at that time.
On 21st July 2006 Sophie was finally referred to the Norfolk & Norwich University Hospital for a scan. The results were devastating to us all; she had a tumour of her brain. She was immediately transferred to Addenbrooke’s Hospital in Cambridge for further tests. The worst was confirmed and arrangements were made for an operation to remove as much of the tumour as possible.
On Monday 24th Sophie’s operation started at around 9am. We were all anxiously waiting for word that it was complete but, the hours passed we knew that wasn’t good. It was 8½ hrs in all, and seemed like a lifetime. It had been far more complicated than expected and the results from the biopsy were not good either. This was an aggressive malignant brain tumour (Medulla Blastoma). Sophie's condition was poor; she remained in intensive care on a ventilator in a coma for the next month. On two occasions doctors prepared Mum and Dad for the worst. It was an agonising month for us all.
But Sophie did regain consciousness, just before her second birthday; a very emotional day. But nothing seemed to be on her side. She picked up one infection after another, even the shunt fitted to drain brain fluid became infected and had to be replaced. Sophie remained in intensive care for a further 3½ months during which time she underwent a total of seven operations. This was a distressing time as Sophie was not well enough to receive the Chemotherapy and Radiotherapy she so desperately needed to halt the re-growth of the tumour.
Four and a half months after the operation Sophie was taken off the ventilator and out of intensive care. Two weeks later the first dose of Chemotherapy was given. She soon lost all her hair, together with her immune system. This meant most of the next four months in isolation with just the family and hospital staff in one small room, but we all survived. Chemotherapy is a terrible form of medication but the only possible way currently known to medical science. During this treatment Sophie received more than 100 transfusions of blood products, and we are so thankful to all blood donors.
Sophie received 6 cycles of Chemotherapy over the first few months, followed by 6 weeks of radiotherapy and a further 6 months receiving chemotherapy. She picked up many infections including Respiratory Syncytial Virus (RSV) and Shingles. What a fighter she has been and rarely a day without a smile. She is always very aware of what is going on around her, and her coordination that was so bad continues to improve.
Sophie has continued to make slow but positive progress. She has remained in reasonably good health for the last six weeks; the longest period for nearly two years. She still has a Tracheostomy with Oxygen to support her breathing and a Gastrostomy through which she is fed. Communication is so much better now. She is able to say many words that we understand and to hear her say ‘Grandad’ again brought tears to my eyes. It is however, very frustrating for her when she just can’t make herself understood. Her coordination has also improved enormously, she is now managing to put on her own shoes and cope with buttons. She has the will and determination to walk again and I feel sure that she will, but not just yet.
Sophie has just completed three weeks at the rehabilitation centre at Tadworth, Surrey and already we are able to see the benefits of her rehabilitation program. The centre is run by the Children’s Trust which provides care, education and therapy to children with multiple disabilities and complex health needs. It is a truly wonderful place caring for about 75 children on any one day; some just on a one day basis but others who have been there for many years.
The Charities to benefit from this years event are all closely connected to Sophie’s condition and care, they are:- The Children’s Trust currently providing rehabilitation and care, East Anglia’s Children’s Hospices (EACH) who provided care and accommodation to the whole family at the Milton Hospice during radiotherapy. They now provide additional home based care (over and above that provided by the NHS) and Cancer Research UK for their ongoing research into this dreadful disease.
Become a part of Upcoming World Record attempt "The Largest Gathering of People in Fancy Dress" - One Day Sunday 17th August 2008, Registration 1.30pm for a 2.30pm start to the walk.This is a Fancy Dress Sponsored Walk and Guinness World Record attempt for the Largest Gathering of People in Fancy Dress. The Fancy dress theme is Children’s Characters. 1st , 2nd & 3rd prizes for the best costume are donated by Joules of Southwold (£50, £25 and £15 vouchers). Extra points will be awarded for home made outfits.
Click for more details
http://www.sophiesworldrecord.org/page/details-of-the-event
