Georgie's Story

begins with his diagnosis of Neuroblastoma on 20th April 1999 when he was just 4 years old.

He had been a little unwell and not his usual self. When he complained of a stomachache we took him to the doctors but they could find nothing wrong. In March his right eye became swollen and after more visits to the doctor and eye clinic we finally got an MRI scan organised. From this scan George was found to have a large abdominal tumour attached to his adrenal gland. The cancer cells had also spread to around his eye, his skull and his bone marrow. He was immediately referred to The Royal Marsden Hospital at Sutton for further treatment. George had a biopsy of the tumour taken and a 'central line' fitted at St. George's Hospital in Tooting. The 'central line' was necessary for chemotherapy and other treatments that he would need.

It was at this point that we realised how ill our little boy was. We were told by the consultant that Neuroblastoma has a long-term survival rate of just 1 in 5. That really was not good. However we remained positive in our thoughts and knew that he was in the best place. Georgie's treatment consisted of chemotherapy every 10 days. There were to be 7 courses of treatment followed by surgery to remove the remainder of the tumour. The chemotherapy was done over 3-5 days as an inpatient with admissions to our local hospital if he became unwell between courses or needed antibiotics due to a suppressed immune system or blood transfusions.

Very early on in his treatment we were offered to be part of a clinical trial using radiation therapy that is given by injection called MIBG. This meant that George would have to be in isolation for about 10 days with very limited contact from family members and nurses. It was at this time that he also began losing his hair. For a 4 year old this must have been so frightening, but he just took it in his stride and did everything he was asked to. At the end of chemotherapy George had a couple of weeks off before he was admitted to St. George's again for surgery. We took George and his older brother Jack on a short holiday to Euro Disney thanks to the funds raised from a sponsored walk by colleagues and family.

The operation lasted 8 hours and George was then in intensive care for 2 days. He recovered well and was soon allowed home. Just 2 weeks after this he started going to school for a short time each day. He was very frail but happy to be with his friends!

In October he was admitted to the Royal Marsden Hospital again, this time for intensive high dose chemotherapy and a stem cell transplant using his own stem cells. This made George extremely ill and he was to be in hospital for almost 5 weeks.

In November 1999, we came home and were overjoyed in the news that George was in remission!

George still had to have regular reviews so we still had many visits to the hospital. He never complained of this, he just saw it as being part of our lives. He was taking a drug called Roaccutane, which apart from being a treatment for acne, has shown to help in the prevention of relapse in Neuroblastoma. From May 2000 until April 2002 everything was fine, but then George complained of a sore elbow. This was investigated but showed nothing sinister. However, in December it happened again and further investigation showed this time that the Neuroblastoma had come back and Georgie had relapsed. The tumour was growing in his right arm.

Our family was devastated by this news, but George was angry and determined that he was going to get better again. There is unfortunately, no cure for Neuroblastoma, you just have to hope that you will be lucky and the treatment will work.

The Royal Marsden began treating George again, but because his body had already been very heavily treated he was susceptible to more infection risk and he needed more blood transfusions meaning even more time in hospital. The first line of treatment was not a success so we decided to try something else. George was put on a trial again, but this proved to be too toxic for his body. He had some external radiotherapy but again without success. We investigated treatment in America but there was nothing that was proven to be any more effective than what was being done here. George had the MIBG therapy again, although this time it was slightly different and although he got a bit of pain relief for a short time it was not a success.

Throughout all this treatment the family were supported by a fantastic team of people at the Royal Marsden Hospital and locally at St. Peter's Hospital. As much of George's care was undertaken at home we had a great outreach team from the Marsden and community nurses. They were always greeted with the same banter, cheeky and sometimes near the mark remarks from George, and although they were people invading his home and doing things that were sometimes uncomfortable, he loved them all.

George Pete and Johnny

Georgie, Dad and Uncle Johnny

Throughout all of that year George tried to carry on his life as normal, going to school when he was able and spending time with friends and family. He enjoyed visits to many places including the butterfly house at Syon Park, Chessington World of Adventures, Thorpe Park and Legoland although he had to use a wheelchair as his health deteriorated. In August we had a wonderful visit to Shepperton Studios to see Hogwarts Castle and met a smashing group of very clever people. While we were there Georgie was asked if he would like to go to the 'real thing' and a visit to the studios where it is all made and arranged.

What a day we had...

George with Hermione, Harry and Ron from the set of "The Prisoner of Azkaban"

George with Hedwig

Georgie was offered an authentic cloak but not satisfied with just that promptly asked for the whole school uniform, and not just one but all 4! The wardrobe girls were busy altering Harry Potter's cloak just for him, and he wanted more, but that was Georgie all over. George his brother Jack and good friend Nancy had a lovely day and also met Harry, Ron and Hermione who were great. Treats such as these did not alter the reality that Georgie was seriously ill, it just made it a little easier sometimes.

George had to stop playing football but told his team mates he would be back for the next season. He always tried so hard not to let his illness get him down and even as the year went on and he became less able to do all the things that he loved, he never gave up trying. One of his greatest passions was Lego and he has made many wonderful creations. He also loved Warhammer and we would spend hours (much to the nurses amazement) making and painting his many models. He was a young man with a real zest for life, interested in so many things that sometimes it was hard to keep up with it all!

We were treated to a very last minute trip to Lapland on Christmas Eve courtesy of the 'Emily Ash Trust' who contacted us through Sargent Cancer Care for Children. Sargents have been a great support to all the family throughout the five years that George was undergoing treatment. Both George and his brother thoroughly enjoyed the day, even though we had a three hour delay at the airport to come home, and at one point thought we would be there for Christmas!

Unfortunately in January the pain caused by the tumour in Georgie's arm was now too great to be managed at home and we had to admit him to The Royal Marsden. We spent a week there getting the pain under control. By now the cancer had spread and was continuing to do so quite rapidly. We had to make a decision to bring him home, or transfer to 'Christophers', a Chase children's hospice in Guildford, Surrey. As his symptoms were so bad and he needed constant care the hospice was the best option. George had spent time there before and was quite comfortable about going there for a holiday. He still even at this time, remained cheerful and pleased to be spending time with the many visitors that were welcomed by the staff at Christophers. We had a swimming party in the hydrotherapy pool, and although George needed a great deal of support to get him into the pool because of his condition, he managed to enjoy it.

On the 20th January Max Clifford very generously arranged for us to be whisked away to the Eastenders set in a luxury limousine, where George met his favourite character, 'Alfie'. He was extremely weak and although we have many photos of that day they remain difficult to look at as they are a painful reminder of how very ill he had become. However, he tried so hard to smile and even demanded chips on the way home!

Our brave and amazing 'little knight' passed away the next day on 21st January and we hope that he will now sleep peacefully.

Thank-you for reading 'Georgie's Story' .

George and Aunt Neen

Georgie and Aunt Neen Christmas 2003

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Georgie's Story