Nigel and Lesley, Lewis's mother and father, share his story

It was April 2006 and Lewis began to complain about a pain at the top of his left shin and he said that he thought that he had twisted his knee. This continued for a week or two but it was getting progressively worse and eventually he was in such pain at work that he was sent to Ely hospital. They did an X-ray on his knee and this revealed that something was not right and he was then referred to Hinchinbrook Hospital for an MRI scan. This was done on 3rd May 2006 and revealed that he had an abnormal bone growth and he would need to be referred to Stanmore.

We were then contacted by Stanmore and advised that they would need to take a biopsy to see if the tumour was benign or malignant and that they would also do a full body scan at the same time. These were done on 9th and 10th May 2006 and we then had to wait for the results which came through around 2 weeks later. The news was not good as Stanmore confirmed that Lewis had osteosarcoma and that it had also spread to both lungs. At the time I don't think that any of us realised the profound implications of the fact that it had got into both lungs. We were all more aware of the fact that Lewis was in severe pain, on strong morphine patches and the lump on his knee was growing rapidly. Also, his grandfather had recently gone through a course of Chemo (for a different type of cancer) so we all knew that Chemo was a whole body treatment anyway.

We visited Addenbrookes in Cambridge on 30th May 2006 and were advised that he would have 6 cycles of Chemo with surgery at Stanmore in the middle to replace top of his shin bone and knee cap. After 3 cycles it was time to go back to Stanmore, Lewis had not been too bad on the Chemo but the lump on his knee had still grown. Stanmore were concerned at this and did a scan on his knee on the morning of his operation, this revealed that the tumour had grown such that they could now not offer the limb saving surgery as planned. Lewis was therefore faced with the fact that he would have to have an above knee amputation on top of the fact that a scan on his heart the week earlier had revealed that he either had a blood clot or a tumour in his heart. The anaesthetist said that if it was a blot clot (which it was and was subsequently dealt with by anticoagulants after the operation) he may not wake up if it moved during the operation - so the 13th September 2006 was a very bad day. The amputation went well and Lewis returned home on 17th September 2006.

We then had to wait on the histology result for the tumour, more bad news as this showed that only 50% of the cells had died whereas they normally like to see at least 90%. This meant that the previous combination of Chemo drugs had not worked well and Lewis was then put on another 6 cycle course of Chemo with two different drugs - this ran from mid October 2006 through to the end of January 2007. Lewis was then on a monthly/bi-monthly referral which just involved a chest x-ray. Over the next few months things seemed to get back to a bit of normality. Lewis had got his prosthetic leg, an automatic car and had started going back to work on a part-time basis.

After an x-ray in June 2007 Lewis was told that the tumours in his lungs were growing, there were too many to operate and a further course of Chemo was offered. This time a high dose of a single Chemo drug was given and the course ran from July 2007 to the beginning of November 2007. An x-ray shortly after revealed that there had been a good response to the Chemo and we were looking forward to Xmas.

Towards the end of November 2007 Lewis started complaining of constipation and we got his GP involved. We went through a variety of remedies including some very powerful laxatives and enemas but nothing was working. At his regular appointment at the hospital in early January 2008 a CT scan revealed very little when they looked at his bowel. This continued for several further weeks and it wasn't until the end of January 2008 when Lewis started complaining of a loss of sensation in his right leg that it was eventually discovered that he had a tumour in his right pelvic/hip area which was affecting a group of nerves some of which controlled his bowel and bladder. He immediately had 5 sessions of Radiotherapy to lessen the excruciating pain that he was in and he came home on 13th February 2008.

We quickly realised that things were not at all good as this new tumour had been causing a problem very soon after the last course of Chemo had finished. It quickly dawned on us that there was little more that could now be done and further Chemo was an unlikely option and a call with his consultant confirmed this. We did not share this with Lewis as we always tried to be as positive as we could at all times.

Lewis was then admitted to hospital again on 19th March 2008 as he had a high temperature combined with pneumonia and pleurisy. He was given antibiotics which helped with the infection but his breathing was getting progressively worse. On 26th March 2008 his consultant advised him that they could not offer any more Chemo which Lewis took very well and we guess he probably knew this already. He was now keen to spend what time he had at home and preparations started for him go home the next day. That evening he went to sleep early as usual but this time he went into a different type of sleep. He awoke early the next morning but quickly went back into this different type of sleep and died peacefully in hospital at 9.30 am on 27th March 2008 aged 22.

He had fought very bravely over the two years and it is tragic that just when things were going well for him that he fell ill. He had just got his first management appointment with Waitrose and had bought his beloved VW Golf and although not a GTI model, that was going to be the next one. He always took great pride in his appearance and whilst he never said a great deal on the subject we think he found it difficult dealing with the fact that he had lost his hair, although we felt that he looked fine as do many young men who shave their heads. The loss of his leg was a very great blow but despite everything he remained positive throughout and he actually faired pretty well whilst on the numerous cycles of Chemo. He had few side effects compared to others and between September 2006 and January 2008 he actually put on over 30 kilos (thirty!!) and that was without even taking the steroids and he was never good at taking tablets!

He is missed very badly and he will always be in our thoughts, we talk about him in our normal conversation several times each day and we are always reminiscing about the things he used to do and say. All our love for always - Mum, Dad and sister Laura.

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