George was always a hungry baby; even when he was tiny he loved his food. He only ever got sick once when he was a baby. He was always healthy, happy and looking for fun. When he started school, he loved it. He loves to meet people, he is a people person. He went to Drama, swimming, karate and football. He loves to sing, dance and make us laugh

February 2005 George went to bed as normal. Woke up with severe stomach pains and vomiting. Rang the NHS Help Line. They advised us to take him to Hertford North A&E. Saw our own GP there. He checked George and said that it was a stomach bug/virus.

Feb - April George complained of stomach pain but the pain never lasted long and had no pattern. Started to note weight loss. Went to our GP on more than one occasion but problem persisted. Eventually asked GP to be referred to hospital as George had lost a lot of weight (he always loved his food and was quite “chunky”).

May Got our appointment through from the local. Was due in several weeks.

End of May One weekend George was very poorly. Completely off his food, no energy and getting sick. Took him to our local A&E. They told us that he looked anaemic. They took a stomach X-ray and found nothing on it. I rang the local on the Monday to try and get an earlier appointment and they brought it forward to the following Friday.

We were met by a doctor who asked us several questions. He was of the opinion that George maybe suffering from irritable bowel syndrome. We were extremely upset at this news. George was then seen by a consultant who informed us that they would have to do some tests.

On the Friday George had to have an ultrasound. He also had his first CT scan. He had his first canula fitted (this gave him the fear of needles that he still has today). It was terrible to have to put him through this. He was screaming and shouting for us to help him. What could we do? The hospital staff had to do their job. The ultrasound results came back, we think it was the next day. It appeared ok, but his spleen was enlarged. They informed us that we had to be referred to Great Ormond Street Hospital (GOSH), as they were not sure what was wrong with George.

We got our appointment within days and went to Great Ormond Street Hospital (GOSH). We remember getting in the lift and pressing number 6 and looking at what was written next to the number six on the wall, "Foreign Diseases, Oncology". This meant nothing to us.

George had an ultrasound on his stomach (or jelly belly as we like to call it). When we came out of the ultrasound his Granny and Grandad were waiting for us. We were a bit surprised to see them, but thought nothing of it (they had obviously come to make sure that we were all ok). We were met straight away by a doctor who took us back up to the ward.

As soon as we got back to the ward we were called into an office. George waited outside with his Granny, while his Daddy, Mummy and Grandad went into a Doctors office. We were asked several questions. We were so nervous that we can’t remember everything they asked. One question I remember was had we been to any foreign places recently? Yes we said we had all gone away to Tunisa in May, George must have picked up some sort of bug there. She then continued to explain that George had a growth in his stomach and they there were 95% certain that it was a tumour. Cancer. Great Ormond Street Hospital (GOSH) were also sure that it was neuroblastoma.

We could never put down into words how that moment felt, as we were numb. We were having to deal with the worst possible thing ever. There was George’s Daddy, Mummy and Grandad, the most reliable people in the world to him and what could we do to help him? We had to take all the information in, deal with it and come out of that room smiling, so that George wouldn’t know how seriously ill he was. We don’t know how we got through that half hour or was it an hour? We will never know how long we were in that room for. We then had to leave that room, smiling, acting as if we did not have a care in the world, when in fact our whole world was collapsing around us.

George was having a great time in the play area, painting, drawing and colouring in. We came out of the office all normal. As his Granny had not been in the meeting we had to tell her what had happened. That was so heart breaking. How can you break that news to anyone let alone someone’s grandparent. We let George continue playing in the play area as we informed other members of our family. Not only did we have to deal with the news ourselves, we had to let other members of George’s family know.

George’s dad is an only child, he is our only child , therefore George is an only grandchild. George’s dad had to inform his own mum and dad that George was seriously ill. We can still picture that moment, it will always bee in our minds. It was an extremely tough call for him to make and an even tougher phone call to receive. We informed all the family members what had happened. It was so difficult to let everyone know that loved George so much what was happening. We left Great Ormond Street Hospital (GOSH) and George wanted to go to Covent Garden, to the Disney Store. We walked there trying to be as normal as we could. George went in the Disney Store and bought whatever he wanted. Then he went on the merry-go-round with his Granny. We all smiled and waved as he went by us. How we did that we will never know.

We were informed at the meeting that George would have to have a Hickman Line fitted. (We then had to explain this to George - he was completely freaked out- who wouldn’t be?). We had to take George down to surgery to have something fitted to him that he really didn’t want. He then had to be given anaesthetic. He put up such a fight. Thinking of lots of questions to ask everyone in the room, so that it would delay what was really happening... In the end they managed to get him to lie still and inject, but he wasn’t happy, he was screaming and shouting and then, just like that, he fell asleep. It was horrible to watch your child so distressed and then just give up, through no choice of his own. We then had to leave George in a room full of strangers doing something to him that we really didn’t understand. When he eventually came round we were so pleased to see him. He was not pleased to see us, he held us accountable for what had happened to him. This hurt us badly but had to make light of the situation.

After George had his hickman line he headed straight for chemo. This was an unknown subject to us, we didn’t know how he would react to it all. Like a true trooper he just adapted to it. It was his parents that found it hard. We were so worried about how it would effect him. We had to explain to him, with the help of a Great Ormond Street Hospital (GOSH) play specialist, that he would loose his hair. The day that we told him that he would loose his hair his cousins came to visit him. George wanted to go to the toilet when they were there. So he pulled the curtain around the bed and went on the bed pan. As he was sitting there, connected to the chemo, having a poo, in the room with everyone there he said “And after all this I am going to have no hair”. We do not know whether he was trying to make light of it or whether he thought the whole thing funny and strange, we will never know. We didn’t know whether to laugh or cry.

After the first course of chemo Great Ormond Street Hospital (GOSH) told us what to expect from George and what to do in certain situations. They are always so good at explaining to you what will happen and what to expect. Whenever we stayed there (which was often) we always felt so safe and secure . In fact, when we left to go home we wanted to say “please can we stay until the next lot of chemo is due” as we felt so lost without them at home . It was like a home from home and every member of staff was so kind and caring to both George and us.

Test result days are always very bad days for parents. You always want to hear that it is good news, but the odds are always against you so, you always expect bad news. All of George’s results came back and we were taken into a room and told the worst thing that a parent can ever imagine. Let’s be honest, no parent ever imagines that what is happening to us will never happen to them. You just have to get on with it and be strong for your child.

Georges’ first lot of chemo was 2 to 3 days at Great Ormond Street Hospital (GOSH) then 7 days at home. Our time at home was never guaranteed. This was due to having to go to our local hospital for blood or platelets. If George got a temperature we would have to stay in the local hospital so he could have antibiotics via his Hickman line. These stays in the local could be up to 5 days at a time. We also had the Community Team coming round on a regular basis to take bloods and to change his hickman line dressing. This procedure George absolutely hated. It should have only taken 5-10 minutes, but George would get very upset as it hurt him. It could take up to an hour for this to be done. He would often scream, shout and cry at us. We felt so helpless, as it had to be changed. George would often tell us that he hated us when he was having that done. He would insist on one of us (usually his mum) to leave the room and he would promise to do it then. He would be in the front room crying because of what was being done (his mum/dad would be in the kitchen crying too).

The next stage of treatment was GCSF injections. This was to boost George’s blood counts for the stem cell harvest. The injection was done everyday for about 9 days. Then George was admitted to Great Ormond Street Hospital (GOSH) for his vascath (a tube was fitted into his groin so that his stem cells could be removed) to be inserted under surgery. He did not enjoy having this done at all. He hated the thought of having the vascath fitted and also hated having the injections. He had the stem cell harvest over a couple of days. This was done by connecting the vascath to a machine and removing his stem cells. When he had to have the vascath removed he ran into the bathroom and held onto the bath rail. We could not get him to let go. In the end two nurses had to assist us. Eventually they managed to remove the vascath. Yet again George was so distraught. It was so hard for him to understand that all of this was being done to help him. He was going through so much and none of it was pleasant.

More tests, that are not nice for George. We thought, he's done the tests so now we have to hear the results. They are all going ok - lets move to the next stage quickly before anything changes!

The next stage of treatment was the operation to remove the tumour. The day before the surgery we met with the surgeon who was to perform the operation. We were informed that there was a 2% chance that George may not survive the operation. This hit us hard. It had never entered our mind that there was that risk. The surgeon kept on telling us that they have to inform parents of this and that we should not worry. Easier said than done. We now realise that whenever you have an operation there is always a certain risk involved but when it is your son, having such major surgery, you are not thinking rationally. George went down first thing in the morning. After he had his pre-med he was acting like he was a bit drunk. We walked with him while he was being wheeled down to theatre. When asked what his name was he said Jack (he was messing around) Just before we left him he started to sing the song “Sandra Dee” from the film Grease. All of the surgery team were laughing at him. We kissed him good-bye, trying to hide our tears, as we did not want to worry him. At some stage during the operation we were called in to see one of the consultants. We obviously were expecting to be told the worse. We were informed that the tumour had attached itself to one of George’s kidneys. They had been trying to “shave off” the tumour around the kidney but there might be a chance that they would have to remove his kidney. We never thought that we would be so flippant about one of George’s kidneys. We just said “take the kidney”, he’d been down in surgery so long we just wanted him back with us. We got the final call to say that surgery had finished. On the way to get George we bumped into his surgeon. He informed us that it had been 95% successful. We both thanked him and both kissed him, we were so happy that George was OK. The operation had taken 11 hours. George was very unwell for a couple of weeks after surgery. The staff on the surgical ward were brilliant. They took care of George and also us.

George had yet more tests. The disease was still in his bone marrow. He would have to have more chemo than we had thought. That was not good, but if it did the job then it would be well worth it.

George’s next lot of chemo was to consist of 4 courses. The chemo was to be administered over 1 week and then 3 weeks off. We had to go to Great Ormond Street Hospital (GOSH) for an hour's chemo for 4 days, then be admitted to the ward for 2 nights. When at home George would get a high temperature and we would have to spend approx 5 days at our local hospital.

George then had to have stem cell removal again, as the previous one may have been diseased. This was not a happy time, as George hated everything about the stem cell removal.

In February George was admitted to Great Ormond Street Hospital (GOSH) for his high level chemo. This was to be a very hard time for him. We were admitted on Valentine's Day. His chemo started the next day. It was to be oral chemo. We were told that this would be a very difficult time as George would become very poorly and go off his food completely. To make matters worse we were told that he could get a very bad side effect that could affect his liver. This could be life threatening (although no child had been lost through this, there was always a chance). We were expecting to be away from home for approximately 7 weeks. The chemo had to be administered orally. George had to take the chemo on a spoon and drink/eat it. During the day this was not to bad, but at night we felt so bad waking him up and feeding him something that could save him but at same time it could damage him so badly. George went off food and drink completely. He had to have a feed tube fitted. This meant a tube had to be put down his nose, that then went straight into his stomach. It was not good having to tell him this. Obviously he did not want it done. As usual he put up his usual fight. Thank God we had it fitted, because he would not have survived if he did not have his feed tube. It was the only thing that was keeping him going. He never drank anything, let alone eating. During this time George had his stem cell retrieval. This went well and was very easy for him. After approx 7 weeks George was well enough to come home. We had to be trained on the feed tube and were very nervous when we left. When we got home it felt so strange. Everything looked so unreal. We put George to bed and managed to attach him to his feed (we hoped we'd done it correctly). George had the feed tube for a couple of months. It was great to be out and about with him. When out though you do get looked at. A young boy with no hair and a tube sticking out his nose stuck to his cheek. George dealt with it brilliantly, I think it was us that felt so “not normal”.

After George’s intensive chemo we were actually looking forward to his next lot of treatment. It seemed so easy after what he had been through. It was radiotherapy. This started May time. We would have to go for approx 3 weeks. Every day to University College Hospital. The journey wasn’t too bad as we managed to miss the rush hour appointment and had to be there late morning. George use to listen to his personal stereo on the way. It was Pop Party or Mary Poppins (we took him to the show and he loved it, so obviously he wanted the CD and he got it!). The radiotherapy only took a matter of minutes. The staff there were great and looked forward to George bringing his music with him, as he could have his treatment and listen to it at the same time. It was strange for us, as during this treatment, George was in another room from us. We had rarely been apart since he was first diagnosed.

Radiotherapy went well, George was back on anti-sickness medication, but was well apart from that. We then had to got back to Great Ormond Street Hospital (GOSH) for his next lot of treatment, which also looked pretty easy after all that he had been through.

On 7th August (will always remember that date as it’s our friend's birthday) George had his Hickman line removed. He decided not to tell anyone. He wanted it to be a surprise. Well more of a shock than a surprise. The removal of the Hickman line went ok. He got a temperature after having it removed. We were at home and had to go to our local hospital. They took his temperature and informed us that since he did not have his Hickman line they would have to fit a canula to take bloods. This did not go down to well with George. To him everything always seems to go wrong and this was just proof of that. He had the canula fitted, bloods taken and we eventually went home. The next day his big plan went into action. Since he had not told any member of his family that he had the Hickman line removed he said that he would meet some of them at the local swimming pool (if you have a Hickman line you can not get your upper body wet at all). When everyone arrived they could not work out what George was doing there with a towel wrapped around him. He then took the towel off and jumped into the pool. At first nobody knew what to do. Then they realised that he did not have his line in. They were so happy for him, it was such a great surprise to everyone. George was in his element. Later that day he decided to surprise more people. He was in his grandparents garden, fully clothed, sitting on the steps into their paddling pool. He pretended to mess around and fall into the pool. His aunt nearly had a heart attack and his great aunt just froze on the spot. They all thought that he had fallen into the water and still had his Hickman line. George jumped out of the pool, pulled his top up and said “where have my wiggley’s gone?" (that’s what children call the Hickman line). They all thought that they must have fallen off in the pool. He was so proud of himself that he had pulled off such a great stunt!

Oral chemo was his next lot of treatment. Although they call it oral chemo it is, apparently, more of an acid then chemo. This treatment’s only side effects were dry skin and very dry lips. George went back to school and loved it. He was able to see all his friends and be normal again. He would take his medication, then go off to school with his dry skin cream. We would meet him from school and say “did you apply your cream at break time” and he would say “yes”. We knew when he was lying because his lips were dry!

We went back to Great Ormond Street Hospital (GOSH) on Dec 8th 2006 to get George’s results. Yes yet again it was another dreaded results day. We waited in Elephant Day Care Center with George, acting normal, laughing and chatting to everyone, as if it was a normal day. Inside though, as a parent, you are just “cracking up”. You feel sick to the stomach and are sweating for no reason. We get called, George is with us all the time, and you go into that room acting normal but feeling so scared.

George’s results were fine. Thank God he was clear. We could relax. For a while.

We were told that we would not have to go back for test until March. 3 months without having to go to Great Ormond Street Hospital (GOSH); what would we do with our time? Time just passes you by when you are being normal!

The three of us went back in March and they were happy with George’s progress. His urine sample was weak but they were happy with the results.

On the way home George’s mum got a phone call to say that she had been offered a job, did she want to take it. Of course she did, everything was fine. Life was great we were just like everyone else now. We were all so happy on the way home, It was just great (to everyone else it was just normal life)

During our time at home ,any health concerns that George had which lasted for 1 to 2 weeks we had to take George to our local hospital. We did visit our local hospital on several occasions.

George’s 9th birthday was coming up. We had decided to buy him a puppy. Several days later we noticed a bump on his head. At first we thought he must have knocked it, if there is anyone that will bang their head it will be George. After a week the bump was still there. We decided to take him to the hospital. They saw him straight away. They were not to concerned but because of George’s history and our worries they referred us to Great Ormond Street Hospital (GOSH). That was then we started to panic. Neuroblastoma is renowned for coming back in the brain.

We went to Great Ormond Street Hospital (GOSH), all the way there George was saying “I can’t believe you are bringing me here when I have just banged my head”. We saw George’s Consultant, who felt his bump and then arranged an ultra sound. Yet again, we were in Elephant Day Care waiting for results. We kind of knew what the results were going to be but we hoped that they were not going to be our worst fears.

Our Consultant informed us that George had a tumour and that she was 95% certain that it was neuroblastoma; the disease had also spread to his bones. We can not put into words what we feel. Lost. Heartbroken. Helpless. No good. We feel that we are no good to George because we can not help him. The only people that should protect him cannot help him anymore. We are his parents. We should be protecting him, but we can’t, this is beyond our control. We should be able to help him, but we can’t help him here in England. His only hope is to go to America and hopefully people will help us. We don’t want to move him away from all his friends and family here, but what choice do we have. If George stays here he will have quality of life. If we take him to America he will have a chance at life.