Monday 27th August

George does not have much energy today. He is not his usual chatty self. He managed to go to the “lobby” to collect a parcel. He opened the parcel and was pleased with his gifts. We stayed in our room until 4pm. We then headed down to the dinning area to get George something to eat. He only wanted toast. We got this for him and to our delight he ate 2 slices. It is so strange, how happy you are, when your son eats two slices of toast. Ronald McD House had arranged a trip on the Fire Departments Boat. We all managed to squeeze into the bus. As usual the NYPD transported us, with their lights flashing! The boat trip was amazing. We saw the Statue of Liberty, Ellis Island and The Brooklyn Bridge. It was so nice to be out in the fresh air. The Fire Dept let the children dress up in their uniforms. George only had the helmet on for a few seconds and it was too heavy for him. George felt very tired and we could see he was not himself. He said that he enjoyed the trip. When we got home
George ate a whole packet of crisps. We read some of his much loved book and then he fell asleep. We have yet more tests ahead of us and do not know how we will get through it, but we will, because we have to, for George’s sake.

Saturday 25th & Sunday 26th August

Good old Ronald McD House had arranged a trip. We were all taken Bowling. We had such a nice time. Everyone was encouraging each other. George had a great time, but half way through he got really tired and was trying to sleep. When we got home George slept for a couple of hours. He eventually woke at about 10.30pm and stayed awake until approx 1am. Sunday arrived and no matter what we done, George would not eat. We tried everything. George just wants to stay in his room and sleep. We really hate to see him like this. We think that it could be the antibiotics. Our main concern is that the disease is spreading and that George has no energy because of this. George has to have his MIBG injection on Tuesday and then the MIBG Scan on Wednesday. We know that George will do well and be really good, whilst having all these tests. It is us, his parents that will be having trouble dealing with these tests, as we know, all tests lead to results.

Friday 24th August

George is able to walk now, with no help from us. His leg is so much better. Unfortunately, he is still not eating. We got a prescription from the hospital, for some medication that should encourage George to eat. We gave him this medicine as soon as we got it. It should take a couple of days to work. We really wish that it would work straight away. At the moment George is getting all his vitamins from vitamin enhanced water. It is so horrible seeing George with no energy. He should be running around, having fun. Instead he wants to stay in bed and just sleep. When George is feeling down, it makes us feel down also. We just want him to be his normal happy, funny and entertaining self.

Thursday 23rd August

We woke up and had to give George his first lot of IV Antibiotics. George watched our every move and made sure that we done everything right. He is still off his food and has not got a lot of energy. We had to go to the hospital to get a blood test and also a HAMA test. The HAMA test results will take a week. This is the test that will determined whether Georges body has rejected the 3F8. We got home from the hospital and just stayed in our room, watching George’s much loved Eastenders (sent from England).

Wednesday 22nd August

Thankfully George has not had a high temp for 24 hours. At last we can be allowed to go home. We will have to administer IV Antibiotics every 12 hours, but this is a small price to pay to get back to the Ronald McD House. We arrived home, to Ronald McD House and everyone we met was so pleased to see George. It was great to be back. We took delivery of the antibiotics and a nurse showed us how to administer them. George watched every thing that was happening. We feel sure that he knows more about how to administer the antibiotics then we do!

Tuesday 21st August

George had another high temp, but not too high. We were told that although the temperatures he was getting were high, they were gradually coming down. We had to take George for another x-ray. This was a lot easier then the last one, as his leg is not hurting as much. George walked around the ward today. He needed a lot of encouragement, but managed it, with help. George was very quiet today and he found it hard to concentrate on things. One of his nurses from Day Care brought him some books and this really perked him up. We got the x-ray results and they were fine. George’s Doctor arrived to see him and advised us that George would have to have an MIBG Scan. This was for two reasons. Firstly to see how the 3F8 had worked and secondly to get an even better look at the problem area. They are trying to sort out an appointment for us. Another scan, more dreaded results, we should be used to this by now. During the night, the Orthopaedic Doctor came round to check on George. He was under
the opinion that nothing new had shown up on the results of the Bone Scan and that he thought the problem was caused from the 3F8 treatment. In the morning, a Team of Orthopaedic Doctors came to visit George. They once again, informed us that they had studied the Bone Scan and could not find any reason for George’s leg problem.

Monday 20th August

Unfortunately George is still getting high temperatures. We are not allowed to leave the hospital until he has been free of a high temp for 24 hours. George’s Doctor arrived to see us. We tried not to panic. He informed us that the scan had not shown up any obvious reason for George’s leg pain. He informed us that neuroblastoma was still present in the area, but that it had not progressed, since the last scan. Yet again we were so relieved. The disease had not got worse in the area and that was our main concern. He told us that if the high temp continued then George’s hickman line maybe infected and have to be removed. George would hate to loose his hickman line. Having this line means he does not need to have any needles. All we wish for now is the high temp to stop. George was a lot better in himself today. He was able to walk to the play room, albeit with a little help. He did not need any pain relief for his leg, which was great. He still finds it hard to lift his leg, but it
looks like things are improving. George is still off his food. He did not eat anything today. We hope that it is because of the infection and high temp.

Saturday 18th and Sunday 19th August We would really love to wake up to George brushing his teeth and rushing off to summer camp. Instead we awoke to George’s IV pump bleeping. He was still fast asleep. We feel sure, that after a couple of years of having to attend hospital, George doesn’t even hear the bleeping machines anymore, as he has got used to them. George’s leg still hurts, but does appear to be improving. He has still managed to get high temperatures. George has been through so much. He is only 9 years old. Even an adult could not cope with what he has been through. George has coped so well. He is so brave and strong. We will cope with the results in the morning, no matter what they are, we will continue the fight for George.

Friday 17th August We got the results of George’s blood test today and he was low on HB. He had to have a blood transfusion. His leg pain is still there, but he is able to move his leg a bit better. The most important thing today, for George, is that the new High School Musical 2 film is being premiered on the Disney Channel. George has been talking about it for months. Since he woke up, he has been counting the hours until he sees the new film. George is really concerned that he will not be able to hear all the film, as he is sharing a room! Our main concern is that every time the curtain was pulled back, to George’s section of the room, we knew that someone was entering to see him. Every time this happened we started to panic, as we thought that it was George’s Doctor with the results. George’s Doctor never came to see us, therefore we had no results. Some people may think we should have chased him up and asked for the results. We think that if he knew the results he would have told us. Also, not
knowing is great, as we can, yet again, pretend that everything is fine. When you are in the situation that we are in any day that can be “normal” is so great. So we are going to enjoy being “normal” over the weekend and hopefully no Doctors will come and pull that curtain back and give us the fright of our lives. George really enjoyed the film and we feel sure that he will be talking about it for days.

Thursday 16th August We were at the hospital for 8am. George had to have medication through his hickman line. We were told to return to the hospital at 12 O’clock for the scan. On the way home we came up with a plan to help George to eat. We went to McDonald’s and ordered him breakfast, but he would not eat it. We were so disappointed. We returned to the house. George wanted to go to the Summer Camp, in the Playroom. We took him down there in his wheelchair. He told us that we could leave him there and collect him on our way to the hospital (that’s more like the George we know!).We left our room and went and got George from the playroom. We then went to the hospital and George had his scan. As usual he lay very still. We were told the results could take 1 to 2 days. Whilst there we had a phone call from the Paediatric Day Care. We were informed that George’s blood results had shown that he had an infection. We had to return there immediately. Once there we were informed that George had bacteria in his
blood and would have to be admitted to Hospital for IV Antibiotics. This was the reason for his high temperature. George got upset when he realised that he would have to stay in hospital. He really wanted to return to Ronald McDonald House and go to Summer Camp. We were moved to the Paediatric Ward. We had to share a room divided by a curtain . George was not impressed, as this had never happened before. All the times we were at Great Ormond Street and his local Hospital, he always had his own room. When we last stayed at Memorial, George was in Isolation, so he had his own room. We had to hide our laughter. George was saying “Why do we have to share. Can’t I have my own room?” He finally settled in and actually ate a packet of crisps and a bowl of Cheerios, so we were happy (even if he was not!). George still got a temperature that night and he woke with leg pain.

Wednesday 15th August We were so glad to be having a day off from the hospital. Then we got a phone call advising us that George had been booked in for a Bone Scan on Thursday. We then started to panic, yet again. George’s temperature was still high and his leg still hurt. He still did not want to eat. We told him he could eat whatever he wanted. He told us he wanted Burger King. We got him his much loved Burger King, but he only ate a few chips and took one bite of the chicken strips. We stayed in our room for the day, as usual watching DVD and playing games. George seemed to have a little more energy and did not want to go sleep. Eventually he feel to sleep. Once again we stayed up. We kept encouraging each other to stay positive, as this is the only way to get through it all.

Tuesday 14th August We did not want to get out of bed this morning. Just wanted to stay there all day and pretend that everything is fine. We can not put into words how scared we were when we arrived at the hospital. The scan results had not been received when we first got there. George had to have more bloods taken and IV Antibiotics. George’s Doctor then arrived and told us that the scan results showed up no reason for George’s leg pain. We were so relieved. We were so worried that George may have a tumour on his spine, hip or leg. George’s leg pain had baffled the Doctors. We were advised to go home and return to the hospital on Thursday. We were gone in a flash! George seems to be more of himself today. He does not seem so tired. He was able to stand and took a couple of steps, with some help. He is still not eating though and said he felt a bit sick. His temperature is still high, so we are having to giving him Paracetamol.

Monday 13th August We woke up and were so worried about the day ahead of us. George was awake during the night with pain. We really wish that the pain would just go away. We arrived at the hospital and George was examined. He started to cry whilst being examined. The nurse took George’s temperature and it was really high. We were told that George would have to have a x-ray of his leg. George then had bloods taken and was given IV antibiotics and pain relief. We took George to have his x-ray taken. George screamed with pain when we put him on the bed. He had to lay on his back with his legs straight. He found this so difficult, as it hurts so much when he moves his leg. George cried throughout the x-ray. It was heartbreaking seeing him so upset and not being able to take the pain away. The xray results came back and showed no reason for George’s leg pain. We then had to take George for a MRI Scan of his back. This scan took about an hour. George was so good. He had to lie so still, which was painful
for him. He got upset about half way through the scan, but managed to stay calm. As the scan was taken at about 5pm the results would not be back until tomorrow. We were told to take George home, but if his temperature hit 39 to take him straight to Urgent Care. We did not get much sleep that night, as we were so worried about the scan results and we had to take George’s temperature every few hours.

Sunday 12th August Unfortunately, George woke up through the night and needless to say the pain was still there Sunday. It did not appear to have eased at all. We managed to encourage George to get in his wheelchair and go and see the children downstairs. As we thought this may do him some good. It was so painful for him getting in the wheelchair. We managed to take him downstairs, but he just wanted to go back to bed. He spent all day in bed. He did not want to eat anything. We managed to get him to drink. George went to sleep quite early in the evening. We stayed up, unable to sleep. We dread to think what will happen tomorrow. We have to stay positive, otherwise we will never get through the day.

Saturday 11th August The weekend arrived and yet again we find ourselves hoping that it will never end, as we are so scared of how George will feel on Sunday. His pain had not eased at all by the end of Saturday night. He is finding it so difficult to get comfortable. He does not want to drink, as he knows that this will make him want to go to the toilet. Going to the toilet is so difficult, as even moving his legs apart for him to use the urine bottle is painful. We spent Saturday in our room. George in bed. The only thing George wanted to do was watch telly. He watched several episodes of his much loved Dr Who. After this we told him he could watch whatever he wanted. He did not know what he wanted to watch, which is so unlike George. We flicked through the unlimited amount of channels, trying to find something that would take his mind off the pain, or at least make it a little bit bearable for him. All we can do is massage, apply hot packs and give him pain relief. We try to make him comfortable and
smother him with our love. We can only hope that the pain will be gone in the morning. We would do anything to make the pain go away.

Friday 10th August Friday arrived, George had his last 3F8 of this cycle. George slept through most of the treatment exhausted from the weeks treatment and the pain in his leg. He still can not walk. Even lying still in bed makes his leg hurt. Sitting up upsets him as it causes pain. He has been lying down mostly since the pain started. Unable to get comfortable, George becomes frustrated and upset. Who can blame him?.

Thursday 9th, Wednesday 8th, Tuesday 7th August The rest of the week was more or less the same as last week. George was in pain, in all different places, but recovered once home, with intermittent pain being helped by painkillers, hot packs and massages. On Wednesday George got severe pain in the top part of his left leg. He is unable to stand or put any weight on the leg at all. This pain did not ease and he still had the pain Thursday morning. George also had severe neck pain. We were not to worried, as we thought this was a good sign. We never ever thought that our son in pain would be a good sign, what parent would. George was examined and his nurse seemed concerned about his leg pain. She left us and a few minutes later George’s doctor arrived. The sight of the Doctor was enough to make us panic. He examined George. He told us that he was almost certain that the leg pain was due to 3F8. He was concerned though as the pain should not have lasted this long. He was obviously concerned that the disease may have progressed. He
informed us that the pain caused by the 3F8 should be gone by Sunday. Therefore, if the pain was still there, on Sunday that George would have to return to the hospital on Monday for tests. We were totally devastated. George then fell to sleep. We both just broke down and cried. We could not believe we had this terrible worry hanging over us for the next few days.

George still had his severe leg pain throughout the night. He said the pain kept moving around the top of his leg. He was very upset, agitated and so very tired.

Monday 6th August We started the week very anxious. The thought is never far from our mind that if George does not get any pain, then the 3F8 is not working. We checked in at the hospital and were informed that George would be having a blood test for HAMA (this is to check to see if his body is fighting against the 3F8). This was a shock to us, as we thought the test was not going to be done for a few weeks. We were told that the results would come back later that day. If the hospital did not contact us then we should just show up for the 3F8 the next day. They told us that if we did hear from them then the 3F8 treatment would stop. We became so worried, as waiting for test results is so scary. Unfortunately, George did not get any pain from the treatment that day. To be honest we were relieved for him, as he did not feel any pain. We now had the worry that the 3F8 may not be working. Every time our phone rang our hearts dropped. Thank god we did not receive the phone call. George’s results came back
okay.

Saturday 4th and Sunday 5th August The weekend approached and Ronald McDonald House organised a free visit to a Summer Camp. The NYPD once again showed their support by giving a display of their dog handling skills, even though the heat soared down on us. George was asked to be one of the officers helpers, which he really enjoyed. We played Crazy Golf and practice Baseball. It was great for George to get out of New York for the day , see some countryside and relax after a traumatic week for him.

Friday 3rd, Thursday 2nd and Wednesday 1st August The rest of the week continued in much the same way. The Dilaudit would ease the pain a bit, but not totally. George began to look forward to receiving the Dilaudit, as he said it made him feel warm and relaxed. He always knows when to ask for it now. A side effect of the Dilaudit is to become very emotional. After just receiving it George would become so loving and caring, thanking everyone for helping him. In the evenings it effected him differently. He would get upset and cry at the slightest thing. He would also become very argumentative. This is hard to watch, as we know that it is not his fault he is feeling that way, but the medication.

Tuesday 31st July Tuesday morning and more Glucan. George was in pain and felt too weak to walk. George had pain on his hip, so a hot pack was pressed against the area, as he got into his wheelchair. We arrived at the hospital and went to our room. Treatment started. After the 3F8 had been infused, George started to get pain. This time the pain was as bad as yesterday but, this time in more places. Crying from his bed our little boy was saying ‘It hurts, it really hurts’. We continued to comfort him, but another infusion of Dilaudit, to try and ease George’s suffering. The bleeping machine, beside George, warned us that his oxygen level was low. Oxygen was given through a mask. The pain killer kicked in and the pain eased little by little. Then a little voice from behind the mask said to us “I love you, thank you for looking after me“. Holding back the tears we replied “You don’t have to thank us, we are your Mummy and Daddy, we would do anything for you.”

After the pain had nearly gone and his oxygen level stabilised, we were able to leave. We got George out of bed, but he was very groggy from the Dilaudit. We helped George into his wheelchair and out the corner of his eye he saw one of the Nurse Practitioners. George whispered in her ear “Thank you for organising this for me”. Our little soldier, after all that he had been through, was still thinking of others. We got back to Ronald House. We lay down on the bed with George and he fell asleep. When George awoke he was anxious to do some activity in the house. Off to the playroom he went, his happy little self. George seemed to be getting intermittent pains after his afternoon sleep and at bed time. We are able to help with pain killers, massages and placing hot pads on the areas that hurt.

Monday 30th July We awoke today to the 3F8 treatment just hours away. It was an early start. We woke George up, to a bottle of Glucan. George drank the Glucan with ease today. We then set off to the hospital. The journey seemed long today with anticipation running through our minds, the emotional turmoil comes hand in hand with the disease. First point of call was the IV Room for the finger stick blood test. George has now got his own routine.“1, 2, 3 Go” he says to the nurse. A squeeze of his little finger, to get blood for the test and then back in the waiting area to see the doctor. We were called in, observations were taken. Georges tumour was measured. The tumour was slightly smaller, then the last time. We all sat down and talked about the side effects. Itchy nose, hives and pain. Pain in the stomach, back of the knees feet, joints, sole of feet, just about everywhere in the body. Fever and high temperature, which would mean a trip to Urgent Care. Tiredness, the list was endless. We were
advised to give warm baths and hot packs on the areas to help ease the pain. These side effects could happen throughout the day and into the night. George’s reaction to this was not panic but ‘Oh great’. We had to make a quick dash to the chemist to pick up some painkillers, for when we left the hospital.

We spent some time in the playroom and was then called into our room to start the 3F8. George was given painkillers, then the 3F8 was administered. The pain would not start until the 3F8 was administered. It took about 30 minutes. One of the signs of the body rejecting the 3F8 is no pain, as this could mean that the body has rejected the antibody. A terrible situation to be in. As you do not want your child to be in pain, but at the same time you want to see that the antibody has not been rejected. George started to get pain in his stomach. This then made its way to his back, chest, shoulders and neck. Even with the Dilaudit (pain killer) our child was still in great pain, “Why me?” he cried “It really hurts”. He just wanted to be hugged by us. All we could do was massage, where the pain was and put hot packs on these areas. Helpless to the pain he was going through. George’s oxygen levels started to drop, so oxygen was needed, to try and bring it back to normal . He started to get
tired and weak.

The pain eventually eased and we were discharged. George went home in a wheelchair, exhausted from his ordeal. George was determined to do some work on the computer, but his body just needed to rest. George started to get agitated, he was worn out, tired and said he felt sick. We lay on the bed with George and he fell to sleep. George did not awake until 10 o clock that night . He was very hungry and full of energy. He did some drawing, watched some TV. George went to bed, but he started to get severe pain in his back. He had his painkillers. All we could do was to massage his back and place hot pads on the area that was causing him pain, until he eventually fell asleep.

Saturday 28th and Sunday 29th July The weekend was a very worrying one. 3F8 treatment starts on Monday and we are fully aware of the pain and side effects of the antibody treatment .George continued to take his Glucan and we decided to make the weekend as fun as possible for George, the calm before the storm. The skin around George’s tumour has started to flake away. The bright red skin colouration is now turning brown, as we continue to apply cream, to ease any discomfort around the area. We cannot help but be worried about the tumour, this foreign body on his head. That is constantly there to remind George and ourselves of this terrible disease. There are so many brave people in the house we are staying in. From the children who are here for treatment, to the parents and relations. All giving help, support and advice to each other. This gives everybody here great strength .

Friday 27th July George woke up and had his Glucan for breakfast with no problems. We then headed off to the hospital for blood tests. They all came back low, but no transfusions were needed, to our relief. Even blood tests can be very time consuming at the hospital and today was no exception.

Thurs 26th July George awoke to the bottle of Glucan, which he had to confront. How was George going to attempt to drink this huge drink first thing in the morning. This time he drank it through a straw and to our delight it seemed to make it a lot easier for him. It only took 35 minutes for him to drink. George had an hour of no food and drink which he took in his stride. We stayed in the House for the day. As usual it was to hot to venture out into the stifling heat .

Wednesday 25 July We woke up today, to the sound of teeth being brushed. George had got himself up and was getting ready to go down to the playroom. We could not believe it. George never gets up and gets himself ready. It just shows how much he enjoys staying here. He talked about the Ronald McDonald House trip to the Bronx Zoo that we were going on, later that day. He insisted that we stay in bed until he left. Once he had gone we got straight up. He had left us a massive note saying “Dear Mummy and Daddy, Have gone to camp (playroom). I’ll meet you in the lobby at 11.45 for trip. Don’t forget pack lunch. Lots of love George x We done as we were told. The medication was picked up from the hospital. Sandwiches were made. We met George in the lobby (he use to call it Reception when we first got here - he now calls it the lobby as that is what you say in America!). The trip to the Zoo was great. We travelled there in the NYPD bus. We never realised how much the NYPD and FDNY do for free, for the Ronald McD House. The Zoo was so busy, as it was a free admission day. When we got home George had to have his first lot of Glucan. He cannot eat or drink an hour before or after taking the Glucan. He said that it was horrible. It is very thick. When we insisted that he drink it, he became very upset. He was crying and asking “Why does this have to happen to me?”. It is so difficult to find an answer to this question. It is also very upsetting when he asks this question. It took 50 minutes for George to drink the Glucan. As soon as he finished, as quick as a shot, he wanted to go down to the Computer Room. We hope that George will drink the Glucan much quicker next time. As the longer it takes him to drink it, the longer he has to go without food and drink.

Tuesday 24 July We went to the hospital. We were, as usual, expecting George’s bloods to have gone down, but they had not. It would appear that they are slowing creeping up. Which is brilliant. We were informed that George would indeed be starting his Glucan the next day. We were also told the amount he would have to drink, 243ml. We would have to collect this from the hospital in the morning. We were once again informed that George would be in great pain from the 3F8. They prescribed George some pain killers to start taking immediately, in order to get into his system before the 3F8 does. We have not been given the results to the tests. We feel sure that they would have told us if the results had been bad. We will have to wait and see George’s Doctor.

Monday 23rd July Woke up to a massive down pour of rain, that did not stop all day. As George said “Everything is big in America, even the rain”. We were taken to a school show in the morning, The Wizard of Oz. It was performed by children younger then George, which he found funny.

Saturday 21 and Sunday 22 July Over the weekend we had a very relaxing time. It was, as usual, very hot. On Saturday there was a BBQ down by The Hudson River, which was being organised by the NY Fire Department. We were taken there in a school bus. This delighted George, as it was the same as the school bus in the cartoon programme The Simpsons. It was great to spend the afternoon by the river. There was a band and some entertainment for the children.

Friday 20 July We went to the hospital for George’s blood test. To our surprise they were ok and have started to come up, a little. We were not seen by our Doctor, so still no news on results. We do not have to go back to the hospital until Tuesday. We returned home, where they had yet more activities for the children. George is really enjoying the company of all the other children.

Thurs 19 July We had to go to the hospital for blood tests today. On our way out of Ronald McD House we were told that they were having a Christmas dinner at 6pm. While at the hospital Georges special guest from GOSH arrived. George and ourselves really enjoyed having someone from home seeing what was going on at our new hospital. George had a blood test and his hb was 8.1. The hospital normally transfusion at 8. We were told that they thought it best that he had a transfusion, as his bloods were dropping. George got really upset, as he knew that if he had a transfusion he would miss the party. They decided to let us go home and come back in the morning for another blood test (hopefully George’s hb count may go up over night). George’s white counts were also low, so we would have to give him GCSF injections to boost this. George had a great time at the party.

Wed 18 July We got a phone call in the morning from George’s Doctor. He informed us that George would not be starting the treatment this week, as they were unable to fit him on the programme. We were very disappointed. We are fully aware of how quick this terrible disease can spread, but what can we do but hope and pray that all will be fine. We were told that the treatment will start next Wednesday instead. From Wednesday onwards George will have to have his Glucan medicine daily. He will then start the 3F8 on the following Monday. He will have the treatment for 2 weeks (Monday to Friday only). They would like to do 4 courses of this treatment. They will do tests at the end of the first course to see how it is working. Thankfully, at the house, they have started a Summer Camp. They have activities all day long for the children. We were really happy that George was mixing with all the children and having fun, but we missed him so much. He kept ringing us on the internal phone. George’s nurse from Great Ormond Street came over and spent the evening with us. It was so great to chat to someone from home. It was also nice for someone else to see what it is like staying here. George was far too busy to chat for too long to his guest, as he was having too much fun with all the other children, but he did keep on coming over to us, checking in every now and then!

Tues 17 July We went to the hospital, for a blood test. Results were okay, but are slowly dropping. George then had to have a heart echo. He does not mind having this test, as it does not involve being put to sleep or needles. We were seen by George’s Doctor. George will start the 3F8 the next day. The hospital were trying to fit George into their schedule, as they are very busy. We were advised to return to the hospital mid morning on Wednesday, if we did not hear from them in the mean time. We were not told the results from George’s test, as they were not back yet. George is really enjoying life at Ronald McDonald House. He is now back to his usual self. They have activities throughout the day. He has started to join in and is having a great time. We were just getting on the Ronald McDonald bus, to go to the ASPCA (RSPCA to us) and one of George’s nurses from Great Ormond Street appeared beside us. We were delighted to see her. We knew that she was coming to New York and she had told us that she would pop in and see us. George was really pleased to see her, but unfortunately he still wanted to go on the trip. We made arrangements to meet up the next day. George loved going to the ASPCA, he really loves animals.

Monday 16th July It is so great to see George back to his usual self. Eating well, a lot more energy and just being his usual silly self. Today we had a day off from the hospital. The House were doing a trip to The Little Shop of Crafts. The children were allowed to choose an item of pottery. They were then able to paint it. George chose a lovely dog, asleep in it’s basket (no surprise there, as he loves his dogs). It was then glazed. It came out looking brilliant. On the way out of the shop, George realised that you can make your own Teddy. We feel sure that we will have to go back there again. The dog, that George painted, now sits proudly upon the TV in our room.

Sunday 15 July George wanted to go to a certain shop. He had heard that this shop sold The Simpsons Action Figures. We had to get the bus, as this shop was quite a distance away. No surprise to us, but we got on the wrong bus! We eventually got there and they didn’t have what he wanted. We came across a Virgin Store and he found that they sold his beloved Harry Potter Action Figures. Needless to say he bought what he really wanted. He was so happy with his bag of goodies. We were waiting at the bus stop to come home and after a while realised that we were actually at the wrong bus stop! It was so hot all we wanted to do was get on the bus and feel the air con! When we got home George played with his new action figures and then searched the net to see if you could buy them in England and if any new figures were coming out on sale. He went to bed a happy boy. Our weekend has now finished. We have not done too much, but have had a great time together.

Saturday 14 July It is so hot outside that we don’t want to go out. So we didn‘t. We had a lovely day, at home, in our small room, spending time together.. We watched DVD’s that were sent from home (English programmes such as Dr Who and Eastenders). George really enjoyed watching them. George also managed to speak to several people at home via the computer and he loved that. We have had a very lazy day, so tomorrow we will go out and have some fun. Who knows what will happen next week, but we have to live day to day, so let’s make the most of that.

Friday 13 July (not a good sign) George needed to have a CT Scan today. At 6.45am we had to give George medication to protect his thyroid gland. We had an 8.30 appointment. Only one of us could go in. It was not fare that George had to choose, so we made the decision for him. He had the scan and was doing really well. He started to panic just near the end, as he thought his line was going to be pulled out, as the machine had moved it. He got really upset, but managed to continue with the test. It is so difficult seeing him getting upset with tests, when we know that they have to be done. How can you explain to your 9 year old son, that something that is not nice, are things you have to do to make you better? We got home early. We decided to go to the Natural History Museum. We were told that it was walking distance (20 minute walk). We had only been walking for about 10 minutes and knew that George could not walk all the way. It was so hot. We got a cab to the Museum. George had such a great time. He wanted to take pictures of everything that was there. We had to walk through Central Park to get home. George was feeling hot, so he took his baseball cap off. After about 5 minutes he started to cry. We asked what was wrong and he told us “All the kids are looking at me”. We told him to ignore the children. He said “Their Mums and Dads are looking at me as well”. George wanted to put his baseball cap back on. As usual we tried to make light of the situation.

Thur 12 July Today we had to take George to the hospital to have a test he really hates. The bone marrow test. George hates this test as he has to be given anaesthetic for this procedure. We think he hates it for two reasons. He hates needles and he knows that this is what they use to check his bone marrow. He also hates to loose control and that is why he does not like being put to sleep. He was doing really well. We were playing games and having a good time. Then he was called into the room. The nurses asked him to get onto the bed and he said he would not get on the bed until his doctor arrived. He was just delaying things and who could blame him. His doctor arrived and he got on the bed. He kept saying “Mummy Daddy I’m scared”. What can we do. He had to have this test. As he was given the anaesthetic we just kept saying “think of happy thoughts and you will wake up happy. Think of Tilly and everyone at home that loves you so much”. George went limp and he was asleep. We hate leaving him like that, so alone. The procedure only takes about 15 minutes, but it seems a lot longer. George woke up, he was a bit groggy but he still managed to say that he wanted McDonalds!

Wed 11th July We headed to the hospital with such worry on our minds. George was his usual happy self (unaware of what is happening). George had a blood test. The results were quite low, he would need a platelet transfusion and he would also need to start having the GCSF again. He had his last radiotherapy treatment. We then got called in to see his Doctor. He is such a lovely man. He explained that the last lot of chemo had not achieved what they had all hoped for. We all came to the decision to let George have the treatment we came here for. It is called 3F8 antibody with Beta-Glucan. We are pleased that George will be receiving this treatment. We only wish that he would be going into this next phase of treatment clear of neuroblastoma. As George’s parents we have to do what we can to help him fight this terrible disease. That is why we brought him here. George has received so much chemo and the neuroblastoma cells are still fighting against this. If we try something new then hopefully it will work. Our main worry is that, everyday that passes us, the neuroblastoma is growing and taking over his body. We sometimes look at him and can’t understand why this is happening to such a funny, outgoing, loving and sweet boy.

Tuesday 10th July Today George only had to go to the hospital to receive his radiotherapy. He had his treatment. Tomorrow will be his last day to receive radiotherapy. He told the staff there that he would miss coming to see them everyday and having a little lie down and time to relax! They have told us all along that they think George is very sweet. They have been very kind to us. In the evening everyone at Ronald McDonald House were taken to see a special screening of Harry Potter. George was delighted as he is a big Harry Potter fan and has been talking about this new film. It was all very exciting for him, as he knew we were seeing the film before everyone else in America, but more importantly we were seeing it before everyone back at home. He had a great time and loved the film. He talked about it constantly until he fell asleep. We are seeing George’s doctor in the morning. We are so worried about what he will tell us. We knew that we would not get much sleep. It’s so hard to fall asleep when you have such a big worry on your mind. Things always seem so bad when you are trying to sleep. We are trying to stick to the expression “things will seem better in the morning”. We truly hope that they are.

Monday 9 July We awoke this morning feeling very nervous and scarred. George is in brilliant form and has loads of energy and chit chat. The walk to the hospital was different from usual. We were going for test results. We would have been so much happier if George was receiving treatment today. We arrived for our appointment and George had his blood taken for testing, we never got seen by the doctor as they were very busy. We had to leave and take George for his radiotherapy. You always worry when you are kept waiting, as your mind starts working over time and you begin to worry more. We arrived back and were seen by a Doctor. He informed us that the MIBG scan results were more or less the same as the MIBG scan George had at Great Ormond Street on 26 April. This could be for a couple of reasons. The most worrying is that the chemo George had just received had not done anything to fight the neuroblastoma cells. Another reason could be that maybe, since the scan at Great Ormond Street the disease had progressed and that the recent chemo may have worked. We explained that George had received chemo in England before we left. We were advised that the chemo there had been very mild and that maybe it had not had a great effect on the neuroblastoma cells. Yet again, we can not put into words how this made us feel. We really thought that this chemo would have an effect on the neuroblastoma cells. The Doctor explained that George had received so many different types of very strong chemo and still the bad cells were there. He told us that they would be discussing George’s case at the weekly meeting that the Neuroblastoma Team have every week. He also let us know that there were other options, but that he would have to check that George could receive these treatments. We came out of the meeting feeling very upset. It is so hard to keep getting up after so many knock backs. George was on the computer in the waiting room. He saw us coming out and really wanted us to see what he was doing. We managed to pick ourselves up and share with him what he was exploring on the internet. We have an appointment on Wednesday morning at the hospital. We hope that tomorrow lasts forever

Sunday 8 July We asked George what he wanted to do for the day. He decided he wanted to go to Time Square. He wanted to watch a film at the cinema and go to Toys R Us (one of the nurses at the hospital was kind enough to give George a Toys R Us voucher). We had a great day out. George really enjoyed the film. He always loves going to the cinema. We then went to Toys R Us and George spent the voucher within minutes. He managed to get things that he really wanted. He had his photo taken. They then added in the cast of High School Musical to this photo. They then printed it out onto a jigsaw puzzle. George thought it was the best thing ever. He asked “Who do you think is the best looking?” We feel sure that he knew what the answer would be! We are absolutely dreading taking him to the hospital in the morning. He needs to have a blood test, but our obvious concern is the dreaded results. We can only keep thinking positive thoughts, but sometimes this is so hard to do. The worry and dread are never far from our minds. We have made the most of our day off and all three of us have had a really special day.

Saturday 7 July Today we had to go to the hospital for George’s appointment at Nuclear Medicines. The scan was to take 1 ½ to 2 hours. George lay still all the way through (the best boy ever as usual). We always get so nervous when George is having this scan, as we are always so worried about the results. As George has the scan you can see the picture, on screen, that the scan is producing. His head was scanned first. We could clearly see the tumour showing itself. We had been warned that the tumour would show on the MIBG scan, as the radiotherapy will continue to work for several weeks after finishing treatment. We both decided that we would not look at the screen again. We were both so scared that we might see things that we did not want to see. We read George one of his books while he had the rest of the scan. Since we have a free day, from hospital tomorrow, we are going to try and put results to the back of our minds and just enjoy our day with George.

Friday 6 July George had to attend Urgent Care for blood tests. The results came back and his white counts are up. We are so pleased. We can now stop the GSCF. We went to radiotherapy. George then had to have his MIBG injection. In England George use to have a canula fitted and then the injection would be given through this. This procedure really stings and often makes George cry. We were delighted to hear that in the U.S. they injection into his hickman line. So this procedure for once was easy, much to the delight of George.

Thursday 5 July We had to go to Urgent Care to have George’s blood test. George managed the walk to the hospital today. He looks very tired. We expected him to have platelets. We were told that he needed both HB and platelets. They were both very low. We took George to radiotherapy, while the bloods were being ordered. Once we got back to Urgent Care we were told to start George on the GCSF once again. We were also told that George had been booked in for a Scan on Saturday. This is the MIBG scan that takes approx 2 hours. George would have to go to the hospital on Friday for the MIBG injection. This injection highlights the nueroblastma cells and then the scan can pick up on them. We were both shocked that this had been done at such short notice. We were told that they had booked these appointments for someone else and that the people had cancelled, so there was an opportunity for George to have the time slot instead. We are both obviously very worried about the test, as after a test comes results. George was so tired that he fell asleep while having the transfusions (very unlike him). He woke up in time for us to leave the hospital, which was just after 7.30pm. George was full of energy when we got back to the house. He was on the internet for a couple of hours looking up Dr Who stuff. George stayed up until mid night (as he had his little nap earlier).

Wednesday 4 July Independence Day. A whole day off from the Hospital! Everyone from the house were collected by NYPD and taken to a bridge, down by the river for a BBQ. After eating such lovely food we all watched the Independence Day fireworks. The NYPD are so good to give up their time and help families like us. The fireworks were amazing. George loves fireworks and really enjoyed the display. His favourite ones were the ones in the shape of a happy face.

Tuesday 3 July George went to radiotherapy. We thought he was well enough to walk the 10 minutes to the hospital, but about half way there he got very tired. We then went to Paediatric Ward for blood test. We were informed that George’s white blood and neutrofil count had risen enough for us to stop the GCSF injections. She also informed us that the Doctors may review the next lot of chemo that George is due to have. For two reasons. One of the chemos he has received quite a few times now. The second reason is that George is due to start his next chemo on Monday. There is no way his blood counts will be up in time. We feel sure that the Doctors will come up with another type of chemo for Georges next set of treatment. We informed the nurse of George’s throat swap and asked when the results would be back. She was not aware that this test had been done. She went to check the records. When she came back she told us the results would be back on Sunday. Poor George would have to wear the mask until Sunday. She then told us that we should not be on the Paediatric Ward, due to the test being done. We felt terrible. We informed her that we had done as we were advised to do. She told us to attend Urgent Care until Monday. George is so happy to be back at Ronald McDonald House. He kept going down to Reception to see if the dogs had arrived (he knew which dogs were due to visit today and loves them both). He also likes to check the “mail box” by himself that is also in Reception.

Monday 2 July We were woken up quite early and were told that George would have to have a throat swap. The doctors wanted to find out why he kept getting the high temperature. They thought that this maybe due to a slight cough or throat infection. We were not worried about this small test as George has had them before, they just take a small sample from the back of your throat. Unfortunately, the test they wanted to give George was different. He had to have a tube put up each nostril, that then went quite deep into his throat. When he heard this he got so angry and upset. We eventually calmed him down and they did the test . We went to radiotherapy. Later on we were told that we could go home. George would have to wear a mask, while at the hospital and in Ronald McDonald House. He would not be allowed back onto the Paediatric Ward until the results of the test. We would have to go to Urgent Care once again for his appointments. Just before we left a Doctor came to see us to say that the Nueroblastma team wanted to see George on Tuesday. We told the Doctor that we could not go onto the Paediatric Ward, she told us that we could. We were pleased as George has more to play with fun on the Paediatric Ward. We eventually got discharged and all 3 of us moved back into Ronald McDonald House at about 8pm that night.

Monday 25th June 2007 George’s blood pressure is still slightly low. He had radiotherapy and that went well. His temperature was fine until later and then it went up. George sounded a bit wheezy. We called the nurse in, she checked George and then a Doctor was called. This was when we started to panic. After talking to the Doctor we realised that George had been sat in his wheelchair next to some very strong smelly flowers earlier. He gets hay fever so that must be why he is wheezing. The nurse gave George a nebulizer and it cleared his wheezing.

Tuesday
George started a new antibiotic. Shortly after receiving this, we noticed that his whole head was becoming red. At first we thought it must have been from where he way lying on his pillow, but his head got redder and redder. You could see a line across his neck where his head was red and his neck was normal. We called the nurse in. She then called a Doctor. We were informed that George had “red mans syndrome”. This is a side effect from the new antibiotic. George had radiotherapy, a bit later then planned, due to his red head. He is still not eating, which can be very frustrating at times, as we do not want him to survive on fluids alone. The lump on George’s head is getting redder by the day, due to radiotherapy, but this must be a good sign, the radiotherapy must be working. George’s blood counts are not improving and now we are getting worried that they will not be high enough for the next lot of chemo. We are never happy, when his blood counts are low, it shows that the chemo is doing it’s job, but then we worry that they will not pick up enough for the next lot of chemo. George went to bed, shortly after lying him down he became wheezy. They gave him the nebulizer once again. One of the nurses told us that he could have congestion on his chest, as he is not moving around a lot. So from tomorrow we will get George up and either get him to dance or exercise around the room!

Wednesday
We went, as usual, to radiotherapy. When we got back we were told that George had to go for a chest x-ray. Yet again we started to worry. The results came back and they were all okay. Later that night George was started on yet another antibiotic. He had only been connected to it for a few minutes and he said he couldn’t breath. He was really panicking, he started to cry, shouting “I can’t breath”, then he started to heave and got sick a lot. The nurse stopped the medication immediately and the doctor was called. They were not sure why this had happened, maybe George just had a bad reaction to the antibiotic. It was a reaction that George would never forget. He was so scared. We felt helpless watching all this happening. George eventually calmed down and went to sleep. Later that night he got another very high temperature.

Thursday
This was a much calmer day. George had his radiotherapy. He still had a high temperature and low blood pressure. George managed to write some postcards and was in good spirits. He is getting to know all his nurses now and likes to chat to them. His blood counts have not improved, but we feel sure that they will. Yet again, when George lay down to go to sleep he was wheezy, he was given a nebulizer, it cleared his chest. Someone told us that the wheezing on the chest could be a sign of pneumonia. This really made us worry, so no matter what happens tomorrow George will have to get up and move around that room.

Friday
George’s blood counts are still very low. Due to the chemo he has just had and all the other chemo he has received over the last two years, his bone marrow is probably finding it very difficult to recover. Today he received HB and platelet transfusion. He started wheezing again when we put him to bed. Again he was given an nebulizer and this cleared his chest.

Saturday
George slept really well. He has not had a temperature for quite a while (fingers crossed!) His Doctor came to see him. He is a lovely man and George really likes him. He examined George and was happy with his progress. He then went onto say that they might have to do surgery on George’s lump. As he said this we could feel George’s fear. We looked at George and he had tears in his eyes. We quickly signalled to George’s Doctor not to mention anymore about surgery and he obliged as he was obviously concerned about Georges feelings on this matter. When the Doctor left George got really upset. The surgery George had previously was major and none of us will ever forget that. It was hard for us watching George go through it, it must have been so much harder for George, as he was the one that had to go through it. We kept telling George that it was a ‘might’. It was not definitely happening. Why get upset over a ‘might’? When it ‘might’ not even happen. We switched the TV, computer and Gameboy on, in the hope that it would distract George and it did. We hope that he is no longer worried about the surgery, we feel sure that if he is, he will let us know.

Sunday
George has not had a high temperature for a few days. The Doctors came round in the morning and said that we should be able to go home tomorrow (Monday). Shortly after that George got a temperature again and all we can do is hope George will be well enough to be discharged in the next few days.

Monday 18th June 2007 We started the week with great anxiety knowing that George would need a blood and platelet transfusions. We were also aware that at some stage he would develop a high temperature.

On Monday we headed off to Urgent Care for George to have a blood test. We were informed that he would need both HB (red cells) and platelets. George would have to start having the GCSF injections (to help boost certain counts). George had an insaflon fitted to his arm. This is a small plastic device that is inserted into his arm. This is then left in his arm, for one week. We then have to inject the GCSF into this device. George then had to go to Radiotherapy. He still has no energy or interest in anything. He is off his food and does not want to drink.

Tuesday and George is still not eating or drinking. George went to have radiotherapy. Since George is in isolation, he now has to wear a mask, gown and gloves when he goes into the hospital. George had his radiotherapy and as always he was really good. He stayed still throughout, but his big cuddly doggy Judy, who was lying on him, had a great time, she danced to the music that was playing. George didn’t even realise that he was moving her in time to the music. We could see it all on the monitors. To encourage George to eat we told him he could have whatever he wanted. He said he wanted “Dairy Lea Lunchables”. We were not sure if we could get them in New York, but would try our best. After walking the streets for a while we came across something that was similar to Lunchables. George tried them and said that he didn’t like the cheese and that the ham was too thick. He did manage to eat one of the biscuits though!

Wednesday came around so quickly. George was low on potassium. We were advised to get George to eat whatever we could that had potassium in. Easier said then done, since he does not want to eat. We were informed that there were lots of sports drinks that had potassium in them. We went out and bought several drinks and bananas, as they are high in potassium. We managed to get George to drink one of the drinks and a banana. Shortly after he got very sick. They decided to put George back on IV fluids. George then had his radiotherapy. We had to carry him the short distance, as he was so unwell. Just before they put the mask on, George said he felt sick. They waited a while until he felt better and then gave him his radiotherapy. We had to carry George home, he didn’t want to go in the wheelchair because he felt so sick. When we got home we decided to monitor his temperature. His temperature hit 38. We rang Urgent Care and they told us that we had to bring him in straightaway.

Thursday morning and we were still in Urgent Care. Since George is in Isolation there were no rooms available for him. Through the night George received both HB (blood) and platelet transfusion. His temperature was going up and down all the time. We put him to bed, but he just wanted to be cuddled, as he was so cold. At 1.30am his temp had risen to 38.9. By 4am the bed was wet with sweat. The nurse gave him something to help stop his temp raising even higher.

Friday morning. George now has low blood pressure and a high temperature. The hospital think that his low blood pressure maybe because he sleeps on his side all night and that he is not eating or drinking.

The weekend was much the same as the week . George has been on two IV antibiotics and fluids all week. His temperature is still up and down and he still has low blood pressure. On Sunday George needed transfusions of HB and platelets. In himself he seems to be ok. He can be happy and chatty one minute and then tired the next. George did manage to do some drawings Sunday night. They were of “flags of the world” (his cousin Jack loves to draw maps and flags, so we just kept calling George ‘Jack’, which he thought was very funny).

Monday 18th June 2007 Last Monday morning (11 June) George was starting his chemo. We had to be at the hospital for 7.30am. As we walked to the hospital we knew the next couple of weeks for George would be difficult, but we had to keep him positive. We had taken George in his wheelchair, as we knew that he would not be able to walk home later that day. We tried to make it an enjoyable trip by pushing him fast, spinning him round and pretending to run into things! This to our delight made him laugh.

The first chemo was given via his hickman line. This took a matter of minutes. The second chemo was given via the hickman line and lasted about an hour. Shortly after this chemo started George got severe stomach cramps. He was crying from the pain. He was given medication to help overcome the pain. The third chemo was administered the same way, but would take approx 6 hours. We were informed that we would have to take a “back pack of fluids home with us”. The “back pack” contained I.V. fluids (that is connected to George’s hickman line). This was to ensure that George would be receiving enough fluids through the night. The chemo that had taken 6 hours could damage his bladder. Therefore you have to ensure that the bladder is getting flushed enough. We were also advised to wake him every 2 hours (through the night) to make sure that he went to the toilet. We left the hospital at approx 7pm. George was exhausted by the time we got back to Ronald McDonald house. George asked to go to bed as soon as we got in (that is something that George never asks for).

Tuesday was exactly the same as Monday. To prevent George from getting stomach cramps his nurse gave him the medicine for the pain before the chemo was given, but George still got stomach cramps. George is now aware that this chemo gives him pain. He has started to worry about it all. We keep on telling him that as long as the chemo makes him better then he has to have it . We try to comfort him, make time go fast and also make things as pleasant as possible. George was starting to get sick from the chemo and sleeping a great deal. He also didn’t want to drink or eat. After the long day of chemo we had an appointment at Radiotherapy. George didn’t want to put his mask on. He started to get very upset. In the end we managed to talk him round. He was so brave. He stayed really still while they were taking pictures. We were then informed that there was a query with the markings on the mask and that he would maybe have to have another mask done.

Wednesday was a shorter visit to the hospital. George only needed chemo that takes an hour. Although the treatment only takes an hour you are always at the hospital for longer. As before treatment is administered observations of George have to be carried out and medicines have to be prescribed. George got stomach cramps again and got very upset. After chemo we headed for radiotherapy. They had managed to change the markings on George’s mask. We were so happy to hear the news. George had his treatment and as usual was brilliant.

Thursday morning, we had to move out of Ronald McDonald House. We also had to be at the hospital for chemo and radiotherapy. The chemo was again over an hour. We could not go to the Paediatric Ward as George now has to be treated in Isolation. As George had not been eating or drinking, we were told that we would have to take a “back pack” home with us. After chemo we went to radiotherapy.

After all of George’s appointments we moved to our new accommodation. We could only book into this accommodation for 2 nights (it is very busy in New York this time of year). We didn’t bother to unpack, as we would soon be on the move. George adapted well to the new accommodation, but he still says that he will miss Ronald McDonald House. He will miss the company of all the children staying there. George is still being sick. He is on so much medication. He has his anti-sick medications, that we can only give to him every 6 - 8 hours. We have to try and judge the best times to give these to him. He also has a certain medication to stop him from getting a serious virus. He has his usual hay fever tablets and eye drops. He has one that he has to use like mouthwash and then swallow. This is to prevent sores to his mouth and throat. We have also been told that he will get severe diarrhoea, so we now have that medication in the medicine bag, ready for use.

On Friday George received the same treatment as the previous day. He still got stomach cramps, which upset him and us. He is not himself at all. No energy and has no interest in anything (which is very unlike him). We took him straight back to our room where he fell asleep. We feel that at moments like this we miss the real George, full of energy, making us laugh and just being silly.

Saturday morning, we were on the move again. George in his wheelchair, with a sick bowel on his lap and his big toy dog Judy. Us with bags and cases. We must have looked very strange to the normal person! We moved into yet another new home. We stayed in all weekend. George was too unwell to go out. He just lay in bed all weekend. We watched lots of telly. George didn’t even want to go on the computer, which again is very unlike him. Even when we were contacted by relatives he didn’t really want to talk to them. Which must be upsetting for them and difficult for George. It was a very difficult weekend, as it was so hard to see George feeling so unwell. George did ask why he was the boy that had to get ill and that it wasn’t fair. We didn’t really know how to answer that question. We said that things like this just happen. That it was nobodies fault. We told George that the main thing was that we were in New York to get the best medicine in the world . We also told George that everything would be ok, as long as the three of us were together then we would all be fine.

Monday 11th June 2007 We have spent everyday at the hospital this week. George had to have blood tests everyday to make sure that his platelets were coming up. Which they did, slowly but surely. George also had to have his radiotherapy planning. This involved making sure that they radiate the correct area everyday. He had to have a mask of his head made, which he thought was pretty funny.

Unfortunately on Wednesday we were called into an office, at the hospital. We were informed that a child, that had been in the play area the same time as George, had got Shingles. They advised us that George would have to have medication. This medication would be given to try and soften the blow, if he caught shingles. This medication would have to be given via his hickman line over 4 hours. We were then informed that from 14th June until 2nd July George would have to be treated at the hospital in Isolation. This is purely to prevent other children from getting shingles. We were then informed that we would have to move out of our accommodation, for this period of time. There are several children staying at our accommodation who are receiving chemo and other treatments. We now had the worry that George may get shingles and also the worry of having to move to another place. The Hospital Social Worker is helping us to find alternative accommodation. George had the medication on Thursday. Within 10 minutes of receiving the treatment George got sick. He then felt very sleepy and slept for most of the 4 hours. All of this is happening because George MAY get shingles.

The next day we went to the hospital for a blood test and were delighted when they informed us that George's platelets were nice and high and that they would go ahead with Chemo on Monday.When we got home George got sick, after eating a rather large tomato,we thought nothing of this at the time.

Later on, at approx 5pm that day, George was not well at all. He kept getting sick, complained of a headache and was just lying on the bed. We took his temperature and it risen to 38.4 (which is high) within an hour. We rang the Urgent Care number and they advised us to take him straight to the hospital. When we were getting ready to leave George said that he couldn't walk. We put him straight in a wheelchair and rushed him to the Urgent Care.

Once there they took his temperature, blood pressure and pulse. We were seen by a lovely Doctor. We were told that it may be an infection and they took bloods to check for this (the results take 48 hours). The Doctor kept coming in a checking on George, who was still feeling very poorly. We were told that the side effects from the medicine he had the day before were all the symptoms George was showing, but these symptoms usually happen 24 hours after the medication. George had the medication approx 26 to 27 hours previously. A while later we were then called outside of George's room and were informed that they were worried that the Tumor may have caused a blood clot on the brain or even worse that the disease may have now progressed to his brain. We were totally shocked and devastated. They advised to have a CT Scan. We were then introduced to a Neuro Surgeon. He informed us that we should not worry and that he felt that things would be ok. He also said that they had to make sure that the worse possible situation was not happening. We then had to go back into George's room and be happy and normal. If he knew we were worried then he would worry and we could not let that happen.

George had the CT Scan. The results came back and his tumour had got bigger since the last CT Scan. The hospital wanted George to have an MRI Scan. It was now 11.30pm and we took George to have the Scan. He had to stay still the whole time. The scan took 45 minutes to do. George got really upset half way through the scan. It is quite a scary machine, very noisy and your head is in a thing that looks a bit like a cage. He calmed down and the scan continued.

The Doctor came into the room later on to give us the results. We followed her out into the hallway. She told us that the scan had come back and that it was all ok. We were both so relieved. They wanted to keep George in for observation over night, but we could go home in the morning. We are still not sure what was wrong with George that night. Maybe he had just got a normal infection, or an infection in his line or it may have been a reaction to the medication. He is fine now and that is all that matters. As long as he is well enough to start chemo then we are all happy.

Now all we need to do is find out where we are staying over the next 19 days. We will hopefully find out in the morning.

George has already packed his bag for spending the whole day at the hospital. He had put CD's, Gameboy Games and some books in his bag. He knows he is going to have chemo. He also knows that this will make him sick and feel very unwell, but he has never ever complained about it. All week he has been saying "I need to eat loads this week, because next week I will not want to eat anything". He has, therefore, been able to eat and drink whatever he likes!

George had an early night tonight to prepare himself for the long week ahead of him.

Tuesday 5th June 2007 We arrived in New York quite late Sunday evening (27 May). It all seems so strange to us and so far from home. We moved into Ronald McDonald House. This was to be our home for sometime.

We met with the Doctor at the Hospital on Tuesday (29 May) and he advised us that they would start chemo on George as soon as possible. The course of chemo would be 5 days of treatment, then 2 weeks off. We were informed that on the 2 weeks off we would probably be in hospital for a week due to high temperature. Hopefully, George would start treatment next Monday (4 June). George would have to have a Heart Echo, which he had done that day. The other test was a Bone Marrow test (which he hates), this was to be done on Wednesday.

We arrived for the bone marrow test and George was really calm, considering how much he hates this test. We then had to walk him into a room where he would be given anesthetic. George was so brave, he really wanted to be good as he was in a new hospital. He was great. He let them put him to sleep, knowing what they would be doing to him and how it would effect him after. He woke up quite quickly and as he had back pain was given a wheelchair to be taken home in. We went back to the hospital several times to have blood taken.

On Friday (1 June) we were informed that as his platelet were still low George would not be able to start chemo on Monday. Hopefully he will be able to start mid week. George's bump on his head is getting bigger. He is conscious of it himself and has said that it is ugly. The Doctor here wants to give radiotherapy to this area as soon as possible. The bump on George's head is now bald, due to the radiotherapy he received in England and also the chemo. The rest of his hair is also falling out due to all of the above. We all knew that this would happen, but it still doesn't make it any easier. Today we bought a lovely NY Baseball cap, we know that due to George's hair loss and the very hot weather over here that he will get plenty of use out of it.

Sunday 27th May 2007 George and his parents flew out to New York on Sunday. His platelets and bloods were high enough for him to be able to travel, so this was a prime opportunity for him to go. The Trust negotiated part of the payment for George to be able to get him seen at the Memorial Sloane Kettering Hospital as time was not on our side, if it got left any later, then George's blood count would have gone down, therefore, he would be unable to fly due to catching any infections on the flight. We couldn't afford for him to go much longer without further treatment.

George is due to start treatment, but funds are still urgently needed to sustain the treatment – we need everyone’s help.

Monday 21th May 2007 George has been receiving Radiotherapy & Chemotherapy over the last 7 days. Everyday we had to travel to University College Hospital for Radiotherapy, where George received treatment to his head. George would then go into another room and receive treatment to his leg/hip. George was brilliant throughout, and stayed still the whole time. Everyone at UCLH were so good to us.

We then went to Great Ormond Street (GOSH) were George received Chemo. George has always liked going to GOSH as he knows so many of the staff there and they are always so nice to him, so he never complained about having to go there again.

George has been very tired all week. He has been off his food since the treatment started, and he has been sick a lot. We had forgotten, or maybe tried to block from our minds how ill he gets when he is having treatment.

George has also been receiving his GCFS injections to boost his blood counts. At present, George's blood count is high enough to stop his injections, but, George's blood count may still fall once again. The GCFS injections may continue, this will depend on his next blood test on Wednesday and Friday this week. If the blood count is too low there is also a possibilty George may need blood or platlet transfusions.

Monday 14th May 2007 George has had his hickman line fitted, in order for him to have chemotherapy at Great Ormond Street. This will last for 5 days. He is also having radiotherapy on the tumour in his head and also on his legs. The chemo and the radiotherapy will finish by Tuesday of next week.

George's parents were advised that he had to have some treatment in the UK before he goes to America to supress the cancer, as when he does arrive at the hospital in America, they will have to do their own tests on George. He could be having tests for up to two weeks, this is why he needed urgent treatment before he leaves the UK.

After he has finished the course of radiotherapy and chemo, George will then have to have GCSF injections to boost his blood count in order for him to be well enough to fly to the States. Hopefully we can raise as much money as possible to get him over there.