5th - 11th December

George had to have a canula fitted, so that he could receive the injection for the scan. As always he got really upset. Once again we found ourselves making George have something he hates. It is so upsetting seeing him so unhappy and scared. You never ever get use to it. George then had to have the injection. He is fully away that this injection w ill sting when being administered. He therefore gets upset before even having it. He is so brave but still gets upset. They told us that even grown ups get upset when receiving this injection. George never refuses to have any of this done to him. He puts up a fight to delay it happening, but never flatly refuses. We have to admire and love him so much for that. He has been through so much. Even an adult would find it difficult to cope with all the treatment. This just shows us how special and brave George is.

The following day George had his MIBG scan. He was brilliant. He stayed still the whole time and just watched a film. It was horrible being back in that same room. We never realised that a room could make you feel so scared. We acted as normal as we could, but inside we were not. It is so hard to put into words how we feel at this stage. To be honest we don’t think we could ever describe it. What words could?

George has started to get pain in the top of his right arm. He had a bruise on that arm and we were hoping that it was because of this. Unfortunately the pain has got worse. He often cries with the pain. We have to give him extra medicine. This is the morphine that makes him very tired. It can also make him very emotional. He was seen by the physiotherapist. She informed us that George is walking with his right shoulder higher then his left (this is due to him trying not to put too much weight on his sore leg). We can only hope that the pain is due to this, as we dread to think of the worst.

What we must do now is let George have some fun, be as normal as possible and see as many friends and family as he can.

Result day is hanging over us like a massive dark cloud. We are not sure how we will get through it, but we will, we have to. George is our son and we love him so much. He so deserves to beat this, he has put up such a long and hard fight against it. He deserves a break from all that is happening to him. We just want him to be disease free so he can live a long and happy life. He is so kind, generous, funny, loving and young, so young, he truly deserves to beat this.

18th November - 4th December

The last few weeks have been quite busy. George has to have blood tests on Monday, Wednesday and Friday. The nurse comes in the morning to take the blood. We then have to wait for the results. Ever Monday, Wednesday and Friday since coming home George has had to have a platelet transfusion. On a Friday he has needed both platelet and HB transfusion, this has meant an overnight stay at the local hospital. Although we are home we are still spending every other day at the hospital. We were starting to worry about the platelets, as they were not increasing at all. We were told that the treatment that George had just received was high dose. Under normal standards it would take a lot of time for the bone marrow to recover. George’s bone marrow has received so much treatment over the last few years that it will take a long time for it to recover. We thankfully get the weekends off, so we have 2 full days to do what we want to. George is also still receiving the GCSF injection and his neutrophils are coming up very slowly.

George’s eating is still a bit hit and miss. Some days he will eat really well and other days he will hardly eat anything at all. He hardly ever complains of leg pain, although he is receiving pain relief for this.

We have had several trips to the local cinema. George adores going to the cinema. We have been to several family birthdays, which we have all really enjoyed. George plays with his cousins and enjoys their company so much. We finally got round to sorting out George’s home tutor. It is so good to see him back learning, as he is always so keen to learn knew things. It really makes a big difference to him. He is so bright and keen. The only thing he is not happy with is having to get up in the morning! He is so use to staying up late and getting up late.

We have received George’s test dates. He will have to have an injection on Wednesday 5th December and then an MIBG scan the following day. We have an appointment for the test results on 13th December. It is always so scary when we receive test dates. The tests are constantly on our minds. At times you can just begin to shake thinking about them, or sometimes it makes you feel physically sick. We will try not to think of these dates and just try to be as normal as we can until then. We can only hope that the MIBG Treatment George received will help him to fight this terrible terrible disease.

Saturday 17th November

We packed as soon as we could! We were a bit worried that we would not fit all our belongings in the car, as we now have George’s new wheelchair to take home. George had a blood test and needed to have a platelet transfusion. The day seemed very long, as we just wanted to get home. George wrote the nurses a lovely card. All the nurses at Great Ormo nd Street are so kind to all the children and parents. They all truly make the stay there so much easier for the children and the parents. George went along the corridor saying goodbye to all his nurses. Once in the car he rang to ask for Tilly to be taken home. We arrived home, just before Tilly. George could not wait to see her. When she arrived she was so pleased to see him. He kept saying “Do you think she really missed me?” We are not sure who was happiest George or Tilly. We are so happy that we are home. We will make the most of the time that we have at home with each other. George is a lot better in himself. He is eating well. He is able to walk around the house. He does still limp, but is able to get from room to room. If we have to go out we have to take the wheelchair with us, as he can not walk long distances. He is looking forward to having a home tutor. We have asked if he wants to go to school for lunchtime, but he does not want to go. We are not sure why, but we feel sure that if he does want to return to school he will let us know. We have to go to GOSH for tests early December. We have not been given the dates yet. We will, as always, make the most of our time at home. We can only hope that the test results will be good. Until then we will enjoy being with each other and having some fun. We have to enjoy the moment, as that is all we have.

Friday 16th November

It is so great to see George back to his usual self. He is eating well and seems to have more energy. He was seen today by his consultant and doctors. They are happy with his progress. We were told that we could go home on Sunday. They wanted to keep George in until then to administer the GCSF and monitor how it was functioning. We informed them that we could administer the GCSF ourselves. They said that they would therefore be happy for us to leave on Saturday. We were delighted to hear this news. We were also told that George could now leave his room, he would no longer be in isolation. Once they had left George immediately left his room and went round to Elephant Day Care to see all the nurses. It was so good to see him leaving his room, although as he walked down the corridor he was still limping.

Monday 12th - Thurs 15th November

This is a much better week then last. George is more of himself. He has been taken off the special IV Feed. George is now eating really well. George has not had a high temp. for a few days. He is more himself now, which is what we all want to see and hear. The teacher at GOSH comes to see George everyday and he really loves20to spend time with her.

Monday 5th Nov - Sunday 11th Nov

Today it will be Fireworks Night. We were hoping that George would not realise this, as he would then know what he would be missing. As always George was fully aware of what was going on. We could hear the fireworks going off all night. We kept thinking about our last Fireworks Night together. Watching the display, then going to the Fun Fair after. This time last year we truly believed that George had fought and won the battle against this terrible disease. A year later George has to continue the fight. George has continued to have a very high temperature. After several tests we have been told that he has several infections. George now has a gut infection. He also has the herpes/cold sore infection in his mouth. This is all due to him having chemo and not being able to fight any infections, as his immune system is so low. George has now been put into isolation. He cannot leave his room. George is very sleepy. He has no energy. He still is not eating. George has also been getting severe pain in his left side. This can happen at anytime. Every time it happens we are so worried. We were told today that it could be due to a kidney related problem due to calcium build up around this area. George is having to receive so many antibiotics. He is having to have a platelet transfusion every other day. This is because the chemo and MIBG treatment is attacking the bone marrow. We sometimes forget how difficult it is staying at GOSH. You never really get to know people really well, but in a few minutes a parent will tell you so much and the bond between you becomes so strong. We feel so comforted by their company. A parent could be in the room with their child, being so strong and supportive. Then you may meet them in the kitchen a few minutes later. They will then tell you what is happening to their child and how they feel. They tell you that their whole world is falling apart. They are so upset and confused by all that is happening to their child. There are no children around so the parents are able to show their true emotions. We all try to be strong for each other. We make our cup of tea or coffee, walk along the corridor and enter our children’s rooms. As soon as we are back in their room we have to be our happy go lucky selves.

Wednesday 31st October - Sunday 4th November

The last few days have been very tough. George has not been eating at all. He is now receiving a special feed through his hickman line. He has lost so much weight. George is having a high temperature, diarrhoea, stomach pains, sore throat, mouth ulcers, vomiting and he is also very tired. George has been sleeping during the day, which is very unlike him. All of the above could be due to several things. Chemo, antibiotics and being neutropenic. Our main worry is that it could also be due to the NB spreading. When George tells us that he is getting any of these symptoms our hearts drop. We could never put into words how worried we are when George gets a pain or is feeling unwell. We can only hope that it is all side effects of the treatment that he has just received. On Sunday George began to receive GCSF. We truly hope that this will boost his counts and will make some difference to the way he is feeling at the moment. All we want is for George to start eating, talking and being his usual self. We really miss George just being George.

Tuesday 30th October

George is still receiving IV antibiotics. Today he received his stem cells. This only took approx 1 hour. They were administered straight into his hickman line. Unfortunately this procedure causes a smell. It smells a lot like sweet corn! It is a very overpowering smell. George’s breathe even smelt of it. When you enter his room it is all that you can smell. We told him that he had gone from “Radioactive Boy” to “Smelly Boy!” which he found very amusing.

Monday 29th October

George’s temperature is still high. He needs both HB and platelet transfusions. We were seen by a Doctor and were informed that GOSH did want George to go ahead with his stem cells. We were so happy that George would be getting his stem cells back. We were transported to GOSH and George was delighted to meet all of his lovely nurses there. We were taken to a room that George had stayed in before. George is still not eating, his diarrhoea has got worse and his ulcers are still very sore. George was happy to be staying at GOSH and this made things so much easier for us.

Friday 26th - Sunday 28th October

George has been staying at our local hospital. He has to stay in his room, as he is neutropenic. George’s sore throat has got worse. He also has terrible mouth ulcers. The mouth ulcers are due to the chemo. We were informed that his blood results had grown something, this was probably due to him having a throat infection. George also has diarrhoea, this could be due to the antibiotics. George is not eating, as he finds it painful to eat. George is happy to be staying at his local hospital. This is because he gets more visitors, as we are closer to home. We were informed on Sunday that we would not be going to G OSH on Monday for George to receive his stem cells. We were very disappointed to hear this news. We really wanted George to get his stem cells back so that he can lead a more normal life. Yet again luck is not on George’s side.

Thursday 25th October

We had to wake up early for our appointment at UCLH. We took George’s temperature and it was high. We arrived on the ward at UCLH and they took his temperature. It was 38.5. They=2 0took blood samples from George. These were to see if George had any infections. These samples would be checked and if anything grew then it would confirm that George had an infection. It would take 48 hours for the results. We then realised that we would have to stay in hospital for George to receive IV antibiotics. George was not happy with this news as he knew that we should have been able to stay at home until we went to GOSH on Monday. George had his scan and as always he was brilliant. He stayed still the whole time. We then had to go back onto the ward, into George’s old room. We were then told that we could be transferred to our local hospital. George would have to stay there to receive his antibiotics. We eventually arrived at the local hospital at approx 11pm.

Wednesday 24th October

A couple of times today George has complained of a sore throat. We took George’s temperature before he went to bed and it was quite high. We rang UCLH and they advised us to wait an hour and take it again. We did this and thankfully it had gone down.

Tuesday 23rd October

George has been in a good mood the last few days, as we able to spend a lot more time with him. We were told today that George’s radiation levels were low enough for us to go home. We were so happy. George needed to have both HB and platelet transfusions before we left. We were so glad to be going home. We would have to return to UCLH on Thursday 25th for a scan. Then George would have to go to GOSH on Monday 29th Oct for his stem cells. We are not sure how long we will have to stay at GOSH for, probably a couple of weeks, for George’s blood counts to recover. We are going to make the most of our time at home and the freedom! George wanted to pick Tilly up on the way home, so of course that is what we done. George was so happy to see her and she was very excited to see him. It is so wonderful to be home together.

Wednesday 17th - Saturday 20th October

Over the last few days George had to receive both HB and platelet transfusions. He is also very neutropenic. If you were to talk to George you would not know that anything was wrong with him. In himself he looks well (apart from the rather large bald patch on his head and his lump).

George can be happily colouring in, watching a DVD or reading. All of a sudden he will become very upset then angry. Who can blame him for doing this? He is only nine years old. He has spent so much time over the last few years in hospital. George has had so many procedures done, some of which he truly hates. How could he possibly understand why all these things are happening to him. We can not tell him that all of this is being done to save his life. If he knew the full extent of his illness he would not be able to cope at all. We therefore have to try and make him understand what is happening and why. Even though, we ourselves, do not know why this is happening to our sweet, loving and funny child. George has been through so much treatment to beat this terrible disease. We have always been right next to him, helping him through it. Maybe that is why we are all finding this treatment so difficult. George is alone in his room and we are not right next to him. We can not wait until George is no longer radioactive. We can then put him in our bed between us a give him the biggest cuddle ever.

We are currently waiting for George’s radioactivity to drop. He can then be moved to GOSH to receive his Stem Cells. It may take a couple of weeks for the stem cells to begin working. Once they have began to work we can go home. We want this time to go so quickly so we can be together as a family again.

Tuesday 16th October

George’s platelets and HB were very low so he had to have several transfusions.

George once again received the MIBG Treatment and his first day of chemo. George’s treatment will be exactly the same as the last.

Monday 15th October

George’s leg pain is much better. We were dreading George saying “Goodbye” to Tilly. Luckily Tilly left the same time as we did, which we think made it a bit easier on him. George kissed and cuddled her goodbye. We once again set off for UCLH. We were dreading taking George back to hospital, as we thought that he would refuse to go. George being his usual self amazed us and did not complain at all. Once at the hospital George did not really want to go into his room, as he knew that once he went in he would not be able to come out. He eventually settled back into his room. All the staff were so nice to George, it made being there so much better for him.

The Weekend 13th and 14th October

It is so nice being at home. We have taken Tilly out for several walks, which George has really enjoyed. We have seen many family members. George has really missed not seeing his cousins. He got really upset one night. He said that it was not fair that he could not see his cousins. He also said that it was not fair that all this was happening to him. He told us that nothing is making him better. We did not know what to say. We told him to think of all the good things that had happened over the last few years. All the places we had been to, people that we had met and the fun times that we had. As we are telling George this we find ourselves asking ourselves the same question. Why has this happened to George? He is such a sweet, loving, funny, caring child. We will never know the answer to that question. We know that we should not even ask ourselves that question, but sometimes we do. George is not very happy about going back into hospital. He does not want to be apart from us. We can only hope that this treatment will have some effect on the NB. It is a completely different treatment compared to what George has had before. Another wish. We wish that this treatment will help.

Friday 12th Octpber

George had a blood test today. He was low on platelets. We had to go to our local hospital for a transfusion.

Wed 10th October

George was eventually discharged from hospital today. Before he left he had to receive a platelet and HB transfusion. George was delighted to be coming home. He could not wait to be let out of that room. We were informed that George was still “giving out” radiation. He would therefore have to stay away from children. He would also be unable to go to public places for long periods of time. We were told that George was now neutropenic (this means that George has nothing in his body to fight infection). If George got a high temperature we would have to take him to our local hospital. They would then have to transfer us back to UCLH. We were convinced that George would get a high temperature while we were at home, as he always does after receiving chemo. We said a very quick goodbye to all the staff and told them that we hoped that we would not see them until Monday15th October (when George starts the same treatment again).

We arrived home and the first thing George wanted was Tilly. She was brought round immediately. He was so pleased to see her. George could not sleep in his own room, as he has a high bed. He had to sleep in the spare room. George and Tilly went off to bed, happy to be with each other.

Wed 3rd October to Tue 9th October

This was to be a very long week. George was finding it so difficult not being with us. We knew that this would happen but did not realise how difficult it really would be. We were also finding it difficult ourselves. We really missed kissing and cuddling George. As the week progressed we were able to stay in the room for a few minutes and also managed to leave the door open (just a little). The MIBG Treatment did not make George feel unwell, which was good. The chemo made him sick just once or twice. George was receiving anti-sick mediation to prevent him from feeling sick. George’s liver is still enlarged. His leg pain is a lot better. He can walk very short distances but still has a limp. George was also having to receive platelet transfusions every other day. George would sometimes be his usual happy self. Other times he would feel down. It was so difficult for him. He is so used to us being constantly with him. When George had his first visitors he started to cry. He told us that he was upset as he could not kiss and cuddle them. He also said that they could not even be in the same room as him. Once again we found ourselves trying to make light of the situation. This is becoming harder and harder as time goes on. George had to have several scans. These lasted approx 1 - 2 hours. These scans were to monitor how much radiation George had received. These results would show how much radiation George would be given on his next course of MIBG Treatment.

Tuesday 2nd October

George received the MIBG Treatment. It was administered through his hickman line. It only took about half an hour. The MIBG Treatment is only given for one day. George then received chemo. He will receive this chemo everyday. His last day of chemo will be Saturday. It was so strange. George was in his room and we were not right next to him. George kept saying he was missing us. We had to keep telling him that we were only a few feet away.

Monday 1st October

Our wish came true. George was given the go ahead to start the MIBG Treatment. We had to hold ourselves back from kissing his consultant! George was very nervous. He was staying in a different hospital and would be receiving a very different treatment. We were both given radiation counters. We would have to keep these on us at all times, so that it would monitor how much radiation we had received. George would have to sleep in the room alone. There is a room for a parent to sleep in, but this would be behind a large lead door. This door would have to be closed due to the radiation. The door has got a small window in it, so we could see George through this. George has a monitor in his room. On this monitor he can watch us in the our room. We also had a monitor in our room, so we could watch him. George also had a phone in his room, which he could use to ring us in our room. We were informed that once George had the MIBG we would have to stay out of the room for as long as possible. This was because once George had received the treatment he would become radioactive, therefore making his room radioactive. We would have to wear gloves, an apron and shoe covers when entering the room. We would only be able to enter George’s room if he really needed us. George did not like the idea of this and got very upset. George would be very radioactive the first few days, this would become lower as time passed. We are so pleased that George would be receiving this treatment, but at the same time we knew that he would find it very difficult, as we are so close to each other.

Sunday 30th September

George is feeling a bit better today. We had been advised to increase his pain relief. George had so many visitors today. All his family came round to see him and he had a lovely time with them all. He got a bit upset over silly little things, but this is due to the medication he is on, as it can make you very emotional. The time came to say goodbye to Tilly and George got so upset. Tilly was sitting on his knee and he was cuddling and kissing her. Once again we had to fight our own tears off. We then had to pack. We still do not know if George will receive the MIBG treatment. We have to pack in the hope that he will. Our hearts are not in the packing. We are finding it difficult to know what to pack. To be honest we are finding it difficult to deal with the smallest of things. We are so worried about what will happen tomorrow. We have tried to stay positive throughout George’s treatment, but we are finding it so hard to now. George is not aware of what is going on. It is so difficult to be normal in front of him. We have been trying our best to be funny and happy all day, but it is a struggle. We can only hope that George will be allowed to have this treatment. This hope is what is getting us through today. We do not know how we will cope with tomorrow, but we have to cope and hopefully George’s strength will get us through the day. Surely George deserves a bit of good luck, since he has had nothing but bad luck over the last few years. Our only wish is that we are not at home Monday night. We truly hope that George is in hospital, getting ready to receive his next lot of treatment.

Saturday 29th September

George’s leg pain is very bad. He often cries out in pain and asks us why all these horrible things are happening to him? We tell him that we do not know why. We tell him to think about all the good things that have happened to him. We tell him all the names of people that love him so much and remind him of all the good things that we have all done together. We had to go to the hospital again today, for George to have a platelet transfusion. George often gets a reaction to a platelet transfusion. Today it was wheezing and a blocked nose. George thought that he could not breath. He really panicked, rightly so. George had to have a nebulizer to sort his breathing out. On the way home he told us that we were so good to him. He also said that if we ever got a pain or were not able to look after ourselves then he would look after us. He also said that he would do whatever he could to take the pain away. George should not be thinking of things like this. He should be out having fun, playing football, running around the park and just being normal. George is so kind and thoughtful. Even after all that he has been through he is still thinking of us, his parents and how he would look after us. He is so kind. We will try to have a fun Sunday. We will let George do whatever he wants. This is his day and we hope that he has a great day. He truly deserves it. He is one in a million and the bravest boy in the world. We love him so much, he is our life and we will do whatever we can to continue that love and life.

Friday 28th September

George woke and was his usual self. We went to have the ultrasound scan. We were so nervous at what they might find. Once the scan was completed we headed back to the ward. We were informed that the scan did not show any signs of a blood clot. A Doctor came to visit George and asked several questions. She then examined him. A while later another Doctor entered our room. We were told that George’s liver was enlarged. They had done a test on George’s blood and it was not clotting properly. This could be because his liver was not functioning properly. She then went on to explain that the reason for this was probably because the NB had spread to his liver. To us the whole room was silent for a while, as we did not know how to comprehend this information, let alone deal with it. We looked at each other for support, a reason or even a word, but there were none. The Doctors were talking to us, but we could not hear them. We were not prepared for this. How could this be happening. We had always thought that we had things under control. Yet again Neuroblastoma had totally devastated us. What now? Could George still have the MIBG Treatment and try to beat this terrible disease? It was late on Friday when we received this news. We would have to wait until Monday to find out if George would receive the MIBG Treatment. We are now in limbo, we do not know what will happen on Monday. We can only take one day at a time. This is so hard, difficult and totally heartbreaking when it is your childs life. We then had to inform our family of this devastating news. We were told that we could take George home and that the Community Team would be able to administer his new medication through his hickman line. Yet again we will try and be as normal as possible in front of George, because he can never know how seriously ill he is.

Thursday 27th September

George had a platelet transfusion during the night. His leg was still causing him pain. We were informed that due to George having an infection, we would have to stay in the hospital for 48hours for him to receive IV antibiotics. We were then informed that George would have to have an ultrasound scan to make sure that he did not have a blood clot. The scan was booked for Friday at 10am.

Wed 26th September

We left home early today, we had allowed plenty of time for our journey into London, to attend George’s appointment at University College London Hospital. We had just made it onto the A10 and saw the massive queues. It did not take us long to realise that we would be late for our appointment. George slept most of the way. George had his eyes closed, but we feel sure that he was not totally asleep, as he does not like to miss anything! We met with George’s Doctor. He informed us of several things with regards to the MIBG treatment. He also explained that George’s red blood count (HB) had to be above 12 .The MIBG Treatment travels better around the body when there is a lot of oxygen (HB) in the blood . George also managed to spend a little time with the play specialist there.

We knew that we would not be at the hospital for too long and had promised George that we would take him to Madame Tussauds. When we were in New York George had spotted the Madame Tussauds in Time Sq. We had told him that there was no point in going to the one in New York, as he would not know that many people there. So off we went to visit Madame Tussauds. As George is in his wheelchair we went to the disabled entrance. We were then told that due to the lift not working no wheelchairs were allowed into the premises. George got really upset and started crying. We asked to speak to the Manager. He informed us that due to “Health and Safety Regulations” we would not be allowed to enter. We explained our situation, but were informed that these were the rules and that there were no exceptions. We did eventually make George laugh by telling him that it was like the time we went to see the Statue of Liberty and got the wrong ferry. George did see the funny side of it. We decided to see if would could visit the BT Tower and maybe go to the top of it. Off we went. It took a while to find the actual entrance to the building. As we approached the BT Tower we saw a big sign “NOT OPEN TO THE GENERAL PUBLIC”. We just laughed. What else did we expect!

At approx 9pm George had a pain in his leg. We massaged it and noticed that it felt quite swollen. Once again we tried to stay calm, but inside we were totally panicking. Was it the NB? Could it be a blood clot? Could George be just low on platelets? We rang our local hospital and they advised to come in for a blood test, to check George’s platelets. So we quickly packed a bag. Just as we were leaving George asked for pain relief. He does not often ask for this. We therefore realised that the pain must be bad. Once at the hospital they examined George. They told us that George may have an infection. He may also have a small bleed, inside his leg. It could be a blood clot. Or maybe he might just be low on platelets. They would have to do a blood test to see what they were dealing with. George’s blood was taken and we were told that it would take a couple of hours to get the results. George was very tired by this stage and just wanted his bed. It was 11pm at night. So we put him to bed and we stayed awake for the results. We got the results and it showed that George’s platelets were low, it also showed that George had a bacterial infection. We therefore had to stay the night at the hospital.

Monday 24th Sept

Our first thoughts this morning were that George should have been going into hospital to start his treatment. We felt that this was hanging over us all day. It has been a hard few days, trying to motivate ourselves. We are only parents at the end of the day, trying to do the best we can for our precious child. Yet again we find ourselves feeling that another wall has been put up in front of us. It is getting harder and harder to climb over these walls. There has been so many for the three of us to climb over. We will however continue to do whatever we can to continue this fight for George. We are George’s parents, we will, therefore do whatever we can to help him fight this terrible disease.

George has not got any worse, over the last few days. He still manages to walk around the house with help. He has even managed to take Tilly for a walk (well Tilly was walking and George was being pushed in his wheelchair). They are inseparable at the moment. They spend the whole time at home next to each other. It is so good for George to have Tilly. She makes him so happy. If George is happy then we are also

Friday 21st September

George had a blood test today. The results came back and he was low on platelets. We headed to our local hospital for a transfusion. George’s white blood counts are dropping also. We are so worried. This should not be happening, as he has not had chemo to effect his blood levels. We are so worried that it is the neuroblastoma. We can only wish that the next week will just fly by and that George will not become to unwell to receive this treatment.

Tuesday 18th September

We were looking forward to our week ahead, as we were going to make the most of our time at home, before the MIBG Treatment starts next week. Unfortunately we received a phone call informing us that the MIBG Treatment would not start next week. George would hopefully receive the treatment on Monday 1st October. We were informed the delay was due to certain health and safety issues involving the storage of the radioactive urine and stools from the patients in these rooms. Once again we were totally devastated. We had made the decision to bring George home for this treatment, now we were worried that the time delay would cause George to become too unwell to receive this treatment. We realise that a week is not a long period of time under normal circumstances. With Neuroblastoma a week is indeed a very long time. The disease can spread so quickly. We tried everything to see if George could get this treatment elsewhere. There is only one other Hospital in the whole of the UK that treats children with MIBG and they only have one room, this was booked. We even considered going back to New York for the treatment. We realised that we would not have enough time to organise flights, appointments and the transfer of George’s stem cells to New York. So we have to now wait another week for his treatment.

At times it is so hard for us to stay happy and normal in front of George. We still believe that as long as George’s does not see us upset or looking worried then he will not worry. He is still his usual happy go lucky self. He still manages to see the funny side of things, even when his legs are hurting him. He truly is the bravest boy in the world. All these terrible things have happened and are continuing to happen to him and he still manages to smile through it all. We have to learn from him and continue to smile, be happy and keep things as normal as possible for our brave sweet boy.

Monday 17th September

We woke up early, in the Patient Hotel at Great Ormond Street . George had to have his kidney test. This is a simple test. George just had to have bloods taken. First bloods taken were at 9am, then 12 o’clock, then the last one at 1pm.

We realise that we had made the right decision to bring George home for this next course of treatment. It was great to see him so happy with all his family. This was one of the reasons we returned home. The other reason was the money situation. We have, to date, spent all the money raised on hospital bills and medication for George. The MIBG treatment is not a cure, it will hopefully suppress the disease. The 3F8 works better with minimal disease and this is the purpose of this next treatment. We still plan to return to New York, as soon as George has recovered from his treatment here. We therefore still need to continue to raise money for George. Without this money we will be unable to return to New York.

George would never have been able to get treatment in New York, if the money had not been raised by everyone. It is because of so many kind and generous people that George was given this chance. We do not know how to begin thanking so many people for all their hard work, kindness and generosity. It is amazing that so many people care about George. George has been fighting this illness for so long. So many people have helped him fight it with their support and kindness.

Sunday 16th September

Sunday evening and we are off to the Patient Hotel in GOSH. George has his kidney test very early Monday morning. We will be there for most of the day. We have a week to go until the treatment starts. We will let George decide what he wants to do all week. This will be our first week without hospital appointments for such a long time. We will try and make the most of the week ahead of us.

The Weekend 15th September

George is eating well. His leg pain has not gone, but is better. He walks with a limp and can now go upstairs. When he comes down the stairs he walks backwards. We asked him why and he said “It is easier this way”. He cannot walk far, so we put the wheelchair in the back of the car and went for a walk with some of our family. It was great to have the day to ourselves and be out and about. George really enjoyed it. It was the first time that he had “walked” Tilly. At the end of the walk, Tilly was sitting on George’s lap in the wheelchair. George thought it was great.

Friday 14th September

Another trip to the local Hospital for George to receive platelets. We have started to really worry why his counts are dropping. Chemo normally makes George’s counts drop, but he has not had chemo since June. We dread to think that it is the Neuroblastoma. We will cope with today and deal with whatever happens tomorrow. We were in a mad rush to leave the hospital, as we had to collect the wheelchair. The lady in the shop was so nice to us. Even people we do not know are so kind. George has wanted to go to Toys R Us for a few days, but we had been unable to, since he could not walk around the shop. It was great to be able to take George around the shop in his wheelchair. He bought some of his much loved Dr Who figures and trading cards.

Thursday 13th September

George’s Community Nurse came to take bloods. We were worried about his platelet count, as they had been quite low on the previous test. We asked if George could have a wheelchair, so that we could get out more. After several phone calls we were informed that it would take approx a week to get one. We felt that George needed one sooner, as we could not go out without one. George had several visitors. A friend came to visit. He informed us that he knew someone that owned a Mobility shop. Our friend made a phone call to the shop and we were told that they would give George a wheelchair. This made us so happy. George really needed to get out and get some fresh air. We got the blood results back and George was low on platelets. We were informed that he would be okay tonight and that we should go to the Local Hospital in the morning. Well at least we had one day off from the hospitals!

George was a lot happier today. He played with Tilly and his leg pain is better. He can walk around the house with help. We are so excited about getting the wheelchair, as this will enable George to leave the house and go to whatever place he wants to go.

Wednesday 12th September

We went to UCLH for our appointment. We were told that the treatment will start on Tuesday 25th Sept. George’s HB will have to be above 12 to receive this treatment. If it is not then he will have to have blood transfusions. George will have to be admitted the day before. We were given more details about the procedures for MIBG Treatment. George would receive the MIBG for one day. He would also receive chemo over 5 days. The first day that he receives the MIBG we would not be able to sit next to him for long, as he would be radioactive. There are very strict guidelines on these procedures. As the days go on, we will be able to get nearer to him. We know that this will be very difficult for George, as we are so close and spend all our time with each other. George loves to cuddle and just lean on us. We were also told that anything that George brings into his room, will have to be left at the hospital for up to six weeks. This is to ensure that they are no longer radioactive. Our first thoughts were ‘Judy’, George’s much loved cuddly toy. He has become more attached to her in the last few weeks. George will not be happy knowing that if he takes Judy to hospital he would be going home without her. George was told all about this and got upset. His first thought was Judy. It was decided that we would go to Toys R Us and get him a new cuddly toy, just for his MIBG treatment. George was a bit happier, but he still worried about leaving Judy at home. We were shown the room that George would stay in. One of us would have to sleep in a room off George’s room. George was not happy about this situation either, as he likes us right next to him, even at night. We told him that it would be fine and that we would only be a couple off feet away from him. We headed home trying to look on the brighter side of George’s treatment. The best thing of the day was that George got Tilly back. He was so excited. That night George and Tilly headed off to bed together. He kept cuddling her and telling her that she was lovely. It made us so happy to see him with her and enjoying her company.

Tuesday 11th September

We woke up very late indeed. George’s leg pain seems a bit better. We went to the local hospital for George to receive his HB transfusion. We got back quite late from the hospital. We could not collect Tilly, as it was late and we also had our appointment at UCLH in the morning. Once again George was disappointed.

Monday 10th September

An early start for our appointment at Great Ormond Street. We had to find a wheelchair for George, as he was unable to walk from the car to the ward. We had our meeting with George’s consultant and the consultant from University College London Hospital. They explained about the MIBG Treatment. George would be totally isolated. He would be in a special room. As he will be receiving radioactive medicine we could not get too close to him for a certain period of time. An appointment was then made for us to visit UCLH on Wednesday. George then had a blood test. We were informed that George would have to have a GFR Test, this is to check kidney function, we would receive the appointment soon. GOSH prescribed George some more pain relief. We truly hope that these will take the pain away.

We had just arrived home, when GOSH rang with the blood results. We were told that the results were low and that they felt that it was a misreading. We would have to go to our local hospital for another blood test. Our local hospital felt it best that we bring an overnight bag, just in case George needed a blood transfusion. George was not happy with this news, as he knew that Tilly, his puppy, was due home today. We had to tell him that he would not see her until Tuesday.

We went to our local hospital. The blood results came back. George’s HB was low. He would need a transfusion. They said that we go home and come back early Tuesday morning. We asked if we could come in later Tuesday, as all three of us were suffering from Jet Lag, we were finding it hard to keep our eyes open. They told us to be in for 1pm. We eventually arrived home at 11pm. We were all exhausted, especially George.

Sunday 9th September

Sunday night/early morning George woke in severe pain. He was awake for a couple of hours. George was crying out in pain. As any parent will know, it is heart breaking to watch your child in so much pain. We gave him some pain relief. He asked if we could get more pain relief at GOSH for him in the morning. The pain relief kicked in and George eventually fell asleep. He was so exhausted.

Saturday 8th September

The flight home went well. We flew with Virgin. All the staff were so nice to George. He was treated like royalty, which he really liked. George was not in much pain on the journey home. We were met at the Airport by many family members. There were lots of tears. Even George got upset, but they were happy tears.

The rest of the weekend was spent seeing all the family and spending time together.

Monday 3rd September- Thursday 6th September

This whole week has been a waiting game. We discussed having the MIBG treatment at home, many families go home for treatment if it is available at their local hospitals, this is our aim if possible as it is available at home. This treatment would mean a lot of hospitalisation, over a lengthy time period, Why not then be at home for this we thought. We had spoken to Doctors here and also back in the UK. We also had to make sure that George’s blood level of NB had not increased too much since his last test. We were worried that if we took George home we would not receive the treatment quick enough. Time is never on your side when NB is involved. We were so worried that George’s level would be high. We got the result back and were told that we were able to travel back home for this treatment.

We told George today that we were going home. At first he did not believe us and then he started to cry. We asked him why he was crying and he said “I can see Tilly again”, that’s his puppy. We said “Are they happy tears then?” George replied “Yes they are, but I am sad to be leaving here as well”. We had to yet again, hold back our tears. There have been some good and fun times. George has met so many kind people that he and we, have bonded with and we feel like we have known all these wonderful people and families for years.

We have to leave here over the weekend. We are currently trying to sort out the flights We have a hospital appointment on Monday morning at Great Ormond Street Hospital (GOSH). In himself George is in good humour. He can not walk, due to the pain in his leg. He said today that he will miss his wheelchair! We must get one organised for home. He is eating and drinking well. We are looking forward to going home to see everyone but at the same time we will miss people at The Ronald McDonald House.

George has an appointment at the hospital here on Friday morning (7 Sep). This is to check his bloods, to make sure he does not need any transfusions before we go home. The nurses are lovely at the hospital and we are not looking forward to George saying Goodbye to them for the time being. Feel sure that it will be an emotional visit. George bonds with everybody we meet, any goodbye for whatever length of time can be emotional, as George is so loving and caring.

All that is left for us to do now is our packing. It is amazing how many toys, games and other things that George has been given, since we got here. We realise that they will not all fit in the 3 cases we arrived here with. We will have to pop out at some stage and buy another case or very large bag!

We are dreading saying Goodbye to everyone at Ronald McDonald House. We will miss them all so much. The staff and all the families here are so supportive. We know that we will miss their support so much when we return home.

We live in hope that the MIBG Treatment will have an effect on the NB. We can then return to New York, for the next stage of treatment.

Our time in New York has been tough on George. It amazes us that he can still be so strong, after all that he has gone through. To us George is the bravest boy in the world. He gives us so much strength. When we are with him he makes us so happy. He loves to cuddle and tell us how “we are the best”. George is the best, not us. He has been through so much, at such an early age. We will continue to get strength from him. Without him we have no strength at all.

The Weekend 1st & 2nd September

We put George in his wheelchair and took him to Central Park. It is such a beautiful place and so quiet compared to the rest of New York. We walked for a few hours. There were lots of skaters in the park and they were all skating to music. George really enjoyed watching them. We have spent a lot of time with other families in the house. They are all so kind and supportive. George is eating really well. He can be his usual funny self, but is quiet at times. He still can not walk for long and has a limp when he walks. As before, we will try and enjoy the weekend as much as we can. We have to ensure that George is having as much fun as he can. We hope that he can have a great and “normal” weekend. We could never put into words our fear of the next few days, but we have to get on with it and deal with whatever is going to happen.

Thursday and Friday 30th & 31st August

We have spent the last couple of days just with each other. We have stayed in bed, until really late. Just cuddling and being near each other. We have watched a lot of George’s favourite programmes on Telly. We did not venture out much, only to buy George’s much loved High School Musical 2 CD. George spent most of the night, just listening to it and learning the words. George even tries to dance the dance moves from the film, which makes us so happy. George is more of himself now. He has started to eat more, which is great. He had bangers and mash for dinner tonight and even wanted ice cream after this. George is so full of life. As any 9 year old would be. We went downstairs to the dinning room later and George played with the other children. George started to eat Dairy Lea Triangles. We had to then venture out for more Dairy Lea triangles, as we run out. We also had to get more of his favourite crisps to eat, while watching his new DVD . The hunger is kicking in. George is so
strong and brave at the moment. We have to be the same.

Wednesday - Scan day 29th August

George had an appointment with the radiotherapy people today, because of the pain in his leg. We went to the appointment, but had to leave for George to get his MIBG Scan. He was so good, he just got on the table, knowing that he would be there for a couple of hours. We asked if he wanted us to read him his much loved book, but he just wanted to “relax for a while”. George lay on the bed. We sat there looking at the floor. We were too scared to look up at the monitor screens in the room. As we would see things that we really do not want to see. NB shows up on the scans as a bright glow, we did not want to sit there for hours watching this happening. George wanted us to read to him, about half way through the scan, which we did. It took his mind off the problem and ours. After the scan we had to return to Peds Ward for our appointment with George’s Doctor. We were first seen by a nurse. She told us that George’s stool sample, that had been taken whilst he was in hospital, had come
back positive. George would therefore need to have antibiotics. Not a problem we thought. While we were sitting in Peds, waiting to be seen, we were so scared and worried. We knew that the Doctors could get the scan results and read them themselves. We were sitting there knowing that someone was looking at the results. We did not even speak to each other. We could not say a word to each other, as we were so scared. We were then called into the office to meet with George’s Doctor. George’s Doctor checked George out and then asked him if he wanted to go to the playroom. Bad sign. George said he would go to the playroom and our hearts dropped. The tumour on George’s head did not show up on the scan. Therefore it is free of disease. Although he still has a lump there, it is probably scar tissue. We were then told that George’s scan had showed that the disease had progressed since the last one. We were so shocked. It took a while for “the penny to drop”. We did not know what to say.
Again, we were lost for words. What could anyone say when faced with our situation. We were told about the options that were now available for George. The 3F8 only works well with minimal disease, so we have to try and minimise it before anymore 3F8. We are just parents at the end of the day. How can we even comprehend these options, let alone make decisions. We stayed in the meeting listening to George’s options. There was more chemo, which they did not think would work at this stage. George has had so much chemo, we all think that the NB has just got used to it at the present time. Another option was MIBG Treatment. This is a treatment involving radiotherapy. As George’s tumour, on his head, had responded to radiotherapy then the disease may not be resistant to it. We can get this treatment in New York. We would have to get George’s stem cells sent over from England, for after this treatment. We may also be able to receive this treatment at home, if it can be organised quick
enough. It maybe quicker to go home for the treatment than to get the stem cells sent out to us. We can only hope that we can go home, to England for the MIBG Treatment. Once George has recovered from this, then we can return to New York and get further treatment, through a different 3F8 treatment called hot 3F8. We should know by Tuesday where George will receive the MIBG treatment. We are so “in limbo” at the moment. We have all heard of the expression “the weight of the world on your shoulders”. We had never really thought about this expression before. We now know what this really means. Our shoulders ache. We feel like we have been in a boxing ring. We are aching all over. This is purely through worry, upset and stress We will continue to be happy and normal with George. Inside our minds it is a totally different story.

Tuesday 28th August

We had to go to the hospital for George to receive the MIBG injection, for his MIBG Scan tomorrow. We arrived on time for the appointment, but we were asked George’s weight and height. We knew that he had lost weight, as he had not been eating. We had to go to the Peds Ward to obtain his weight and height. They weighed George and he had lost 5 kg, since last being weighed. We were then asked if George had taken his SK11 medication to protect his thyroid, as the MIBG injection can harm them. We told them that we had not been given this. George then had to take this medication. We had to wait 2 hours for the medication to work. We finally arrived at Nuclear Medicines for George to have his injection, better late then never. George did start to panic a bit before getting the injection, but he soon calmed down. The injection is given through his hickman line, so that makes it a little easier. By the time we had done all of this the whole day has just passed us by. George is more of
himself today and that makes us a bit happier. George has had the MIBG injection, this means he will have the MIBG Scan in the morning. We are so worried about this scan, as it highlights the NB in George’s body. We tried to have a nice evening together, but the scan is never far from our minds.

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.

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