Wednesday, 23 May 2012

may 23 rd Reality kicks in!

Well I spent till lunch time thinking that it was Thursday! Just illustrates what a bubble I am in! I even got Harry to fill in his sticker chart for Thursday! Well I managed to enjoy the sun yesterday. I met Ayshea up at The Craiglands hotel to have a meeting with the events organiser. On the way I had the windows down and was blasting out the rock tunes of Billy Idol and it made me smile as 2 school boys aged around 15 started dancing on the path to my tunes as I got stuck in traffic! So the ball is on track and most details finalised. I think we have table decorations under control at little cost too as the hotel have some glass bowls we can borrow, meaning more money for charity! Not giving all details away though! Ayshea and myself enjoyed lunch on the veranda, nearly ladies that lunch, but for the sleeping Leo (ayshea's little boy), but at least he slept! Paul and I enjoyed a walk exploring the fields behind our house in the sunshine. I can't wait to take the boys for a walk there now. My parents went to see Harry so Paul and I could have a couple of hours overlap at home. So I came back to LGI last night. Harry was beginning to get erratic, as expected, however still had bursts of energy. We went for a walk down the corridors and since he had been disconnected from his medicines and trolley he was free to roam and enjoyed having a run! We even went outside for 10 mins. Don't think we were really supposed to due to the air not being as clean, however, I couldn't resist letting Harry feel the warmth of the sunshine, particularly as he has not been outside for a week and won't now be able to go outside for a few weeks, though the length of time depends on how quickly Harry's immune system picks up after his stem cell transplant. Harry couldn't believe how warm it was outside, it was one of those Mediterranean evenings that you long for! Just a shame we are in this situation and not at home with the paddling pool and sand pit, oh and a glass of wine for mummy and daddy! We have managed to get Skype, which has its good points and bad. It's great for the kids to see each other, but heartbreaking when you can see them cry because they want you with them. Callum was funny though when I asked him to give me a kiss and he quite rightly told me he couldn't because I wasn't in the room! However, he is getting good at blowing kisses. Harry woke up this morning in fantastic spirits and far too lively for the staff on this ward, whom are used to dealing with very poorly children! He was running up and down the short corridor pretending to be an aeroplane! The staff on this ward are not quite so chatty as on the other ward. I guess they are used to really poorly children and not so used to engaging with them. Harry has been so pleased to see his favourite nurse from ward 31 come over and see him. His face lights up! She's called Kate and Harry is completely smitten! He has been sending her messages via the pod system, from ward 31 to ward 32. She has been sending him pictures to colour in, he can't wait for her to come and do the night shift on Thursday on this ward. I'm sure he'll go to sleep with one eye open! He has high hopes and yesterday said he hoped he would get one hundred and fifty six thousand kisses at the end of his next note from her! By this afternoon, the lively Harry that greeted me this morning was long gone. A lethargic, erratic Harry was in his place. This is very much to be expected and it was thought that he would have crashed and burned well before now! However, it is hard to see Harry so vulnerable and agitated. It's hard to console a little boy who just wants to go home! I think reality has kicked in! Harry has had a fabulous first week, but now his body needs to set to work, in regrowing his bone marrow and to do this his energy levels have plummeted. He had the first lot of his stem cells put back in him today. They were delivered in a large capsule filled with liquid nitrogen to protect them. The nurse extracting them has to wear goggles and gloves to protect herself from frost bite! It's like a sci-fi movie as they come out and they are enshrined in a cloud of icy air! They are defrosted and then infused back into Harry! It is magic! The preservative used has a sweet corn smell and this comes out of Harry's pores. There is a faint smell of sweet corn in the room now and will be for the next 3 days! I learnt today from someone whom thought I was involved in the Neuroblastoma Face Book community, so thought i knew already, that 2 boys who have been on Harry's ward have died. Both relapsed around January/February 2012 I think and had chemo to extend their lives, but lost the fight. They both had Neuroblastoma cancer. This just brings us crashing down to reality and aware of the harshness of this cancer Harry has. We know we are in for a tough couple of weeks as Harry's body works so hard to replenish itself. We have to say our prayers that Harry recovers quickly and is out to enjoy the summer, so we can have some good times before he starts school. We have to live so much in the present, the future so much more unknown than ever before. I know no one knows when their time is up, which is good. This has been confirmed by the death of my parents neighbour, Barry, whom is in their early 60s and died in the night with no warning. He was an incredibly active community man and will be missed. Our thoughts are with Jean and her family. I know one of the children i was discussing above, who died, was having fund raising events to raise £500 000 for treatment in America. We have discussed this treatment with our consultant whom disagrees with it and feels there is not enough evidence to validate the treatment and therefore that is why it is not available in the uk. The uk do have a trial that incorporates giving antibodies to the child, which Harry will get. This treatment in America is on the lines of further antibody treatment. I don't know enough about it all, however, do trust my consultant and feel that if she does not feel this treatment in America is appropriate, then it is probably a long shot, that is hugely expensive and the statistics of success not enough to warrant it becoming part of the European Neuroblastoma treatment protocol. This is partly why I avoid these Facebook sites as they can get you in a frenzy believing you need to raise this money in case of relapse. Stress is high already, without campaigning for a route which may never be needed and one that is basically a long shot! Having also watched the recent great ormond street programme based on the oncology ward, I was very much appreciative of the honesty of the consultant that was treating the little girl with brain tumours, whom was against a trip to America for treatment. It was evident that the treatment had remained a trial for 35 years, so if success was that great, why had it not progressed to becoming protocol. I am aware that money can be parted with too easily in such situations of loss and despair. However, some companies have no values and can easily take pray on the vulnerable. From the documentary it was also evident that if treatment is taken abroad and is away from the knowledge area of your consultant, then they will find it hard to provide follow up treatment once back in the uk. To research treatment is not a bad thing, then discuss with your consultant and even get second or third opinions, however the cancer world is small and I know their are worldwide conferences where knowledge is shared. Currently our focus is on getting Harry through this stage and onto the next leg of the journey. I hope Harry never relapses, but if he did, then I hope we approach it sensible and provide him with treatment that would prolong the quality of his life as long as possible. As Alex Sharpe's family are doing. Alex relapsed in march, but is having chemo to keep the Neuroblastoma cancer cells from spreading and to reduce it for as long as possible. By the sounds of it, he is having a great time at the moment. Long may it continue. This is all quite morbid I know, but a reality of our lives. As you all play out in the sunshine this week, play a bit harder for Harry too please, who can't join in at present! Long may the sunshine continue!

1 comment:

  1. I still can't get paragraphs. Well they don't appear on the I pad despite putting 2 whole lines in between them! Grrrrrrr! Technology!