Tuesday, 26 June 2012

26th June home time!

well would you believe it's been 2 months since Harry had his tumour removed via an 8 hour operation! Seems a long time ago! That is because we have just jumped another hurdle of Harry's treatment plan and that is him having his high dose chemo, which wiped out his bone marrow and at the same time blasted any remaining cancerous cells in his bones and bone marrow. He then had his stem cells replaced, which has enabled his bone marrow to regrow. He managed very well for the first 10 days here. We arrived on 16 th May. He then well and truly crashed and burned as expected, then picked up, then crashed again with this veno occlusive disease which is blocked veins in his liver. Harry was very compliant as said and as a result recovered from this in about week and a half! It Seemed like eternity, but as said intensive care could very easily have been our destination, but thankfully it wasn't! So since 18 th June whereby Harry was attached to 5 machines and was the wire man, with his many tubes dangling from him! However, now he is off everything intravenously. yey! He was sick quite a bit last week, as his gut got used to his feeds again, rather than intravenous food. He has moved over the weekend towards taking his normal feed, which has higher calories. He has kept this down and we think fingers crossed is ok to tolerate this. He is on feeds night and day currently. Once home, we hope his appetite comes back and he will eat proper food ASAP! It has been a rollercoaster 6 weeks. We have warmed to the nurses on this ward and they have warmed in turn to Harry's vibrant nature! It will be strange to go home. Talking of home, discharge is to be tomorrow! Yippee! Though slightly apprehensive as his immunity is low and so he is still very much at risk of picking up infections. We are to return on Saturday for Harry to have a platelet transfusion and hopefully we can stretch these out to every 3 days. Over the forthcoming weeks his platelets will maintain themselves and currently this level of transfusions is as expected after the treatment process he has gone through. It will be strange to have a front door, whereby our space is private again. It has been hard at times having everybody come in and out of the room so much. Coming out of the shower, dressed of course! But getting my hair combed in front of nurses, trying to find my deodorant etc with others often around. Also sharing space with Harry all the time! So 6 weeks it has been! Harry has done very well to come thus far, including getting over his liver complication! Harry is a very strong boy. We do need to remember what he has been through, like today he was running about like a mad man for a while, but became tearful and tired this afternoon and slept soundly for 2 hours! This is unusual, as Harry doesn't often sleep in the daytime, but illustrates how fatigued exertion of energy makes him! we need to remember that it'll take a while for him to build his stamina up and we need to work on this once home. He has been confined solely to his bedroom and more recently the very short corridor outside the 4 rooms on the bone marrow unit. Therefore, he has not been able to move around to any great degree. Therefore, suddenly being home with space will soon exhaust him! However, Harry is determined! We did have some fun at the weekend though and went to see Bruce Springstein in concert! 3 1/2 hours Bruce worked the stage and at 62! I couldn't do that now! Not that anyone would pay to see me perform and work the stage! Ha ha! My friend Jenny stayed with Harry in hospital. Unfortunately, he wasn't as settled as hoped, partly due to his gut still getting used to the feed. However, all survived - thank you Jenny! My parents had Callum for the first time to stay the night, so thank you too! So Paul and I returned to an empty house, which felt a little strange! The next day we took Callum to Sherburn Airfield. The flying club put on a fun day for Candlelighters each year. We had hoped Harry could come, but alas no. However, we all had fun. Paul went up in a little aeroplane, Callum and I went in a fire engine down the old runway with lights and sirens on and we all squeezed, and I mean squeezed, my knees were next to my chin, in a TVR with dinky seats in the back. Again down the runway! Paul of course had a trip on his own going faster down the runway in another TVR! We just hope we can take Harry next year as he would have loved it. Oh and I missed out the bouncy castle that Callum loved too! Callum was also able to see his brother at the weekend and both played lovely for a few hours Saturday and Sunday! Harry said yesterday that what he was looking forward to most about going home was seeing Callum! They fight, but they love each other. Sooooo home it is. It'll take a while to settle back in. paul has started his new job and we have to get used to him not being there lots again, having spent the last few weeks with his family! Life goes on! So the next step... An assessment on thurs in the radiotherapy department for Harry. Radiotherapy is unlikely to start for another month, but the idea is to talk to Harry and ourselves about the process. Then another 6 months of drugs after that to prevent the cancer coming back! So March roughly, when we hope to be at the end of the treatment program! As said, as we are progressing through each hurdle and getting nearer the other side, many are beginning their treatment. I saw one 16 year old's mum today, due to her cancer she has to have her leg amputated in a couple of weeks! Life is so hard at times, the twists and the unexpected! So when dreading the 6 week holidays from school, try to think that you have healthy kids. Child care issues may be a pain, but at least you are all able to enjoy life, as many undergo viscious life saving treatment and I will try and hold that thought as I may too spurn the holidays when back at work!

Sunday, 24 June 2012

sunday 24th June The Secret Millionaire

Just a reminder that The Secret Millionaire in which Harry will be in, is on tonight on channel 4 at 9pm not Monday as scheduled previously! Harry was filmed in relation to Little Heroes charity http://www.littleheroes.org.uk/ They provide toys for children on oncology wards to bring a smile to their face, they also provide grants to help families particularly when long stays in hospital are necessary for the treatment of the child. They are based inn Bradford. Harry was filmed opening a toy!

Harry is doing really well. He's off everything intravenously now. Though he's found it tough having food back in his gut and has been sick lots as a side effect. However last night he wasn't sick yey! He's also still needing blood transfusion every other day. His neutrophils vary, he is still neutropenic. They rose on Friday and we thought he may be let out on day release, but then they dropped, so alas still isolated.

Hopefully he will be discharged by next weekend though! He's begining to get fed up with the enclosed space!

Monday, 18 June 2012

18th June Paul's 40 th birthday!

Well another week has passed. Another week of extreme emotions, as we were bystanders watching Harry go through this awful veno occlusive disease. Harry himself has been very poorly and mainly bed ridden, until this weekend, whereby he has perked up and continues to go from strength to strength. Harry has been described by the nurses on the ward and even his consultant as the perfect patient! A very highly regarded compliment. This is because although Harry has been so poorly, he has been compliant. Via getting on the scales twice a day to be weighed, his fluid retention could be managed effectively. Via not drinking more than he was asked to, he has managed to keep his fluid levels where the medics feel comfortable. Sue his consultant feels he has come through this very well, as parents we are not so sure, but then, if Harry had not been compliant, his tummy would have swelled more, which is common and intensive care could have been our destination by the end of the week, rather than seeing Harry get up out of bed and score 30 goals in the basket that the physio has lent him. Harry is the model of what empowerment means. How if you spend time discussing with the patient why and what is happening and what they need to do to get better, then Harry has control over making a difference and a speedier recovery. Such as being in control of measuring out his 20 ml per hour fluid intake. Making the decision to have 10 ml of orange and 10 of elderflower cordial, that his beloved Grandad makes! He listens to the doctors and takes on board what they say. On Friday he got told by the doctor he could drink what he liked, but on Saturday he would be back to drinking measured amounts as his intravenous feed would be increased. When it came to Saturday and I just gave him the cup to drink out of, he said no mummy we have to measure it today! As he has been bed ridden much of the week the physios saw him. They wanted him to wear these funny boots to stretch the muscles at the back of his legs. however, he refused to wear them. Daddy decided Harry could get up and walk round his bed several times 3 x day instead of wearing these boots and so he has been keen to do this. In fact last night he ran up and down the corridor a couple of times outside his bedroom, but still with special clean air, to exercise! Harry has incredible determination and won't be laid flat out for long! So he is making great progress. Home next week could be a possibility. however, not getting too excited as his immunity is very low and an infection could strike at any time. When at home due to his immunity being low, even supermarkets are out, due to the risk of catching something from others. So once Home I do hope the weather is fine as there are lots of things we can do outside, where germs are not spread so fast. We also need Harry's platelets to stabilise as currently he he is needing a transfusion every other day. This will hopefully improve to 3 x week. Though that still means frequent trips to LGI. We have a date next week to take Harry for his first assessment for radiotherapy. So even before we have a discharge date from here, the next leg of the treatment plan is on the horizon. It's been Paul's 40 th birthday today and we had a buffet lunch in Harry's bedroom. Harry and i put banners up to decorate his bedroom. Callum came for the festivities and this is the first time Callum has seen Harry in 4 weeks. It took about an hour for Callum to thaw, but once he did the boys were having great fun. My search for suitable service provision continues and I am awaiting a multi disciplinary meeting to see what can be offered. I think a mish mash of services, therefore lots of different people for Harry, but until we have the meeting I cannot ascertain exactly what. So following that I will have to study what is on offer and see how it can best fit us. I did meet with my new social worker, but was less than impressed when told I could have 3 hours respite a week, but not if I am to use this to go back to work, as social services would see this as supplementing my child care costs! I am still mad at the system, how disjointed all the departments are and that means disjointed budgets. It doesn't matter that if I did not work at all, that I can claim a bit more in benefits, thus not being a tax payer, however via working a bit I need a few quid spent on services, whilst Harry cannot go to nursery due to his health needs. What is best for the economy, me working, paying taxes and throwing a few quid at me to enable a service to be provided that meets Harry's needs until he is fit enough to go to nursery again. Also via keeping me working I am more likely to continue to do so and up my hours when I can, back to my contracted hours. Via not working, then it can be hard to get back into the workplace when able, thus being a greater burden on society generally! However, I cannot fight the system and I know that. So have parked some thoughts and will just wait and see what is on offer. The main thing is that Harry is on the up and to see happy smiley Harry makes us all smile with him!

Monday, 11 June 2012

11th June - veno occlusive disease!

Veno Occlusive Disease is what Harry has. it is blocked veins that go into his liver. This is caused by his high dose chemo. It happens in about 20% of cases. it should be rectify able, and hopefully we will se some improvement by the end of the week, fingers crossed. It has caused Harry's liver to enlarge. He has been incredible restless the last 3 nights. He has been vomiting lots too. This Veno problem is also a reason why his platelet count has remained so low and he is on his 7 th day of consecutive platelet transfusions. He was intolerable pain much of last night, thankfully the charge nurse was on this morning and around 10 am I said enough is enough, he Is in too much pain, luckily Julie had got hold of the doctor to review Harry and fairly sharp ish Morphine was administered, which had a quick calming effect on him. If I could I would have had some too. I can't imagine how Harry felt, but was just beside himself and I was at the point where I could not watch anymore. However, he as been settled for the rest of the day and is asleep now. He rarely sleeps in the day, his eyes close briefly, but he won't give in. I wish he would as he just wants to hold my hand all the time and doesn't like me going out of the room for anything. luckily Janey our volunteer play worker visited today and enabled me to pop to the shop and get some fresh air. Paul was at home looking after Callum today. Today, I have gone back to the thoughts I had back in November about chemotherapy as the side effects are awful for Harry to endure and also horrific to watch helplessly as a bystander. We saw Harry's consultant today and the specific chemo Harry has had recently has been trialled as the best in creating better survival rates and ths recent Veno problem is just something that can happen, but still better for the child to endure if we want more chance of him seeing a much older age. So here we are. However, more drugs, an additional machine, thus means more beeps. A few days ago, Harry was coming off IV fluids and food and taking some food down his NG tube. We were encouraging him to drink. However, things couldn't be further away than a few days ago and the state of play is to discourage Harry from drinking anything other than a sip, so as not to overload his liver. His NG feed has been stopped too. Harry is very thirsty and it is incredibly difficult to explain to Harry that he can't drink much. I have had to explain that drinking too much, will make his liver more poorly, thus creating a longer stay in hospital and that we want him out ASAP so we an have a holiday. We have the candlelighters caravan for a week in July, but if we can't go we are going to have to go somewhere as soon as is logistically possible!

Saturday, 9 June 2012

Sat 9 th June. Harry has dipped

Well we were very positive at the beginning of the week, that Harry's stay may be shorter than expected. We felt very positive and his blood scores were going up, apart from his platelet level, though that one was expected to stay low for some time. We also knew despite the good counts, Harry was still susceptible to infection, but even the consultant was impressed with Harry's progress so that made us feel good. However, Harry is not so good today. his neutrophils have dipped and so have his other blood scores. he has had his 5 th platelet transfusion and first haemaglobin transfusion of the week today. He has also spiked a temperature at various times today and so he is back on both his intravenous antibiotics. they had taken him off one of them. Harry has also been struggling to pass urine and so has been given a diuretic to help him wee more. Weeing is very important as he has fluid pumped into his body and so he needs to excrete a certain amount to ensure that fluid is not building up in his body. Harry when weighed today had put on a kg, which meant that he is storing fluid. his body is beginning to look puffy! Therefore he is having a liver scan tomorrow, so they can assess if there are any problems in this area. chemotherapy can cause liver functioning problems. We had hoped Harry had avoided any of this and it may all be speculation too at this moment in time. it could be that the diuretics do the trick and he starts passing enough urine again. Liver functioning problems can be short term and reversible. We await the scan results, but more importantly Harry's consultant's take on them too. So that's Harry's imminent health situation up to date. My rant at present is about service provision! Some are bored already from some posts I put on Face Book, however, I will just briefly discuss why I am disgruntled! Back in March, health talked about having a multi disciplinary meeting to get all service providers around a table to discuss a package of care for Harry. I hear nothing, so ask my McMillan nurse to get onto it. I gather at another meeting that health, by that I mean the community nursing team, have some services on offer to be arranged when Harry comes out of this big stay in hospital. My social worker closed my case in March as she was leaving and we had no social service provision, so seemed no reason to keep it open. However, from my discussion this week with the community nursing team, it transpires that they thought that social services was responsible for arranging this multi disciplinary meeting, but the worker left and closed my case! So no meeting and as it transpires from a few phone calls to health, 3 hours a week respite is all that is on offer. Possible adding another 5 when another contract is secured, but probably a couple of months down the line. So I scoff at 3 hours! Whoopi Do, I should be dancing in the street! I am honoured! I think not. I should outline why I need services. Harry's immunity will be low till mid or maybe the end of August and so he cannot go to nursery. Therefore I want services to provide stimulation to Harry, particularly in the crucial month of August before he starts school. This I am sure they will throw at me is technically the summer holiday in terms of the academic world, but considering Harry has only attended nursery for a handful of days this year, I think it should be about need. I also want to get back to work for a few hours each week. I was hoping for more care provision to enable me to get back to work a bit. It annoys me that nobody ever looks at the big picture. I have been told by my McMillan nurse that many parents give up work during this stressful time. It is true that I have felt too involved with Harry's care to be able to work and function as I should. However, there is also something about trying to work and refocus on something else that is not Harry to keep my mental health, well healthy. It is easy to obsess about lots of things and because my life feels on hold, to get distracted by the fun others have etc. etc. Also to continue to work, means I continue to be a tax payer and thus making the economy go round. Via working I am paying into a pension, ok may end up worthless, but I am a contributing member of society. Therefore to provide some services, which will be needed only short term, to me makes sense. But then when did anything sensible happen! I am only suggesting I work half my hours if possible, maybe 12 to start with, so 1 1/2 days respite is required. Well following further phone calls, if it all works out Harry will be allocated a CLIC Sargent volunteer on a fRiday. Not sure what hours, but hopefully enough to enable me to work. So from my hard work of ringing about 5 different services last Wednesday and using my valuable hour of respite on the ward, when a Candleligheter worker played with Harry, I may have an adequate package of care. but I should not have to be co-ordinating my own package of care. In adult service where I work, I feel that, as a social worker that is one of our key responsibilities, is to co-ordinate a package of care in conjunction with a multi disciplinary team. our role is to ensure all services come together and meet the service users needs. of course cuts in services limit what you can provide, but good communication skills enable this to be well, communicated! I also have Janey our volunteer play worker who I know will also help out. I was put in contact with Janey via education Leeds, when I was ranting about Harry not accessing the 15 hours a week that every 3 and a bit child is entitled to! So being persistent does work. as you can see if still reading, that the majority of the care package will be from voluntary services. So Mr David Camron you can see that The big society you talk about does exist! There is one subject I would like to touch upon too before I sign off. That is the fact that I never asked the medical profession to intervene in the way they have. It has just happened. Yes I have had to sign consent forms for this and that test, so no I have not just been a bystander. However, had medical intervention not occurred last November, Harry would be dead. So I am very pleased he is still here, medical intervention has provided Harry with the hope of a life, but currently due to medical intervention he cannot do the things his peers do. If cancer had not occured, I would be working 3 days a week and Harry would be in nursery for those days. Due to medical intervention then Harry is not medically fit enough to attend nursery and this has a knock on effect for me being able to work. I feel just as medical intervention has taken place, so should the services be available at the main focal points whereby Harry is not fit enough to attend nursery. It all brings back thoughts I had following a documentary I watched regarding the ethics around saving babies born at 24 weeks. Medical intervention meant these babies had some hope of survival. A large percentage despite the intervention did not make it and out of the ones that did, many had lifelong disabilities. Now I am not saying don't save these babies, but it was evident that for the ones that lived and had the disabilities that once the child in particular reached 18, then there was not the service provision to provide these people, with the quality of life that they deserve. I guess what i am saying is that medical intervention saves lives, but the lives after the intervention are not always ones that can fit into mainstream services and so health and social care should meet this need. It is not right to save a life, then not have adequate service provision to maximise that persons quality of life! I guess have you really saved a life if that person cannot get adequate services to try and live the life they want to and feels oppressed and on the fringe of society due to their disability! It's when lack of services mean a person is disadvantaged from their peers and this then causes depression etc and huge carer stress, as frequently family have to continue their caring role, often for the rest of their lives.

Tuesday, 5 June 2012

Tuesday 5th june

Harry, was very lethargic this morning, but it transpired from his daily blood counts that he needed a platelet transfusion. This was given in the afternoon. He then summoned enough energy to do some painting and has created 'the tarn'! Harry's neutrophils ate 0.45 today, they were 0.18 yesterday do he is recovering well. We saw Harry's consultant today and she is impressed with his progress! She even thought it wasn't unrealistic that we should get away for our Candlelighters holiday in Filey in July. So we have some hope for some forthcoming fun! Harry has been through so much, more than you can ever even imagine at the beginning of this process. He deserves some fun. I do hope the sun shines upon us! We have met a new family who's daughter most likely has Lymphoma cancer, but is undergoing tests to confirm this. Their world came crashing down around them on Friday and so their Jubilee weekend has been a wash out literally. We told them how far we have cone and they were truly overwhelmed at our journey so far. It's strange as they may well have a similar journey ahead, but at the beginning you cannot envisage living with cancer for months ahead. It's just about 7 months in our case. They are probably at thd beginning of all this and they are just getting their heads around it all. I know on thd children's oncology ward a fortnight ago there were 9 new cases of diagnosed cancer. I can so truly remember those first few weeks, like it was yesterday. So as we are hopefully heading towards the last couple of legs of our treatment plan, we know that there are many at the beginning. So today we feel that we are coming out of the other side of this bit if the treatment plan and the light at the end if the tunnel is in sight! Kansas city is once again on the horizon and the tin man will have a heart!

Monday, 4 June 2012

4th June - Harry's making a come back!

Well I can't really get across how the last week has been. To hell and back probably best describes it! Emotions running at an all time high! To be told that all this medical intervention will make harry poorly is one thing, but to be witnessing it is another. It makes your heart ache beyond belief to see Harry become this lifeless little boy. Partly because you know how dangerous and precarious this process is. Like having an operation there are always risks, however with this 'operation' the timescales are far less defined and really 'how long is a piece of string'. So to have Harry lifeless from Monday till Friday has been the longest 5 days imaginable. It has felt like a 5 day operation. Harry's neutrophils went to zero mid week as expected. Literally rock bottom for Harry's little body! Around the middle of the week I was told Harry may have c - diff a short name for a very nasty diarrhoea infection, which is so hard to get rid of, particularly as his immunity was zero. I had thought of chest infections, pneumonia, but not this. I have seen too many people in my line of work get this and it is very debilitating, particularly when the body is so weak and unable to fight infection. The good news after Harry's stool sample went through further testing was he did not have this. However, for a short while the thought of it devastated me. The implications would have been no visitors except me and Paul because if it being so contagious to others. The thought of it just being me and Paul just made me tearful each time I thought about it! With Harry lifeless and the interruptions from nurses and doctors frequent, as are the beeps from the machines Harry is attached to, makes it hard to concentrate on anything for long. The mind therefore works on overtime at times! It goes to the darkest places unfortunately. Part of me thought Harry was well enough to have quality of life before this latest treatment (although i know without it his life would almost defiantely be shortened), if he died then I'd regret he never went on that aeroplane,or helicopter or ferry etc. I kept thinking even if Harry dies from all this in the end we have not had enough special moments! We have been talking about making some of Harry's dreams come true, it keeps us going! To try and plan ahead and think the future is bright and for grabbing as many opportunities to have fun as possible! Before Harry had to endure so much treatment, i had heard of charities that make dreams come true for sick children, but not given them much thought. However, i realise how important they are, as your child needs carrots to keep them going. They miss out on so much of normal daily life, the trips to the park, the recent sunshine, that to arrange treats and special days out becomes important and a focul point to aim for. So the local charity Make a Dream, that arranges less expensive,  but equally exciting day trips may be tapped into by us if possible in the forthcoming months.

So it was our 9 th wedding anniversary on Wednesday. I had a meeting with Paul at home with the children's centre to discuss services on offer for Callum. Following the meeting I felt so emotionally exhausted that I bawled my eyes out. Explaining everything again to a new service and discussing how I do feel let down by the other community services as promised support has not come. Partly due to workers leaving and no continuity being provided. So the meal out we had planned whilst mum and dad were with Harry, got exchanged for fish and chips at home. It was a very somber anniversary. You anticipate parking the thoughts of Harry and having some romance, but that day I could not park the thoughts of Harry! Seeing your son vomit frequently and have diarrhoea, then have mucusitus, which causes a sore thorax and gut is so hard! The week progressed and Harry's temperature was still spiking, so his antibiotics were exchanged for stronger ones. He also had a chest x ray to ensure infection had not spread there. On Friday harry could hardly express his pain. However, we knew he was in a lot as he was complaining of pain and he seems to be such a stoical little fella! I visited LGI on Friday and as I left the nurse said to me that she thought Harry was heading in the direction of morphine to control his pain. As I left Friday I was not sure how long this rock bottom period would go on for.

I picked Callum up from nursery on Friday and he was as happy asLlarry, but after a sleep in the car and home again he was truly devastated that daddy and harry were at the hospital. He was sobbing his little heart out. Due to harry's lack of immunity, Callum cannot see him, for fear he will pass bugs from nursery on, so this does not help. However, daddy rang to see where I'd put something and Callum spoke to him, I could hear harry talking in the background, which was amazing, As he was zonked a couple of hours earlier. The new antibiotics had kicked in and so briefly we were able to skype Daddy and Harry and this brought a smile to Callum's face and dried up his tears. It is so heartwarming to hear the boys tell each other that they love each other!

So Harry has begun to pick up over the weekend and instead of being that zonked out chap, he has had short bursts of energy and interest in the TV. This has been fantastic to see. We were not sure how long he would stay at the zombie stage and nor did the medics, but hopefully that phase has passed. Although we are far from out of the woods. Harry's neutrophils have come up to 0.18 today. He is still neutropenic, which means he has no immunity to fight infection and so isolation continues. He remains at high risk of getting an infection and could dip again, but hopefully not right down to the levels of last week. He has already had 2 transfusions of platelets and 1 of Haemaglobin - red blood cells. He will need lots more transfusions in the cominng weeks, as his bone marrow regrows and learns to support itself at accceptable counts of platelets, white blood cells, neutrophils and haemaglobin! He remains on his intravenous feed and I guess when his dietican comes back after the bank holiday then she will probably restart him very slowly tolerating food down his NG again. That's another area that Harry will need focusing on is his nutrition, as he needs to be built up again and able to tolerate food in his gut. He remains on many medicines and will be costing the NHS a fortune! However, they recuperate some costs through the extortionate parking costs. As mum and dad we have a parking permit, but any visitors, which of cause is all part of any rehabillitation, costs a lot of money. If a patient had no visitors, then they would be more likely to get depression, more institutionalised and cut off from the outside world and probably end up with a longer stay as they would take longer to be fit for discharge. This is definately a topic for Jeremy Vine! Although some months ago I heard on Jeremy Vine some oddball suggesting that patients pay for food in hospital, the big issue with that suggestion is we would be customers and then want a better menu etc etc!

So The Jubilee weekend. I was trying to explain to Harry yesterday who the Queen was. He struggled to get it, so I said you know Ben  and Holly's little Kingdom, well there is King and Queen Thistle and they are very important and wear a crown and make rules that the little kingdom have to do. 'oh' Harry says and continues to play. Later, I say lets turn Cbeebies over (God Forbid!) and see the Queen. We watch the flotilla for 15 mins, Harry can't tolerate it any more so we transfer back to Cbeebies and Harry is distraught that the previous program before the Queen has ended!

Paul and I did manage to meet up Saturday afternoon whilst mum and dad sat with Harry and took Callum to a Jubille fete in Menston. Callum was made up to have mummy and daddy together. He was soooo happy. He enjoyed the punch and judy show and was shouting at the characters! However, to tell you the truth I will beglad when this weekend is over as again it is a stark reminder that Harry is in hospital and our family is split up and so we cannot unite, apart from briefly to join in celebrations. All you see is families having fun together and hearing about people going out as a family, or so it seems.  It is probably amplified really as Harry can't join in.
Although it is nice being at home with Callum, it also feels wrong and that a apart of our family is missing, which is as it is. Seeing Harry's bedroom empty is wrong too. Being a part of the Facebook Community has its drawbacks too, as you see all these happy smiley pictures of people. I would never not want  people  to enjoy themselves, that is not my point. However, being in hospital with Harry, just limits the opportunities for fun. I also know that the pictures and commments people put on Facebook create an image at times and you display to the Facebook community how you want to be percieved. Sometimes you put a bit about the crap that goes on. In my case a bit more than most. Mostly though you want to give off this fun image. Therefore, what I am trying to say is behind some of those pictures is another story, the real one. The argument after the picture was taken, that isn't put on FaceBook! I do know for a fact that pictures tell the happy smiley story that you want the world to know,  but underneath that story can be an undercurrent of unhappiness for many reasons. Some pictures of course do just show pure happiness, such as those of Paul and I on our wedding day. This was 30th May 2003 and it was just like one of the recent scorching days that we have had. It was such fun. Well the event of the year is nearly upon us, The Ball! There will hopefully be lots of happy smiley photos to show from that. I really will have to learn how to upload photos onto this blog!

One date to put in your diaries for June though is the 25th. Why you may ask, well a while ago Harry was filmed opening a present on the ward for this documentary.  As said before, Harrry has kept asking when he'll be on TV and I said you may not be as hours get filmed for short program so you may be edited out! However, we have had to sign consent forms as has my parents who were with Harry that day and I can reveal that the documentary is called 'The Secret Millionaire'. Apparently it's about the Millionaire helping children's charities and apart of this was giving toys to kids, of which Harry was one child who was the recipient. I am sure it'll be a blink and you'll miss it moment, but none the less worth watching!

So we hope Harry continues to improve over the next week. One area we need to focus on when he is discharged is building his stamina up again. School looms on the horizon, which Harry is so excited about attending. However, he needs the stamina when well and not in hospital to be able to be there as much as possible. To make friends and feel apart of the social community is to me the most important factor initially. The work we can build on at home later.