Tuesday, 29 May 2012

May 29th - 2 weeks in!

Well I am doing my stint at LGI again! We are trying to do 3 nights in, 3 nights at home. Then at least you feel you have been home. That's not to say we don't visit Harry when at home, but it's nice if we can have one day at home and not darken the doors of LGI! On Sunday I enjoyed a whole day with Callum. On Saturday he was more contrary than usual. This was because I feel it was his way of saying where have you been mummy, how dare you leave me. On Sunday he had thawed out and we had some fun. I took him swimming in otley, where he again spent most of his time not swimming! Mostly on the side of the pool filling watering cans up and pretending to be fireman Sam, the long snake like floats being his hose of course! However, I did persuade him to venture in the pool a bit and and he actually 'swam' a bit. By this I mean kicked his legs and waved his arms about enough so I did not need to support him, so progress albeit slow. I guess I should have taken him swimming when he was weeks old and he'd be a water baby by now. The truth is the thought back then of taking Harry and Callum swimming was not one that filled me with joy! So after swimming we met friends in menston park for a picnic lunch and then went to see more friends down the road later in the afternoon. James had his paddling pool out. Callum was reticent at first, but eventually joined in, although not for long. He was too busy being the joker and teasing other's but running around the garden when anyone suggested getting him back! Monday was a day of 2 lives! Being mummy to Callum and taking him round Golden acre park with his friend Fin and mummy, Kate. Out in the hot sunshine, enjoying the summer (well technically not summer till June 21st, but this is probably it weather wise!). Then heading towards LGI for the afternoon, whilst Callum happily went to Fin's house till daddy picked him up. Though whilst, grandma visited, paul and I had a cheeky drink sat outside weatherspoons! But then the rest of the day was spent within the enclosures of LGI, ward 32, bed 3! Oh yes we moved beds last Friday, from bed 1 to bed 3 as there was a crack in the ceiling! Felt like moving house, which I said I wouldn't do for a long, long time! Just as you thought you had everything there was another draw full of stuff! Daft thing is the maintenance man came along as vacating the room, smudged some poly filler on the crack and the room had a new resident by lunch time! I guess I didn't have any other plans that morning, so passed the time! So onto Harry! Yep, from having some bursts of energy over the weekend and still being too much for the staff on this ward, he is 'that very poorly patient the staff here are used to dealing with'. His scores on the doors dropped drastically on Monday and he became Neutropenic overnight. His scores have been dropping, but seemed to stay around a respectable 3 for his neutrophils, on Sunday they were just above 1, so not Neutropenic. However, Monday they dropped to 0.11 and today they have bottomed out to 0.03. He has been at this score before. The difference before was that this was just the impact of chemo on him. This time it is the impact of a much higher dose of chemo and his body with his stem cells having been infused, trying to re establish a new bone marrow. Therefore his body is working really hard and the effects of this mean it will take longer for his neutrophils to return to a satisfactory level. On Monday night Harry spiked a temperature. This was to be expected and he is now on intravenous antibiotics. It could be that his own bacteria caused the infection, thus creating a temperature. His immune system is so low now, that it does not take much for this to happen. He is not drinking much so is on intravenous fluid and since he was vomiting a lot and his gut could not tolerate his feed anymore via his NG tube, he is currently being fed intravenously too! So lots of medicines going into him = lots of frequent beeps from machines! He has commenced a different anti sickness drug, which makes him very sleepy. He has been wiped out today and we have not had one smile out of him and hardly a word. Even when his favourite nurse visited, he could not even summon a wave for her. Last week he was as giddy as a kipper when she visited. It just shows how poorly he feels. A very far cry from Harry only a couple of days ago, whom was very noisy and chirpy. It's hard to witness him being so lifeless. We don't know how long he will be like this either. We just have to hope and pray that he does not get a string of infections that keep him at rock bottom. He was starting with a cold tonight and so we don't want this to go to his chest. He is losing weight and can hardly stand up. Hopefully though, the intravenous feed can sustain his weight now. So 'the only way is up', which I think is a song by Yazz! We need everyone's prayers that Harry can bounce back and be that boy again pretending to be an aeroplane, shouting as loud as he can down the corridors of LGI and preferably back in our own home!

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!

Friday, 18 May 2012

Friday 18th may - the big room!

So Harry arrived around 9 am on Wednesday 16th may back at LGI. having received a phone call from the ward on our journey I knew to go straight to ward 32 and that Harry would have THE BIG ROOM! That was a relief! So we were shown to our room where Harry's name had been cut out and laminated and blue tacked to the wall in preparation, plus a sticker chart, which has 3 weeks on it and at the end Harry gets a prize! So we knew that we were in the right room! It was lovely to see that it had been personalised for Harry, but at the same time it made it real that Harry was in for the long haul and not a few days! As Harry has a green snotty nose, then is was apparrent that Harry would immediately be isolated, due to fear for spreading his germs to other immune suppressed kids. That meant the playroom was out of bounds for Harry. This was a real shame as I was hoping that Harry would get a few more days with more freedom, prior to his immune system crashing. A swab of his snot has been taken and it was confirmed that he has rhino virus - common cold to you and me! HOwever it is unlikely that he will come out of being isolated now! Harry has been good about returning to hospital. Admittedly he has had the odd wobble about coming back, but he knows he needs to be here to get better for good. (feel a Take That song coming on entitled - Back for Good!). Harry spent a lot of the first day making Lego models. He is getting addicted to Lego. He puts so much concentration into making it! Then he was playing with the refuse truck, which also breaks easily and I find the putting back together bit is very tedious! However, Harry is entertained. He is hooked up by lunch time on Wednesday to a trolley and drips, which he will remain permanent attached to till next when, when his chemo is finished and his stem cell transplant begins. Harry is having chemotherapy pumped into him every 6 hours and each lot lasts 2 hours. He has 4 courses in 24 hours. He is also on a permanent hydration fluid to protect his kidneys from getting damaged. This comes in 500 ml bags and he has this changed about every 5 hours. In between he has medicines to take, to counteract the side effects of the chemo drugs, then he has regular observations too! Therefore not much time goes by in a 24 hour period, whereby a nurse is not doing something regarding Harry! On the first morning I have a shower in our ensuite wet room, feeling rather pleased with the facilities, only to realise that actually no water was draining away, thus creating a shallow bath and yes water flooded into Harry,s bedroom! The drainage is so poor on these wards and the slope to the drain, practically horizontal. A Very poor design!Since the room is not supposed to be "contaminated" the machine that sucks up water could not be used, so around 20 towels later the floor was dry and useable again! We are still waiting for maintenance to come and take a look, so until then the ensuite shower is out of bounds! Harry had his friend Adam visit yesterday and they played really well for 3 hours with the paymobil and Lego. this was really good for Harry, particularly as he is isolated. He did get tearful at times, as he is hooked up to his trolley of medicines permanently and wanted to be detached from them, so he could play more freely. Really, prisoners have more freedom than children or adults when attached to machines for various medicines and what bad things have they ever done - none! So the boys had a really good afternoon. I would like to thank Kaye for having Sophie on Thurs afternoon, as although Sophie would have been welcomed, it enable the boys to play freely and Adam to stay longer! Harry also had a McDonald 's for lunch and the toy was a cress planter. Having had a McDonald's again today too, he will soon have a cress farm! Harry has taken to talking to his cress and has even played it music and sang it a song! Today, daddy visited with Granny and grandad. Harry was making more Lego with them - a space shuttle! He is into space at the moment and his play worker Janie has introduced him to Q Pootle 5, whom has a moon party! Today his friend James visited. Since Harry can not go onto the ward with the playroom, I asked if we could go for a walk down the corridors. This was granted and so Harry took James on a tour of LGI! Not every kid gets that! such excitement here with the Buckley's. We came back in time for Harry's chemo to commence and isolation began again! Again, Harry really appreciated having visitors and distractions to being " chained" up to a machine. We have also used Skype to talk to daddy and Callum at home, which has been successful. Tomorrow daddy comes to stay with Harry for 3 nights and I get to go home and see my lovely Callum! I hear that he has been really good for daddy, let's hope he stays that way for mummy! He is so funny though at times and adores playing with playmobil figures. He was having a right conversation the other day with the mummy and little girl on her bike. Mummy said to child, "do not swing on your bike", child says, "why", mummy says, "because you will fall and hurt yourself!". He gets the whole cause and effect thing, but chooses to ignore it in every day life, most of the time! Well, the next leg of Harry's journey has begun, which feels good to be a step further on. tuesday was not a good day, anticipating the return to LGI. Now we are here, we just have to keep our heads down and plough through the next few weeks and pray that harry is not too poorly and bounces back quickly. Au Revoir for now!

Monday, 14 May 2012

Monday 13 th May

Well, hello again. Another busy week has passed. Harry has remained on excellant form. I don't know where he gets his energy from! His scar from his op is healing well, his appetite is improving, his hair is even beginning to grow back and he has eyelashes and faint eyebrows! However, these will fall out again with the high dose chemo in the forthcoming week.
On Wednesday Paul was working, but my mum and dad and myself, took Harry out for a day to the sealife centre in Scarborough. We decided to just take Harry and put Callum in nursery. Callum would have enjoyed it I know, but living with Callum is like living on a knife edge at his present age of 2 and you never know when the next tantrum is coming and for what reason! So we decided to have a Harry day. Callum will have plenty of outings and individual time over the next few weeks with Harry in hospital.
So, we had our Harry day and he really enjoyed himself. There was even time and the weather held long enough for him to do some rock pooling with Grandad. He was so excited about the day that he did not even fall asleep on the way home as expected! I feel like challenge Anneka at the mo as the clock is ticking till Harry has to go back into hospital for a few weeks and so time is so valuable that we want to use it as wisely as possible and give Harry some good times, before his toxic drugs are pumped into him again and made to feel poorly to heights apparently we haven't yet witnessed!
So we have met up with local friends and Harry has enjoyed playing with them and at home with his bother and of course fighting with Callum, that would not be natural not to do so!
At the weekend Paul managed to book Sat and Sun off work, so we could enjoy the time as a family. We went to Paul's parents and stayed the night. The boys saw their little friend Olivia, enjoyed seeing the chickens, playing on the outdoor cars that Grandad cannot resist buying, including a go cart. So both boys loved it! On Sunday we went to Kirklees Light Railway. The boys enjoyed the playgrounds, bouncy castle and the train ride, so a successful trip.
Today we have been to visit Harry and Callum's friend Isabella, whom both declare their love for, I can see the love rivalry thing already. We baked chocolate buns this morning and both were deciding which one they would give her!!!! Oh and Cara, Callum baked one for Isabella's sister too. When Sofia is a ittle older, I am sure she will capture their hearts too, as she has the hereditary melting chocolate brown eyes too!
Then we went to the park this afternoon, so Harry and Callum could see some other friends and the mummies could natter!
Harry even went to nursery for a few hours last Friday, maybe he will go tomorrow too. I have so much to do around the house, I need some catch up time.
So, we approach Wednesday with some trepidation and I have to say, I get quite emotional at times thinking about this admission to hospital. For one, Harry has bounced back again from very invasive treatment. An 8 hour operation is not to be sniffed at. To see him lively again is pure joy to watch, however, yet again we have to subject him to the ongoing treatment plan. As said, he knows he needs more treatment and although he does not know what 6 weeks is really like timewise, he said in the bath tonight that 6 weeks is quite a long time.
Somehow, Harry has latched onto his impending birthday - September, not sure why, probably from some conversation recently with friends about who was the oldest and whose birthday is next. Anyway Callum was singing Happy birthday at bedtime to Harry and so I said it's daddy's bithday next, his 40th. Harry said he wanted to be 40, at which I quickly said that you don't, as he had too many adventures to be had between now and being 40. Harry wants to go to North and South America as well as Spain, so I said he needs all the years to be able to go to all these places. Then we talked about little adventures being fun too, such as going to Scarborough last week. I also said that this stay in hospital would be an adventure too. For one, my plan is to get Dave the animation chap, paid for by Candlelighters to do a short clip of Harry to be shown at the ball. This needs to be done before next week if possible, to get Harry on camera being well. He is keen to be on TV since he was apparently filmed for a documentary to be shown on channel 4. My parents were with him  at the time, however I have no idea what the programme is and I keep telling Harry that hours of film is shot for a short program and much never reaches TV for the final program. Therefore if we can shoot a short film of Harry, then he will definately appear on a big screen!
So Harry has to commence some drugs at home tomorrow to counteract the impending toxic chemo drugs. One is to prevent him from having seizures that the chemo drugs can cause. The chemotherapy drugs to be pumped into Harry are as dangerous as the recent operation he has had. There are risks  that permanent damage to Harry's body can be caused and even the possibility that they can kill him. However, just like the operation, we have no choice and even though Harry is on top form for now, this would not last and only by having furher treatment do we get the possibility that the good times can last for years to come.

Tuesday, 8 May 2012

Tuesday 8th may

Harry vomited green bile again last Wednesday, so I rand the ward to get their advice. They told me to bring him in through A and E and once their if they bleeped ward 41 they would come down and assess him. They wanted Harry to have an x ray to see if his bowel was blocked. So down to LGI again. I must admit I was in a foul mood on arrival as the nearest car park machine would not accept cards to pay and I only had change for 2 hours of parking! I had a bee in my bonnet with regards the morality of charging people for unplanned visits and in situations whereby A and E was to be the destination, as actually you have no idea how long your stay will be! On the whole most people access A and E through their own methods of transport, but if more people relied on ambulances then the cost would far exceed the gain in car parking charges! I am ranting I know, but it is things like trying to find change and deal with car parking charges when you are in a stressful situation that quite frankly can be the ones that push you over the edge. I know I am not alone as their was another very stressed out lady in A and E whom was also ranting about exactly the same thing! I remembered taking Harry to A and E in November, when he was in such a bad way and Paul came with me to assist me. We parked in an emergency bay! I think we left it their for some time, before Paul drove it home later that night when we knew we would be transferred to a ward. I have to say the visit to A and E last wednesday brought back a lot of memories and feelings of our initial visit to LGI A and E in November 2011. It seems a lifetime ago as our journey has taken such a different course since then. So on arrival at A and E we booked Harry in and went to the assessment clinic. I explained on arrival about how I'd been in touch with ward 41 and they should bleep them on arrival, but I was ignored. At least we diDn't wait long to see a triage nurse. Again, I explained that we had come following a telephone conversation with ward 41 and they should bleep them. However, again I was dismissed and told inititial assessments had to be completed first. Thinking of my car parking situation and also not wanting to be there longer than necessary I got angry and told the nurse I did not want to spend all day there, for which she replied I wouldn't and I replied of course it would be a maximum of 4 hours! So not the best of starts. I wasn't trying to take over her job and tell her what to do, but since we have been in and out of hospital for months and are well known to oncology and also known to the surgical team I was the expert with my son's situation I have to say and what was the point in wasting A and E's staff on assessments! It did astound me that despite the money put into IT systems that nobody could go on the computer and get a summary of Harry's situation. Everyone we spoke to was 'blind' to our previous history! This is so unnecessary in this day and age of technology. I know the oncology unit is building up a hefty file that will soon need it's own health and safety warning on it, for a minimum of 2 to carry it safely! However, it seems none of these notes are scanned into a computer for other professionals to see. Thus creating time delays and loss of staff time whilst inappropriate questions are asked in A and E, such as was Harry a term baby? I mean what has that got to do with him vomiting green bile following a major operation? Ranting again, but I point this situation out as I know so many people will be in the same situation, thick or multiple files in some darkened room in the hospital and in the unfortunate event that a visit to A and E is required, well those notes are in that darkened room, not where they are needed and so stupid repetitive questions are asked. I so feel for the vulnable, frail and those who have no advocate to support them. The system is like the thickest, squidgiest, sticky mud at times, that takes a lot of energy to pass through! Anyway, the long and short of it all is that Harry had an x ray and no blockage was identified, the vomiting was probably associated with his insides still settling down. Oh and we got back to the car with about 30 seconds to spare on the car parking! So enough, I hear you say, that is if you are still reading as you may have switched off literally! At least you can do that politely to a blog and not so politely when in person! The joys of technology! So that was the last time Harry vomited green bile. I think he told his insides to behave as he knew his mother would blow a gasket if another trip to A and E preempted further stupid question! Enough, i did say! So Harry has recovered well and is on amazing form to say that he is only 2 weeks post op! We had a clinic appointment last Friday with Sue Picton the oncology consultant and Mr Squires the surgical consultant also checked Harry out. He was impressed with Harry's progress and felt he was well enough to move on with the next stage. So - the Next Stage. We agreed with Sue, and yes Sue wanted to make the decision on the date of the next stage with us, which felt good! We could have promptly moved onto the next stage this week, but agreed together that next week would give Harry more time to recover, physically improve, become stronger and for his appetite to improve. So we agreed on May 16 th to be the date Harry goes back into hospital for his week of high dose chemo therapy, which targets any remaining cancerous cells in his bones and bone marrow, but in doing this it wipes his bone marrow out. So then his stem cells are put back in to enable his bone marrow to regrow. The time Harry will be in hospital is an unknown quantity, it could be as short as 3 weeks and as long as months, but the majority of people are out in about 6 weeks. Basically, Harry's immune system will be stripped to dangerous levels and only once these come up to acceptable levels can he come home. He is strong and a fighter, so fingers cross he manages well and the time is as short as possible. Harry will have be very careful for the 3 months after the stem cell transplant, as his immune system will take a while to build up and he is to avoid crowded areas. So nursery will be out! Whether he starts school when planned is up in the air too, it all depends on his immunity, his treatment etc. I think we felt somewhat relieved and elated that the tumour had been removed. As said another hurdle over. However, we were brought back down to earth with the extent of treatment left for Harry to endure over the coming months, till march 2013 at the earliest. Also, being brought back down to earth on the impact this treatment may have on Harry. Man children are hospitalised for periods in the latter phase of treatment. Basically, not to get complacent that Harry will be able to attend school regularly. however, this next few weeks is what we need to focus on. Small steps at a time! taking it all in, in one chunk is too much and makes the mind explode! So we have been busy doing things locally and seeing some of Harry's friends. Harry has Been out on his bike twice, which is fantastic! We are so keen to enable Harry to socialise with his friends and keep relationships going and also for his friends to see him. I know many of them ask questions about Harry and so it is good that they see for themselves that Harry is doing ok. So a long, long journey still ahead and if we stopped Harry's treatment here, then the cancer would just come back. He still has microscopic cells in him, which would multiply at a frightening rate if we don't press on with treatment. Harry himself understands that there is a long way to go and has said that he doesn't want his lump to return. he knows he is not better yet. We have a plan though, which I so dearly love, so onwards and upwards!

Tuesday, 1 May 2012

Tuesday 1.5.2012

Well the months are rolling by. Can't quite believe it is May. In some ways I hate time passing by so quickly, but in out situation I can't wait to progress past Harry's stem cell transplant stage and then hopefully have some time at home again and even a little holiday before the commencement of school.
Harry was discharged home monday afternoon. The surgeon is really pleased with his progress and it is good to be home. Harry has had a really big operation and home is a better environment for him to recover in. The ward was so noisy with cyring babies, children and beeping machines that it was like spending all day and night next to the checkout of Sainsbury's!!!!! Harry did not sleep well and so being at home and getting some peace and quiet can only be good. Plus we are at home and reunited again!
The ward was an experience in itself though and it was acutely obvious that many people face situations that they don't expect to arise and cope as best that they can. There were a few dads staying over with their children and in one instance this was because the mother had abandoned her son at only a few months of age. So it can be seen that we live in a modern era, whereby dads take their roles very seriously!!! Usually trying to hold down jobs too, to keep the family income ticking over.
So here we are, as said another hurdle is over. The past week has not been as bad as I had anticipated. Harry's operation went as well as it possible could have done. His recovery has been remarkable and he seems to have exceeded the medics expectations for getting back on his feet!
Harry needs further recuperation,  but it is hard to get Harry to rest and keep  still. He had a couple of his friends to play this afternoon, as he was desparate to have someone over to play.
However, I think the fact that Harry won't rest easily has led him to be sick twice today. He was fine after each episode. I think it is his bowels and intestine still recovering from being moved around. His appetite is very poor, but hopefully time will improve that. He woke a few times last night, but I think it was because he has been used to sleeping next to me or his dad the past few days. At 5.20am he did eventually come into our bed!!!
We go to clinic again on Friday so Harry's progress can be reviewed and hopefully we will have a date for the next stage of treatment.

I am going to put a link here to a site my friend Kate Barraclough has set up. She is doing a sponsored swim and the charities she has chosen to support are Candlelighters and CLIC Sargent. It is a Virgin money giving site and so any donations made can be gift aided if you pay tax, increasing each donation by 25%. It is also not for profit too, so all of the donation will be split 50/50 between the above children's cancer charities. Some people have asked about how to make donations, if perhaps they cannot make the ball and so it seems apt to put this link on and silly to make another page as all the money goes to the same charities.