Monday 24 th sept! A little normality!

Well no blog writing means that we are all good and trying to adapt to normality away from hospital! Harry came home Sat 15 th Sept. I can't believe 2 weeks ago we were awaiting the outcome of the ward meeting as to how to move forward with Harry and get him home! The speed at which life moves is phenomenal at times. The decline of Harry and the state he was in at the beginning of September was hard to witness and get our heads around. 2 1/2 weeks in hospital and Harry seems better than he has been in months! Well since before his operation in April! Harry's dramatic changes in well being can be hard for mum and dad to get their heads around at times! We felt despair very much at times when Harry was really poorly and it seemed the light was no where to be seen at the end if the tunnel, like a bad dream where you are walking through a tunnel abd someone keeps making the tunnel longer and the opening further away and unacheivable. It is scary and you want to scream make it ok, but no one is listening, however you eventually wake up and life
moves on and the tunnel length is as it should be and thd light is in sight and attainable again! 
So we reached the light and upon finding it and having Harry home we breath a sigh of relief! With being at home and reunited after 2 1/2 weeks of being apart, plus the 3 weeks prior to hospital being a chaotic nightmare, well we try and regain some normality to our lives. However, it is not easy for us all to just switch from the mentality of trying to support a poorly Harry at home and then in hospital to being back at home and well, being a family again. Harry has undivided attention from one of us in hospital and Callum has a lot of attention when home too, but is looked after by a handful of people including nursery staff as well. He just constantly asks where he is going and who is picking him up. So to be home as a family is fantastic, but we have to take a few days to adjust again! At first I was on a high that Harry was home, but after a few days I started to reflect on the enormity of the last few weeks and I have to come to terms in my head with the turn around in Harry. A few weeks ago we thought he was slipping through our fingers and this is not the first time we have thought that in the last year, but to go from dealing with the emotions that come with those thoughts to having gregarious, inquisitive Harry back, just takes us time to adjust to. I think it takes longer to recover from each knock you have and currently neither Paul or I feel that sociable. However, if we can keep Harry on an even keel for a bit, then we will be up for going out again and socialising, so folk out there don't take offence if we don't want to go out, we are just adjusting to being at home and enjoying being at home! We are enjoying the mundane activities such as bathing the boys together at bedtime, hearing either the fits of giggles that comes with splashing each other or the cries, because the water has gone in their eyes, but both sounds mean I have my boys under one roof and the boys are back in town! 
So Harry's first full day back at home was spent on a baking mission! Harry got lots of new cooking equipment from Janey, which he was keen to use, Callum was Harry's assistant! Then Monday we had a family day out. We had won a chair on eBay, which was to collect from Gateshead, so we went up there first, then to Saltburn, where we had a pub lunch and then went on the beach to get some fresh air. Running on the beach with my boys felt like landing on the moon! A far cry from the stuffy hospital room! We then went and met Jenny and Baby Torin aged 1 month, on the way home. So a funpacked, fun filled day, making the most of a day as a family, because we never know when hospital looms for Harry! 
The huge Milestone this week has been Harry starting school! Tuesday I wasn't sure whether to send him because he was still neutropenic, which means his immunity levels are low, but after a discussion with our McMillan nurse when Harry was in clinic, it seemed the best idea to grasp the moment whilst Harry is well and send him! So I spoke to school about sending Harry on the Wednesday and we agreed that I would go with him and he would just stay an hour. He loved it! On the Thursday he stayed 2.5 hours with me, though I spent muchof the time in discussion with Michelle from the homeschooling team and talking to the head. Harry didn't seem to mind that I wasn't really with him, so on Friday I left him for an hour on his own! Harry loves getting dressed in his uniform and Friday afternoon when at clinic at LGI Harry was keen to show everyone on ward 31 his uniform whilst awaiting his blood results. He raced downstairs as soon as he could and darted onto the ward saying 
'Ta Da', he was a different child to only 2 weeks earlier! Everyone was suitable impressed to see him! 
I never really appreciated the significance of Harry wearing a school uniform, but it has given Harry a new status. He's been yearning to start school since last September when some of his friends who are July/August babies started. Now he goes to school he feels he has the same grown up status! He is so proud! When it came to the weekend he was like, I get 2 days off from school! Hope the novelty lasts forever! He had a good weekend, though some of the side effects of his new drugs are starting to kick in, such as cramps in his legs when he's been sat a while and dry skin, which has occurred on his face. His Haemoglobin was borderline anaemic levels Friday and this was apparent at times, particularly as it seems to make Harry more restless on a night. However, he went to school Monday and I left him for 2 hours. When I went to collect him, the children were having playtime inside after lunch. I couldn't spot Harry at first, but when I did I wish I could bottle that moment, as it was lovely 
to see a happy , Harry playing with the other children, making a puzzle! Callum saw Harry's classroom too and Harry relished in showing his little brother around. Callum now wants to go to school too! 
Harry going to school does mean I have a whole new system to deal with though, trying to explain Harry's situation to new people and  getting them on board with Harry's treatment plan. The Mcmillan nurse has been fab in liaising with the school as has the home schooling team, though time will give the school confidence in managing Harry. I do feel like an administrator for Harry's services at present and spent a chunk of last week speaking to various services to get more support. This is great, but I'm not sure if the services are really what we want, but we have to try them first. So Harry is entitled to about 4 hours in put from a registered nurse each week, this is care in our home and someone I can actually leave Harry with, we are meeting a new volunteer next week from the sitting service, who can provide 3 hours a week in the home and again someone I can leave Harry with. We have also been linked to a CLIC Sargent volunteer who can play with Harry again at home, but I have to be there. These services may be useful, but most of all I want extra support to enable Harry to attend school for longer, not more services within our home whereby Harry spends so much time when poorly. However, if Harry is poorly, the nursing team will be appreciated. I also have to co ordinate with the home schooling team, so they can work with Harry when he is not well enough to attend school much. I am grateful after all these months to be getting some input, but at present, I just seem to be chief co ordinator. Once we have tried the services, only then can I assess their usefulness!
So having had a great room in the teenage ward last night, per Harry's operation, but rubbish Internet access, I didn't finish this blog, so can update you that Harry successfully had his port put back in today! We went up to theatre for about 9.50, but as some notes were missing, we waited there for 20 mins before they arrives. My inquisitive Harry though, took the opportunity to learn what all the machines and wires do, well why waste an opportunity! 
He was in theatre for 2 hours. He came round, sore and was puffy faced, how he looked after his operation in April! He soon recovered and was joking with mummy and daddy in his room, in fact he 
even had the energy to have a lesson with Michelle from the home schooling service! So topped up with platelets and red blood we got him home for 8pm! Go Harry! We all love you! 

12.9.12 hip hip hooray Harry is 5!

It's Harry's birthday! He's had a top day. The new antibiotic finally kicked in Sunday night exactly 48 hours after it commenced! Harry in the meantime had a weekend plagued by High temperatures. On Sunday he was on good form in between the temperatures, so was able to have some fun. Though the signal that his temperature had spiked was Harry saying I'm cold. Well in a room that has felt more like a greenhouse, with the sun blazing through the windows that don't open, cold it is not! Therefore each time he said he was cold we called the nurses and his temperature would go straight up to 40 degrees C!
My mum and dad sat with Harry whilst Paul and I took Callum on the Superhero walk. The sun was out and do the stroll around Leeds centre enabled the colourful crew to be noticed and with people sitting outside, collection boxes got some pennies! After the walk there was face painting and a ballon lady made animals and superhero weapons of mass destruction, which the boys loved and found dive bombing onto the floor incredible funny! This was Fin, James and Callum of course! James won a prize for fancy dress! As dad had dressed Callum I was just pleased he was, well erm... dressed Ha Ha! Callum has got a Superman T shirt, but he insisted on wearing this on Thursday, was then bathed by Granny, so I could have tea with Paul who was staying with Harry, then shoot off to a Candlelighters focus group on holidays!  So the T - shirt is still at Granny's! The focus group was really good to be a part of as I got to have a say in how money raised by us and other's is spent! It is hoped that a centre parcs holiday destination can be negotiated at a reasonable rate to give families  the possibility of a short break all year round and not just seasonal. I recently negotiated to have the option of changing our centre parcs break for a second time, which I think I am going to have to activate, as if Harry commences his new treatment next Monday, he'll be in hospital the week of 5 th November! Then it's when to book it to, probably well clear if the end of Harry's treatment. Having holidays arranged by Candlelighters takes the stress out if negotiating changed dates and worrying about losing money, at a time when money is precioud due to reduced incomes! The focus group also came up with some great ideas for other possibilities! It's always good to know where money is spent when you ask people to dig deep and support charities!

So Harry had his last temperature on Sunday evening and has really turned a corner thankfully. Discharge is in sight! We can smell it! Harry can see the outside world again, particularly as very rudely we have 3 big porta cabins right outside our window, obscuring the view all in aid of providing supportive technical equipment for 'one born every minute!' And who the hell watches that! Ha Ha! Though how they ever get people to agree to bare all at their most vulnerable I have no idea!

Back to Harry though! We held our breath and awaited the outcome of the big ward meeting that takes place every Monday afternoon. Harry was discussed in much detail we are told, as he has been quite complex! It has been complicated as Harry has had an infection in his line on top of the radiotherapy side effects, this can be problematic to solve long term and will require Harry having his line removed and replaced a few days later. However, the line cannot be removed whilst he is on intravenous feeds (TPN) as this cannot go straight into his vein via a cannula as it will cause too much irritation to him. Therefore to remove the line, the TPN needs to have stopped!
Therefore as said we have held our breath that Harry has remained temperature free for 3 days, has had virtually no tummy aches and so he can tolerate his NG feed being increased and the TPN being decreased! This has been managed successfully, phew, so far! He will come off his TPN thurs night and his NG feed will be up to a satisfactory level to be able to sustain Harry's nutrition. The plan is that he has his line out on Friday under an anaesthetic. If they don't take it out, experience shows that
children more often than not get more line infections and since this infection has taken 7 days to respond, that's vital time that may disrupt Harry's next 6 months of treatment! He will then be able to go home at the weekend, but will have to come back to have the line put back in again under anaesthetic! If I've lost you with the technicality then sorry, but you see what we have to get our heads around! It's complex to balance the infection problem against ensuring Harry has adequate nutrition! He has gained 2 kilos, so that's fantastic. Some will be just fluid, but the dietician confirmed that some of that is nutritional fat or muscle too, whatever, he's put on weight!

So Harry turns 5! What a fabulous birthday he has had too! He had a remote controlled landrover from the ward, a large one that looks like it'll do some good stunts! Callum was competing to get his hands on the controls too! He's had Lego and playmobil and books and he still
hasn't opened all of his presents! By being in hospital and having few distractions this morning he loved playing with his playmobil! He opened his presents gradually through out the day, which was lovely, as he took in what he got, well almost, it got full on in the afternoon when everybody else arrived - daddy, Callum, granny, grandad and Janey! Grandma and Grandad came late morning and stayed for cake, before heading off. It was too small a room for everyone to be there all day and too much for Harry. My mum had baked a dairy free cake and I decorated it with pirate Lego and pirate bits from the cake shop in Otley! Even Harry had some cake! There was about half the cake left after everyone had, had a piece and Callum asked whose piece the remaining half was. Someone joked that it was Callum's, but he wisely said that if he ate that much his tummy would be sick! Even Callum knows his limitations!
So we had pass the parcel (kindly made up by Jenny Winder!) to One Direction and Helen the
Playworker stopped and started the music, so it was all fare! The boys played happily together and got giddy, dancing and singing until Harry was worn out and needed a kip!
Harry has been in great spirits today. Long may it continue and hopefully he can pop into school next week to meet his new class mates ! He too can then get a picture on FB of him in his new uniform to join the set of babies from baby group that have just started school too! Harry is just realising that his friends have started school and he hasn't, so more importantly than photos is enabling Harry to feel apart of school, that he belongs and usn't being left behind his peers cos of cancer!

Friday 7 th sept.

Harry still has a high temperature. 40.3 degrees C to be precise. He still has an infection in his line according to recent blood cultures, therefore he will commence tonight on a new antibiotic to help combat this.
He has also started on a lactulose free diet to try and enable his gut to repair itself, as dairy products can irritate it. Hopefully this will only be for a few weeks. I am officially that mum with the kid that can't eat this that and the other!

Harry had very much hoped to complete a 3 km superhero walk in Leeds in aid of Candlelighters and CCLG (cancer care and leukaemia group). He's seen the posters in clinic for the past few weeks and asked to do it. Alas though, he can't leave his room let alone go out  into Leeds!

However, Callum and friends James, Finlay and Rosie will be completing the walk this Sunday, with parents in tow!

We have a virginmoney giving page set up for all of them. Many people gave generously to Kate for her swim and the ball, so don't expect people to give again, but if anybody wanted to give a couple of pounds so the kids feel they have raised something, then great!

Below is a link!

Thank you!

.com/HarryBuckleyandfriends

Thurs 6 th sept: there is no end in sight!

Well to keep things brief, Harry continues to be very poorly. We learnt on Tuesday that The x- ray taken on Sunday has highlighted that Harry has an air lock in the lining of his bowel which is a side effect of radiotherapy. This can cause stomach pain and diarrhoea, on Monday night Harry was up every couple of hours complaining of severe cramps and this we think has been the cause. Therefore on Tuesday it was immediately nil by mouth, on advice from surgeons, this is to give the bowel a rest and heal,  apparently this can take 1-2 weeks to heal. We thought that this was the end of complications, what with Harry's line infection too, but as our story goes No! Harry's stool sample results finally came back on Wednesday and with this information we learn that Harry has a virus, which is another cause for his recent diahrrea and weight loss! In a immune suppressed kid like Harry, this could take weeks to get rid of! Untill 48 hours clear Harry will remain isolated! Its not airbourne and can inly be passed on if you have contact with his poo and don't wash your handds! This we vigilantly do, so can't really see it being contagious if vigilance is adhered to! Wednesday also brought mixed information, one doctor said that Harry could eat small mouth falls, so he had some cereal, then an hour later, this had changed to small sips if water only, leaving a vey upset Harry, whom had made a pizza with the Candlelighters play work and was then unable t have any! DOctors should be very sure of facts, before telling children such things! Harry has minimal control over anything at the moment, so not even beng able to choose what he eats is not good! It is Thursday today and Harry has nw been allowed to eat very small portions of plain food! This may all change tomorrow though, who knows. Harry spiked a temperature again today. he remains on antibiotics, the cause is unknown and could be the continued line infection or a side effect of the diahrrhea?
Paul has been staying with Harry the last couple if days, giving me a break. Though yesterday I felt more wound up by not being in control of hearing all the info first hand and not being there to question the virus and then the misinformation with regards the eating/not eating! However, I have managed to relax and today was sunny! Yey! Callum had 2 little friends to play at our house and inparticular Michael and Callum had a great time playing  in the sand pit outside! I have really enjoyed being with Callum today. he's done 2 poos on the toilet today, so good going! 
I go back to stay with Harry tomorrow and I am really unsure when this phase will end. I visited Harry this afternoon and it was very evident that he still has diahrrhea. He remains on an intravenous feed. we can 't see an end in sight as I would think that whilst he has the diahrrhea he will benefit to continue with the the intravenous feed so that nutrition is taken into his system and this will help boost his immune system. If he comes off the intravenous feed (TPN) then all his nutrition will come straight out with the diahrrhea? One to discuss with his consultant I think as the nurse in charge of the ward today was very vague, when questioned by us!
To be continued, but it looks like Harry will spend his 5 th birthday in hospital and in isolation! Just yet another date for us to attempt to celebrate as best we can! As for school, well who knows! I am disgusted to learn that the max home schooling the government provide is just 5 hours a week! I know reception is a lot about play, but this is hardly any interaction from a professional! 
I do have some appointments lined up over the next week to see a couple of agencies to see what more can be provided to support Harry at home, so fingers crossed!
Harry in himself, is not actually too bad all things considering and has baked 2 batches of buns this week! One lot with myself and another with Janey, our volunteer play worker and now friend, oh and as said above made pizza with the Candlelighters play worker, as well as had 30 min daily input from a teacher from hospital school, in addition to doing painting, so quite the busy bee. It's everyone around him, his parents and wider family that are trying to cope with recent events as we have the awareness of the wider issues, complications and these problems create greater complexities and an ever more unpredictable playing field! 

2.9.12 the light of hope has faded again!

Harry was so much brighter and engaging and fun the last 2 days! He had a visit from his friend James yesterday and his mummy Jenny and we showed them the roof top garden. However, as our lives seem to be these days, Harry spiked a temperature at tea time. He had his bloods taken from his line to test if an infection was present.
Overnight things have not been good. Harry had diahrroea with blood in twice. He had a continued temperature too. His bloods were taken again and a full blood count taken. Whilst waiting for the results he was seen by 2 doctors. It is found that his platelet level was low and since these cause clotting they are very much needed if blood is coming out of his bowel. Therefore, Harry receives a platelet transfusion at 4 am. Having just drifted back to sleep and those wandering thoughts that something sinister was going on had been finally pushed to the back of my mind, well the nurse woke me at 4 to get me to clarify Harry's date of birtWh, which I have to do before any transRfusion. Don't know what they do if a parent happens not to be staying! Not impressed by the disturbance, I manage to fall back to sleep, but again was rudely awoken at 7.30 am with the information that Harry had to have an x ray in A and E at the far end of the hospital! I quickly dress abd accompany him!
Harry was really co operative and it all went smoothly and by 8.15 we were back in his room.

Well it took ages to get the x ray results analysed and I went home to have lunch and put some washing on to be able to take some clothes back again, then I picked Callum up from Kate's where he was having great fun, with a hose and a paddling pool. His favourite past time! He quickly became soaked and was promptly stripped to his underpants! These soon got removed too, as did his little friend Finley's! Two naked little boys having lots of fun!
I take Callum down to see Harry in hospital, where his dad has been keeping him company abd Janey was visiting too.
Thankfully nothing was apparent from the x ray and the bleeding had been concluded as being down to having low platelets. Harry has also had a red blood trabsfusion too today. His temperature has remained 39.something degrees C and topped 40.2 at bedtime. The calpol isn't touching it, do they may try giving this intravenously on his next dose.
Harry has been able to engage today and smile! But this is all another set back!
I had said to Harry yesterday that he could attend hospital school next week, but this is not possible either, as he is now isolated in his own room. I think we may be able to get a teacher to come and see him in his room for a handful of hours fingers crossed!
He was looking forward to going up to the school room, so another thing postponed!
It's also looking like there's not much chance if him going to the circus on Friday either.
The light there yesterday and the hope if some fun and normality has been delayed further!
We knew Harry had to stay in a few days for the intravenous feed to take effect, but at least we had hoped he would have been brighter and as said interact with others in the school room! Patience I know is a virtue and one we have to keep hold of, but it is being tested to the Nth degree!
Good job I emailed centre parcs before paying the extra £80 onto our existing payment that we had made for our January holiday, to ensure that we could have the possibility of changing the dates for our rescheduled November break. I had thought I was just emailing and haggling in the unlikely case we couldn't go and haggling it was! We can now change the dates up to 4 weeks before our break starts. As Harry's next stage of treatment has been delayed we don't know if his week in hospital for immunotherapy will clash with centre parcs. Another possible blow.
I can't tell you how having nothing to look forward to is. I know many people in the world don't go on outings or have holidays, but my peers do and I guess I just want something else other than cancer to talk about. We are not able to do anything nice at the moment and I know all I do us talk about
Harry, slag off the system and the unhelpful workers I come across. I want to be fun me again. Those people who I rant to, thanks for listening! The days are long in hospital abd there us much time to dwell in things. Ultimately I am trying to get the best for Harry, with his schooling and medical treatment. Unfortunately in this day of underfunding of adequate services in both health and education and from dealing with people who are in the wrong profession, this sometimes means I am constantly battling against a severely under resourced system. My community nurse whom I spoke of the other day had no hesitation in telling me there are no funds to assess outside the decision support tool criteria for continuing care. I have since challenged this a second time having re read the national 
framework again. Arguments outside of the intitial criteria can be made if well argued. Harry does have unstable, unpredictable and complex health needs. Having had another discussion with my community nurse to ensure she knew that Harry had been readmitted to hospital and was on 
intravenous food and fluid and also having suggested I speak to her manager, she asked a continuing care colleague to speak to me. Having spoken to this colleague I now feel that Harry will have a fair assessment regards applying for continuing care. He will be assessed and all being well make funding panel at the end of September for a decision. This colleague happened to have a much better approach than the community nurse, so I felt listened to and that the framework was going to be followed. It may be that Harry doesn't get funding, but through going through the  official process we will get a thorough assessment and feedback after the final decision has been made! So I fair crack at the whip so to speak! I also tackled the community nurse with regards the impromptu reassessment of Harry's nursing needs. That notice would have been good. The nurse failed to see my point and suggested we end the conversation when she could hear Harry calling for me in the background! This of course I had no intention if doing until I had said what I needed. From her tone she still didn't get it and had no no intention of apologising. Sorry  can go a very long way!

Thurs 30.8.12 finally Harry is on intravenous fluids and food!

Well as you could tell rock bottom was the state of play yesterday evening!
Harry was very lethargic and tearful this morning. We all went to Jimmy's for his radiotherapy review. It wasn't really a review though, as they immediately were concerned how poorly he was. I got him weighed there and he weighed 16.3 kilos! He's lost 3.3 kilos in 3 weeks. He was 17 kilos last week. My fear was he would lose more weight. We have tried so hard to get his feed down his NG tube, but the frequent tummy aches, nausea and actual vomiting prevented this much of the time! This morning the radiotherapy consultant spoke to clinic at LGI where we were heading for Harry's platelet transfusion, it was arranged that Harry would be reviewed by a doctor once he was there! On arrival at clinic it was heaving. So busy. It was lunch time. Callum wanted a buscuit and a drink. Daddy got these for Callum, whilst I had a groaning Harry on my lap. I'd forgotten thurs was the day many children fast for bone marrow aspirates and so you are not supposed to eat in the waiting area, but go to the canteen, until this women very curtly told us of this fact! Having been to Jimmy's already, not had a drink, stressed up to the eyeballs, not wanting to take Callum to the canteen as both parents wanted to speak to the pending visit from the doctor, I replied it was hard for everybody! Then Harry wanted some milk. I certainly couldn't take him off the ward, the kitchen is tiny and for pardnts only, if I took him in there then I would contravene another rule! Harry had, had a temperature that morning of 35.5, the radiotherapy consultant said this could still mean that he was brewing something and he was a bit snotty! I cart Harry down the ward at clinic to the nurses station and declared that I thought Harry had an infection and needed isolating. The support worker said they wouldn't necessarily isolate him and asked what type of infection. I said I didn't know and upon further interrogation I burst into tears with the stess if it all! However, we got a single room and all 4 of us could have drinks and food without offending anyone else! (even harry had a snippet of sandwich) Relief!

So I asked for the dietician to review Harry too, knowing she was away tomorrow and in fact a doctor and a dietician reviewed Harry together! Having discussed Harry, waited a few hours for them to discuss their findings with Sue our consultant, finally he's been admitted, put on intravenous fluid and he will move onto intravenous food tomorrow!
To top it all, (in a good way!) ward 31 had been reopened and has a mish mash of 3 wards on it, there are still beds on 41, but thankfully we have one in 31! A bay, not a side room, but 31. Yey! God is looking down on Harry and I now feel it will all be alright!
Harry was actually engaging in making a Lego fire engine with grandad this eve! Not felt like doing that in ages! His feed down his NG tube has been stopped for now to give his gut a rest. He has not committed today!
Harry has tickets to see a circus next Fri, maybe he'll make it. It's just round the corner from LGI, We can make this a goal! We have had to cancel
His birthday party, planned for Sunday is cancelled! We have not discussed his party this week and being so poorly lost concept of time scales, so it's not a big issue, but just another nice thing to be crossed out of the diary lately.
However, the aim is to get our vivacious Harry back! Hopefully we can reschedule his party for a couple of weeks time. If anyone deserves a great birthday and party Harry does! His next treatment scheduled for Monday has been delayed. It will likely start in a couple of weeks, we will see. Let's get Harry built back up again!
Thanks to everyone who has sent us such kind words and offers of help! We appreciate it!

29.8.12 more vomiting, diahrroea and tube repasses

So Harry's sickness returned and with it several visits to LGI. Harry had completed his radiotherapy and so I said to Harry, well this week we have a hospital free week, apart from maybe a platelet transfusion. How wrong I was and famous last words! Monday brought a trip to LGI as Harry vomited his NG tube out in the night. Whilst there Harry had his bloods tested as thought, might as well and so cancelled the community nursing team's visit on the Tuesday. Yep Harry did need a platelet transfusion, but we only knew this late Monday, so yep, back to LGI Tuesday am for more platelets. Well I kept telling Harry he had a nice afternoon ahead of him and we had arranged to see some friends. However, when we got to the park, not only did Harry have a tummy ache, but the heavens opened! We went to a friends house, but upon not being there long, Harry vomited and brought up his NG tube again! I have to say I felt v.v.v.v.v.v. fed up.com! It was bad enough visiting LGI 2 days in a row, but to have to visit there 2 times in a day was quite frankly deeply depressing. But it had to be done. PAul picked Callum up from nursery and I took Harry to LGI. I felt utter despair that Harry was vomiting so frequently followed by frequent episodes of diahrroea, which actually meant Harry's nutritional intake was virtually zero! I discussed this with the nurses, but nobody seemed bothered and quite frankly had no empathy or understand the gravity of my despair over my rapidly thinning Harry. I was told, well the side efffects were expected and would be over in a week or so, at most. However, when you are deaing with your child on a 24 hour basis, this time frame feels like eternity. I wanted Harrry to be reviewed by a doctor whilst at LGI, but I was told I could be waiting some  time, the ward was busy and I felt if we stayed I would have just bawled my eyes out or had a complete tantrum myself that nobody was listening to me or understood what it is actually like to live 24/7 with this god awful disease, this though was no good for anybody. The nurses seemed to think it was as simple as putting Harry on his feed 5 hours on 1 hour off, but when we are in LGI so frequently this is impossible and when his tube comes out, the whole feeding regime promptly stops. In the night when Harry is sick, we stop his feed and I don't apologise for needing sleep and not setting my alarm to get up an hour later to turn the feed back on, so if we have 3 hours between Harry waking the feed stays off. WE are up several times a night with Harry, so we can't be up any more. That is why being in hospital has its advantages at times, as at least a nurse can supervise his feeds and medicines, whilst I sleep,  or try to inbetween his vomiting and diahrroea. I have to try and survive to support my family and the cooking, washing etc is still there and paul tries to continue to work. So in total Harry seems to take about 250 calories a day in feed, eats nothing else, drinks very little and vomits and passes nutrition out of his bottom too. Thus, my calculation of almost zero nutrition, leadig to an evaporating Harry!
So we go home and think Wednesday is another day! Alas at Granny and Grandads in the afternoon, yep Harry vomits, and yep his tube comes out! Another trip to LGI. However, upon ringing the ward I ask to speak the nurse in charge and ask for a doctor to review Harry before we leave. I take a suitcase in case they keep Harry in too.
Harry's bloods are taken as well as his tube being repassed and we wait and wait to see a doctor, whom finally sees us around 10 pm, we explain Harry's history and he recommends some new drugs, that are promptly stopped the next day by another doctor! We stay overnight and Thursday we spend all day waiting to see the dietician. We see another consultant, whom decides Harry looks better than when he last saw him during high dose chemo, I disagree though! Although admit the parental view will be different. I explained that the responsibility we feel looking after Harry at home is great. I explain that when he was poorly with high dose chemo,  he was put on an intravenous feed and I thought that should happen again, as his nutritional intake is zero. The consultant wasn't taken with this idea, as the side effects for Harry should soon subside. However, I felt that soon there would be nothing left of Harry. Nobody seemed to really get the gravity of how much weight Harry had lost in 2 weeks, which was 1/2 stone. He has never lost this much weight in all of his treatment. The medics banged on about Harry's immunty being low after high dose chemo and how we should not let him go to nursery, mix with large amounts of people, for fear he would pick up an infection, however if Harry loses more weight, then surely he becomes very vulnerable to picking up infections and his frailty means he does not have the ability to fight infections again.
We eventually see a dietician covering for our usual one whom, was on holiday. She spends a while with me,trying to understand Harry's situation and I explain about his significant weight loss. I feel grateful that someone is sitting down and listening to me. Harry is measued on the percentiless used to monitor children's height and weight. He is nearly at the 91st percentile for his height, but has dropped all the way to the 25 th perccentile for his weight. He used to be on the 75 th percentile and so the difference bewteen these ratios is great. The dietican would support Harry going into intravenous feeds as of the next day, however, we discuss Harry together with the nurse in charge. We finally agree to try Harry on his original feed overnight which has more calories in it. We had switched him over to a thinner lower calorie feed, to reduce sicknes and his tube coming out, but alas this had not had tthe desired effect. Therefore we agree that Harry should stay in another night to see how he manages on his original feed. Thereby, at least a few more calories are going into Harry. We would review Harry the following day as to whether to move onto te intravenous feed. The dietician was off the next day though, but left her home number if they needed to contact her.
Harry, takes the feed and vomits just twice in the night. It was very evident that nobody knew what to do with Harry. They could not increase his anti sickness medication, as he was on the maximum, there seemed no where to go to allevaite the side effects. This felt very disconcerting. At the beginning of radiotherapy, we learnt about the side effects, but got told generally medication could be given to alleviate them. However, Harry had tried different medication to no real effect.
I had a discussion with the nurse in charge with the ward, re a plan. The other, factor in all of this was the impending temporary closure of ward 31 for a week of cleaning. Half the ward was moving to ward 41. This is the ward Harry was on for surgery in April. A very noisy, sprawling ward. Beds are removed for parents in the day time, no drinks are alowed by the bedside, only drinks are to be consumed away from your child in the kitchen, which is small and busy, providing a space for about 40 families to use! There is a little hitler support worker who will shout at you if she sees you carrying a drink out of the kitchen and has the ability to make you feel age 2 again! Harry was in a single room, with our own toilet on ward 31. As diahrroea, was a major issue, sharing a toilet which was quite a walk away from the beds on 41, became very unappealinng and was a big factor in our grand plan. What I found highly amusing though, was that the nurses in charge had not even been up to 41 to check it out. When I was saying that there were 6 to a bay and no dividing doors, Neil the nurse in charge thought I was exagerating, but no! Later, when another nurse came back from visiting the ward, she said it was everything I had said. Just a long way from tthe comforts of ward 31, where there are only about 16 patients max on the ward and max of 4 to a spacios bay, with a door to close off noise from the other bays and corridor! As said in previous blogs in April, ward 31 is gold standard and the other paediatric wards strive to make this standard! Sad that oncology and Cystic Fibrosis have the best standard of wards downstairs. Think there is a 5 year plan for 41 to make the gold standard.
Going back to Harry's nutritional intake, to put Harry on an intravenous feed meant staying for the week on ward 41. This would be in no way relaxing for Harry. I remembered due to the noise last time, that Harry strugggled to get to sleep and being fatigued already, a relaxing environement was necessary. Really as a result, I agree to pursue the higher calorie feed, to try and get Harrry on the feed as many hours during a 24 hour period as necessary and to contact the ward if I felt things were again at breaking point. Between going home that Friday, another doctor reviewed Harry and felt concerned about Harry's lack of intake of fluids. She came back later and informed the nurse that he needed 800mls a day! Then the nurse came with 50ml syringes to get as much fluid down him as possible! This seemed bizarre, from nobody being bothered, to suddenly forcing fluid down Harry's NG tube. My immediate fear was that this would make Harry vomit more! Also within, 4 hours, his feed was turned up an extra 10ml an hour! Again bizarre, as in the past the dietician had advised only 5 ml daily rises! In a way I felt being in hospital was not acheiving anything and I now felt bullied to get more fluid into him. The ward was in chaos as everything was being boxed up to move it out for cleaning. I knew in the circumstances going home was right. At 3.30pm we found out Harry needed a platelet transfusion as his blood results came through. These were ordered and and I was sure we would be home for teatime, but no, these did not arrive till 8.30 pm, we ended up going to ward 41, albeit briefly, butby being there it reiterated why we needed to go home. We finally arrived home at 11.20pm!!!! Paul had gone to work and as planned, mum and dad had Callum to stay the night. So with Harry in bed, home alone! It felt very strange and lonely.
So the weekend. Paul took Saturday night off work, with the hope of going onto work Sunday night. We really tried getting Harry on his feed, but constantly had to stop the feed as Harry either vomited or had a tummy ache and then diahrroea. Sunday afternoon came and Harry really wanted to go to Granny and Grandads. whilst I took Callum swimming. Harry had fallen a seep on the sofa and Paul took him whilst we were out. However, my parents have never known him to sit there in so much silence, clearly very poorly.
Callum and I had a lovely time at the swimming pool. It was great to have fun with one of my boys. Callum is really coming on with his swimming and shouts to anybody in ear shot, 'look at me!' He really missed me and said I had left him last wednesday, as I could not pick him up from nursrey as I was in hospital with Harry. He feels very left out at times, and this reflects on his attention seeking behaviour at times. What I have failed to mention thus far though is that Callum is in pants and has actually had very few accidents and mostly does a poo on the toilet too! He was very ready for going into big boy pants and has for a while done wees on the toilet, so the progression has been quite easy, though we are still very proud of him! Though he knows he gets a sweet if he wees, so seeing as that is the way to Callum's heart, then he does more wees on the toilet!!!!
Not long after our return from swimming, Harry wants Granny and Grandad to bring him home. Harry had a tummy ache and once homme, vomited and yep, his tube had come up again! So distressing for all of us! I drive Harry to LGI, we are passed from one ward to another due to the closure of ward 41, we get the tube passed quickly. Nobody was bothered about Harry, Think that was his 8 th tube in 2 weeks! He just can't not have them, as he can't tolerate his medicines any other way, there are too many of them and he won't eat. Paul couldn't go to work again on Sunday as we were back into the evenng and well into Paul's shift. Goood job they are understanding!
So bank holiday Monday and Paul's official day off. We had plans to see friends, but Harry was too, unwell, so these were sadly cancelled. Harry slept most of the morning on the sofa. We try to get out on such a rainy day and head to Paul's parents. Life doesn't get any easier as both boys cling to me and won't let anyone do anything for them. They get so jealous of each other at the moment. Harry seemed in an incredible bad way, not interested in playing with any toys, very, very sad to watch.
I decide to contact the hospital with regards getting Harry reviewed by the dietician on Tuesday. Again we have to cancel plans for a lovely day out, the plan was to go on a Candleighters trip to RAF Linon on Ouse. The Mcmillan nurse rings me late morning as she is trying to speak to Harry's consultant re, any way of managing Harry's constant sickness and diahrroea. I wait all day for a phone call, only to be told to try the original anti sickness drugs that Harry was on. I had asked for Harry to be put finally on an intravenous feed and you can tell how desparate I am as ward 41 is the last place I want to be. However, an intravenous feed would not be granted, as Harry should begin to feel better.
Well its Wednesday today, Harry has had a few doses of the old medication. It has stopped him vomiting so much, but instead of vomitting he seems to have an almost permanent tummy ache and feeling that he is going to be sick. Therefore the chance of getting  his feed on today has been minimal. How can I put it on when he is telling me he is feeling sick! I think actually vomiting made him at least feel better for a time after. Harry did request some grapes at teatime, and it was lovely to see him eat a couple, made me think we were turning a corner, plus he was wanting to drink milk and water. Yey, I thought how fabulous, until at 8 pm Harry vomited and yep his tube came out! I was all for rushing Harry back to LGI, but Harry had his bloods taken today by the community nurses and I knew this afternoon that he needed a platelet transfusion. I'd arranged to get that done tomorrow after Harry's radiotherapy review at Jimmy's. I knew to repass his tube, he would need platelets first and these would need to be ordered. If I took Harry he wouldn't be home probably before midnight. Harry was so tired, it just seemed too crawl to take him. Therefore, he now has no NG tube, which means no feed till lunch time tomorrow and no medicines.
Utter despair continues. We have no life, just an existence. An existence to sit next to Harry, who has such huge attachments to me, I feel school is never going to happen. No real service input to support us. I have asked for a continuing care reassessment, the head nurse whom visited this a.m. still thinks we have no chance of reaching the decision support tool crieria. I looked at the framework yesterday and mentioned that in certain cases the criteria does not always need to be met, but a different argument can be made to get funding. The nurse informed me that this wouldn't be looked at in Leeds due to lack of funding and staffing. I said this was not right, but basically I should acccept this. She admits Cancer falls between service provision,but won't help us fight for a single bean. Now I know why I am always late out of my office, cos I try and fight for people to get the best service for their needs. I don't give a dam that there is no money in the pot. If for my service users I see a need, then I see it as my job to put the best argument down for services and haggle, even if that in some cases has meant applying to funding panel 3 times in a row to get funding for a service, that I feel is invaluable to a family.
Sadly, this is health we are dealing with, not social services and I don't have someone who wants to fight for me, but is a yes, sir, no sir person. Probably why she is head of the nursing team!
I also hate people coming imto my home and decciding its their position to tell my children not to winge and generally repremand them!h As she told Harry. He was going on, but I tried to explain, that when he gets into situations whereby he is frightened and concerned of what is happening, he seems to chant that he wants something. At the hospital it was about going to the farm. I think when you have no control over your situation,  you try and create control and that often can be, to be demanding. I have seen it often enough in the clientele I deal with at work. However, this nurse has no compassion or empathy, but after every visit from her I feel like a failed parent, whom has kids up the wall! Yes, Callum had a tantrum as I had said I would take him to nursery. I hadn't realised that the nurse wanted to complete a full reassessment whilst she was there, otherwise I would have gone for the alternative 2pm appt she offered, rather than the 9a.m. one. Then Callum would have been at nursery. So, Paul took a screaming Callum to nursery. Again, confirming to her my apparent lack of skill at parenting! I want to shout at her, I do try and tell her how hard it is deaing with all this and she just replied that she is sure it is. But no, she has noooooo idea quite how hard this all is.
So we are at hospital thurs for a radiotherapy review and Friday for a review with Harry's  consultant.
Fun, laughter, happiness evades us and in its place a dull aching feeling of utter despair and and sadness. Harry looks like a kid from a concentration camp. If I stripped him and photographed him and put the pictures on TV, money would poor in, as it does on comic relief day, when they show kids with there ribs and shoulder blades sticking out. The definition of the knee caps being too apparent to be comfortable to look at without wincing. Well that is Harry and it feels no one cares, no one, not even God at the moment, as why is Harry still vomitting! Paul and I feel if this goes on then Harry will die. I asked the Mcmillan nurse yesterday how thin you needed to be, before the organs pack in! Well, we will see, the story ends one way, lets just hope we can grab some happiness soon, before our whole family is destroyed by this disease. This is no life for any one of us!