Tuesday, 25 September 2012

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! 

Wednesday, 12 September 2012

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 September 2012

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!

Thursday, 6 September 2012

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! 

Sunday, 2 September 2012

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!