Saturday, 17 March 2012

Saturday 17 th march. St Patrick's day!

Well another week gone on our journey to get Harry cured of his cancer!
To commence where I left off last Friday, Harry had the weekend in LGI whilst he had chemotherapy drugs pumped into him over a 48 hour period.
On the Saturday he awoke, bright and breazie, having slept through the noise of the crying baby at various points through the night, the beeping machines, the nurses coming in to check the baby etc! Whilst his mother had unfortunately heard all of this and as a result didn't want to start painting at 7 am! I managed a strong coffee and got Harry to watch his DVD player. But by 8 am Harry was very insistent on starting the tray of arts and crafts the play worker had put together the day before!
So I got his paints down and he commenced painting his mask. He had painted several pictures by 10 am and decided he'd had enough and wanted to go walk abouts. So we wonder down the corridor of the ward, Harry insisted on taking his remote controlled car, which has a good range on it, so much so he can make the car go round corners without him in sight and make people jump, or trip them up! So there's me pushing his stand, with his pump and chemo drugs attached, so he can have full control of this car! 1 doctor asked Harry what he'd been up to during the morning and Harry told her about his mask, so she asked to see it. Harry promptly went to get it, however when he saw the doctor she had her back to him and was about to make a phone call. Harry made the loudest roar he could, upon which the doctor turned round and seeing Harry with his brightly painted mask on, let out a small scream in surprise!
Harry thought this was very funny and proceeded to roar at anyone else passing by!
So full of beans and hard to contain on the ward, this animated Harry was unfortunately short lived this week.
As expected Harry has dipped as a result of the chemotherapy drugs and has reached rock bottom as I write this and we are again in LGI. They'll be charging us council tax soon if this government is anything to go by! But let's not get political otherwise the blog will never end!
So to begin the week at home Harry initially vomited a few times, despite the anti sickness drugs, then he has become very lethargic and fragile, as the days have passed.
His HB count was 8.5 on Sunday, so borderline in terms of being anaemic. Above 9 is much better. I knew this score would drop during the week and a transfusion of blood would be needed, but when exactly would be the best day to get his blood tested?
Harry was quite unbearable on Wednesday, very tearful and fragile, leaving him to make a cup of tea had become an issue. Like having an 8 month old baby having attachment anxiety issues, however you can pick them up and make the cup of tea with them under your arm, well almost!
Harry always gets very emotional when his HB count drops. I knew his neutrophils would be dropping too.
So on Wednesday Paul and I agreed his bloods needed testing, so I called ward 76 and requested that the community nurses took Harry's blood to see if a transfusion was needed. On thurs morning the nurses call and want to come fri, I knew if this was so that we would all be bawling our eyes out with Harry and the 'men in white coats' needed to be deployed to rescue us from insanity! So to avoid this I reiterated the need for Harry's bloods to be done that day. Alas, they couldn't come till 11.30 am and for some reason they could not take a blood match sample, which means if a transfusion was needed, of which I had no doubt it was, that we would have to wait 2 hours at LGI anyway before any blood could be ordered. Ranting now! So therefore, the quickest way was to take Harry to LGI ourselves, whereby there they take the blood match sample at the same time they take thd blood to be tested, meaning once results through, blood can be ordered straight away!
So voila, at lunch time it was evident that Harry's HB score was 6.9 and a transfusion necessary.
So we return home for 6pm!
I had hoped Harry 's transfusion would have perked him up, but with the knowledge that he was neutropenic again and therefore immunity low I knew I had little chance of keeping Harry at home.
On Friday, Harry had a very quiet day. Callum was in nursery as planned. This was needed as I couldn't cope with both of them, but a shame as I had seen little of him the previous day, as Paul was with him. Harry had a Playworker come and see him in the morning. This is a fortnightly visit as he can't go to nursery at present. Harry did enjoy this session, although quieter than usual, I felt it had stimulated him and was good that he had someone other than his family focusing on him for a while.
Harry's nose was like a tap and his temperature slowly creeping up. By Friday eve I knew LGI was definately on the cards, but could we get Friday night at home? I wasn't convinced, so having got a very tired Harry to bed, I gave some time to Callum, not knowing if I would see him in the morning or not. So Callum had a particularly long bath and played with his and Harry's boats and the little playmobil people.
So each time Harry awoke last night we took his temperature. It hovered around 38 degrees C, mostly below, but not above the magic 38.5 whereby IV antibiotics are commenced and a several
Day admission required.
Paul went to work this am and I commenced breakfast. Harry was in a very sorry state and having vomited in the night and now this morning it was time to face the facts! Harry's temp was 38.6! I could no longer deny that LGI was on the agender!
Mother's day, what mother's day!
My wish the night before was that we could just all be under one roof, that was my present, nothing more, nothing less! Not to be!
I did not rush to LGI as it was the changeover of shifts when I rang them and they had to go and do some bed shuffling to create an isolated bay as Harry 's nose has been like a tap.
I admit I did not want to leave Callum and so delayed the arrival on ward 76 as long as I thought I could!
However, once settled in, it is never as bad as I anticipate. I guess once I have readjusted my plans for the weekend and accepted the inevitable, it is ok. It has probably been the build up all week that has been worse! The knowing that Harry will dip, that he'll prob need IV antibiotics, but when exactly, which day and which hour would our family be torn in two again! I knew Paul needed to be at work, he has had lots of time off, needed to either care for harry in hospital or Callum at home.
This weekend is day shifts. With redundancies on the horizon, nobody can be complacent even if your child does have cancer.
So here Harry and I are, Callum has been cared for by my parents today and my in-laws have come up for a couple of nights to look after Callum, so Paul can go to work. Then Monday, Kate will have Callum for a bit and then probably my parents, prior to Paul's return from work, and that is as far as the logistiacal planning has got, quite enough for today!
So today Harry has had a platelet transfusion and is currently on IV antibiotics and IV fluids. His neutrophils are 0.03 and his white blood cell count 0.18, these instill immunity in our system and help fight infection. No wonder Harry is in such a lethargic, limp state! I pray that these potions can work their magic and our vibrant Harry returns for the end of next week. He has a week of tests ending with a bone marrow aspirate on the 23.3.12. Then we get the test results on Friday 30.3.12. So that means a whole week with no chemo or tests. Harry, should be at his optimum and dare I say it a trip away on the cards. Shhhhhh as someone might hear me and thwart our passage out of the county of Yorkshire!
So yes, today is St Patricks Day, I only realized this on taking a trip out of LGI to get some coffee and saw people out and about in top hats enblazened with 4 leaf clover! I live in such a bubble these days from the outside world!
However, my magic i phone - yes definately magic, now has a Kindle app on it and I have, oh yes, joined the techno brigade and downloaded a book!! Never, never did I think I would, but it is just soooooo easy! One click on amazon, 5 seconds later, yes it is there to view and read - magic!!!! Oh and at a fraction of the cost of a paper backed book! Oh and the other very exciting thing - I did say I live in my own bubble - you can downlaod free samples of books! Excellant if you are writing essays and want a feel for a book and can nick a quote and pretent the whole book was read!!!! top tip there for any students reading this!
So I have downloaded 'Loving Hannah: Childhood Cancer from the other side of the bed' by Carol Glover - Hannah's mum. She's a nurse practicioner, so she writes from the view point of being the client and not the health provider, a bit like myself! Anyhow it is set in North America and one very stark worry so far is whether Hannah's treatment is covered by their insurance. It is these papers that have to be shown prior to any commencement of treatment. Which leads me to be truly thankful that we still have the NHS. OK it is being chipped away at, but for those that need such treatment as Harry the financial cost is unimaginable, however covered without us dipping directly into our pockets. Yes we pay taxes etc etc, but my family do not have to worry about the cost of the drugs, hospital fees etc!
So tomorrow is Mother's day. My parents are visiting and will partake in the free Sunday lunch provided for by Candlelighters. So not so bad really. I just won't see Callum, as to bring him, means my parents could only stay an hour as the playroom is shut on a weekend and Harry is too poorly to tolerate his boisterous behavious for long. I know that he will have a nice time with Grandma and Grandad and just look forward to seeing him when I can.

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