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!

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