Wednesday, 8 February 2012


Well I thought I needed to put a positive blog on, as has been a while!!!!
Harry has clearly benefitted from his blood transfusion yesterday, that or the half a carton of single cream he drank yesterday! Yes, when I know harry needs all the calories he can get, when he asks if he can drink the cream, it is a definate yes!!!!
Well Harry's bone scan has been rejigged to tomorrow and Friday. Harry has taken someone else's slot! So we won't have the results from that for Friday, but at least it is this week. However, we should have the bone marrow result, which will give us a good indication about whether we can move to the next stage or if more chemotherapy is needed. I have butterflies in my tummy just writing this.
As always childcare plans are constantly being rejigged! As my friend was going to have Harry on Friday so we could meet the consultant and ask questions and take the information in, in our own time. However, as the bone scan has been rejigged, Harry has to have his bone scan at 9am, so we have to be in the hospital for 8am. The weather has also given out to be very frosty if not maybe snowy, so I would like Paul and I to travel together in his car, which has 4x4 ability. Though this means seeing if my friend can have Callum at 7.15am, then they later drop him at nursery. Yes, complicated. we then hope a play worker will sit with Harry, whilst we see the consultant.
Well Harry has been on top form today and it has had a really good day in hospital today. Harry was not isolated, so he could go into the playroom. We saw some familair faces which was good too. Harry even made a short animation. He borrowed some lego cars and police cars from the girl in the bed next to him and did some crash scenes, which bizarely ended up with a crocodile making an appearences and driving off in the police jeep - yes just a usual day out on the beat for the average policeman!
We got to put the animation on our memory stick, so Harry was so proud to show daddy when we got home!
Harry had a CT scan today and was down to have an anaesthetic for this to keep him still. Half an hour before the scan the anaethetist visited us and suggested Harry tried the scan without the anaesthetic, but if he wriggled, they could easily put him under! I agreed, but Harry was not sure. He's been full of energy and raced down the corridors to get to the scan, so it hardly seemed possible for him to remain still, but still he was throughout the scan and he held his breath when needed, for the pictures to be taken. I was so proud of him. He was so grown up and cooperative. Just like when I have needed him to take iodine twice today, in readines for his bone scan. This eveining I licked the end of the syringe and had to agree it was the most vile thing I have tasted, so was full of sympathy for Harry! He knows he has to take the medicine, in order for his scan to proceed succesfully, with the hope his lump will come out. A goal he has and was keen to tell the optician the other day, when I was trying glasses on!
So Harry has been in good spirits and a pleasure to be with today, unlike the little boy of recent days/couple of weeks. It can be like walking on glass. He will be laughing one minute and very tearful the next, but this has been due to the cumulative effect of all his chemo treatments and his bloods being as low as they can be in several areas.
In January, It felt like we were in control, I was doing Harry's GCSF injection, he was going to nursery for a few hours and he even made it out with friends and able to go to a bithday party at Whacky Warehouse (though he was black and blue following his antics of throwing himself down slides etc however, fun he did have). Then he got his first infection and it was confirmed that he was neutropenic for the first time. On talking to the medics it seemed likley he would remain neutropenic for a bit, but he didn't, 3 days later his levels had risen and he was no longer neutropenic! However, he was lethargic and for the last 3 weeks, we have not done much and as said Harry's mood has been a precarious one. This can ware you down on top of everything else.
However, as said he was really good today and may this continue regardless of the results on Friday.
As for Callum, he has been in nursery the last couple of days. He really likes going now and strolls in not giving me a second glance, which is brilliant. He fell asleep at tea time today, so missed his tea. This cat nap, meant he didn't fall asleep on the way home tonight and was full of it before bedtime. He was rolling around on the landing saying he was a wriggly worm and didn't want to be caught to get undressed! He's in a toddler bed now, and took him all of about 2 days to figure he can get out, so now bed time has become a bit of an issue as instead of on occasions we have left him to cry in his cot, he just gets out now! So bedtime has become more time consuming! The last 2 nights he has requested he has his cot back, I think he misses the security of the cot sides and so tonight to settle him, we had to leave he light on in his bedroom.
So now on a morning when Callum wakes, he potters across the landing to our bedroom. The first morning he did this, I could hear his voice and quickly realised that the voice was getting closer and that he wasn't in his bedroom!
He is such a a character and has the biggest cheeky grin, that one glance of this usually melts you!

So Harry has an echo tomorrow, an audiology test and this bone scan in the afternoon. As he did so well today without an aneasthetic, they will try him tomorrow without sedation. However, he will still have to fast in case he does not lie still and sedation is needed! However, I have faith in Harry. He understands so much for such a little boy!

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