Friday, 25 November 2011


Well Harry has had a good day. He has been driving his bike in his isolated bay and having me chase after him again with his trolley of drips. He's done painting this afternoon and then zonked around tea time. He has been sick again, but from talking to the consultant this is expected for the number of days post chemo treatment he is. He keeps having antisickness drugs to help him. No loose poos though.
He is off the morphine drip, which is good and on codine pain relief. Known for causing constipation, so I am sure we will end up with him being bunged up again before long.
We have spoken to the consultant today and they have all the test results through. The scan shows that Harry has neuroblastoma in all his bones apart from his skull as well as the main Tumour in his tummy thought to be attached to his adrenal gland. So one area is saved!!! That part is good as neuroblastoma could make the area round his eyes darken and make his eyes bulge, so at least even if he not very mobile he shouldn't look too different facially. Not to sound vain, but the poor chap has enough to contend with!!! He will loose his hair in a couple of weeks too. I didn't think I would be bothered about this prospect as he is not a girl with flowing locks, keen to have platted, but it will alter his identity.
In a way the cold weather that is supposed to come on being winter will mean woolly hats will be clad by most when outside.
The consultant is positive and he has a long journey ahead of him as we do too. Harry will have his poorly days, but we have to try and make the most of the good days.
As I may have said previously, no food is provided for parents staying even though we provide a good deal of care for our children. I found my bread mouldy this am and so asked Harry to order me some toast with his breakfast. He followed my request and ordered toast but added that it was for mummy! The lady making breakfast did good though and gave me some toast drenched in butter - Yum!
Tomorrow if all goes to plan Paul and I should have lunch out, not in the hospital and not a ready meal!!! Can't wait. A little normality.
Harry has his second lot of chemo on Mon and Tues next week. If he is well then he can come home Wed for a few days. I am looking forward to this but as expected also worried about how we will manage without the support of the team here. We will have a Macmillan nurse visiting as Harry has to have an injection I think it is 6 out of the 10 day cycle and I don't want to give this as he screams when it is done. We do have to learn how to manage the Ng feed system, so that will be enough to take on. Then also to monitor Harry's temperature as if it hits 38.5 we have to come straight back to the ward so he can have IV antibiotics. I also have to monitor if I think he is particularly lethergic or has a nose bleed as that could mean his blood count is low, so could mean he has to come back to the clinic for a blood transfusion. So lots to think about as well as not forgetting Callum. It will be nice to come home as be a family. I know Harry will have to get used to sharing us with Callum as he has had so much attention and one of us sleeping next to him. But it can only be a good thing not to be coming backwards and forwards to LGI even for a few days.


  1. Wow Sarah - that's a lot to take in. Will be great to be at home altogether even if it is only for a few days at a tinme :-)

  2. Thanks sarah for doing this blog, it's great way to keep everyone who is interested ups to date with Harry's progress - without you just repeating the same stuff over and over again.

    Sounds like you are getting lots of good support from professionals and friends and family too - just what you will need. Hope you have a lovely CLIC -Sargent social worker!

    Thinking of you all
    love from Norman and Eileen