Thursday, 30 August 2012

Thurs 30.8.12 finally Harry is on intravenous fluids and food!

Well as you could tell rock bottom was the state of play yesterday evening!
Harry was very lethargic and tearful this morning. We all went to Jimmy's for his radiotherapy review. It wasn't really a review though, as they immediately were concerned how poorly he was. I got him weighed there and he weighed 16.3 kilos! He's lost 3.3 kilos in 3 weeks. He was 17 kilos last week. My fear was he would lose more weight. We have tried so hard to get his feed down his NG tube, but the frequent tummy aches, nausea and actual vomiting prevented this much of the time! This morning the radiotherapy consultant spoke to clinic at LGI where we were heading for Harry's platelet transfusion, it was arranged that Harry would be reviewed by a doctor once he was there! On arrival at clinic it was heaving. So busy. It was lunch time. Callum wanted a buscuit and a drink. Daddy got these for Callum, whilst I had a groaning Harry on my lap. I'd forgotten thurs was the day many children fast for bone marrow aspirates and so you are not supposed to eat in the waiting area, but go to the canteen, until this women very curtly told us of this fact! Having been to Jimmy's already, not had a drink, stressed up to the eyeballs, not wanting to take Callum to the canteen as both parents wanted to speak to the pending visit from the doctor, I replied it was hard for everybody! Then Harry wanted some milk. I certainly couldn't take him off the ward, the kitchen is tiny and for pardnts only, if I took him in there then I would contravene another rule! Harry had, had a temperature that morning of 35.5, the radiotherapy consultant said this could still mean that he was brewing something and he was a bit snotty! I cart Harry down the ward at clinic to the nurses station and declared that I thought Harry had an infection and needed isolating. The support worker said they wouldn't necessarily isolate him and asked what type of infection. I said I didn't know and upon further interrogation I burst into tears with the stess if it all! However, we got a single room and all 4 of us could have drinks and food without offending anyone else! (even harry had a snippet of sandwich) Relief!

So I asked for the dietician to review Harry too, knowing she was away tomorrow and in fact a doctor and a dietician reviewed Harry together! Having discussed Harry, waited a few hours for them to discuss their findings with Sue our consultant, finally he's been admitted, put on intravenous fluid and he will move onto intravenous food tomorrow!
To top it all, (in a good way!) ward 31 had been reopened and has a mish mash of 3 wards on it, there are still beds on 41, but thankfully we have one in 31! A bay, not a side room, but 31. Yey! God is looking down on Harry and I now feel it will all be alright!
Harry was actually engaging in making a Lego fire engine with grandad this eve! Not felt like doing that in ages! His feed down his NG tube has been stopped for now to give his gut a rest. He has not committed today!
Harry has tickets to see a circus next Fri, maybe he'll make it. It's just round the corner from LGI, We can make this a goal! We have had to cancel
His birthday party, planned for Sunday is cancelled! We have not discussed his party this week and being so poorly lost concept of time scales, so it's not a big issue, but just another nice thing to be crossed out of the diary lately.
However, the aim is to get our vivacious Harry back! Hopefully we can reschedule his party for a couple of weeks time. If anyone deserves a great birthday and party Harry does! His next treatment scheduled for Monday has been delayed. It will likely start in a couple of weeks, we will see. Let's get Harry built back up again!
Thanks to everyone who has sent us such kind words and offers of help! We appreciate it!


  1. We are so very sad to read your recent updates, we pray for you all often and don't understand why you all have to suffer so much, especially Harry. We won't give up! Love Gill & Martin, Hornsea

  2. So pleased to hear you have some good news for once. After reading the previous blog I felt your utter despair. I do hope now that Harry starts to feel much better and go on to enjoy a his birthday party and start school.

    We will all continue to pray for you all.

    Love Margaret