Keep on keeping on.

Today was T+3, it’s actually amazing to think we have been here two weeks tomorrow and that we are already 3 days post transplant! Time is racing on which can only be a good thing!
We woke a little later again today, always a pleasant surprise! An even nicer surprise was that Herb was again in good spirits and appeared fighting fit!

The Monday morning regime on the BMT ward is a little different to the rest of the week because it’s the day they take not only bloods but poo and snot samples, otherwise known as stool samples and the NPA. The first two really don’t bother Herbie as they don’t hurt, he doesn’t even feel them but the NPA is a very different matter. You may recall he kicked up on arrival at GOS two weeks ago about needing one. Today was no different! Our nurse was Lucinda again with the HCA Rose. Poor Rose had been sent to do the NPA but I could tell she didn’t want to. One of the senior nurses, Maxine, came in to sort out an iv as Lucinda was with another patient and Rose asked if she would do it. We warned Maxine about the shouting but I don’t think anyone expecting this co operative , happy little chap to kick off like he did. He went wild and Dan had to hold him down whilst I tried to talk him round calmly but to no avail. Lots of people were looking through the window from the ward in disbelief!  Finally we just had to hold him down whilst they put the tube in his nose, it’s very very quick but he scowled at us all telling us to leave! Once again affirmation that having a PEG inserted to pre empt the need for a feeding tube was totally the right thing to do!

Once that moment was over the doctor arrived. She said that he was doing extremely well and reiterated that every good day was one less bad. Dan finally decided to head to the launderette (I think he secretly likes going there!) and I stayed with Herbie until it was time for Helen, the hospital school teacher, to arrive. Whilst we waited the post arrived! Herbie was thrilled and so was I as I finally laid my hands on Ru’s parcel from last week!

Postcard from Toby
Postcard from Toby

The first thing we saw was a postcard from Toby who said he had met Herbie whilst watching Felix play in Marriotts Walk last year. Herbie liked the card and showed me where to put it on his door.
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Another card from Grandma’s dog Floss and a Freddo to scoff later (that’s Herbie not me!) and then

Parcels from abroad
Parcels from abroad

Great excitement when I explained that the next package was from New Zealand. A selection of lovely cards drawn by the three Rooke girlies, Molly, Tessa & Annie and a photo of them which Herbie wanted to add to his wall. He particularly loved the train cards ladies!
Helen arrived and so I went out into the gloriously hot day, two drinks in hand, and met Dan in Queen’s Square.
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Finally my phone rang, Char & Leigh had arrived in London and were on their way to me…I was very excited! Once they were at the hospital we popped briefly up to see the small man of the moment and give him more things!
A Moshi jigsaw…with Moshi from Auntie Leigh and the Abbott clan.
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And of course a change to my ugly old face when Auntie Cha Cha and Auntie Leigh turned up. Herbie tried to prove the point that he still had energy by lots of running!
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Great excitement ensued as more gifts were opened from Auntie Lucy, Jo Marsden and Helen Smith and her crew.image
The fibre optic lamp was especially a big hit, thank you Helen, David, Ben & Harry x
Cousin Otis’ friend Immie sent a lovely coloured Furri for him too
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Finally all Moshi mash up cards, Lego and Moshi’s were opened.
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I left when Dan returned with our washing, & we went for lunch.
We headed for Brunswick Square where we had a lovely lunch outside in the sunshine. It was great to see my sister and Leigh. I felt like just briefly normal transmission was resumed.
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After a lovely few hours I returned to the hospital refreshed and happy. The boys had had a fun time without me! Herbie settled down to a large plate of chilli. His eating and drinking is still spot on. The house keeper Emily said she loves delivering his dinner as he’s about the only BMT patient who eats!

Monday is chilli night!
Monday is chilli night!

Blood test results came in…
HB 102 so good
WCC 1.40 dropping again
Neutrophils 1.33
Lymphocytes 0.03
Platelets 289
All still on track. The levels showed high levels of ciclosporin so today’s evening dose and tomorrow’s morning dose are being skipped. Less iv time is good!

Dan went out to meet his old mate Will this evening for a catch up and much needed pint
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Then he went to see Hiss Golden Messenger. We missed him but it was a much needed battery charge and a fleeting glimpse of our normal life. Apparently he chatted briefly to MC Taylor  (who is one half of HGM) after the show & he wished us all well.
Herbie and I were ‘home alone’ with Lego and general chat, including ordering these fab T-shirts using a design by Alli drawn for my two superheroes last Friday. Can’t wait for them to arrive!
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Finally it was dark enough to try out the new lamp from the Smith family and even the nurses were impressed.
Thanks guys, he loves it.
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And so I come to the end of today’s entry. I want to thank each and everyone one of you who reads this, comments and all of you who text, send Facebook messages, visit, bake, send gifts etc. You all help us to deal with this tricky situation right now so thank you xx
So I’m off to bed with my poor dry, chapped & bleeding hands from the excessive washing (despite constant hand cream applications!
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And do you know after two weeks I feel oddly at home here in Room 2 of Robin Ward…all I need is a string of fairy lights! And some candles!

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