Day T-2! Eek, it’s getting scarily close now. Rufus arrives tomorrow and the chemotherapy is finished and now it’s a waiting game.
Herbie woke with a twinkle in his eye and full of beans and I knew it was going to be a good day. He was finishing his first dose of the day of cyclosporin as we woke. The machine calling to us with its shrill voice in the stillness of the early morning that it’s job was almost done. I heard the alarm and then a hushed whisper “mummy?”
I pulled back the curtain that surrounds my bed to see Herbie sitting upright, frowning and a finger poised over the ‘silence alarm’ button. Just do it I said laughing and he laughed too and pressed the button silencing the machine temporarily.
He wanted to get started on the jobs of the day and after I got myself the essential cup of tea he started demanding that I weighed him, bathed him etc before Daddy came in. We opened the curtains to see blue sky and the usual view.
We chatted about things. Apparently Herbie believes Daddy likes him in hospital “because he gets to stay in a hotel then” and then he went quiet, turned to me and said quizzically,
“will all of this really make me better, I mean honestly will it?
I replied quickly that of course it would and why did he ask.
“I just wondered how they can make me better with these medicines when I don’t feel ill” he said!
We bathed, weighed etc and put today’s 20p in the Moshi Monster Penny Bank. 20p each day until he goes home…he’s already spending his great wealth his mind!
Dan arrived and I went off to sort breakfast bumping into Nikki the BMT nurse specialist. She asked how Herbie was and I told her he was good. She said to remember, each new good day means one less bad day!
Lucinda was our nurse today, she was a good laugh and Herbie really liked her. The nursing staff here are brilliant. She knocked on the window to tell me she had left post in the ante room.
Great excitement at the parcels and envelopes.
First a lovely card from a special ‘girl’ friend of Herbie’s , Libby.
He was thrilled (although a little coy) and the fab photos ( of Libs and her sister creating the letters of Herbie’s name) was lovingly placed on his door in pride of place.
The next great excitement was a parcel containing Moshi Mash up cards from Gay
and a card that Herbie enjoyed unfolding!
Then a parcel from our buddies The Abbotts, Herbie was thrilled by the train card and knew exactly which Abbott had sent it! A couple of new Moshi’s, a Lego Simpson’s figure and Moshi mash up cards were all a great hit.
A lovely gift from Auntie Wendy, Uncle Jon and cousins Harry & Lola to keep him in Moshi paradise and yummy sweeties too! I particularly loved their card with the words “get well soon: the world needs your awesomeness again! ” too right xx
Finally a package from Jo whose Moshi choice was a big hit! It was time to decorate!
After a quick decoration of the room it was Helen’s (Hospital school teacher)turn to spend time with Herbie so we headed out briefly.
On our return we bumped into my cousin Lorraine, who had popped to see us and was in reception.
Dan popped to check on Herbie & I headed to The Lagoon for a cup of tea and a catch up.
Dan got waylaid as it was finger prick day for Amikacin levels day and Herbie’s lunch had arrived.
I left Lorraine with promises of another catch up and headed back to room 2 to find that Herb needed a quick baseline eye test. He had a right whinge about the idea of eye drops and they decided to do it without. All was done quickly and he was fine. Then it was time for more meds. Herbie no longer takes his oral meds by mouth. They are all sent down his PEG which makes life so easy. The med lists are on this handheld ipad esque device which is cool.
Time for another set of obs and another iv and a now obligatory game of thumb wrestling with nurse Hayley ensued!
Blood results came back still looking promising.
HB (the red cells that carry oxygen around the blood) 94 (not at transfusion levels).
White Cell count 2.43 so dropping as required
Neutrophils also dropping as required 2.35
Lymphocytes almost gone at 0.03
Platelets at 315 (so thankfully not near platelet transfusion levels!)!All good as we head towards day zero!
Tomorrow my other baby boy arrives in London. My mum and dad are bringing him , via train, and he has an appointment on Safari daycare at 2pm. I can’t wait to see him! Herbie can’t wait either as he gets another family member in his room for the first time in over a week! Mimi.