The final countdown…

Where do I begin? The days are whizzing by, the piles of ‘things for the big stay’ (as it is referred to in our house) are becoming mountains and nerves are showing.

Friday we received a call from GOS to say they still can’t tell us which ward we will be in or if we will have a room at all come Tuesday. May just be an overnighter in the patient hotel again. Although I totally appreciate that BMT wards are all last minute admissions/discharges it doesn’t help with nerves when you have no clue as to where you are headed. It also appears that Rufus needs a further blood test. Could he come to London on Tuesday as well? Errrr…no! So looks like bloods in Oxford on Wednesday that will be couriered to GOSH. Of course we won’t be taking him but a grandparent will.

Amongst the stress there have been lovely periods of calm, happiness and fun and also visits with more gifts, mostly got the Herbster, some for Rufus the super hero & even some for myself, Dan & the girls!

I need to write about these visits, gifts, words etc. I knew I had an amazing family and a fabulous set of friends but each one of them has shown me more care, love and compassion than I had expected. Some have written words that have been so moving and powerful, others have given gifts that show that they have really thought about us and what we might go through. Offers of help from collecting the kids from school, doing our washing, driving us to London etc have flooded in and even in the darker hours I know we are not alone as we enter that hospital next week. We have an army of love and support and as I said to some friends earlier this week

Thank you all xxx If the love and care from family and friends could cure him he would be cured a million times over xxxxx

In other news Herbie woke with a cold this morning…ugh is all I can say. Why now? I hope it’s nothing and that it won’t hold up the BMT process. A week since the PEG was inserted and he is happily moving around and cleaning it. He finally stands upright and is not as stressed about having it flushed daily by the Community Nurses.

With the sunny bank holiday weekend upon us we finally got the ‘treehouse’ completed. The rainbow hammock has been fab already and today Herbie had his iv outside in his hammock listening to Band of Horses on his ipad! image

So we are in the final countdown, 1 full family day to go before we split up, with Dan, myself and Herbie heading to London leaving Lily, Kitty & Rufus in the Shire!

I’m already missing home…and I haven’t even left yet.

8 thoughts on “The final countdown…”

  1. I can’t even imagine how you must be feeling at the moment, Emily, I can’t believe how much strength it must be taking to get through this whole experience. However, I do know that it will be your fab four and Dan who will be giving you that strength. Enjoy the last few days as a family and keep thinking that the sunny, summer days are stretching ahead for when you are all back together. Thinking of you all and wishing you masses of luck for the next few weeks. xx

    1. Thanks Shelley x It’s amazing the mountains we find the strength to climb when we have to, I’m able to get strength from many places including comments like yours xxxxxxxxxx

  2. You have been in my thoughts so much this weekend hun – I hope you have had an amazing weekend together – if I can help in anyway I am here anytime day or night, FB chat, text , call ANYTHING anytime!
    Give herb a big hug from us especially from baby Arthur & one for the rest of you too!
    Love you loads hun & I can’t wait to see you when you are back home, and this is all a distant memory xxxxxxxxxxxxxxxxxxxxxxxxx

  3. Good luck and strength to you all on this next leg of your journey, on the road to Herbs recovery! Lots and lots of love, Lucy ❤️

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