Whole lotta love going down…

T+5 ( it really is this time!) … 5 days post transplant.

After complaining about his mouth last night I was worried what he might be like on waking this morning.  He woke without mentioning it at all. He said his tummy hurt a little but that soon passed as well. when we asked about his mouth later on he looked bemused! “Oh that’s fine now” he muttered!

Usual daily routine ensued, morning iv’s completed it was time for a bath.  Whilst Dan sorted that out I began tidying the room. It’s only small  and needs keeping in order every day  but I like that. This time next week I will be doing all of this on my own but that’s ok. The days will be full!

The post arrived and  well…what can I say?  I really am overwhelmed by the love and care  and concern shown by family , friends and people who don’t really know us !

Two huge gift wrapped boxes caused the big stir at the nurses station, but then the post trolley was emptied and it was all for Herbie!  We staggered the opening today throughout the day.

The big boxes first. Jam packed full of Moshi goodness from our old friends Em, Jonny and their boys , Stan & Jed. Herbie could hardly contain the excitement as he opened  the parcel and pulled out a plethora of goodies. The cards were awesome and Herbie loved the messages inside. He replies to Jed, “yes please, I would love to come to the patch when I’m better x” and also that he does like the Rolling Stones and he has a t shirt with them on.  To Stan, ” yes the snot test is yucky and I hope you never have to have one! ” There was also a parcel for me, that lovely friend knew  just what I needed, intensive hand cream and a string of pretty lights xxxxx

Thanks Em, Jonny, Stan and Jed xxxx
Thanks Em, Jonny, Stan and Jed xxxx
Thanks Em , Jonny, Jed & Stan and also thanks Gay & Colin.
Thanks Em , Jonny, Jed & Stan and also thanks Gay & Colin.

Next a lovely card from my friend Gay with a Costa card for us and a comic for Herbie.
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At this point the teacher, Helen, arrived and that was our cue to leave and get fresh air. The day was still young, sunny and it was almost time for lunch so we headed out to Costa armed with our card!

On our return we found Herbie in the grips of a Super Hero frenzy with Helen. He had two lovely books from the Readwell project, which we have accessed before in the JR on numerous occasions. We enjoyed them again later on in the day in a peaceful moment! http://www.readwell.org.uk
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Herbie was keen to continue with his envelopes after his tummy was full of ravioli and banana bread!
The first envelope contained more lovely pictures from best buddies Lily & Sam. I am always a little touched when he opens post from his best friends as he becomes quite reflective and today was no exception. “I miss my friends so much mummy, I want to go home and go back to school.”
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Lily & Sam’s letters reiterated Herbie’s sentiments, more heart strings pulled! The Batman jigsaw and Transformer however cheered up the little face as did the photos of his friends x

Thank you Emma Frame
Thank you Emma Frame

The next parcel was from someone that we haven’t met. This is the kind of kindness that I was talking about earlier. A person who also shares a Primary Immune Deficiency feels enough care and concern about someone that they haven’t met to send them a card and gifts. Emma, thank you so much and we hope that your PID is controlled and that you are well and happy xx Your kindness made Herbie very happy today. He was particularly excited by the fizzing Moshi bomb which he hasn’t had before and loved!

Thanks Jacob!
Thanks Jacob!

More correspondence from fellow classmate, Jacob, raised smiles and reignited conversations of school and friends and added to his Moshi collection!
Belinda and family we need to also thank you for the fab Moshi stuff, here is a sample of some of it and Herbie says “everything is awesome!” He also can’t wait to spend his token and the others are thrilled with theirs too! Oh and we are off to Starbucks tomorrow at 11.30 courtesy of you xxxxx
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Thank you Hannah
Thank you Hannah

The card and Moshi above were from PIDUK’s Hannah who has been sharing news with supporters of Herbie’s progress and shared our blog etc. She also shares a favourite immunology nurse, Nicola! Thanks and love to you Hannah. (Herbie says ‘I don’t have that Moshling…you picked brilliantly!). Also enclosed was a great card from PIDUK wishing Herbie all the best too.
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I’ve told you about PIDUK before but I will say again that it’s website is well worth a visit, so many people suffer with immune deficiency and for many it can be quite overwhelming. Raising awareness can help with treatment but more importantly early diagnosis. My dear friends Sam & Ricky will be raising money for them in a memorial pool event this month in memory of their son, Liam, who was in my very first class as a newly qualified teacher. I am grateful to them for supporting this cause close to my heart.
http://www.piduk.org
Happiness is a letter from Hope
Happiness is a letter from Hope

The last envelope opened was another letter from Hope. Hope is another 5 year old (although soon to be 6!) that has written to Herbie every week for a few weeks now. He really does love getting her letters and hearing all about her week. Herbie wishes you a very happy birthday Hope and says the cakes looked cool but he loved the get well gifts you sent instead (and he thinks you are right a cake may have been squished in the post).

With the post open and Dan off out for the afternoon , Herbie and I decided to have some Moshi fun with the treehouse and his Moshi’s. However we had just settled down when Laura , one of the play specialists arrived. Herbie really enjoyed teaching her all about Moshi’s as she knew nothing! (And I got to slip out to the kitchen to make a quick cup of tea).
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The rest of the day was spent chatting, reading books and playing games.
Daddy returned and the whiteboard filled up with information and jobs done. The day staff said their goodbyes at 8.20pm, Lucinda and Kelsey had been looking after Herb today and he had spent the day telling them that they were not posh…he’s so cheeky! Amy was back as his nurse tonight, he adores Amy! His eyes go twinkly when he sees her! She is incredibly nice.
The nurses are fab here on BMT, you do get to feel like it’s a family on this ward.

T+4 board
T+4 board

I feel I must also share the fab cake that my sister in law has made for my little super hero donor back home at his request! Isn’t it fab?

Superhero cake for Ru
Superhero cake for Ru

Blood results today were as follows (again for Mrs A and also Grandpa!)
HB 97
WCC 0.53
Neutrophils 0.45
Lymphocytes 0.02
Platelets 200

So the neutrophils & lymphocytes are almost at 0 which is where we expect them to be. HB & Platelets still not in transfusion range.

One more gift was given this evening. Our talented photographer friends, Charis & Owen Warrell of http://www.oacphotography.com
have offered to photograph our family when we are all reunited and well. We are so grateful to them x

So as the night drew in I plastered my hands in hand cream, turned on my lights and Herbie’s light and sat in the dark until Dan left for his room.
It was really pretty, thanks again Em & Helen.

Mummy's lights by her bed
Mummy’s lights by her bed
Herbie's lights
Herbie’s lights

Tomorrow is T+6, bracing ourselves for T+7 onwards as his counts drop. However I am happy because I know we have the most amazing network of family, friends and even people we haven’t met supporting us from near and far.
There really is a whole lot of love out there…thank you xxx

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