Okay people hear the news , I got something to yell about…

T+25…SUPERHERO DAY

I need to start today’s blog with statement…

North Leigh School, Pre-School and the community that it serves is AMAZING

A few weeks back I received an email from three of the teachers at the school who wanted to know if they could raise money for Great Ormond Street whilst involving and celebrating Herbie, Rufus, Lily & Kitty. Of course I thought it was a great idea and I was touched that they wanted to do something. Ideas started to grow and every step of the way, even once the BMT began , I was kept in the loop, asked for my opinion/input (they didn’t need it as they had brilliant ideas.) This was a lovely distraction for me and a great one for Lily, Kitty & Rufus too. So Superhero Day was arranged and people started to get excited. My children all thought they knew the plans for the day as they had been involved but actually the teachers managed to add in an extra twist that they were unaware of… The kidnap of a staff member and the live Skype link to Herbie in Room 2 of Robin Ward!

So with costumes planned and excitement mounting it was heartbreaking when I received this picture from Dan first thing this morning

Damn you Slapped Cheek!

showing Rufus with Slapped Cheek/Fifths Disease. No Superhero Day for one of the real superheroes in our family. He was sad and so were we on his behalf.

Whilst the excitement ensued back home, with texts and posts on Facebook showing an array of happy smiley superheroes in brightly coloured regalia, things began much as any day here in room 2. Eagerness to have a bath to try out the robofish so kindly sent by Mark, Mel and the boys yesterday and then once dressed Herbie settled down to breakfast

Multitasking again!

And a quick game with his micro Moshi theme park whilst watching TV!

A parcel to open from Mrs Burgess! “Oh I like Mrs Burgess, she always wears pretty pink tops” he muttered as he unwrapped the box. It contained a really cute personalised bear .

Helen, the teacher arrived with the camera to start filming Herbie’s Super Hero movie that he is making and I headed out into the brilliant sunshine and the heat to get lunch and get some fresh air. I spent my time catching up on the array of amazing posts about the Superhero day and felt truly content and very very lucky to live in such a supportive, caring and loving community. Pre School and staff were also joining in!

On my return I found Herbie demolishing his lunch and trying to make a dent in the two litre fluid intake he was now expected to have each day!
Blood results were back and encouraging

HB 90
WCC 4.30
Neutrophils 3.11
Lymphocytes 0.53
Platelets 41 (heading down again!)

Obviously the neutrophils are boosted again to 3.11 but we really need them to stay above 1 by themselves quite soon.

My mum and dad arrived shortly after lunch and as we settled down to chatting to my dad through the intercom and Herbie opened another pack of Moshi Monsters we realised that the Skype appointment was drawing ever closer.
A test run with Laura Cable and Michele Lincoln, two of the teachers, at 12.45pm was a great idea as it didn’t actually work immediately and we were all starting to worry a little. A massive cheer from us all when suddenly their faces popped up on our screen! We had lift off!

My mum and dad went to get lunch and Herbie and I waited for the tone on the ipad to let us know our screen would soon be adorned by Superheroes!
Helena came in to clean and stopped mopping to look, intrigued as the tone arrived, as arranged, at 2.20pm and as the picture appeared on the screen Herbie let out a squeal of delight. Sadly we were without sound at this point so the school didn’t get to hear it!
Once fixed a question came through loud and clear “can you hear us Herbie?” “Yes I can now” he replied and this was greeted by a loud roar of approval from the sea of superheroes before us. “Do you want to say anything?” “you all look awesome” was his reply again met by a cacophony of superhero cheers!

Skype with the school

As Herbie interacted with his school, teachers, friends and family for a few minutes I had to move away from the screen suddenly overwhelmed by the emotions as I watched my precious and brave boy feeling included, feeling supported, feeling like Herbie again. Amazing.
The children signed off to hunt for the missing member of staff and Herbie asked
“How long until they call back? I really miss them.”
He looked longingly out of his window at the sunny day and added “I can’t wait to get out there again”

The moment was broken by Hayley, our nurse today, speaking through the intercom to tell us that the doctors had arrived to do an ultrasound of Herbie’s spleen again. Herbie was not very happy!

Ultrasound

. Once done they scuttled off giving nothing away.

Tuesday means doctors ward round. Olga & Liz arrived all smiles and I felt instantly at ease. Whilst Liz checked Herbie over and then got tickled by him I spoke to Olga who said things were good, blood looked good. Kidney function would be good to resolve before he went home and he may come off ambisome and amikacin. Engraftment bloods would be in tomorrow. They left with a positive spring in their step and we settled down to find out via Skype what was happening next.
I really have no words to describe how special these moments shared with his school were but they were definitely memories that we will talk about long after the event. When the Skype was over and the cheering was still ringing in our ears Herbie made me giggle by saying “well that was nice of them wasn’t it mummy?”
I have to thank the teachers who helped make it all possible and all of my wonderful friends and fellow community peeps for dressing up their children and sending in their £’s and to Jo & Cathy for making and selling the superhero cakes.

My mum and dad returned and so did Catey with a radio mic. Could I put it on and remember to not put my back to the camera? Mmm, I wondered why they were filming, ward round was over, Superhero Skype was done but I obliged anyway.
Just then I saw Paul Veys donning a plastic apron. He came in and commented on how well Herbie looked. Then asked if we had heard the news re engraftment bloods…
I hadn’t, they were coming tomorrow, the doctors had just said?
They had the results today though…

100% engrafted

I stood shocked at what I had heard, 100% engrafted, all of the neutrophils growing in Herbie were from Rufus! It had worked, it had worked!
Oddly I didn’t squeal, I didn’t cry, shout or do anything. I smiled, nodded and thanked Paul Veys. Even now it hasn’t sunk in and at the time he said it suddenly I drifted off hearing him talk about going home, iv’s etc etc. Home is close now. Dare I even believe it?
I called Dan with the news and he was elated.
I mentioned Rufus and Slapped Cheek to Paul Veys, it’s apparently very dangerous to people who have had a BMT so Dan took the kids to the doctor for confirmation. Rufus definitely has it so Herbie won’t be home just yet!

Once he had gone I went to chat briefly on camera. It was still hard to believe. dad took me to get my dinner and then we waved goodbye to them and Herbie and I concentrated on getting two litres of fluid in him and reading books.

So Super hero day, T+25 , really was a Super hero day all round. Thanks to all involved xx
5 weeks into this transplant and
“Okay
People hear the news
I got something to yell about
okay People get the news
Here some thing to feel swell about
Good news !