T-1… Day zero is almost upon us and today was quite hectic! It started in the usual mellow way with a small boy waking late. I already had my first cup of tea of the day and had showered, washed my hair and stripped my bed before his eyes opened.
Today was the day that Rufus was arriving and although I was excited to see him I was nervous too, wondering how Day zero and the bone marrow harvest would be for him.
Herbie’s blood results were back early and were all positive.
HB remaining well out of transfusion range at 97
WCC going down as required to 2.17
Neutrophils depleting too at 2.07 (again as required)
Lymphocytes at 0.03 and platelets also well out if transfusion range at 342.
We noticed that Herbie’s hair has become quite coarse and crunchy, we were told to expect some hair loss from next week so will be keeping a close eye on his pillow!
As Herbie enjoyed his morning soak in the tub there was another postal delivery! We are truly overwhelmed by the kindness of our amazing friends & family who have taken the time to write letters, cards and even emails , not to mention the gifts that have been given too. You probably will not ever know the joy it brings to an isolated 5 year old to get daily contact from the outside world.
First up today a lovely postcard full of well wishes from Cheshire. Thank you Vikki, Neil, Elizabeth, Benjamin & Oliver, he loved looking at the pictures and put it up on his bedroom door.
Then a parcel from Lynn & Lorna from back home in West Oxfordshire, and they had sent mummy’s favourite card! They had also sent a Moshi Monster game which we had to play immediately and Herbie kept cheating at! Thank you so much xxx
Then Helen, the teacher arrived and it was ‘fresh air time’ for Dan and I. I can not begin to tell how important it is to get outside every day and on a super sunny day like today it really was a great tonic.
We strolled in the sunshine and headed to a cafe in Russell Square where we drank tea in a sunny spot over looking the greenery.
It was whilst we relaxed that we received this photo from my sister who had dropped Rufus & my parents at Hanborough Station to board a London bound train. Our super hero was on his way to do the most amazing and precious thing one person can do for another, help to save their life.
We finally met them at Russell Square Station. It was wonderful to hug my boy again, even though it’s only been a few days since I last saw him. I’m sure he’s taller and more handsome than ever!
We returned to the hospital and my dad & Ru chatted to Herbie through the window via intercom. My mum is in the privileged position of being the third carer so could enter the room. They came bearing wonderful gifts from yet more fabulous people.
An extremely talented friend of my sisters, Natalie, and her daughter Amy sent him some amazingly personal and special gifts.
An selection of Hickman line bags with Moshi’s on
And a special surprise for Dogdog
He was thrilled.
Another of my sister’s friends, Laura & her son Lenny sent new Moshi additions which went down a storm!
Thank you so much lovely people.
We took Rufus to The Lagoon for some lunch and a slushie!
And there was even time for a go on the Indonesian instruments that were there for children to play all week.
At 2pm Rufus had an appointment at Safari outpatients for pre op bloods and consent. We got there and the bloods were taken quickly with no fuss. I asked at the desk if there was more to be done, where he would be tomorrow, what time he should be in but nobody had answers.
I headed back to the ward and daddy & Ru headed to the park for some sunshine.
Then my phone rang and it was GOSH asking where we were as they were not finished with Ru! So it was back to Safari for a quick once over by the Doctor.
At 6pm it was time for everyone to go. Mimi & Papa had a train to catch, Dan and Rufus had to book into the patient hotel & I was left with a very emotional little boy who “missed his family and wanted to go home”…breaks your heart.
However not long after the night shift came on he was smiling again. Firstly because one of his favourite nurses, Amy, was looking after him tonight and secondly , one of the others came in with a parcel for him! Turns out she is from Witney and a neighbour of someone we know! Small world huh?
It’s so kind of you and totally made him smile (and refuse to go to bed until he had made some of it!)
So Herbie went to bed a happy boy , understanding that tomorrow is a big day.
How do I feel? Excited for Herbie, scared for Rufus but immensely proud of him. Still such a long journey ahead but the first part is almost done. No one can tell us what will happen in the coming weeks but one thing I know, the support for us all out there is phenomenal. With that we will have the strength to climb any mountain that we find blocking our path.
Bring on day zero!