Now is the time to understand more…

“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”
― Marie Curie
Last night I likened myself to a non swimmer in a rough sea and I was wishing for a mill pond and armbands.
Someone, somewhere…they heard my plea.

I woke to find a sleeping boy. He was cool and for that I was grateful. He still looked unwell and his lack of hair was still a shock. He’d had paracetamol at 4.45am. I got up, showered, sorted the room and still he slept. Helena, who cleans the room each day came in and sighed when she saw him. “still no good huh?”she muttered. The one thing I am so proud of about Herbie is how he seems to be liked by so many people. The nurses say they ask to care for him and the teachers say how lovely he is and even the lady who cleans his room at the hospital has a soft spot for him.

Suddenly around 10am he sat up and announced that he needed to FaceTime Lily & Kitty about Adventure Time! He wanted it on TV immediately and snuggled in the sheet & watched an episode.
I knew he was more alert than yesterday. He got up, got weighed and got into the bath, had a wash and then a little moan about his hair before getting back on his bed to watch TV and have a little breakfast!
I felt excited that he was even asking for breakfast! When the Play Specialist asked if she could come in as she had asked the previous few days he actually said yes! She said “game or arts & craft?” “arts and craft please” was the reply!



He made a picture frame and a butterfly and then returned to his ipad.
His drinking and eating were much the same as yesterday so he required a water bolus through his PEG at midday.
An amazon parcel arrived from Cousin Esta, Moshi micro theme park! Thanks Esta!

Daddy arrived back with news and gifts from The Shire and we were pleased to see him.
Thanks to Kelsey & Amanda xxx
Daddy had shaved his hair quite short too to help Herbie feel better about his.
He arrived just in time for the ward round. It was Paul Veys last visit as his month is at an end and a new consultant comes on for June. Shame really. He told us that he is almost certain the fevers are engraft of the new cells. No real sign of infection can be located but he is on all the right medicines if he has one. Herbie’s eyes and face had become itchy and again he said these were signs of engraving of the new cells.
We discussed the scan and ultrasound, scan as we knew was great, ultrasound showed granulomas in his spleen probably cause by the micabacteria. He said we should see counts rising now and that they would add in a new drug to stimulate neutrophil growth. With our minds at ease we could settle to some time together

As the day wore on Herbie chatted to Rehka and Kelsey (his nurses) a little and asked to sit on my bed

And I skipped off to get the cell counts before we did.

HB 86
WCC 0.41
Neutrophils 0.22* these are rising!
Lymphocytes 0.04
Platelets 35

So fingers crossed…a mum from the other ward, got the 100% engraft news today, she is Day 21 so it’s exciting! Keep watching those N’s & L’s! Herbie sat on my bed before to watch TV but the day had worn him out and soon it was time for bedtime snuggles and I was leaving to let the boys have a Boys Night In.
I arrived back home with excitement to see the others. The boys Big Night in had begun.
I was greeted by tired but happy faces but I know my phone will be by my side all weekend asking Dan for updates.
So I am grateful to everyone for their support and care yesterday, let’s hope T+15 is another good day for my boys x

13 thoughts on “Now is the time to understand more…”

  1. I hope you have a good weekend at home with your older children, I am sure they will be thrilled to have you back with them for a few days xxx

    1. Tanya, thank you so much for your card to me xx please know that Herbie genuinely looks forward to the letters Hope sends as do I and we never think beyond that. Herbie LOVES Thomas Land and thought it was great that you had been there. Xx keep writing, we need our Hope adventures fix xxxxxx much love to you all

  2. You are all an inspiration, you are in my thoughts and prayers – you go Herbie.

  3. We don’t really know you but know that you are friend of Leigh and Tims..You are an inspiration to others we have read the reports that you are doing each day,our hearts and prayers are with you and your family keep positive .take care (Hugo’s nan and gramps Abbott)

  4. Emily, I am in awe of you, Herbie, your family. You are all amazingly strong. Love to you all.


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