On track and steaming to day 0

Day T-4 arrived, after a long night with not much sleep and LOTS of bleeping machines! Once again Herbie’s heart rate dropped low and so did his temperature at 35.8 so he scored again! The iv’s finally finished at 4.30am but as the last one was on the big noisy pump the alarm was ear splitting in the darkness of the room and so I got up for a cup of tea & Herbie woke and demanded his ipad . I refused explaining it was ‘the middle of the night’. “What time is it then?” he asked? “4.30 in the morning” I replied to which he piped up”I knew you were telling lies, it can’t be the middle of the night if it’s 4.30 in the morning!” You have to give him credit for trying!

We woke a little less refreshed than I had hoped but my first worry that Herbie may start feeling sick & go off his food today was unfounded as he announced he was ‘ungry’ He also asked that he could wear one of the aprons! We laughed but who could resist such a sweet request!

I want an apron!
I want an apron!

The apron excitement was short lived with the promise of breakfast & a petit filous milkshake made by Small.

Petit filous milkshake
Petit filous milkshake

The iv’s started again at 10am with his 5th dose of the chemo Fludarabine and then Helen the hospital school teacher arrived clutching a laptop, promises of a bug club log in and tales of phone calls to Victoria (his outreach teacher at home). His little face lit up and we were given the royal nod to leave for an hour.
image

Dan and I headed to the launderette with a bag full of washing. Since arriving at GOSH we have needed a whole new set of clothes daily and a new pair of Pj’s each night. The washing mountain was growing. We headed to a local launderette giggling stupidly about possibly meeting Dot Cotton or Mr Oppadopolus there but it was lovely to feel happy and to be in the lovely sunshine under a blue sky. Once the coins were inserted and the drum spinning we left the launderette armed with a Costa gift card from James & Cathy to the Costa literally two doors down.
A cake and cuppa tea downed, a chat and a joke or two before heading back. Dan went off in search of a hotel room again. (Promises of the sick children’s trust rooms have not yet come to fruition) and I headed back to room 2 on Robin Ward to find a small boy tucking into a hearty lunch. He had enjoyed his school session and his next chemo, Bulsulphan arrived shortly after I returned.
The day passed quite uneventfully , more iv’s went up, Amikacin and then the ATG. Herbie wanted to build a train track. He’s not allowed to sit on the floor so we had to get the playmat & sheet out. The boys enjoyed trains & Cadbury mini eggs for an hour.

Trains
Trains

No filming today and the doctors here leave you alone except for a daily visit. Herbie was checked over and we were told all was good so far and going to plan. The Bulsulphan levels need to be at 45mg for transplant and Herbie’s are there already. One more dose of that, one more Fludarabine and ATG and then it’s Ru’s bit!

We still get daily bloods and are given the results to keep.
Today the results showed his lymphocytes had dropped to almost 0 at 0.06 which we want but thankfully his HB etc is ok so avoiding blood transfusion which is good.

So this BMT train is steaming on to day 0 and getting ever closer…
T-3 tomorrow! Fingers crossed we stay on track.

Bedtime
Bedtime

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