40 days and 40 nights


So Paul Veys had expected us to have gone over a week ago but here we are on Day 40! To be honest we had always anticipated 8 weeks and it’s only 7 weeks but quite a few people are leaving in the next few days from Robin & Fox wards, some that came in just before us some just afterwards. It’s sad because it was meant to be us too but then again I know that if we had left we would have been readmitted either here or at home so that would have been worse!

I woke wondering if he had spiked in the night. I was hoping for big things from the steroids and on asking it appeared that they had lived up to my expectations. No temperature and no desaturation during the night. It was a good start to build the day on. The diahorrea had also stopped, steroids really are amazing. The rash however was still very much there!

GVHD rash
GVHD rash

After his morning bath we applied the cream that we had been prescribed for the rash.

I was pleased that Herbie was keen for breakfast, the excitement over a two weetabix order was short lived though and Herbie started to get cross and decided he wasn’t eating his breakfast.
The doctor arrived, she was going on about his GVHD etc and was beginning to sound like a one woman pity party but then I remembered, she is new to BMT & our case so I took her with a pinch of salt.

Post came earlier than usual,

Thank you Lily and Sam x
Thank you Lily and Sam x

And cards from Diane, Derek etc and Gay.

Thank you Gay & Colin
Thank you Gay & Colin

Helen arrived and I took the opportunity of an hour away from the hospital watching the world go by.
I returned to watch Herb munch some of his lunch before he continued playing games on his ipad and not really talking.

Since our story was in the Oxford Mail we have been inundated with calls and messages from other papers and magazines asking to interview us. Today I was called by the press office for GOSH asking if I was interested in highlighting bone marrow transplants at the hospital!

Catey, who is filming, came to catch up and interview me. Then it was just a long afternoon spent sitting doing loom bands and playing the ipad.

Rehka came in to check I knew about a liver biopsy which I didn’t! A few moments of panic…why , what’s going on etc. I tried to call Dan as I felt quite upset. Rehka was shocked as she said Doctor said they would tell me! Turned out it was a mistake! The doctor told Rehka the wrong name! Big sigh of relief all round.
He enjoyed doing blood pressure for student nurse , Nicola,

Playing nurses
Playing nurses

Herb got an appetite on him from about 7.30pm. He chatted and played his ipad and finally crashed out around 10.20pm.

Keep those fingers crossed for another good day…..


HB 85
WCC 4.39
Neutrophils 3.51
Lymphocytes 0.22
Platelets 48 (drum roll please , he made some of his own!)
Urea 4.3
Creatinine 37

CRP >270

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