Day +46

Hi Guys, I'll be brief. It is one o'clock in the morning and I am very tired. Jesse is awake but quiet. We had a hard day...it all started quite normally...Jesse calling "Wake up Mum, it's seven o'clock!" and "When can I have some rice krispies?". We did breakfast, had baths, got dressed and were easily ready for ward round and lesson, when Jesse threw up (or up-chucked as they say in Canada) his rice cake and then some bile. I was very disappointed as I had already talked to the doctor about his weight loss how I felt that he was ready for more food. Ten minutes later Jesse's teacher Louise arrived and Jesse fell asleep!

Am so tired I'll do a synopsis of the rest of the day and fill in tomorrow...

Ran round to Weston House (100yds over the road and up 3 flights) to do washing...machine full, other broken...saw red, complained to PALS that there is only one machine for the whole of GOSH and the patients hotel...let off steam...he said he agreed it was appalling (pathetic was his word) and would get back to me tomorrow,

then meeting with dietitian who was v pleased with the slightly less poo over the weekend, not worried about vomiting, said he could have chips and pitta and larger portions and start a milk feed overnight through his gastrostomy at 5ml/hr. v pleased as beginning of weaning him off IV feeding and so a little closer to home,

J woke 2 hrs later very hot, temp 38.8, with very red hands,

IV anti-biotics started, blood cultures taken,

temp goes down steadily as do hands.

I wonder if the GCSF yesterday overstimulated the new marrow (it makes it produce extra white cells) and because Jesse is on a half dose of steroids since Friday it may have kicked off GVHD, if not could be an infection due to low neutrophis...anti-biotics give Jesse diarrhea...it feels like we are going round in circles,
then good afternoon, no temp, no vomit, not too much poo, chips and pitta,

worked on tricky train puzzle Venetia and John brought to us last week (thank you again!)

then bed for J
and now bed for me too,
C