Today was the first day of being at home with school and work happening around us. I’m so glad that we got back from GOSH with a few days before term ends as I still have things I need to do before Friday!
Herbie woke with an insatiable appetite, it continued throughout the day and I was constantly hearing “mummy, I’m still hunjey (hungry)” Snacks seemed to just roll into one long meal that lasted from breakfast until bed!
Once again he attacked his fluid target from the moment his eyes opened too, so all in all food and drink are all going very very well. This is a big bonus post transplant as most children leave hospital on some milk feeds or TPN, thankfully we have avoided both. The steroids are making him want to eat more too. When he left GOSH on Friday he had final measurements done by the Body Basics study dietician. We had agreed to the study before we were admitted and Herbie had had a range of measurements taken on his first day on Robin Ward. We had kept a diary regarding his food and fluid intake for them and on discharge the measurements were repeated to see what the effect of the BMT had had on his body mass, muscle tone, height, weight etc. Although we didn’t get results of the study they could tell us that he had grown significantly in height & weight!
I had already noticed how tight some of his clothes were (mine too!)
We had a lovely morning, some reading, some x-box for Herbie whilst I sorted the washing and the highlight was our dancing session. In hospital we always played Herbie’s playlist through our Bluetooth speaker each day so it was lovely to do it at home and crank it up nice and loud! Herbie was particularly happy when he realised it was the first Monday in ten weeks without the dreaded NPA!
Auntie Charlie popped in to visit and Dan returned early from work.
The others came back from school and it just seemed like it was before transplant.
The boys enjoyed the Xbox whilst Herbie had his iv’s. Herbie was happy to see community nurse Ele, almost 10 weeks to the day since she waved us off to GOSH.
A few weeks ago I was referred, by GOSH press office, to a news agency who were keen to use our transplant story after seeing it in the local press. Although my interview had taken place a few weeks back the photos couldn’t happen due to the GVHD and Ru’s slapped cheek. Today however a press photographer was coming to take pics at 3.45pm.
When he arrived the boys pretty much ignored him, other than saying hello, and continued on the Xbox. He decided to get some shots of them playing there.
Then he took them out for some shots in the garden and behind the house.
Finally he had what he needed and he took a few of my pics too from our time in GOS.
Herbie was thrilled to have Daddy’s chilli for supper, he’s been going on about it for the past 9 weeks. Not a single scrap was left, if the bowl had had a pattern he’d have licked that off too!
Our lovely day was made perfect by a message from Chloe telling us that her brother, an old friend of Dan’s, was offering us the chance to go, as a family of 6, to Camp Bestival 2015. We had talked about doing it for a couple of years now but illness has got in the way. Next year we aim to celebrate. What a wonderful thing to look forward to. Thanks to Chloe, Kev, Esme & Phoebe and of course Ben and Rob da Bank. You made our day today with your thoughtfulness and generosity x
So another lovely day at home. It’s hard wondering what his blood results are after weeks of always knowing them but hopefully we will get some soon.
Sweet dreams all!