Another boys weekender


It’s always harder to write a blog from a distance. I can really only relay what Dan has told me about their day. I know that boys weekends often consist of a lot of TV. Mainly Adventure Time, Simpsons and Regular Show with a sprinkling of Peppa Pig and today there was also a Simpsons Movie and Curious George movie enjoyed (and I’m sure Daddy managed some football & Glastonbury too).

Then there are a few games, at the moment Moshling Rescue is the app of preference!

Breakfast was still a struggle, he really needs something new to eat so I am hoping that Asda will deliver Peppa Pig porridge pots which might be eaten due to novelty factor but don’t hold your breath!

Dan and Herbie chatted to us all a few times during the day. Herbie was upbeat and happy. The rash seemed pretty similar but the double dose of steroid had only been given this morning for the first time so hopefully by dose two there should be signs of improvement. It’s been itchy and he’s needed steroid creams on the outside and Piriton to try to ease that.

Of course despite the rain Herbie was keen to go out and at least the rain guaranteed a child free park!
The problem with going out though is that you have to go back in! They stayed in the park for a bit and then headed back to see if the lagoon was empty.
Sadly it wasn’t so he had to head back but with a pack of Starburst to placate him!

The bloods were in

HB 86 (once again holding it’s own which is great!)
WCC 6.38 (mmm…it’s a big jump again, hoping it’s all good)
Neutrophils 5.33 (again a big jump!)
Lymphocytes 0.46 (up too!)
Platelets 77 (wow! The platelets are really doing it for themselves now!EXCELLENT)

CRP 47

We need to see another drop in CRP and take a close look at the WCC and neutrophils tomorrow.

We are also hoping to see ciclosporin levels rise rapidly over the weekend which should calm the GVHD. These bloods are taken very early in the morning, around 5am, so before the meds have a chance to take effect.

As you probably can see these BMT meds are such a delicate balancing act.

Dan as always has done superbly at keeping to our strict regime. I spoke to him and Herbie just a few hours ago.
Herbie asked “When are you coming home?”
It broke my heart just a little to hear him refer to Robin Ward as home, but I know I have done it too and I corrected him saying “I am home noodle…when are YOU coming home is the real question!”
It made him giggle but I wish someone could answer that one sooner rather than later.

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