Thursday, 25 October 2012

A little ...

Adam has been a little brighter today. He's smiled and laughed for the first time in two or three days, and has even delivered a few trademark putdowns - almost exclusively in my direction. "Stop trying to be a food critic" he said after I made some comment about my lunch. This morning it was nice to see him having a chat with his little mate Ryan, when for a while he's shown little interest in engaging with anybody or anything.

He's eaten a little breakfast, and a little lunch. And when I say a little I mean a little, but a little is better than nothing. We've started given him liquid nutrition via a syringe, he doesn't like it but he needs it. Since he was first admitted 12 days ago he's lost 2.5 kilos … and it shows.

Temperatures have been a little better, although perhaps that's just a case of wishful thinking. They are still up and down though, and this afternoon he spiked at around 39°.

Echocardiogram didn't show up anything abnormal (and Adam's heart function is still reasonably good). Ultrasound showed enlarged lymph nodes, as did chest CT. These are areas where we know Adam has disease. Nothing else was detected as being suspicious for either disease or fungal infection.

We took Adam to the Marsden just after midday. The ambulance arrived ten minutes after it was called, when normally it takes between one and two hours. We weren't even close to being ready, so got agreement to take him ourselves by car instead. That's what Adam himself had asked us to do in the first place anyway. This morning he was really unhappy at the prospect of sharing a room. As it turns out we're in the MIBG suite at the end of the ward, and Adam has a nice big room all to himself. Not sure how long it will last, these things generally depend on whose need is the greatest.

We've talked about options, and our consultant at the Marsden has emailed our doctor in the US. It remains our intention, and resolve, to get Adam back to the US for further therapy, but it might take a more radical approach to get him there. We don't have the luxury of being able to wait and wait for these fevers to recede … not least because we know they might not.

All-in-all a better day. A little better. A little better so far.


  1. Glad it was a better day and that Adam got a room on his own.

  2. Hang in there, Adam and family! Sending best wishes and much hope from across the ocean...