Wednesday, 15 September 2010


We've had a mixed time of it post-surgery. If ever there was a case of two steps forward and one step back this was it. Although at times it's seemed more like one forward and two back. We got Adam home on the Sunday after surgery, just 4 days after the operation to remove his tumour. Monday and Tuesday morning continued to see an improvement in him, but then in the afternoon and through into Wednesday he just grew more lethargic and tired, refused food, drank very little and generally regressed back to being a very poorly boy.

Having taken him to hospital to have him checked out his demeanour then improved and we made a late decision to get away for the weekend. He gained a spring in his step, spent more time walking and exercising, his appetite started to return and we thought we were back on the right road. And then Tuesday happened.

Having had a good night's sleep he woke up and went into Jake's room (as per his usual routine). We then heard Jake shouting downstairs "Adam's being sick". And so he was. Head stuck down the toilet vomiting what looked like a mixture of bile and green phlegm (I'm sure you're thanking me for sharing these finer details with you). Hoping it was just a result of a build up of said phlegm during his sleep I proceeded to continue with Adam's daily routine which involves a glass of wheatgerm extract first thing in the morning taken on an empty stomach. I have never witnessed anything like it before in my life. He drank the contents no problem, but literally as soon as it hit his stomach it made a complete about turn and came straight back up again. It was like wheatgerm yo-yo. Down... and up. All of it. In one continuous motion.

All of the progress made over the weekend undone (again). No eating, very little drinking, the odd vomit. So frustrating and quite difficult to deal with. From being a healthy (looking) little boy pre-surgery Adam is now stick thin once more, all skin and bones and looking anything but healthy. He's lost several kilos in weight and it takes a conscious effort not to become disheartened by it. 'We've put all the weight back on before and we can put it all back on again this time round' I keep telling myself. But I know that's not going to happen anytime soon for next up is MIBG therapy and the dreaded high-dose chemotherapy and stem cell transplant. There'll be no long-term weight gain until this phase of Adam's treatment is well and truly over that's for sure.

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