Wednesday, 4 May 2011

No news is still no news ...

Still nothing substantive to report.To be honest I'm somewhat annoyed now, given my impatient disposition. Everybody seems to be in agreement that Adam needs to have these additional scans as soon as possible, and yet the wheels keep turning as slow as ever. We got the letter this week from Nuclear Medicine asking us to complete and return the form listing Adam's current medications - a prerequisite to them being able to book an appointment. I'm sure they are busy, I'm sure resources are stretched, I'm sure there are plenty of other patients that need fitting in, I'm sure Easter and the Royal Wedding has had an impact. And you know what? I DON'T CARE. JUST GET THE SCANS DONE SO WE CAN MOVE FORWARD.

It's looking very likely that we will go down the bone biopsy route. As much as I dislike the whole idea of grinding out a piece of Adam's thigh bone, it's the only way we'll know for sure what we're dealing with. If his cancer is still biologically active, but just smouldering, we are almost certainly going to end up in Philadelphia for six months (at least). It would be the best option under these circumstances, and we would need biopsy results in order for Adam to qualify for the trial anyway. My biggest fear is the PET and Lutetium scans are positive and lead us to biopsy, but the biopsy is inconclusive and we therefore can't proceed with the COG (Children's Oncology Group) trial in America. I don't quite know what we'd do in that case.

The little fella is still generally well; except for the fact that he doesn't attend school and has no hair he's a normal little boy. Though if he gets much taller I am going to have to stop referring to him as 'little'. When we checked a couple of weeks ago he was on the 75th percentile for his height (and 50th for his weight). Quite an achievement for a kid with neuroblastoma whose been subject to one of most intensive treatment regimens that modern medicine has to offer. Generally kids aren't supposed to grow, or put on weight, whilst in active treatment. His bloods are continuing to hold at the same levels. If only his platelets got some upward traction they would be as good as they have been since he started treatment.

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