Phew, breathe out (a bit)

So after a week and a half of hell following being told that “we may have a problem here, if we do we’re in a lot of trouble” we’ve had another update; it’s not that bad. While we’re not out of the woods (and won’t be for some time) the outlook is much better than it was a week and a half ago.

The picture we were given was not pretty at all with a short list of shitty options.

One option was a further surgery, but as Dr Molloy so eloquently phrased it “The risk is much higher than the potential reward with that surgery, we’d be operating in and near the area of the brain that controls motor function with no promise of cure”.

A second was radiation therapy, not really an option because of the huge risks associated with radiating a child’s brain of Alex’s age. Basically, there is a very real risk of mental impairment long term. It’s not really an option, so that’s a no.

The likelihood was that we’d have to travel to Sydney for 1 week per month for Alex to have further chemotherapy entailing stem cell recovery (really not a fun process for anyone involved), the recovered stem cells would need to be genetically modified to handle higher doses of chemo and then give him a huge dose of chemo; even higher doses than he previously had. Another pretty undesirable option.

So after a week and a half of hell, feeling physically ill and wondering what the hell we were going to do we got told basically “it’s not that bad”. The radiology team (doing their job, NB. I hold no malice towards them) compared back several MRI scans to ensure that there was no change in the lesions that were note worth. They got back to the July 2013 MRI and found “uh oh, we may have a problem here” but what they didn’t know at the time was that Alex had only finished chemo a few days before that MRI which meant that it was still in his system doing it’s job.

The abridged version is: Since the chemo has finished doing it’s job, there’s pretty much no change in the lesions that are still present.

Now this isn’t the end of the good news, his hearing isn’t damaged as badly as we believed to be the case. The last few hearing tests that Alex has had, he had a fair amount of wax build up in his ears. Anyone who’s got gunky/waxy ears knows that it does dull your hearing fairly significantly. The damage is around 20% less severe than initially thought which is nothing short of fantastic news.


When you add this to the already amazing news that Alex is doing very well with his walking cane, everything’s coming up great at the moment. I’m so proud of the way that Alex has handled everything that has been thrown at him over the last 18 months or so now. He’s a trooper, a champion and still remains at the top of my list as my little hero!

A little repetitive I know, but thank you all for your love and support. Jo and I wouldn’t be faring as well as we are through the last year and a bit without all the messages of love and support that we’ve had from so many people.


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