A bit of a scare…

So earlier this month we had another MRI done on little Mr and like usual it was a very long day. Into the Michael Rice Centre early for a quick port flush then over to DOSA for admission then the inevitable wait for his scan to start.

Didn’t know just how long the wait would be though…
After going to DOSA at 11 the day was going OK until Alex decided he wanted to “smell the colours” immediately, I knew that it was going to be a while so the diversionary tactics began with limited success. Many cuddles and a lot of sooking about wanting to smell the colours later, I was told that the scan before Alex “had some issues” and we would be delayed a bit further which isn’t a good thing when you have a grumpy little man waiting.

When 2:30 rolled around and we were the last ones bar none in DOSA, I knew the next doctor roaming in would be for us which was a good thing since I was getting very hungry and considering eating some furniture. Through to the Radiology waiting area we went which appeased him at least briefly and from there the day (aside from painfully long) was pretty much a standard afternoon.

  • Dash to the cafe for lunch
  • Do some emails etc
  • Head for the Day Surgery recovery area and wait for the call

He was NOT a happy camper when he woke up, but that’s par for the course. Since his shunt was changed early in the new year, after an MRI his shunt needs to be re-programmed each time he has a scan. Not a big deal really; but when he’s tired, grumpy and generally had a gut-full of the world for the day – that one more person touching him is not easy to negotiate. EVENTUALLY we left the hospital at 6:40pm and headed home.

It was only a couple of days later that I got a phone call saying all was well with the lesions being monitored showing no measurable change. Great news so I was fist pumping and celebrating until… “Oh by the way, there was some mention on the report of highlighting that wasn’t previously showing on scans”.

Oh shit…

Alex’s oncologist then went on to explain that it could be vascular and that until the scan is reviewed in more detail we shouldn’t worry too much. Bit of a *gulp* moment and tried to lock that out of my brain as I was in the Gold Coast for an SES conference for the next 3 days. While busy that was ok, but not a lot of sleep and the constant “What if” moments creeping into my brain (Our friends from MRC will recognise these all too well…) we were called in for a meeting to discuss the results and have a follow up 11 days later.

The upshot is the highlighting IS vascular and there really was nothing to worry about. The lesions are all stable and we’re talking about months down the track versus the weeks and sometimes days from a couple of years ago. Based on the results and a few other factors we’re looking at another scan in March to follow up progress (highly preferable; LACK of progress) with the lesions and after that presuming all is well, we’ll extend the following scan to 6 months and take his port out between the March and September scans.

So it was a bit of a scare, but all is well…
Thanks as always to everyone who continues to send love and support as we have our good and bad days in the continuing journey.
Phil, Jo, Jenny and of course – Alex!