Alex the Magician

After the spectacular results of Alex’s last MRI I was a bit nervous for his next one. Worried that the temperature he spiked after the last one wasn’t some random virus exposure and was in fact somehow related to his treatment. Worried that the amazing results from last time wouldn’t be repeated. Worried that somehow the news would not be good.

You never really loose that fear of getting results. In the months separating the scans you can pretend that everything is normal and fine. It’s when you have to listen to empirical evidence that there is something inside your child that shouldn’t be there that you have to confront the unsettling reality that there really is a battle being fought. Even if you’re winning it’s a hard thing to do.

We had an MRI scheduled for mid August, but Alex’s oncologist Dr Beck was trying to get it brought forward as she wanted a 3 month gap between scans rather than 4 month gap. By the start of July we hadn’t heard anything so I assumed since we were so close to originally scheduled date that there weren’t any spots and we would just be going in August.
Then I received a phone call on Wednesday the 14th of July from the lovely Roberto from the imaging admin team. A spot on the MRI list for Friday was possibly going to be available (unfortunately due to someone else’s illness) could we make it? I said we could, the spot was confirmed available on Thursday and we headed in for an MRI on Friday. At the time I was a little surprised that they had bothered – Alex’s original MRI date was only a few weeks off, it wasn’t that long to wait. In hindsight and with the knowledge of the events that have occurred since, I’m glad we were moved forward – had Alex’s MRI still been scheduled for the original date it would no doubt have been cancelled due to the covid outbreak and and subsequent lockdown.

Friday was an 11am admission to DOSA so we were faced with the tablet timing problem again. This time I tried to think ahead though and called the wonderful oncology pharmacist Hayley to ask if it would be appropriate to bring his tablet time forwards slightly. I thought if he took his tablet just before having the scan, the fasting time would be over by the time the scan was done, and he could eat and leave recovery after waking up. Hayley confirmed this was ok, and for the first time in a long time a plan actually went to plan!
As some of you may already know Alex has a particular routine when it comes to anaesthesia, he puts the mask on, lists the colours he can smell then we sing the rainbow song. This time one of the nurses raised the bar somewhat as, while we all gathered around to sing, she found a youtube clip of the song to play, so Alex not only had 6 people singing, they also had backing music to perform to.

The scan took the usual 90 minutes, and his progress through from unconscious, to conscious, to grumpy bridge troll, to recognisable human took the usual amount of time. He had his shunt reprogrammed, had his usual lunch of savoury bites and other snacks, and this time we left the hospital with no temperature spikes or car issues.
Alex’s night didn’t stop there however, since the scan was at short notice we had made plans for the evening to visit Phil’s parents for a family dinner, Phil had dropped Jenny off there prior to coming to get us and when we arrived Jenny and her 2 cousins were on Grandma’s Wii playing bowling. We convinced Alex to have a go, and after a bit of a rough start learning how to coordinate his movements with button pushes, he had an absolute blast. His enjoyment largely stemmed from the discovery that he was utterly amazing at Wii bowling. You might be tempted to think that his opponent in the bowling game was taking it easy, letting him win, and that may have been true of the first game or two, but when he started beating everyone he was up against, the metaphorical gloves came off. He played game after game against 4 other, fully sighted people and ended up winning almost all of them, his best score a 167.

As far as MRI days go, not a bad one.

Then the covid outbreak hit SA, and a lockdown was initiated. Hospitals at this point obviously had more pressing matters to deal with than sending out test results, and since Phil was at one of the sites in a listed exposure time (which was subsequently revised and it turned out he wasn’t, but we had a tense few days) we had a few other things on our minds too.

Things have slowly gone back to normal and it was last week that we realised we hadn’t heard from Dr Beck, so on Friday (the 6th of August) we rang through to the Michael Rice Center. We left a message for a call back and 6.30pm that night my phone rang (never let it be said doctors don’t work hard!). Dr Beck gave us the amazing news that Alex was a magician – of the lesions that were under observation, two couldn’t be seen at all on this scan, and the others had all shrunk.

Best News Ever.

Alex is tolerating this treatment really well, he’s experiencing minimal side effects and it’s clearly working well, so despite the lockdown and restrictions we are in a really good place right now.

In slightly sadder news, because of the lockdown and higher level restrictions Jenny’s musical theatre performance had to be cancelled. She was obviously pretty disappointed, but we are hopeful that when social distancing restrictions ease they might be able to reschedule it.

Alex and his second slice of cake at Auntie Amy’s birthday party