It all started with a trip to PMH on Friday morning to see his speech therapist, occupational therapist and dietician.  We were concerned about Ethan as he has been quite upset, tired and anxious lately.  After much deliberation, we all agreed that the best thing we could do for Ethan at the moment is to give him a break from as much medical treatment as we can, and just let him be a little boy for a few weeks.  As his OT so aptly put it “rather than doing, just being”.  He’s gone through so much since the start of the year, he needs to have a little time to enjoy the world around him.

So we were encouraged to let Ethan partake in whatever activities he wanted to (within reason!) and to read his signals – if he enjoys something, let him do it, if he doesn’t, stop and do something else.

Saturday was a trip to the Royal Show with his daddy and Aunty Melanie.  Sunday was a trip to Silver Sands to see his grandparents and play on the beach.  Monday was a trip to Champion Lakes to go paddling and wading with his other grandparents.  Ethan is a big fan of water sports…so that’s why so much water was involved!

As you can see from the photos below, Ethan had a fantastic long weekend and we are so happy to share these fun activities with him.

In terms of Ethan’s treatment, the next step is for another MRI of his brain and spine in a few weeks to see what is happening. There was no tumour visible when he had his last MRI back in April (after the chemotherapy) so, all being well, this MRI will also show no visible tumour. Of course, we are incredibly nervous about the scan…but we are also optimistic for a good result. It was a miracle when the last scan showed that the 7mm of tumour that had remained post-surgery had melted away with the chemotherapy, so we know amazing results are possible. Fingers crossed!

In terms of Ethan’s rehabilitation, the main areas we are focusing on are speech therapy (which includes eating), occupational therapy and physiotherapy. Ethan had a video fluoroscopy the other week, which is a test to see how his swallow mechanism is functioning. It involves putting barium in some soft food and then getting him to swallow it under X-ray, so it can be filmed going down.

Apart from a few food tastes, Ethan hasn’t eaten anything since before his surgery in January. And he has learnt not to put anything in his mouth. So it was actually very hard to convince him to eat something so the test could be done. Luckily, at the last minute he decided to try some custard and this could be mixed easily with barium so his swallow mechanism could be assessed.

The results of the video fluoroscopy showed that Ethan does have a swallow mechanism which is compromised by the damage to his cranial nerves. It is not that there is something wrong with his throat as such – but rather his brain and nerves have been damaged so that his brain isn’t able to properly control the food and stop it from entering his lungs. Food sort of hovers in the area in his throat between the entrance to his lungs and stomach, and then after a couple of swallows heads down to his stomach. Assuming all goes well.

Thankfully, the results of the video fluoroscopy showed enough promise that Ethan is now allowed to try certain foods in controlled situations with the aim being that hopefully the nerves will continue to heal and with practice, he will be able to handle more and more foods. The current regime is up to 10 teaspoons of purée twice a day. And some water in a sippy cup. All given to him very slowly, so it doesn’t accidentally overwhelm him and end up in his lungs (which is a one way ticket to an inpatient stay at PMH).

Initially, Ethan was enjoying having fruit purée for breakfast, and savoury purée for dinner. And he was trying a few sips of water. But now he is barely tasting anything, and we’re not sure why…he’s off the steroids so maybe he isn’t craving food like he was? It’s all very confusing. But we will sort it out with his speech therapist and just keep on trying. Apparently the process of reintroducing food takes time, patience and a little bit of luck…