TICHR news

The Telethon Institute for Child Health Research‘s eNews for September 2012 includes a feature on Ethan and the Scholarship. You can download it here.

Also, Women in Business WA are continuing their generous support of the Scholarship with a sundowner to be held at the Institute on 25 October 2012. The guest speakers on the night will be Margaret Haydon (Head of Philanthropy at the Institute) and Dr Raelene Endersby (a Senior Research Fellow who works in the Institute’s brain tumour lab with Dr Nick Gottardo). These people are superstars – so don’t miss the opportunity to hear them speak. You can buy tickets to the event online from WIBWA’s website here. Apparently this event is for “Men in Business” too – so no excuses for not attending!

Lead up to the launch – Ethan the newspaper star!

Ethan the newspaper star made his appearance in The West Australian on the day of the launch, Friday 14 September.

For those who missed it, here is a copy kindly provided by The West.

We love the photo – and although Ethan took a bit of prompting, the photographer at The West did a great job of capturing just the right moment! And it was lovely to speak to Cathy O’Leary, the medical editor at The West, about Ethan’s story so far and what it means to us. Cathy did a great job of conveying our thoughts in the article, and it is just fantastic to think how many people have learnt more about this important research now.

And yes there were more tears when I first saw it…

Lead up to the launch – Ethan the film star!

Ethan the film star made his appearance on Today Tonight on Thursday 13 September, the night before the launch.

For those who missed it, you can see the video below.

As you can see, Ethan was filmed both at home and at the Telethon Institute for Child Health Research. He was a bit cranky at the Institute because I had to wake him up from his nap, which is a shame because it was so lovely to catch up with Dr Nick Gottardo and Dr Sharon Lee. He was much happier at home, probably because he woke up from his nap when he was ready!

Graeme Butler and his team were fantastic – we are so glad they were able to support us in getting our message across and capturing some priceless footage of the little guy.

We hope you enjoyed watching it as much as we did. Although there were a few tears…

The launch of a new beginning…

Whew!! It has been a crazy couple of weeks since the launch of Ethan’s scholarship fund at the Telethon Institute for Child Health Research.

Shannon and I do apologise for not updating this sooner, as you can imagine it has been a whirlwind since the launch and we are still catching up. But we will do our best to get all our updates on here ASAP…

First things first – how’s Ethan you ask? Well he had his 6 week post-radiation MRI scan today. The scan is of his whole brain and spine, to see if any of the cancer has returned since his last MRI in April. We are keeping everything crossed, touching wood, avoiding mirrors and black cats and ladders etc that there is no sign of it. We just want the cancer to stay away so we can spend time on his rehab therapy and get him back to enjoying his childhood with his toddler friends.

I have a bunch of links and lots of exciting things to share about the launch…but as Ethan comes first and needs me right now, I’ll be back soon…please stay tuned…

The paper boy…and a quick update

Ethan is also expected to appear in The West Australian newspaper tomorrow (Friday)! We are so excited to see the upcoming media coverage of the launch of the scholarship fund.

You can also see a new link to Ethan’s fundraising page on the Telethon Institute for Child Health Research website.

Ethan is going well at the moment, just quite tired as the effects of the radiation are often felt most around 6 weeks post treatment (Ethan is about 4 weeks post treatment now). His hair is growing brilliantly though…except for the bit where the radiation has burned his skin, but we are hopeful it should eventually regrow there too. And the rest of him still seems to be growing constantly! Today we went and bought some new summer shoes as the ones he had worn earlier in the year were too small when I tried them on him this morning. It is so lovely to see him slowly changing from a toddler into a little boy.

A big audience for a big message

Ethan is to appear on Today Tonight! His story is scheduled for tomorrow (Thursday) night (subject to change).

We hope that hearing about Ethan’s story encourages people to donate to his scholarship fund, which will fund much needed research into brain cancer at the Telethon Institute for Child Health Research. And the best part is – the research is done right here in Perth, WA!

Please click on the link above to Ethan’s scholarship fund if you would like more information or to donate.

The latest on our fave superhero

Well…lots has been happening since we returned from Melbourne on 11 August. We have been attending various appointments at PMH to follow up on the radiation therapy and continue Ethan’s rehabilitation from the effects of the tumour and surgery.

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…