Being Ethan

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Ethan ate most of a paddle pop today!

A small achievement to most but in Ethan’s world, a big step.

Ethan has been having a tough time lately. Kindy has been a big transition. It’s definitely the best form of therapy for him and incredibly beneficial in so many ways…but that doesn’t make it easy on him!

Ethan has now been formally diagnosed with autism (or in correct terms, Autism Spectrum Disorder). This diagnosis is not related to the brain cancer. Although to those of us who know Ethan well, it is no real surprise as he exhibited autistic tendencies even before his tumour was detected.

I wanted to let you all know about Ethan’s autism diagnosis because it is a part of Ethan and explains much of his anxiety and confusing behaviour in social settings. It is very difficult for Ethan to face the world – and for an autistic child to have also suffered the trauma of childhood brain cancer is unimaginable. Ethan has been forcibly subjected to treatments that we, as adults, struggle to contend with but always with the sole objective of doing what we needed to do to give him the best shot at life.

I can’t begin to imagine how Ethan must view his world in light of everything he has been through. But I do know that he needs endless love, support and compassion as he continues his kindy journey and begins some additional therapy to address his autism.

Thank you to everyone who has supported Ethan to date and to those who go to extra special lengths to make sure Ethan is included, even on his bad days. We really do appreciate it.

We take each day as it comes and we hope that for every day Ethan is cancer free, we can help him in the best way we can to live life to the fullest, however that may be 🙂

Ethan’s food journey

As we have talked about on this blog before, Ethan has been unable to eat or drink properly since his surgery back in January last year. He has had a few failed attempts to try food, but has always been too unwell to get very far. We know from his video fluoroscopy last year that he is only safe to try swallowing puréed food, anything else might end up in his lungs (hello trip to PMH, not good!) so we need to be careful.

Now that Ethan is feeling better than at any stage over the last year, we can start trying to teach him to eat again…so today is day 1 of Ethan’s food journey! We will be providing updates and photos via Ethan’s Facebook page (see Ethan Davies Scholarship for Brain Cancer Research on Facebook). We hope you enjoy following his progress and we really, really, really look forward to seeing him enjoy his food once again.

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…

What’s for dinner?

In Ethan’s case, this question is currently answered with “Nutrini Energy MF”…every day. Nothing like high calorie liquid formula down your tube!

One of the most common questions we are asked when we are out and about with Ethan, and we refuse food or drink for him, is “why can’t he eat or drink”? So Shannon suggested I write a post about how it all works.

One of the risks of the surgery to resect the tumour was damage to the nerves that control swallowing. Evidently swallowing is a very delicate process and the tumour was interfering with those nerves. We knew this pre-surgery so it was no surprise when Ethan came out of surgery and the doctors told us that he had, at least temporarily, lost the ability to swallow and he would need to have all his nutrition through a nasogastric tube.

What was surprising to us was the extent to which he was affected – he couldn’t even swallow his own saliva so it would drain onto the hospital bed or pool in his mouth. But the doctors were confident the nerves would recover and slowly they did. He started to be able to manage his own saliva better and better. During this time all his fluids, food, medications etc were given via the NG tube and he was treated as “Nil orally” – a sign was placed on his cot in the hospital because obviously this is important for everyone to know!

Once Ethan could be placed upright in a specially modified pram provided by PMH, he was able to try some food to see how he swallowed (under the supervision of PMH speech pathologists). At this stage he was still in the neuro ward with the drain in his brain and recovering from the surgery, so he couldn’t move to oncology and start chemo. Initially it was hard to convince him to put anything in his mouth (technically you are supposed to start with a lollipop or something firm in a fresh food feeder so it’s just a taste and they can’t choke). Of course, Ethan wanted none of that, he wanted real food…and I made the mistake of handing him a potato stix thinking he might give it a little suck…and he snatched it and gobbled it right up and took a few years off the life of me, the speech pathologist and the nurse supervising him! Once we recovered we did laugh about it…

For about a week or two, Ethan was going reasonably well and was having fruit purées and mashed banana, but then we moved down to oncology and he started chemo and the nausea made him vomit. All of which meant he ended up aspirating and the end result…no more food orally for Ethan.

“Aspiration events”, as we called them, became our next headache. Because Ethan’s swallow doesn’t work properly, he struggles to stop foreign objects (his vomit etc) from entering his lungs. And when he “aspirates” something into his lungs, it causes him to struggle to breathe and he needs a lot of care – oxygen, a sats monitor to check his oxygen levels, steroids to help his lungs recover, chest physio, antibiotics to protect his lungs…it’s a drama. And it means time in hospital. And if it gets really really bad, a trip to PICU (have avoided that so far!).

To try and prevent aspiration events caused by vomiting, the oncology doctors changed Ethan’s NG tube to an NJ tube (a nasojejunal tube). This tube is still in place currently. It is a tube that goes down his nose but instead of going just to his stomach, it continues on until it reaches his intestines. It means that his food goes straight to his intestines and it is much harder for him to vomit it up (he just vomits his stomach juices instead). It has been an absolute saviour.

The last aspiration event Ethan had was at Easter, right before he finished chemo. He aspirated on his own saliva and stomach juices in the car on the way to PMH (pretty unlucky and hasn’t happened since). By the time we got to PMH he wasn’t well, but we didn’t realise how bad he was until one of his doctors who knows him well checked his sats and he was down to less than 80% oxygen (normal is 100% or close). He spent nearly a week in PMH recovering, but since then, so far so good. And luckily, the Easter bunny does come to the hospital.

Once Ethan finishes his radiation therapy, he can start to try eating again. We decided, in consultation with Ethan’s speech pathologist and oncology doctors, not to try food while he was undergoing the radiation therapy because we didn’t want to risk another aspiration event that would interfere with the therapy. So, while it’s been a long wait, we are excited to start him eating again. I’ll just go easy with the potato stix!!