Updated WIBWA video

Just an update on our previous post regarding the kind support from Women in Business WA. Ethan and I met Jennifer Bryant, a director of WIBWA, at PMH on Wednesday while Ethan was in oncology outpatients waiting to see his doctors. You can see the gorgeous footage of Ethan below! A huge thanks to Jennifer for taking the time to meet with us. We urge people to support the WIBWA event on 30 August, part proceeds of which are being donated to the Scholarship.

Please see the Women in Business WA website for more details.

Scholarship update

We passed the $25,000.00 milestone sometime over the last weekend! Thanks to everyone who has donated or fundraised to date. A special mention to Michael Buzzard, who in only a couple of weeks has managed to raise close to $5,000.00. It is hoped that every dollar Michael raises will be matched by his employer, BHP Billiton Iron Ore, through its Employee Matched-Giving Program.

We’d also like to mention the special support recently received from Women in Business WA, who have kindly offered to help raise funds for the Scholarship: see here and here.

Homeward bound

Ethan’s last day of IMRT at Peter Mac was last Friday.

I flew in to Melbourne the Saturday before that to do the baton change with Christie-Lee’s Mum for the last week of treatment. I’m truly thankful for all Maureen’s help and support during the five or so weeks she stayed with Christie-Lee and Ethan in Melbourne – I know it can’t have been an easy task sharing a one-bedroom apartment with my (increasingly) pregnant wife and a toddler for such a long time!

With Christie-Lee (and the twins) getting bigger and bigger, I took over most of the chores for the last week. Even over such a relatively short period, I was exhausted by the end. I can’t imagine how Christie-Lee must have felt after the seven weeks of treatment. She’s done a fantastic job juggling Ethan’s medical needs with her own obstetric appointments and scans.

Ethan’s last day of treatment at Peter Mac went much like every other day. The night before, my mobile alarm woke me up at 1.45am to stop his pump and replace the feed bag with a bag of water. Then I had to make sure I was up again at around 6.20am to stop the pump and give Ethan his meds before the 6.30am cut-off time for fluids. That was no problem with Ethan waking up around 5.00am! Thankfully he was happy to play with his LeapPad in his cot while I dozed a little longer. After meds, it was pretty much the usual routine.

Waiting to go…

One last play in the waiting room.

Going with Dad into treatment.

To celebrate the last day, Christie-Lee bought a plate of cakes (none of which she could eat) to share with the Peter Mac staff in recovery. Having been used to PMH, it was difficult for us at first to come to grips with the way Peter Mac works, but all the staff there have been very supportive. One of the anaesthetic technicians from RCH, Craig, was kind enough to send Christie-Lee a text message later on to wish us luck.

We didn’t know we were going to Peter Mac for Ethan’s treatment until the last minute, and we’d never been to Melbourne before. There were obviously times when we found the experience stressful, and I hope we didn’t appear too demanding. It is hard not to seem needy when you’re not even sure where to buy nappies.

We flew back on Saturday. Ethan was fantastic on the flight home. He just sat between the two of us in his own seat the whole way, including landing and take-off. We were on one of the older Qantas planes, so no entertainment units. Ethan amused himself with his LeapPad and portable DVD player (at $59.00, surely one of the best purchases we ever made considering the use we have got out of it since his diagnosis). Ethan only ever really bothered us when he wanted to swap DVDs, which he selected himself out of a wallet.

Ethan was extremely excited to see our car at Perth Airport. I think he knew as soon as he got in it that he was going home. I noticed that in Melbourne he would veer towards cars the same colour as ours when walking along the street. Maybe he thought that if he got in, they would take him home!

By the time we reached our Freeway turn-off, the toddler excitement emanating from the back of our car was reaching fever pitch. Ethan knows the way home. When we finally got in the door, he spent a lot of time just grinning and doing laps around the house.

We are all very excited to be home again. There are still many obstacles for Ethan to overcome – I would love to see him eating proper food again in the near future – but for now it is good to all be back among our friends and family and hopefully we can return to some degree of normalcy.

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!!

Under his own steam…

Ethan now makes it to treatment under his own steam!

We used to take Ethan to and from treatment at Peter Mac every day in his pram as it’s only a short walk. Yesterday, he had clinic (a check up with Dr Wheeler) and once he was done he decided to leave…and he just walked out. He knew the way! I was following on behind him (I held his hand tightly once we got outside) and Nana was following behind me with his pram and all our gear. It was actually quite funny – very unexpected.

So this morning I asked him if he wanted to walk to the hospital, and he did. He walked all the way there. And once he woke up from his treatment, he decided to walk home – the staff gave him a round of applause and he was grinning. He just doesn’t like any change in routine – the usual hospital exit was blocked and he had to be carried to another exit because he was so upset. But other than that, he did really well.

So proud of him – he only started walking such a short time ago, his progress is amazing.