Special people in Super Ethan’s journey

Yesterday Ethan and I were lucky enough to catch up with one of the special people who has been a part of Ethan’s cancer journey to date. Dr Aggie Judkins and her gorgeous son Noah came to visit!

Dr Aggie is a Consultant Paediatrician at PMH. Dr Aggie and Registrar Dr Emma Turner are the doctors who found Ethan’s tumour. They are very special people to us because they were the first doctors at PMH who treated Ethan and without their expertise, kindness and dedication we might not have found his tumour when we did. They always believed us when we said something was wrong with Ethan.

Dr Aggie and Dr Emma spent 4 days with Ethan in hospital, doing test after test to try and figure out what was wrong (the tumour was found on day 4). It was a very nervous process for me, I didn’t know what to expect, whether to feel relieved or worried when tests kept coming back clear one after the other!

But Dr Emma gave me some advice that I’ve never forgotten – she said (words to the effect) that “the most common illnesses occur most commonly”…basically that as a doctor, you test for the most common, likely illness based on the symptoms first, and then if that comes back clear, you move onto the next common (or most likely). Seems basic, but it explains why every kid that has a headache in emergency at PMH doesn’t end up in an MRI machine…the likelihood of it being a brain tumour is actually tiny. And the same logic still applies to Ethan, even now – a runny nose is still more likely to be a runny nose rather than anything more serious!

Dr Emma had the very difficult task of ringing me at home just after the tumour had been spotted on the MRI (in fact Ethan was still under the anaesthetic when she called me). Shannon was at PMH with Ethan as I had a rotten cold and was stuck at home so I didn’t infect the other patients. I still remember her very calmly just asking me to come in straight away so Dr Aggie could speak to me. Recently I saw Dr Emma and we spoke about that call, and I thanked her for being so calm and keeping me calm, and she said it was a really hard call for her to make.

Dr Aggie had the even more difficult task of telling Shannon and I about the tumour. Ethan had only just come out of the anaesthetic and we were waiting on the ward with him in the cot beside us. Dr Aggie sat us down, explained what had been found and asked us if we wanted to see a picture (we did). Once she finished with us, she then had to go outside and tell my parents and Shannon’s mum. I am still amazed to this day how she managed to tell us all with such compassion, and yet keep composed and stay strong and keep us in one piece. After that we met with Ethan’s neurosurgeon and within an hour or two he was having emergency surgery to relieve the pressure in his brain.

The reason I wanted to share this part of our story is because I never stopped to think about how Ethan’s diagnosis didn’t just affect us as his parents, or our families, or our friends. The doctors that have to deal with this sort of shock, pain and grief – well I think they are really special people. And we are lucky to have them to take care of our kids.

Dr Aggie also told me something very important that day – she told me that Ethan’s tumour wasn’t caused by anything that we did, or didn’t do. It was just crap. That might not seem like much – but those simple words stopped me from wasting precious energy in the coming weeks and months worrying that I did something wrong that gave him cancer. And I will be forever very grateful for that.

The downhill run…

We are on the downhill run of Ethan’s radiation treatment. We have done 23 treatments, with 10 to go – so 33 in total. This means 10 more days of treatment – since it is done every weekday, Monday to Friday, basically 2 weeks to go!

Ethan is well enough to be an outpatient receiving his treatment, so he doesn’t have to stay in hospital. So every weekday morning we walk next door to Peter Mac (we are staying at hospital apartments next door) just before 8:30am. I buy a hot chocolate on the way in (thank you to my barista friend who has it hot and waiting for me as soon as he sees me each day!) and we head down to Lower Ground 2 where all the radiation therapy (adults and children) is done.

We check in with Anne and Bec at reception, have a chat and check Ethan’s appointment schedule. Then we wait in the children’s waiting room. Ethan used to play on the jungle gym and with the ride on car, but now he has decided he’s too old for all that! He is all business like as he waits in his pram for the anaesthetist. Within minutes an anaesthetist from the Royal Children’s Hospital comes out to see us (kids have

 to have their anaesthetics done by RCH paediatric anaesthetists) and checks that Ethan is all well and ok to go into treatment. Then they give us the nod and either Shannon or Nana (depending who is here) carry Ethan in to the treatment room (I do the recovery bit!).

Apparently Ethan is, once again, very business like in his approach and he likes to administer his own anaesthetic (strawberry is his preferred flavour). He helps hold the mask to his face and breathes in as he drifts off to sleep (Boris the teddy bear also goes to sleep). Then the team take over and administer the radiation via the machine (very big and scary looking!). We then wait in the adults waiting room until he comes through to recovery.

Once Ethan is close to waking, the recovery nurse collects me and I tickle his tummy until he wakes up. He usually likes to have a big stretch, then wants to get into his pram ASAP so he can leave! And three times a week he has music therapy afterwards – he likes this very much.

The whole process every day is painless, stress free and Ethan doesn’t seem too bothered by it all. In fact, he tries to convince us to go in on Saturdays (I think he is a creature of habit)! The best way to describe it is like groundhog day…it’s like living the same day over and over again. But not in a bad way – for every day brings us closer to the end and going back to Perth!!

Ethan in the waiting room at Peter Mac

Ethan in the waiting room at Peter Mac.

Radiation therapy

Apologies for the delay in posting!

Ethan is currently receiving radiation therapy treatment in Melbourne, at the Peter MacCallum Cancer Institute. Ethan was transferred to Peter Mac from Perth to enable him to receive IMRT (Intensity Modulated Radiation Therapy), which is not available in Perth. IMRT offers Ethan a more targeted radiation treatment, with reduced long term side effects (a very simple explanation!).

We would sincerely like to thank the wonderful doctors and staff at Princess Margaret Hospital, Sir Charles Gairdner Hospital, The Royal Children’s Hospital in Melbourne and Peter Mac. It takes an incredible team effort to make things like this possible. And in particular, a huge thank you to Ethan’s Radiation Oncologists Dr Mandy Taylor (SCGH) and Dr Greg Wheeler (Peter Mac). We can’t thank you all enough.