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.

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.

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.