“Let’s just get him to 5”

“Let’s just get him to 5.”

That was what Ethan’s doctor said, just after the hospital found his brain tumour. We were new to the world of childhood cancer, and we were asking questions like, “will the chemo/radiation affect Ethan’s ability to have children?” The answer we got was the doctor’s way of adjusting our expectations.

Last Saturday Ethan has exceeded those expectations: it was his 5th birthday. We are so proud of the obstacles he has overcome, and grateful to the many doctors, nurses, therapists, family members and friends who have got Ethan to this point.

If you would like to give Ethan a gift to mark his special day, please consider making a small donation on his behalf to the Scholarship. Just go to the website for Ethan’s Scholarship and click “donate now” in the top right-hand corner. Every little bit counts.

Happy 5th birthday Ethan!

11010289_448439791984784_8025198533940180674_n

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.

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.

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.

Update on Ethan

An update on Ethan for everyone who is interested. Sorry I haven’t been replying to individual messages. Ethan has finished his induction chemotherapy and will start radiation therapy later this month. The results of his most recent MRI scan were positive and at this stage no further operations are required. He has been well enough to receive treatment as an outpatient for a few weeks now; hopefully this can continue as he is enjoying his time at home. We are hopeful he will get strong enough to walk again soon.