Off-treatment and being “well”

One of the things that people may not be aware of is just how much ongoing care a child with cancer requires, even when “well” and “off-treatment”. Ethan has complex, ongoing care coordinated through many departments at PMH.

Yesterday Ethan had an appointment in endocrinology, to assess his growth and hormone function. Unfortunately, the radiation that Ethan received to his brain may have damaged his pituitary gland, hypothalamus etc so routine surveillance is conducted to see how his hormone levels are. This means blood tests every 6 months. So far all his blood tests have been clear, and his growth has been good – although it may be starting to slow a bit now.

After his appointment with the endocrinologist, Ethan needed to have a blood test so off we went to get it done. He is such a superstar! It took over an hour of waiting before we got in (which he did with no complaint) and then when we went in he just sat in my lap while I held his arm and other hand. He watched the needle go in and the blood be taken – no crying, no fuss – cool as a cucumber and then took his sticker for Boris!

I must admit that it’s pretty embarrassing when your child handles a blood test better than you do!

Then we had a quick bite of lunch (Ethan refused to eat the hospital custard … it’s possible that the custard upset him more than the blood test), and then the race back to the car before the parking ticket ran out.

Very proud of my little man and hoping for good blood test results.

June update – Ethan in progress

Apologies for our delay in updating this site – we have been updating Ethan’s Facebook page regularly, but we appreciate that not everyone uses Facebook!

We recently returned from our first family holiday, a week stay in Busselton. While it was not exactly a quiet, relaxing holiday (how can it be with three kids 3 and under in tow?!?) it was just what we needed. A break from routine, no work for Shannon and no trips to PMH for me and Ethan. Family time and lots of fun seeing new sights.

Since we got back from our holiday, I have been trying to limit Ethan’s visits to PMH to one day a week. Some weeks we are at the hospital two or three times a week and, apart from the travel being very tiring, it is emotionally draining. Being at the hospital is a constant reminder of Ethan’s cancer, and also the suffering that children with health problems go through every day.

Last week Ethan had speech therapy, which he normally enjoys but not this time. He was very tired and out of sorts. We are trying to help him with his play skills and communication (as he only has a couple of words), but it’s not an easy process with a very determined and headstrong 3 year old 🙂 The very qualities which give him the strength to fight cancer are also the perfect ingredients for temper tantrums!! Never mind – we get there step by step, day by day.

This Thursday 6 June is Ethan’s scan day. He has an MRI every 3 months to look for any signs of the tumour returning. The days leading up to his scans are always a bit nerve racking, and the days after waiting for the results are also a bit uncomfortable – often referred to as “scanxiety” – it’s a very odd mix of emotions.

Last but not least…please save the date Friday 30 August for Ethan! We will be holding his annual fundraiser at the Telethon Institute for Child Health Research that evening…more details to follow. Stay tuned! 🙂

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The best news…and a moment to reflect

Last week, Ethan had his first MRI scan post-radiation therapy to check on his brain and spine. There was no tumour visible on his last MRI scan back in April (prior to starting radiation therapy), but of course you never know if or when it may return. Ependymoma has been known to return even 15 years after treatment (although the risk decreases over time).

Shannon, Ethan and I went into PMH yesterday to see Dr Nick Gottardo and oncology liaison nurse Suzanne for the results from the MRI scan last week. Wonderful news – the best news possible – there is no tumour visible in Ethan’s brain or spine. His brain isn’t exactly normal (given the extent of his surgery) but the ventricles are a normal size so this means the shunt is doing its job and keeping the fluid in his brain stable.

Needless to say, we were so relieved. And happy and every other emotion you could imagine, better than winning lotto or in Shannon’s case, a cricket grand final. But then, before it could really soak in, for me it was back to business. I had a page and half of questions and issues to discuss with Dr Nick and Suzanne (thankfully they have the patience of saints!), because Ethan’s situation is so complicated.

When Ethan first fell sick, and for the many weeks after while he was in hospital, I was pretty strong in my view that I wanted the doctors to do anything they could to keep him alive. Many times Shannon and I consented to procedures that involved risk (some more so than others) but I found it hard to talk about long and short term side effects – if it needed to be done to give him a chance to live, then I wanted it done ASAP! Now as we have learnt more about the treatment and time has passed, I have realised that for the doctors, nurses, researchers and everyone involved in trying to treat childhood cancers, while it is primarily about finding “a cure” or keeping the cancer at bay, at the same time the short and long term side effects on such young little bodies cannot be ignored.

I think that Shannon and I have been fortunate in that Ethan’s doctors have been able to use their wisdom and the benefit of their hindsight in treating other children to help guide us along and make informed decisions which have given Ethan the best shot at survival, but also tried to minimise side effects (particularly the long term ones) where at all possible. I think Dr Nick explains it best in his video from the launch (see below) when he talks about how even the children who manage to survive brain cancer are left with serious long term side effects – and this is why the research into improving our available treatments is so critical.

What does this mean for Ethan? First and foremost – we need the cancer to stay away. This is still the absolute number 1 goal, and it means that Ethan will have MRI scans every 3-4 months from now on to monitor his brain and spine and check that it hasn’t returned. His next MRI scan will be in mid-January. The next part of the puzzle is to address the short term and long term effects that the cancer and treatment has had on Ethan. For all our joy yesterday – and believe me we couldn’t be more grateful for the best news in the world! – for Ethan’s sake we now need to help him rehabilitate his disabilities and find a way to enjoy his life as an innocent little boy (although sometimes not so innocent, rather cheeky and crafty…I swear he knows more than he lets on!).

I read a wonderful quote once from a parent of a child with a brain tumour. She said “I hope that cancer does not become your life. For us, it used to be an “elephant in the living room”, and now it’s maybe a “zebra in the kitchen”. There are times when it demands everything you can give, no doubt, but there will be moments when there is time for the rest of your life“. I like to think that’s what Ethan has for the next few months at least – time for the rest of his life.

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.

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 purĂ©es 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!!

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.

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.