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! 🙂
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.
Whew!! It has been a crazy couple of weeks since the launch of Ethan’s scholarship fund at the Telethon Institute for Child Health Research.
Shannon and I do apologise for not updating this sooner, as you can imagine it has been a whirlwind since the launch and we are still catching up. But we will do our best to get all our updates on here ASAP…
First things first – how’s Ethan you ask? Well he had his 6 week post-radiation MRI scan today. The scan is of his whole brain and spine, to see if any of the cancer has returned since his last MRI in April. We are keeping everything crossed, touching wood, avoiding mirrors and black cats and ladders etc that there is no sign of it. We just want the cancer to stay away so we can spend time on his rehab therapy and get him back to enjoying his childhood with his toddler friends.
I have a bunch of links and lots of exciting things to share about the launch…but as Ethan comes first and needs me right now, I’ll be back soon…please stay tuned…