The end of Ethan’s little break

Recently we wrote on this blog about Ethan needing a break from PMH and therapy – as much as possible! Well we are now at the end of the break and looking forward to resuming therapy. He has had so much fun the last few weeks and is definitely the better for it.

Of course, Ethan being Ethan he didn’t avoid PMH altogether during his break. Apart from his MRI, he also managed to vomit up the end of his NG tube early one morning (so he had one end hanging out of his mouth, the other still down his nose – a little scary until we pulled it out) and he also had a check up this week. We had the check up because he’s been vomiting a bit lately in the mornings and that is always a worry for a child with a shunt, because one of the symptoms of a shunt not working properly is vomiting upon waking (due to increased pressure on the brain – hydrocephalus).

Thankfully Ethan’s vomiting seems to be more likely due to problems with his tummy tolerating his feeds, and the doctors were confident there is nothing neurological going on at this stage. Still, his next MRI has been moved forward from January to December, just to be on the safe side. And we know to keep an eye on him and go straight in if we have any concerns.

Ethan’s wonderful PMH speech therapist and occupational therapist came to our place yesterday for a home visit – or as I called it (in my worst David Attenborough voice) “to observe Ethan in his natural habitat”. It was lovely to see them both and discuss Ethan’s progress. Our next steps include (and there are many!) modifying Ethan’s feeding schedule to support the reintroduction of solids, doing more intensive speech therapy on his communication skills and getting him prepared for pre-kindy next year. So, like always, there is always something to work on and to help Ethan with.

We would love for Ethan to learn to eat and drink again so he doesn’t need his NG tube – but realistically that might be more of a long term goal than a short term one. Still, tolddlers are notorious for surprising everyone and Ethan is no different!

WIBWA sundowner

Just a short follow-up from my previous post to remind you all that the Women in Business WA sundowner at the Telethon Institute for Child Health Research will be held between 5.45pm to 7.45pm on Thursday, 25 October 2012.

Importantly, $10.00 from every ticket sold to this event will go to the Scholarship!

You can download the flyer here.

*** Our apologies – this event has been postponed until 20 February 2013 (we updated Ethan’s Facebook page with this date but overlooked this update). ***

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.