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.

Ethan’s annual fundraising night 2014!

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The big night is rapidly approaching!

Please join us for Ethan’s big annual fundraising night for 2014. This year we are offering tours of the brain cancer laboratory, so you can see where your donations are going. Take the opportunity to meet Dr Sasha Rogers, this year’s scholarship recipient. We will also be holding an auction and raffle to raise funds for the scholarship.

If you would like to join us, please RSVP to us (Shannon 0403 339 178 or shannon@ethandaviesscholarship.com.au).

We look forward to seeing you on the night!

Being Ethan

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Ethan ate most of a paddle pop today!

A small achievement to most but in Ethan’s world, a big step.

Ethan has been having a tough time lately. Kindy has been a big transition. It’s definitely the best form of therapy for him and incredibly beneficial in so many ways…but that doesn’t make it easy on him!

Ethan has now been formally diagnosed with autism (or in correct terms, Autism Spectrum Disorder). This diagnosis is not related to the brain cancer. Although to those of us who know Ethan well, it is no real surprise as he exhibited autistic tendencies even before his tumour was detected.

I wanted to let you all know about Ethan’s autism diagnosis because it is a part of Ethan and explains much of his anxiety and confusing behaviour in social settings. It is very difficult for Ethan to face the world – and for an autistic child to have also suffered the trauma of childhood brain cancer is unimaginable. Ethan has been forcibly subjected to treatments that we, as adults, struggle to contend with but always with the sole objective of doing what we needed to do to give him the best shot at life.

I can’t begin to imagine how Ethan must view his world in light of everything he has been through. But I do know that he needs endless love, support and compassion as he continues his kindy journey and begins some additional therapy to address his autism.

Thank you to everyone who has supported Ethan to date and to those who go to extra special lengths to make sure Ethan is included, even on his bad days. We really do appreciate it.

We take each day as it comes and we hope that for every day Ethan is cancer free, we can help him in the best way we can to live life to the fullest, however that may be 🙂

Ethan’s swimming

Swimming is a big part of Ethan’s life. He first started swimming classes with me when he was 5 months old…but he had to take a year off when he was diagnosed.

Ethan started swimming classes again at the start of last year. He spent the year building his skills and confidence in the parent and baby classes.

Today he had his first “independent” (no parent in the pool with him) class. He did amazingly well – he was obedient (for the most part lol!) and participated to the best of his ability. It would be so easy to underestimate him…when he is actually capable of a great deal more!

Good on you buddy…you did us proud!

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Perth Heat tickets

We are incredibly excited about our partnership with the Perth Heat to raise funds for the scholarship! Please come and share Ethan’s special game with us. We would love to see lots of families, couples and young people come and enjoy a great night out. Baseball is fast paced, fun for all age groups and the perfect way to relax on a warm summer night.

To purchase tickets, please contact us via Ethan’s Facebook page or email christie-lee@ethandaviesscholarship.com.au or shannon@ethandaviesscholarship.com.au.

Our aim is to sell at least 1000 tickets! So please spread the word…and if you can help us by selling tickets, please let us know 🙂

Ethan’s big fundraising event!

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Ethan supporters, please come along to Ethan’s big fundraising event for this year! All you have to do is RSVP to Ashlie via the details above to secure your place. We will be holding a raffle and auction on the night to raise funds for the scholarship. Please share this invite with your friends and family.

Sneak peeks of the auction and raffle items are being posted to Ethan’s Facebook page.

We hope to see you there…every little bit counts 🙂

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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Ethan’s food journey

As we have talked about on this blog before, Ethan has been unable to eat or drink properly since his surgery back in January last year. He has had a few failed attempts to try food, but has always been too unwell to get very far. We know from his video fluoroscopy last year that he is only safe to try swallowing puréed food, anything else might end up in his lungs (hello trip to PMH, not good!) so we need to be careful.

Now that Ethan is feeling better than at any stage over the last year, we can start trying to teach him to eat again…so today is day 1 of Ethan’s food journey! We will be providing updates and photos via Ethan’s Facebook page (see Ethan Davies Scholarship for Brain Cancer Research on Facebook). We hope you enjoy following his progress and we really, really, really look forward to seeing him enjoy his food once again.

One year on…

Today marks the first anniversary of Ethan’s diagnosis.

There are many things I could write about this – how scared we were, the mountains of tears we shed, how devastating it was to watch him being taken off for emergency surgery within only a couple of hours of us finding out our “healthy” child was no longer that. But I could go on forever, and it wouldn’t be a very fun read!

Instead I’ll tell you what I’m thankful for today, one year on.

I’m thankful that Ethan is still with us – happy, with no visible tumour, and able to enjoy being a toddler again. He’s not unscarred, and he has obstacles to overcome, but none of us are perfect so he’s not alone.

I’m thankful for the care he has received at PMH, and in Melbourne at Peter McCallum. He has received wonderful care from some of the best surgeons and doctors around. People we admire and respect, and whose words and good judgement have led us through a very murky time. Most of all, professionals who listen to us as parents and who take the time to make our decisions a little easier so we can sleep at night.

I’m thankful for the nurses and staff in Wards 5A (neuro, renal, cardio) and 3B (oncology) at PMH. Many laughs, many tears…but never a dull moment. You guys kept me company through the very long hours by Ethan’s bedside, and looked after him when I wondered if we would ever go home again. And the little things that mean so much…finding me a recliner that actually reclined so I could sleep, bringing me the leftover food from the meals trolley, sharing cake from the tea room. I know Ethan made a big impact on you all too, and I know many of you shared our tears and then our joy when he started to recover again.

Lastly, I’m thankful for my husband, family and friends. Shannon has stood by me and Ethan and been solid as a rock. He has shared the late nights and early starts and never ending days at PMH, the nursing care at home, the horrible moments when Ethan has gone into surgery over and over again. I love him even more now than ever before. Our beautiful twin babies who have only just arrived but remind us that life goes on even in the midst of tragedy and good things happen when you least expect them. Our families who love and support us – even moving states when necessary to make sure we are ok! Our friends who have been incredible – listening to us when we have needed to get stuff off our chests, sharing our tears and also making us laugh and feel “normal” again.

As Ethan’s website says – Ethan’s smile is proof that no matter how many clouds are in our sky, the sun is still shining. And we hope that smile can be with us forever 🙂 Congratulstions Ethan on getting through the year little man – we are so proud of you x

December updates

Whew! It has been a crazy time in our house lately…

Those of you who follow Ethan on Facebook will have heard these updates, but we also wanted to share the happy news here.

Firstly, the sausage sizzle fundraiser held by Trudy and Lianne on 2 December at Masters Bibra Lake was a great success, with nearly $1000 raised for the scholarship fund. Thanks so much for all your hard work ladies.

On December 5, we were overjoyed by the safe and happy arrival of our twin daughters and Ethan’s little sisters – Jessica Brooke (2.165kg) and Charlotte Renee (2.78kg). And now babies make 5…we are so excited to welcome our two newest family members.

And last but not least, Ethan’s most recent MRI on December 6 was all clear, no sign of visible tumour. The best news ever!!!

Merry Christmas to our wonderful families, friends and supporters – and all the best for a happy, healthy and safe 2013.