It was just over four weeks ago that I woke up in hospital for the first time in my life. I was perfectly healthy but lying in a bed next to me was the reason we were there – our 5 year old son Ethan. It was in the ward for kids with cancer.

We’d known for several weeks that Ethan had been experiencing discomfort in his stomach. But with many in his school class sick with gastric bugs we thought that he may have caught something. Then we noticed that it became worse when he ate bread, so we thought he may have had a gluten intolerance. As it turns out we were way off!

I come from a very healthy family (I don’t want to jinx myself). When you’re used to being healthy, if you do get sick you get used to getting better quickly and getting on with life. I think I only missed five days of school in total and that was when I had the chicken pox when I was 10.

With that background it wasn’t even any consideration that I had entertained that Ethan could be seriously unwell. The first sign that I had that something really wasn’t right was when I put my hand on his shoulder and felt his bones. Ethan has always been a big kid – not fat, just solid. He’s only a fraction shorter than his 7 year old brother and has weighed practically the same as him for several years. But as I touched his shoulder it was instantly obviously he’d lost a lot of weight. And it had happened that quickly that we hadn’t even noticed.

The sudden weight loss combined with an increasingly hard stomach led to Jerusha taking him to the doctor that day. The doctor that we saw that day was the owner of the fairly large medical practice we go to. He’s always so busy and booked out for weeks in advance that we haven’t seen him for several years and we’ve always had other doctors. As a last minute booking we were fortunate to see any doctor, but it was incredible that we got to see the most experienced doctor in the practice. Even more miraculous was that it was his day off and he wasn’t even meant to be working.

He was instantly concerned when he felt Ethan’s stomach and we reported the weight loss. This was late on a Friday afternoon, but he wanted to have scans immediately. He was very upfront and honest with Jerusha and said that he could be very wrong and that he hoped he was wrong, but he was concerned he had a swollen spleen which was a result of leukemia.

I had been at work that day working on renovating our new office we were due to move into the following week. Jerusha called and told me what the doctor had said and that they were going to the imaging centre to have scans.

From that moment a lot of simplicity and clarity entered our lives. One thing became important above all else and that was helping Ethan to become well again. We didn’t know what the diagnosis was but we knew it was much more serious than either of us had ever suspected. All of the clutter of life that seemed important faded into insignificance pretty quickly. We just needed to keep our family strong and together.

Several hours later we received the results of a preliminary scan and had some further discussions with the doctor and found out that he didn’t have leukemia. Instead he had a massive tumour in his kidney area with dimensions of 19cm x 15cm x 12cm. Or for our metrically challenged friends that’s about 7.5 inches x 5.9 inches x 4.7 inches

When you measure that out you see how big it actually is. And in a 5 year old’s stomach and chest area it takes up a lot of room! It’s why his stomach was so hard to touch and no doubt why he felt full very quickly and experienced pain when he ate. Everything was being squished by the tumour. That night at the doctor’s we could see a slight protrusion on his side where the tumour was pushing out.

We spent the next week and a half in hospital. Ethan had more scans and we discovered that what he has is the rare Wilms Tumour, something that is newly diagnosed in about 40 children in Australia each year and 460 in the USA. So that makes him pretty special. What makes him super, super special is that he has Bilateral Wilms Tumour – meaning that there are tumours in each kidney. This is found in less than 5% of those children with Wilms Tumour, so there are usually just a couple of these cases diagnosed in Australia each year.

The treatment plan changed significantly when they found out that he had the small tumour in the right kidney as well as the very large one in the left kidney. The CT scan also showed some spots in the lungs. I’m all for being positive and full of faith and hope, so when the doctors start talking about Stage 5 cancer, that’s a label I was happy to leave behind and never mention again. The surgeon told us there was a good prognosis for his recovery, so that was enough for me. And I know that chance and odds don’t come into this at all, so I’d rather not waste time thinking about that. If it’s God’s will that Ethan is made better then it will happen.

The condition he has is so statistically unlikely, that perhaps counter intuitively we feel that it wasn’t just random. For some higher reason Ethan was meant to go through this and our family was meant to go through this with him. Coming to that realisation very early on helped us skip the stage of asking “why him? why us?” We’ve also seen so many family and friends from church and school that are right there with us the whole way. And we’re extremely grateful for that. But more on all that another time.

Ethan’s treatment started almost immediately with chemotherapy. If it was a Wilms Tumour in one kidney they would have operated right away and removed the tumour and the kidney all at once and left him functioning on one kidney which is fine. But with Bilateral the treatment plan is to use chemotherapy to try and shrink the tumours before surgery in order to preserve as much kidney tissue as possible.

The initial course of chemotherapy is for 6 weeks after which time they do another CT scan to evaluate the progress. After which the best scenarios are surgery or keep going with the chemo to shrink the tumours more.

Ethan has now had 4 weeks of chemotherapy. We go into the pediatric oncology clinic every Thursday for his treatment. We come out of there every week so grateful for the situation we are in. It’s a heart wrenching place and you don’t have to go far to meet people whose situation is much worse than your own. The daily first world problems of life are put perfectly in perspective.

The pediatric oncology clinic is also place of great hope as you see kids who have recovered coming in for checkups. The road to be traveled is not easy but many children come out of it stronger forever knowing that they can do something incredibly hard – they can beat cancer.

I hope that is how Ethan will look  at it one day. That God has spared his life to do much good in the world and any time in his life he is faced with a difficult situation or the fear to do less than what he dreams might be possible, that he says to himself “I can do this – I have beaten cancer. I can do anything.”

In terms of his progress during the chemotherapy it has been nothing short of miraculous to us. There were some difficult days following the first two weeks of treatment where I wondered if he would ever eat again. Getting him to eat 4 blueberries in a day and take a few sips of water was a victory. Watching him become almost skeletal has been difficult to do.

But after difficult beginnings things started to change. We noticed that his stomach had started to soften, to the point where you can no longer feel the tumour by pressing against his stomach. I’m not sure how quickly the tumour was expected to shrink, but I think even Ethan’s pediatric oncologist seemed extremely surprised that he could no longer feel it after two weeks of chemotherapy.

We feel very blessed that things seem to be going in the right direction. We are grateful and indebted to the hundreds of people who are faithfully praying for Ethan. We’re grateful for the many people who have visited and provided presents – every single time it has buoyed his spirits. We’re thankful for the many people who have provided wonderful, generous meals for our family or other physical service for us. We think about angels seen and unseen that are supporting us at this time and to all those who have provided kindness, service and prayer for us you are our angels.

During the past four weeks perhaps the most remarkable thing to me has been the constant feeling of peace that I have felt. I know I speak accurately for Jerusha too when I express this. We have definitely felt moments of concern and worry, but these have largely been overshadowed by a consistent feeling of peace and calm – and that has been amazing to me. We have no doubt that this peace has been given to us from God. And at this time I’m not sure there is a greater gift we could have asked for as we work with Ethan to help him get better.

Life is more precious and fragile than we often realise. Take the time today to value life and those closest to you.

Thanks for all your love and support.

With Love,

Luke, Jerusha, Blaise, Ethan and Vienna