In the trenches.

Katelyn & Toby

It has been a big week of hits, one after the other but we are possibly coming out the other side now.

Luka started his fifth and final round of 'Induction Chemotherapy' two Mondays ago. It was another round of the two worst drugs on the programme and so we expected him to go down hill at a fair rate of knots.

By Wednesday he was showing the initial side effects of tiredness, nausea and aches as we left hospital and headed back to Ronald McDonald House. Over the weekend he was zapped, spending most of the day in bed with Mum and Dad, watching movies, reading books and of course sleeping.

Meanwhile this Monday just been, we moved into the first full reassessment of the disease and this started off with a hearing test. A couple of the drugs, one in particular called 'Cisplatin', has a 90% likelihood of causing damage to the hearing.

Luka had the earpieces put in and the audiologist slowly went through each frequency, Luka reacting in the right way to hearing each different sound level as they played.

Until the last two.

The top two frequencies are sharp sounds and specifically letters such as S, F, V and T.

Luka didn't react to any of those sounds. He simply carried on reading his book while we looked on, our stomachs sinking.

The audiologist report shows a moderate to severe high frequency hearing loss meaning Luka will need to get permanent hearing aids fitted over the next month or so. It is important he gets them now as he is in right in the midst of learning to talk and hearing us say certain words and letters is very important.

To all those who have supported us with donations and events, this is an example of how your generosity gives us the ability to make sure Luka has the best chance to experience normal learning, both now and over the coming years.

It would be fair to say that it was a tough day. Along with scars from surgery and internal lines, the hearing is another side effect of treatment that Luka doesn't get a choice in. It is the catch 22 of cancer treatment - the long term side effects versus saving a life.

We have become very good at processing tough information. If this was six months ago and we found out Luka had lost his hearing, it would likely be weeks of feeling sorry for ourselves. Now it is a 15 minute walk around the block, talk, accept and move on. It always lingers in the background of your mind, particularly as you go to sleep at night, but you find ways to block it out.

So onto Monday night. It was Toby's turn for the night shift as Luka's vomiting increased to the point that he needed someone in the room throughout. We were up every 1-2 hours, constantly recycling pottles through, changing pyjamas and trying to keep on top of the anti nausea medications to try and keep him comfortable.

Things didn't seem right though. This was far worse than previous rounds of chemo and by Tuesday lunchtime, Luka had gone from 11kg at the start of chemo, to now 9.8kg just a week later, putting him on the 10th percentile for his age. He was exhausted and barely able to keep his eyes open.

Your knack as a parent for picking when something is not as it should be gets better and better in this environment, so we rung CHOC at the hospital and brought him in. The next morning on Wednesday it was confirmed he had a virus now also and due to his potassium and magnesium levels falling below an acceptable range, would be admitted to high care (step before intensive care) to receive a higher level of drugs and monitoring.

The high care ward is a lot tougher, constantly hooked up to multiple wires and lines, screens flashing & beeping throughout the night, and fixed to the bed. There is often the emergency alarms that go off from other rooms quickly followed by nurses rushing it in. We sit in fear of ever pushing that red button.

When the virus results came back, Katelyn was the one with him in hospital and so from that point Toby wasn't allowed to visit inside the same room until he was clear of the virus. Come Saturday now, Luka has been cleared, but it has been a long time for all of us apart and a big effort for Katelyn being cooped up in the high care room.

As of today, Luka is almost back to normal, his nutrient levels have returned, there has been no vomiting for almost 48 hours, he is smiling and even managed a quick dance as he returned to the regular CHOC ward this afternoon.

Toby takes the rest of the weekend in hospital, while Katelyn will get some much deserved rest.

We have learnt that neither one of us can do everything and be with Luka all the time. It took Katelyn a lot longer to be able to leave Luka for breaks but this is such a long road with 9 months left to go and we know we need to break it up.

Nothing will call on that as much as we head into the next phase of treatment - two rounds of 'high dose chemotherapy' where Luka will be admitted to hospital for 10 days straight each time.

High dose chemo is designed to really penetrate into the bone marrow and kill cancer cells hiding away in there. It is so aggressive that it causes severe damage to the bodies own stem cells, and so Luka will have these replaced with his own stem cells that were extracted right back at the start of treatment. It is a longer cycle, taking four weeks to recover.

Before this begins, we have a PET-Scan on Tuesday which will show the true success of the first five rounds of chemo. We are trying not to think about the results but we are nervous. We desperately hope that the cancer cells in his head, by his eyes, have gone otherwise it will make radiation trickier being in close proximity to the brain.

It blows our mind that we are into the fifth month of treatment. We have learnt incredible amounts about ourselves as parents and adults. Luka has taught us most of this. He has tested us, he has had us both in tears at the worst possible times (sorry Ronald McDonald staff!!), we are in awe of his courage, his energy in the worst times and his continued kindness with us, the nurses and really anyone around him.

Before becoming parents, we were rowers, athletes, both firefighters for at least six years and both thought we were pretty tough if we wanted to be. We have learnt more in the last four months than in 30 years, about courage and strength, and that has all come from our little two year old boy.

Go figure.