Cycle Three

Dam this cycle of chemo.

In Luka's first cycle of chemotherapy, which seems so long ago but only six weeks, he had one or two very small bouts of nausea and vomiting.

The second cycle brought a bit more but mainly because he had a fever and infection, similar to the first cycle.

This time around has been a different story, and a certain bus metaphor comes to mind to describe it.

The third and fifth cycles were described to us by the oncology team as the D-Day rounds. Expect a tired, run down, very ill child who would lose weight and need full feeding support.

The cycle itself was three days with chemo for six hours. Four hours of Cisplatin and two hours of Etoposide. During this time, Luka was hooked up to sodium hydration 24 hours a day. It's fairly full on for the parent in the room as a 19 month old doesn't want to sit still for long.

The chemo days themselves are not overly bad on Luka, a little bit of fatigue and nausea but controlled well by anti-nausea medication.

Following earlier cycles, it has usually taken a week for the full effects to kick in. His blood counts drop, he becomes vulnerable to infection and the nausea is harder to keep on top of. Both previous times have led to a hospital trip with infection and very high fevers. But at least still a weeks break before ending up back in.

This time around, the third cycle, as soon as we walked out of the hospital we may as well have walked back in. You leave the safety net of the nurses and constant 24 hour management of his side effects, particularly the anti-nausea scheduled through the night.

The three chemo days this week lulled us into a false sense of security. As soon as the 24 hour hydration ended, Luka's side effects started to really show.

The first is the acidity of his nappies. They need changed constantly, often with a quick shower or bath and then ample amounts of prescribed creams. His skin has completely changed, stretched and discoloured. It will take a long time to return to normal. If it isn't managed well, he ends up in pain but otherwise you can keep it under control from that perspective.

The second is his hair. Following the first cycle of chemo we had a week of it starting to fall out but then it paused for quite a while. This third cycle is expected to restart the loss. Today as we walked around a pond near Christchurch, I saw bits of it flying off as the wind blew it.

The third and one that effects Luka the most, is nausea and vomiting. The first night back I was lying in bed listening to a few coughs from Luka in the next door room. My ears were hearing it but my brain took a bit to register. He was vomiting.

The risk of course of a child in bed vomiting is always choking but Luka seems to have moved past that stage of his life. He is well aware now though and its horrible. Bursting into the room, he was standing up, holding onto his teddy bear and projecting into the corner of his cot.

We always comment how kind Luka is, he is always putting us before himself with food or helping us put our shoes on, just the little things. When I handed him a pottle in his cot, he straight away bent down to try and scoop up his accident.

That was a heart ripper.

What followed was an hour of constant tummy emptying. All the feed we had been carefully giving for days through his nasal gastric tube, now out and all but a complete waste of time. All the weight gain & management done. Hopefully the nutrients are extracted into the body to be worth something.

Luka knows he's unwell at this point. You can hear it in his voice. He's anticipating the next vomit which is a pretty shitty thought for a 19 month old to understand. He leans into Katelyn and holds onto his pottle.

Times like this, Katelyn and I seem to just click without anything being said. Katelyn has a hold of Luka, catching each round that comes. I start syringing more anti-nausea into his NG tube, some water to keep hydration up, then stripping & changing his bed. We get him into new pyjamas and then sit in hope there won't be anymore rounds, which on the first night there was.

At this point its 4:30am, Luka is back down and we're wide awake waiting to hear coughing again.

This experience repeated itself again last night. Then again while driving to a playground at lunchtime today to get him out for some fun and fresh air.

This is cancer. You get a head of yourself, think you're beating it, our son must be immune to the side effects.

Wrong. It just takes time for the cycles to mount up, the chemo to become a constant occupant in his body and now it's taking hold.

It was definitely a nastier cycle with nastier drugs. We find ourselves this afternoon planning for the night ahead. Spare sheets. Clean pottle. Supply of towels.

We are through three of the first five cycles of chemotherapy. The treatment plan worldwide for Stage 4 Neuroblastoma was last week changed to five rounds only instead of six.

This brings forward the major stomach operation Luka will have, after the fourth cycle, to remove the primary tumour which has hopefully been shrunk down and eroded of cancer cells. The latter of which will prove critical to Luka's success. During this time, the whole hospital team will undergo a full disease reassessment to give us an updated prognosis before moving onto 'mega-therapy', a mixture of radiation and chemotherapy. It's getting closer to a junction point of this experience. Has chemo worked? 75%. If it hasn't, 10%.

I realised at Luka's Quiz Night two weeks ago that there would be a big high to come off.

It was an amazing night, catching up with people I hadn't seen since primary school, people who were going through their own experience with cancer, and all of those who turned out to help our family with their generosity. Just like the GoFundMe page set up for Luka, we have been overwhelmed all along with the support shown to Luka.

This week has brought me down though, the quiz distraction gone, treatment effects setting in now and realising this is why some refer to cancer as the shittiest club in town. Your mind is in a constant tussle between positivity and reality.

Find the positives. Find the positives.

We are making the most of time we have together. Not because we think its limited, but just because the reality of something like this makes you a whole lot more grateful for what you have.