First Chemo

Toby

The last two weeks have been a whirlwind.

It's hard to put into words what it feels like but I have landed here: Imagine standing in the waves at a beach and each wave rolling through pounding you one after the other, coming up for breath before the next ones hits you.

Information upon information, tests on top of tests and conversations with the Oncology team that literally pull your insides apart. Survival rates, the what if's if this first 18 weeks of treatment doesn't go well, length of life if not, side effects of treatment, just to name a key few.

I'm writing this at 11.48pm on Monday night because its only now that I'm starting to make sense of today. It was Lukas first Chemotherapy treatment but that was in line with what we imagined and expected. It's the unexpected that gets you.

Before starting Chemo around lunchtime, we had a session with Andrew, the lead Oncologist for Luka. This guy is top notch from what we have seen so far, great communicator, honest (which we have asked for) and importantly to me, a father as well. There is comfort in knowing that hopefully your child isn't just a number sitting in a hospital room.

Before the past few years, I really didn't know much about Chemo treatment and what it actually involved until some of our other family went through it. To most of us, we probably all see it for what is visually - the patient sitting hooked up to little bags of drugs dripping through an IV line, in Lukas case a 'Hickman' line which runs directly into the arteries around his heart and stays there for the next year.

Yes the drugs are nasty, yes there is vomiting, diarrhoea, exhaustion, pain in muscles and bones, intense headaches and probably a lot more that Luka will not be able to communicate or show, but as we learnt this week, those short term side effects are only a small consequence to the treatment.

These drugs aren't just nasty, they are life changing. What we have learnt today is that yes we are treating Luka to stop the cancer and hopefully cure him, but there are real long term consequences and it was something we certainly never understood happened for people going through this. Of course children are more susceptible to these.

Don't sign the form, and your child has 4 - 6 months to live. Sign the form, and you have a coin toss chance of success and a near 100% chance of quite serious long term side effects.

I find it extremely hard to imagine those conversations with him.

Following this information on side effects, a consent form is put in front of you to sign and I don't know what it is about this part but it just pisses me off because you simply don't have a choice do you?

Don't sign the form, and your child has four - six months to live. Sign the form, and you have a coin toss chance of success with a near 100% chance of a whole list of quite serious long term side effects.

It's an absolute mind fuck as a parent. Of course you want to sign and just get on with treatment but you are signing away a lot of other parts of a future healthy life for him.

That's why the conversations with Luka in the future will be tough, I hope he will understand.

The moment the first few drugs enter his body is certainly a tough one. We had the support of family in the room and the nurses team, but I really found it hard to think straight at this point, it's just simply shit. Sorry, no other word to describe it for now.

I feel angry, pissed off and keep coming back to why a child? Your brain can take you to some dark places on that one, such as: do drug companies just avoid finding a complete cure to cancer for money? Andrew has recommended a book, 'The Emperor of Maladies' to quell that one.

Anyway, Luka's Chemo lasts about an hour, 30 minutes on each of the two different drugs. Then he stays on a hydration drip, to help his kidneys flush out the drug, over the next 24 hours. Katelyn, who is staying at the hospital with him 24/7 (only one parent allowed overnight), will have to make sure his lines don't get tangled up and pull out of his body. Imagine keeping an 18 month old who loves to play and walk under control! Luckily she has twice my patience.

The short term side effects from today's treatment were very quickly debilitating to Luka. He was chair-bound from lunch till bed time, not wanting to move much, very pale, weak, tired and refused to eat until about 8pm. He was understandably upset and very clingy to mum.

This is just day one though of the first three week cycle (there are six initial cycles). Andrew tells us that cycle three and cycle five are significantly more ramped up in terms of intensity. Great.

I've gotta say, I'm finding it pretty hard finding some positives at this point. We're both tired, I have to leave the hospital by 8pm and doing so knowing that Katelyn will likely be in for a rough night.

Going back to the wave analogy, this is the part where your head is just above the water line, sucking in that breath, waiting for that next wave of information or realisation that this really isn't good.

But...I refuse to be completely overrun and its taken me until whatever time it is now in the early hours to find something to be thankful for. At least Luka has an even chance. There are families here that probably wish their child had a 50% chance. I wish I could save those parents from that next wave. At least we are in the battle now. We can try and get this crap out of him.

It's going to be tougher than I thought, I can see now that Luka's smiles, his waves, high-fives and my favourite - fist-bumps, are going to become a rare occurrence for the next while.

Its been a tough old day, hundreds more to come but we just have to weather the storm.