2 Years Old

Katelyn

I’m currently lying on the hospital bed next to Luka, at the moment we are a week and a half into the last high dose chemo round.

Luka has had four days of chemo, his stem cells returned, and is currently neutropenic (no immune system, so isolated to his room).

He has five pumps running, IV nutrition, fluids, phosphate and potassium additives, morphine infusion and potentially adding a ketamine infusion tonight too.

Now is the horrid waiting game as we are still expecting things to get worse before his stem cells can help him fight back to feeling healthy again. Amongst all of this, Luka has turned two today.

Not exactly how we thought this was going to go a year ago, but even though our celebrations might be slightly different this year, we honestly couldn’t be more proud of our amazing son.

He has proved time and time again how strong he is. Not only with being able to push through when he is feeling absolute rubbish, but also the fact he is able to keep being so kind and caring with everything going on.

I love how his little personality grows in confidence (apologies to his nurses for being so bossy), how cheeky he is and how quick he is at learning new things.

It can be really hard as a parent to avoid comparing kids to others the same age, especially with your first child. But in reality none of that matters, everyone has their own path and their own battles along the way. Luka is just having to fight a big one first up.

I refuse to let myself think about what it would be like if we were still in Te Anau and none of this had ever happened, not only is that truly heartbreaking but also because that’s not real.

Cancer changes everything. This is how things are now.

We just have to keep looking forward and just taking one challenge at a time, one day at a time. But for now we will make sure we celebrate our amazing two year old the best we can! (Including the birthday crown on the ward)

Toby

A memory appeared on my Facebook yesterday.

A video of Luka on the morning of his 1st birthday, dancing, wiggling his booty and being cheeky. What the video doesn't show is he wasn't actually 100% that morning.

Fast forward to today and Luka is two years old. We have very mixed and confused emotions of how to treat today. Luka is lying beside me, he is simply very unwell. That's the easiest and most PC way to put it. His eyes are closed a lot, his breathing is snuffled through his nose as his mouth is sealed shut due to the pain of the hundreds of ulcers in it, his heart rate is constantly sitting above 160bpm indicating he has pain, he is on the maximum level of morphine he can safely be on, along with Panadol and Tramadol.

He may as well be in a coma. It would certainly make getting through this two week period easier on him.

His friends can't be with him, cake is a waste of time, and he has a couple of good vomits today so really it is pretty much a regular hospital day.

So how do we celebrate his second birthday?

What I have fallen back to is "well at least he is here".

Going back to his first birthday, he woke up funny that day. He had a temperature and out of the blue was a bit lethargic. I remember at one stage Katelyn & I were considering popping into the doctor before this birthday party started at lunchtime just to check but as the morning wore on he came right.

Now I look back and think, well that was November, he was diagnosed with cancer in April, was that the start of the cancer? Did he feel funny because something wasn't right?

You tear yourself up looking back at every moment before April questioning when the cancer started growing. But it is an endless cycle that will have no bottom and as sick as you feel in your stomach you have to park it and not think about it.

We have to be grateful. Luka has made it to his second birthday.

In April, the state his cancer was in, we were told if it hadn't been caught he would have had two - four months to live. So we are grateful. He is still alive.

Perspective is an amazing thing.

I am careful typing my words for this blog, I have a feeling of bluntness and f**k the world right now. I am exhausted, so is Katelyn. We have been up throughout each night as Luka deals with horrific side effects. We are grumpy, short and don't have a lot of time for much or anyone else other than making Luka as comfortable as possible.

Apart from other parents of cancer or ill children, nobody can understand the feeling of watching your two year old endure what Luka has over the past seven months. We are halfway but it feels like the last few kilometres of a marathon and we are all ready for a break.

So who is my two year old?

He is stronger than anyone I have ever met. Genuinely. I have sat with him at 2am for an hour on his hospital bed as he goes at both ends, holding his pottle, holding my arm, deep breathing, eyes closed, just simply surviving.

He is innocent and kind. He had no choice about this year, he thinks that this is normal life and knows no different. He smiles at the nurses every day, even as they walk in with the chemo trolley or some horrible medication. Could we do the same as adults?

His kindness is overwhelming. He will push food towards Mum and Dad before taking any himself, he will lean over and give us a hug when we are struggling watching him be sick or struggle with pain.

The hardest part - he will try to help us clean up after him, pushing towels around the floor or helping us remake the bed. His little legs white, shaking from no energy left but he keeps going.

Luka is smart! He has likely fallen behind in his ability to handle rough and tumble with other kids, but his social & emotional intelligence is well advanced. He senses when someone isn't okay, he can count to five on his fingers and he knows what the nurses should be doing with his lines or where certain drugs should go. He has no problem in reminding them too.

He gets upset when another child is crying on the ward, he will sometimes get our of bed and go and stand at the door. He will wait quietly until they stop before he will close his eyes to sleep again.

He has changed our perspective on everything. How we live our lives will be different when we return home, it will be solely focused on enjoying every moment while we have it, both with him but also ourselves.

The speed of a ticking clock is not something you have control over, just how you spend that time.

Finally he makes me proud and honoured to be his dad and his short two years have given me a crash course on life. Never take it for granted.

My two year old is my best mate, and someone I look up to now (or down?) as an inspiration of strength and resilience.