Day O to now

Toby

One week ago, Katelyn & Luka arrived into Christchurch from Invercargill on the LifeFlight plane and myself by car. 18 hours earlier we had found out that Luka had a tumour in his lower stomach.

This all started following his MMR vaccines, a few days later he started to limp ever so slightly, which eventually turned into not being able to move his legs at all when he was weight bearing. Katelyn & I took Luka to hospital over the Easter weekend, undergoing X-Rays and an Ultrasound. Southland Hospital couldn't find anything initially and told us to monitor his walking over the next few days. By Tuesday that week his walking had really come to a grinding halt. As I prepared Luka to take him from our home in Te Anau, down to Invercargill again to go to the hospital, Katelyn got a call from Ant (E.D doctor at Southland Hospital) asking her to bring him in urgently. They had found something.

Ant rung several times trying to reach Katelyn, I thank him for his persistence.

Over Wednesday & Thursday the hospital did investigations into what they thought was some sort of infection around his hips. An MRI, further blood tests (he has my dislike of needles!) and more Ultrasound. Meanwhile I stayed in Te Anau and worked because only one parent could be in the hospital due to Covid restrictions. I had gone out to get some tea when Katelyn text me "Red". This is like our codeword for 'drop everything and get help'. This was the first time either of us had used it. My stomach instantly dropped.

Receiving news over the phone of something like this is not something I would wish for any parent. The first feeling was panic, you instantly think of the worst possible outcome you can. How long does he have? Of course the doctors at this stage have no idea what it is or its consequences, but my brain seems to always go to the worst first.

We were told we would be going to Christchurch and would be there for at least four weeks. We later found out this was just for the tests stage.

I quickly rushed around the house grabbing what seemed like piles and piles of clothes for all of us. On arriving to Christchurch I learnt that one or two pieces of clothing had made it into a bag for each of us....bugger.

My autopilot when things aren't good is to jump into action to fill in time. I think it comes from my time as a firefighter, process, process, process. On the way down to Invercargill I called both our jobs, started planning out finances, calling family and trying to stick to the speed limit. These were all things that completely distracted me. Not good.

I arrived at the hospital in Invercargill with my parents waiting in the carpark. This was a very tough moment, what had been held in to this point didn't stay in for much longer.

It probably gets lost in the wash a bit with grandparents, the focus is likely on parents and how they are coping. I can see our parents dealing with not only their grandson struggling, but their own children as well. Tough all round.

I was finally allowed into the hospital. Luka had just gone to sleep and all I could see through the room window was his little body lying in the cot. This is one of the hardest things we see each night, his pure innocence, unaware of reality.

Katelyn at this stage is holding it together, she internalises things for a long time. It is not until we have an hour alone in Christchurch after a few days that this changes.

Luka's team at the hospital gave us a run down together. We can't fault them for their care of Luka, it was very good.

Luka's ride in the LifeFlight was like water off a ducks back, he thought he was royalty with a plane to himself. At this point, things start to feel a bit surreal. Why are we on LifeFlight? Why is there so much urgency?

The next moment is when I walk into Luka's ward at Christchurch Hospital. It is called CHOC, or Child Haematology and Oncology Centre. It is one of the top rated cancer care units for children in the world. Why are we here though?

As Katelyn & I walk through this ward, it feels as though a sledge hammer is hitting you at first. There are children's fingerprints and names on a tall giraffe, children who have had cancer and been in this ward. There are signs "Sponsored by KidsCan" or "Ronald McDonald room this way". There is some irony here as Katelyn & I have donated $50 a month to KidsCan Southland for six years, now we were being given knitted jerseys and a few toys from them. Completely surreal.

After a few meetings with the Oncology team, we head to Ronald McDonald house, a short 5min walk from the hospital. It's at this point we both lose it completely. Finally it is sinking in, Luka has cancer.

Nothing prepares you for how you are going to feel. I'm fairly up with my emotions, not afraid to show them, not afraid to talk about them (clearly) but shit has this thrown me. I think it has thrown Katelyn completely too, a mothers cry late at night is a different sort of cry.. This has been so hard to rationalise, the constant question of "why Luka?" And why the f**k an 18 month old child?

Child cancer has always stumped me from the sense of if there is a higher power, why does this happen to children? Just don't get it.

It's on this night, day one in Christchurch, that my distraction techniques up until this point come tumbling down. No sleep, not even a minute. Katelyn was the same lying in the ward with Luka.

The following 24 hours is a rough one, lack of sleep, sore Luka and first round of testing including going under general anaesthetic to have a CT scan and a biopsy in his back to take samples of the main tumour. This will all show us how far it has spread, the type of cancer and stage of cancer it is.

This results in - stomach & legs, neuroblastoma and a high risk stage. Not good. Really our worst case scenario.

What do we think? Well, its just f**king shit.

This was a very difficult moment, sitting with the oncologists hearing the results and of course the 50% survival rate. If Luka can get through the first round of chemotherapy, 18 weeks, and have retraction of the cancer, and removal of the main tumour via surgery goes well, then we move to a 75% chance at this point. Then I t’s a couple of months of “mega therapy“, sounds horrible. Then another 6 months of maintenance chemo and treatment.

This first 18 weeks is critical. It will be absolutely gruelling because during this time he will have no more scans and so we will not know whether the chemo is working during this time.

As lovely & professional as the RMH staff and CHOC staff are, I can tell you that this is a taste of hell on earth.

So how will we help Luka and not let all of this get to him and us?

We refuse to be negative in anyway around Luka, he needs nothing but positive endorphins, fun, laughter and happiness. Why would we change the way he is being raised since he was born now? Night time alone together as parents is a different story, but the length of this journey means that Luka will come into an age where he may start to understand in some form what is going on.

We refuse to let him think that this is something that can beat him. We refuse to think of Luka as a 50%'er. Or to approach the rest of this, thinking of him just as a cancer kid.

He is Luka.