Day 21

Katelyn It has been four days since I stepped outside of the CHOC hospital ward in Christchurch.

If you had of said that would be my norm a year ago, I think I would have thought it impossible and that I’d be absolutely stir crazy out of my mind by now. But in the moment, time seems to rush by. Things are all happening way too fast. Way faster than I had ever expected.

I’m taking some time out and sitting back in our room at Ronald McDonald, our house, by myself.

This is the first time I’ve been alone for longer than a half hour run, toilet break (if I’m lucky) or shower. It is the strangest feeling, walking back here my legs feel so heavy, there is a massive weight on my chest. The further away I get the more I feel the impact of everything hitting me.

I guess it’s mothers instinct that keeps me holding it together, finding things to laugh at and be positive about and just focusing on each little challenge in front of us. In the hospital we need to be doing the best we can for Luka, because he is doing the best he can to fight this.

So much has changed since I was last at Ronald McDonald. Chemo treatment has started. Being vulnerable, Luka has caught not one, but two bugs at once leading to multiple fevers and rigors (step up from shivers). This meant a lot more blood tests, antibiotics, a blood transfusion, anti nausea medicine and loss of appetite. This is on day two of our 14-month treatment plan.

This morning Luka had a nasal tube inserted, necessary because of his loss of appetite and dislike for oral syringes. Imagine a COVID PCR test, but then that just keeps going and going and going until the tube sits down inside your stomach.

That was Lukas 8am start to day 4 of treatment. Of course with the nasal tube comes the teddy bear sticker holding it in place, covering up most of Lukas gorgeous chubby cheek and yet another tube running off him. But this kid is honestly amazing. Sure he whinged for a bit after, made sure everyone knew he had felt completely violated, as any of us would.

But then he just carry's on.

As we come to the end of today, another kick in the guts. Luka had a PETscan (radioactive dye put into his body to track down every piece of cancer) this morning and we got told this afternoon that the cancer is also in his skull bones and gathered in behind one eye. Just another wave smashing us under water leaving us gasping for air as Toby says.

The consultants say this discovery won’t change the treatment plan, the hope is these new areas will be broken apart during the chemo cycles so we don’t have to do radiation on them later. Radiation is a dark cloud of risks we don’t want to get into unless necessary.

Just to top this day off they have found the bug causing Lukas fever is living inside his Hickman line (internal lines put in his body to use for chemo & medication), so he will be having another surgery to remove and replace that asap. Ugh.

So then we come to the end of treatment week one. Exhausted. Scared. Hurt. Numb. Was a whole lot worse than I had ever imagined it could of been. The adaptability and strength of Luka is the most amazing thing I have ever witnessed though.

As horrible and shit as the situation is, if Luka can still manage a smile, then so can I.