Day 100

Katelyn

It’s still so hard to think back to the very start of all this.

Back to being in Southland hospital, ushered from X-rays to an MRI then quickly into an Ultrasound, all while not having any clue what we were about to be told and how much all our lives were about to change.

The two weeks that followed still remain some of the worst weeks we have had so far. The unknown details, Luka being in a lot of pain, and so many big factors such as, housing, work, different cities, all changing overnight.

Those two weeks seem like a very long time ago.

All the anxiety, despair, heartbreak and stress we were feeling seems to have sunk slightly into the background. We are now into a lot more of a routine, have more of a structured plan, a schedule of what’s next and what are some side affects we can expect, and we also are lucky enough to have had the support to adapt and deal with these things.

It’s strange how even hair loss, nausea, vomiting, fevers can be somewhat expected and our reactions to them are simply routine now.

Although none of this journey has been what we wanted, I must find some positives in it.

We are spending so much time together, I’m seeing Luka learn new things everyday and still can never get enough of the full face smile he gives me. Plus I can’t forget the joy of daily ducks feeds. I sometimes wonder if at home in the busyness between work, commuting and home life, if I would have missed some of these little things.

The people we have met over the last 100 days are truly inspiring. Doctors and nurses have made us feel comfortable in the most uncomfortable times of our lives. I do believe they genuinely care about our family and I could never ask for more then that.

The other families we have met, some with stories similar, better or worse. All of them are so brave and so determined to beat the disease and do better for their family. All the families have different challenges they are dealing with, but all of them just doing what needs done and focusing on moving forward.

Over the last 100 days my thoughts, opinions, plans, goals, hopes and dreams have all been completely thrown up in the air, shoved down the garbage disposal and been left in a million tiny little pieces.

Being a mother in a situation where you are told your child has cancer, makes you completely reassess everything. And for now, Luka and this treatment plan is all that I can really think about.

And I’m completely okay with that. (Thank you to my amazing husband for allowing this to be all I need to worry about ❤️)

There’s no sweating the small stuff anymore, there’s a lot less rushing and a lot more patience. Some days there are less smiles or laughter but those days all have to come to an end as well.

But even on the worst days we still have each other. So our family will keep getting up, looking after each other and taking the next step forward together

For us, that will be surgery this Thursday, removing Luka's primary tumour from his stomach.

This will be followed by recovery, the fifth round of chemo, and then a PETscan for disease reassessment.

We did have a little win this week. On Wednesday Luka had a CT Scan on his primary tumour for the surgeons to make a plan. This was the first look back inside Luka since starting the first 12 weeks of chemotherapy treatment.

It has been a stressful week unconsciously for us. Tense moments. Big nights. At times, overwhelming tiredness. Maybe it was because of this scan coming up?

So the result?

The primary tumour has shrunk by 90 - 95%. It has gone from around 5cm in diameter, down to 0.50cm.

It is the first box Luka needed to tick off, the first little light in the distance to keep us going over the next 11 months of treatment.

Some tough weeks lie ahead. Major intrusive surgery. Intensive care after. High dose chemotherapy and so on....But we are taking things week by week, day by day.

Bring on day 101...