Grief & Hope

Toby

There is no way to sugar coat our last week.

It started on Sunday 7th May. We headed from Te Anau down to Invercargill to catch our flight to Christchurch for treatment, to start Luka's fourth cycle of immunotherapy.

In the days leading up to this trip, Luka had been walking a bit funny, developing a limp and on one of the days he was really struggling to walk at all. Every day was different though, good, bad, good. Compared to last year when we first found his cancer, it was nowhere near as bad.

We assumed it was the drugs he was having as they really interact with his nerves and we had seen this, on a lesser extent, in months prior. We also found a small bump on the side of his head but put it down a kid being a kid and bumping his head most places he went.

We were a little bit worried, but not thinking anything too bad.

Meanwhile, on arrival to Invercargill Airport, heavy fog rolled in. We were delayed three times, then eventually cancelled. We rebooked for the next mornings 6am flight to make it to Christchurch in time to start immunotherapy at 10am.

We were cancelled again and moved to an 11am flight, resulting in missing the first day of immunotherapy and the hospital throwing out a very expensive bag of drugs due to a 24hr expiry.

Eventually we were on the plane, with Christchurch in sight. Finally able to take a breath and think, I was sitting with Luka on the plane reading a book to him and he kept rubbing his lower legs.

Something didn't feel right. My gut was sending up flares with the way everything was going. Throughout this entire year, I have learnt that as a parent when your stomach is telling you something isn't right, you need to listen. Nobody knows your child as well as you do.

I leant over to Katelyn and said I was going to take the rest of the day off work once we got to Christchurch, and I wanted to have a meeting with the oncology team as soon as possible.

The oncologist for the day in the CHOC ward was amazing, she listened to all our concerns, booking us into an X-ray that afternoon for his legs and head.

During the X-Ray, I had to hold Luka in place while wearing a protective gown. Above me, the pictures were coming up on the screen. Legs first. Clear. Pelvis next. Clear. Head next. That looks different? Not smooth, but maybe that's just the way a child's head forms over time.

About 11pm, a night shift paediatric doctor came in to on the request of the oncologist to let us know that the legs were clear and nothing of significance was found on the head but they were waiting on the final radiologists report.

I jumped into the hospital bed beside Luka feeling a sense of relief. We had been over thinking it.

The next morning as Katelyn arrived to hospital, the oncologist came in to let us know again that the team was still reviewing the in-depth pictures but at this stage things were okay.

Literally 60 seconds later her phone rung. The radiologist had completed their report, looking at the density of the some of the different lumps and bumps on Luka's head. In their opinion, they were possibly tumors.

Luka was taken into a CT Scan late that afternoon and we met with our oncologist again at around 5pm. Katelyn and I sat quietly. I think we both knew what the results were before she walked into the room.

In that moment we were both transported back to a year ago when this all first started. Every day finding out new information that seemed to make Luka's diagnoses worse and worse. His overall prognosis was a 50% chance of survival to five years.

Being told if Luka relapsed at any point, this would fall to about 2%. We had always been prepared to see this disease again but in three or four years time.

We had planned out what going home for good would look like, what Luka riding a bike would look like, him going to school with his baggy uniform shorts and long socks, having his 5th birthday with his friends, going to Disneyland, maybe watching him hold a sibling in his arms at some point.

We had even dared to dream about what sports he might do. Rowing maybe? Certainly a throwing arm of a cricketer. Loves the All Blacks. Maybe he would be into music, he has the dancing feet and head bopping of an entertainer. What job might he do? We quietly thought something medical, helping people and giving back.

The oncologist sat down, her eyes were glossy and she simply said - "it's not the news I was hoping to deliver".

Luka had relapsed.

He had two tumors on the outside of his skull that had grown through into it and were now pressing against his brain. One behind his eye that was starting to cause double vision for Luka and his eye to slow down. And another bigger one on the side of his head, that was pressing against the motor strip of his brain, resulting in the walking issues.

It is hard to talk about that moment but we have always tried to be as open as possible about this experience. We were both just weeping.

I looked at Katelyn and I could see her becoming empty, the colour had drained from her face.

I am always full of questions, trying to know every scenario to be able to plan. It's my inherent response to everything - what is going to happen and what do I need to organise for them?

But when I look at Katelyn in these moments, all of that goes away and I just feel numb.

Katelyn is an amazing mother, she has been by Luka's side every day since this began, acting as his strength when needed, his safe place. She is extremely patient with him and never complains about sleepless nights and extreme tiredness that we have experienced throughout this journey at times. Her life has been put on pause, Luka and I are both thankful to have her as our rock.

After 12 months of gruelling treatment for Luka, horrible medical interventions and constant sickness, we were back to square one.

She like me had all these ideas, plans and dreams of Luka's future. Now we will go to bed at night, hoping he will open his eyes in the morning. We have learnt the hard way to saviour the small normal moments and to never take the simple act of life for granted.

In our next meeting we met with the senior oncologist at CHOC after they had had their large full team meeting in the morning with Neurology, Radiology and Oncology. We were told simply that they believe curing Luka was now off the table and that we would move to extending life for as long as possible with good quality.

It can be hard to understand the difference between non-curing and being deemed terminal. Luka is not yet terminal. That comes after a decision by us, his parents, to stop treatment.

Some would think "well surely you just keep treating forever then and he will never get to being terminal".

a) that is simply cruel. Quality of life under constant chemotherapy in a hospital room for years is not a life.

b) cancer doesn't work that way. Eventually the neuroblastoma cells will become resistant to the drugs they are receiving and outgrow the effect of treatment.

We have used the absolute best drugs and treatment protocol available in the world to treat neuroblastoma over the past 12 months, and it hasn't destroyed 100% of cells. It may have destroyed 99% of them, but there is that 1% that are resistant to that treatment protocol and will never be destroyed.

So now we have two other chemotherapy drugs as options and Luka has on Monday begun a cycle of them. There is a very slim chance, but a chance, that they kill the cells we need to.

There are many different scenarios of what we do and what can happen but long story short, we have made a family decision with our oncologist to proceed with two cycles (six weeks) of high intensity chemotherapy alongside high-dose radiation to the skull.

This treatment is expected to be hard on Luka's body with vomiting and bad diarrhoea the main side effects. Some kids end up in high-care (level before intensive care) to get one on one care and special electrolyte replacements.

There is a very real risk, which is extremely scary to us, that we do this six week treatment, it does nothing and we have just chewed up six weeks of Luka's life having him feel crap. This is a risk we have to take. 2% is 2%. But we are not blind to the reality.

At the end of the two cycles, we will undertake another CT Scan and MRI to assess what the chemo has done. If it has pulled back the tumors, then we may continue to push treatment as if we can get Luka to a healthier state, then an option of treatment (MIGB Therapy) in Sydney comes into the picture.

I know I sound robotic, all these plans and if this happens then we will do this and that. That is my fight mode. If we went into flight, then we would simply call it now.

How do you make that decision as a parent when there is still some hope?

In reality, we have no idea what is going to happen and we both know we have to take it day by day. We do not want Luka to ever suffer for the sake of us being able to say "we fought to the final day". That is not a life we want him to live.

His life is already so unfair. It sickens me thinking about a child with cancer. Honestly, nobody can ever convince me now that there is a higher power. Un-curative bone cancer in children? Give me a f*****g break.

When you have a palliative care nurse sitting in on your oncology meeting, explaining how the final days of your two year olds life will look, it makes it pretty hard to believe.

This situation is very rare, it was very hard to hear that Luka will be one of a handful of children around the world this year that will relapse during treatment for neuroblastoma. The odds of that are so fractionally small and this is something Katelyn and I struggle with, is just the unluckiness of this for Luka. Why him?

We are having conversations about how Luka's room will be set up for him if we end treatment and go home, where his last days might be, who will be there, where he will rest, and how will we possibly carry on afterwards?

All the things us parents focus on, providing for our children, giving them the best start in life, education, planning for their future. All I want is for my son to keep opening his eyes each morning.

For now we are getting on with it, it is extremely hard and emotionally taxing but there is hope that we are clinging to.

Luka is our strength and we are not done yet.