Next part of the journey.

It has been a big six weeks and we have probably glossed over the last few days a bit as we took some time to get our own heads around the next part of Luka's journey.

Six weeks ago, Luka left Christchurch after a few days of chemo, the second round of his hard treatments we have been doing to recede the tumors in his head and leg. He was great for a few days and then came the side effects, but at the same time he contracted 'Astro Virus', something that almost all kids get at some stage, but for Luka with no immune system at the time, it hit him hard. With very bad diarrhoea, some days he had a net loss of 500 - 1000mls of fluid. Some days we had up to 20 nappies.

We spent time in Southland hospital, and then Christchurch to really recover from that virus. The problem with illness or viruses for anyone going through cancer treatment is while they may recover initially, as soon as they have another round of chemo, it is very likely that same bug comes back as soon as their blood counts and immune system drop.

Fast forward to two weeks ago, Luka left Christchurch again after his third round of chemo. These are serious drugs, one of them - Doxorubicin, is considered the strongest chemo drug in the world. Therefore we expect rough side effects for about 10 days after the chemo. But what compounded it again this time was the same Astro virus coming back.

On Monday, Luka was flown by LifeFlight again to Christchurch. The flight is so he can be continuously monitored and he has no blood counts so a commercial flight is too risky. The team in that flight are great and take such good care of Luka.

Once here, Luka started to get worse quickly. His liver has started to struggle with what’s being thrown at it and he was moved to high care in the middle of Monday night and spent a day there to receive some special drugs and extra blood. He has has a blood transfusion every day for the last 7 days.

He also has Mucisitis down his track and in his stomach, which causes severe pain and he is not able to eat or drink so he is on a constant morphine infusion.

Luka is retaining a lot of fluid in his stomach and his liver, which can be dangerous in excessive amounts. The liver drugs he is having will hopefully turn that around but it takes time. We are expected to be in hospital for another two weeks. Luka is sleeping about 20 hours a day currently. As we write this, he is snoring his head off.

The last week has forced us as parents to reflect on why we are doing this and where we go from here. We feel horrible that really we are the ones deciding on this treatment, knowing full well what it will be like for him. But we had an opportunity when we learnt of Luka’s relapse to jump on it quickly and aggressively and so we chose, with advice from the Oncology team, to go with the harder drugs in the hope of getting more time.

Our goal has been to recede his relapsed tumors and then gain as much quality time as possible. The last three months since finding out about his relapse have not been quality time. They have been continuous travelling between Te Anau, Invercargill & Christchurch, long weeks spent in hospital, days of Luka being really unwell, and a few where he has been on the edge of life.

Yesterday was a big day

Yesterday, we got the results of a CT scan Luka had Tuesday, a review to see the outcome of his three hard rounds of chemotherapy & radiation. They were clear. The tumors have been burnt back to effectively nothing. There were no new tumors or growth anywhere. A moment to celebrate, really just relief for us and feeling proud of Luka.

Luka has achieved what the goal was. His body is battered and he is tired. So the time has come to pull back and we have decided with the oncology teams advice, to stop Luka’s ongoing chemotherapy treatment with the hardline drugs he has received in the past. His liver has reached its capacity to handle harsh chemo any longer. This was a big driver for this decision, among other factors.

After a good 2-3 weeks of recovery, he will move solely onto the overseas pharmac-unfunded drug that is potentially effective on the rare gene of his neuroblastoma cells. That he will stay on and at some point, his cancer and tumors will return. There may be some oral, lighter chemo given but more as an option to slow it down and give him comfort.

It is a bittersweet decision. Luka will now have the chance to really enjoy his days, play like a normal kid, spend good time at home, out on the lake, on his bike, do some fun stuff, play with his friends, with his dogs and his family. But it is a real mind f**k. We are losing an option for keeping Luka with us and we don’t have many left. Chemo was something that while horrible for a short time, it gave good results and good time.

The labor of these decisions is intense and sometimes painful when you consider stopping. Three months ago we were faced with doing nothing which would mean Luka wouldn’t be with us now, or do something hard for three months and hopefully allow Luka to be here, happy & reasonably healthy for maybe 3, 6, 12 months or maybe a miracle of longer. Luka has been our guide the whole time and it is clear that we have done enough & the best for now. He is so incredibly strong, we are so proud of him. The days ahead will be slow until he is recovered and then hopefully plenty of time for some normal ‘kid’ time!

It is difficult to understand how we feel at the moment, a mix of relief that the tumors have pulled back enough to now have some time without being in hospitals and doing treatment, but also an understanding that this is a another step in this journey that we are not ready to take, and never will be.