Luka's Journal

It has been a very challenging 48 hours. Friday morning Lukas femur bone broke from tumor growth and a small fall. After a big journey to Southland Hospital and a very rough pain experience, he was finally pretty stable at midnight and had a good sleep till Saturday morning.

He had several procedures done to get him stable enough to LifeFlight to Christchurch including a Femoral Nerve Blocker catheter, never done on an under-18 child in Invercargill and made a huge difference to his pain so a big thanks to the Southland hospital team. He will now have more work done on his leg and a full disease review to talk about options for the road ahead.

Luka has deteriorated quite quickly over the past week, it is a very hard part of the journey we are heading into now and all we can do and ask is to remember how strong Luka is and how happy he is with mum, dad and Oakley at his side each day.

A lot can change in just a few days.

After celebrating a year since Luka’s relapse and him beating all the odds to be here right now, we were brought back down to earth with news from Oncology that the cancer has broken through Luka’s trial drug.

We have also noticed small changes in him. We are told a few good months left.

Good moments are hard to truly enjoy as they pull at your heart strings, knowing what will eventually be missed.

Luka will soon hopefully have palliative radiation to reduce pain in his legs. We are incredibly proud of how strong our little guy is 💙

This last month marks two years since Luka was diagnosed and started his cancer treatment.

It also marks one year since Luka was told treatment hadn’t worked and he had relapsed with several large tumors growing back already.

At this point we were told there was very few options and even shorter amount of time left with Luka (2-3months).

We were told it would be unlikely he could reach his 3rd birthday in November, and then Christmas, and then the big one was meeting his baby sister in January. Each timeframe we were given Luka has blown past without a second thought.

As parents we’ve had to get comfortable with living in the lurch and somehow block out the fact that our worlds can be turned upside down any week (we try to anyway!).

Instead we are just trying to make the most of every day and seeing our amazing boy growing up.

He’s become such a kind, caring, social boy and the best big brother to Oakley. He makes us so proud everyday. ❤️

Cheers to pushing the boundaries and to making plans even when you’re afraid they might not happen. 🥂🥹

Katelyn.

Nine months ago, just five days after learning of Luka’s relapse we found out another peice of news.

Today, a day we were told would be very unlikely, came true. Luka became a very proud brother this morning to Oakley Linda-Ruth Pascoe, born 9:06am at home, 8lb 6oz and so far a real sleeper, feeder and snuggler.

Luka deserves this moment as much as his beautiful and absolute champ Mum! We are a very happy family of four 😁

💙

Yesterday we received an update following Luka’s X-Rays last week that the cancer is now in several spots around his body but is stable for the meantime and not causing any discomfort. Luka is happy and loving the time with his family & friends at home.

A big day in Christchurch today for our little guy, 20 check up X-Rays, some time with Lukas oncologists, a surgery to remove his chest lines and one tired kid! There’s ways to make things better though 🍪🍪🍪

And with that we have a three year old! A day that six months ago looked very unlikely, we are grateful to have a happy young boy with us. 😁 Two very proud parents here 💙 Katelyn Pascoe Toby Pascoe

We were very sorry to hear the news this morning of Dr Tom Mulholland's tragic passing. Dr Tom graciously gave his time at Luka's Te Anau Winter Gala fundraising night last year as one of the key speakers.

Our thoughts are with his family at this time 💙

'Very, very raw': 'Hero' physician Dr Tom Mulholland dies suddenly Known affectionately as Dr Tom, he'd helped hundreds of thousands of people over 30 years.

Life is good with a fluffy 💙

Brunel Peaks Cafe and Bar

Our little explorer 🥾

The boys getting ready to go home today 💙

https://www.lukasjournal.com/post/next-part-of-the-journey

We have an update on Luka's journey 💙

Next part of the journey. Our journey is changing as Luka has become clear of tumors again, but it is time to pull back from the same treatments.

Luka got his own plane again today. A few things to get on top of at the moment so LifeFlight sent to collect him and bring us to Christchurch today. Little guy is doing it tough but strong as ever.

💙 Chemo Crazies keep the CHOC ward entertained on the long days 💙 Thanks guys!

This is a really cool group that provides a bunch of entertainment boxes full of time fillers for kids on the cancer wards across NZ: https://www.thechemocrazies.co.nz/donate/

🖤

A big thanks to Paul, Vick & Hayes Mechanical for running a car run in Luka’s name over the weekend. Sounds like a big turnout and our family was stoked to be involved. Thank you very much!

Well it certainly hasn’t been the two weeks home we wished for. Luka (and Toby) contracted the beloved norovirus again a few days after leaving treatment in Christchurch. Due to having no immune system following chemo, he has been down with it for about 14 days, landing him in Southland hospital for four days due to low potassium, phosphate, blood counts and very bad 💩

We thought we were in the clear and got back to Te Anau, until 20 hours later he spiked a fever meaning due to being neutropenic (having no white blood cells to fight anything), he got some A++ treatment in Te Anau before a ride down to Invercargill in the ambulance for another four days there. The tummy bug was putting up a good fight.

He is slowly coming right now on the noro front as his bloods start to come back up and give him some oomph to fight off the bug but his stomach is wrecked inside making any consumption of food or feed hard. He is also being weaned of an addictive nerve control drug which seems to be making him very emotional, he is out of energy and sitting on the couch looking at the mountains has become his current favourite thing.

It’s a classic fortnight for a cancer kid, lots of unexpected plan changes and a body that seems to be overwhelmed. Very hard to watch and a lot of questioning ourselves as to how we can make it better but it really is recovery time.

Now we are trying to do as much feeding as possible to try and replace the 2kg (15%) of body weight he has lost, while avoiding causing vomiting, for a few days recovery before another round of chemo on Wednesday.

It all sounds a bit doom & gloom at the moment, but norovirus has really made his recovery from chemo more difficult. Luka in himself is still reasonably happy, watching a LOT of Wiggles, sleepovers in mum & dads bed and lots of cuddles.

We love how simple our days are enjoying the small things like that while we have them.

Today Luka starts his 10th round of chemotherapy. Two days of some of the worst drugs for neuroblastoma - cyclophosphamide, vincristine and duxorubicon (known as the red devil).

Luka had these drugs last year but they were split up in different rounds, this time they are together. Not sure what to expect but our plan is two days of this and then straight home to settle Luka in for a rough week or two of side effects.

We haven’t seen any tumour growth over the last few weeks so we are really hopeful that we can get on top of them over the next month and give Luka some good time.

We have had a great couple of weeks at home the last few weeks. Lots of exploring, boating and time with family, all be it in freezing weather!

Finally a big thanks to everyone who has sent messages, made or sent Luka special gifts and to our friend Julie for redesigning Luka’s bedroom 💙 we really appreciate it all.

A big thanks to .newzealand for the amazing day in Doubtful Sound showing Luka and his family around. We were lucky enough to get dolphins, seals and penguins all in the space of 15mins 💙

Another cool event being held with Luka in mind thanks to Hayes Mechanical in Otatara. We're full of thanks 🙌