Morning Meds

Katelyn

Turns out our three week break at home is not a “break” as much as we thought…

We are still on a fairly rigorous schedule with Lukas medicines, this includes making up and doing injections, administering a new drug, Isoretinoin (retinoic) acid, as well as his other continuous medicines.

The retinoic acid is a tricky one as it is in the form of rather large red pills. Luka being 2yrs old does not swallow pills. Disguising the pill in food was also unsuccessful as he isn’t eating much food at the moment (and he is also far too smart to fall for our tricks ). So instead we need to pierce the capsule and squeeze the paste out. It then needs to be mixed with olive oil (because it will block up his NG tube being so thick) and flushed down Lukas tube with very warm water. We do this for four pills a day.

The side affects of this drugs are fairly rough, not only to Luka but to us if we touch it as well. Luka is getting an extremely dry, cracked face and he is also having to avoid being in the sun as his skin is now super sensitive to sunburn. Not easy for such an outside kid!

The risk to us touching the acid is an increased chance of birth defects if we were to have more children in the future, and similar symptoms to what Luka is experiencing at the moment. This means the whole preparation needs to be done wearing gloves while trying to lose as little of the dose as possible.

As some of you may have read previously on the Facebook post, we got some unclear results from Luka's last PET-Scan. It showed a hotspot in his spine, upper thoracic area (around where his ribs attach).

The consultant has explained that while this could be the first sign of a relapse and some cancer cells growing, it could also be a small infection or fracture for some reason in that area. This is bloody scary news to be told and also quite challenging as to how we move forward with our mindset not knowing the true outcome from the scan.

Because of the retinoic acid Luka is taking, it will show a false reading if he were to get another scan done, so we need to wait at least six months until the medication is finished to get a clear answer.

In the meantime we are hoping to get a CT scan in six weeks time on the specific vertebrae with the chance it can give the consultants a clearer picture.

As for current mindset, after a long run last week all I could come up with was that thinking the worst outcome does not make us feel good one little bit. So for all our well-being’s sake we are soaking in the fact that we are able to be home in Te Anau for much more of this next block of treatment, and are definitely making the most of our time doing all of our favourite things.

Going on in Te Anau this week is the GodZone adventure race. The ultimate seven day continuous challenge involving mountain biking, trekking, packrafting, kayaking, orienteering, all on minimal sleep. This has definitely got us thinking back to when I last competed in the race, March 2023, as Luka would have had the tumour growing at this point.

This year though Luka is fully embracing the adventure race spirit too! Cheering the competitors on as they speed past on their bikes, getting excited with all the media helicopters flying everywhere and of course testing any available energy snacks, sports beans (jelly beans) are the favourite.

Toby and his Dad did a big volunteer stint working out on Lake Monowai being water safety and transporting media around for a packraft section. They stayed out two nights sleeping on the boat, cooking all their food and everything onboard.

Very cool to see GodZone from the opposite side this year.

We couldn’t be happier being home, catching up with friends, family, our dogs, and being surrounded by our home community, the lake and mountains. As full on as treatment can be this makes it all worth it.