Wednesday 25 July we headed off to Melbourne again for EUA #6 (4th time in Melbourne). It was slightly trickier this time, as Isla’s fasting time has increased, as she is over 6 months old. We are still on an early flight, so we just scrape in being able to give her a breastfeed on the plane as we take off. This usually puts her to sleep, which it did again. I usually feed her again during the landing, in case the pressure hurts her ears, but we couldn’t do that this time as she had started fasting, but she was fine.
We have managed to get the same bubs taxi driver every trip between the airport and hospital (except one), which is lovely. We did our usual bag drop at the family hub; walk to the cafe down the road for breakfast, get another takeaway coffee and go for a walk so Isla has a sleep.
Waiting to go in for EUA – tired and hungry
We received good news again after this EUA, no new tumours and just some more laser treatment to the remaining tumour in her right eye. There was not a lot of change in that tumour since last time. At this stage, we’re not entirely sure if this is a good or bad thing. Possibly, there isn’t a lot of change because it is no longer responding to the treatment, or maybe there isn’t a lot of change because it is as small as it is going to get from the chemo. The real test will be in 8 weeks time when there has been no chemotherapy to see if things start growing again. As I have mentioned before, the chemo could be keeping a lid on the tumours and once that stops, things could start growing again.
I mentioned in the last update that Isla’s right eye had a tiny dip (coloboma) in the iris and we weren’t sure what the cause of this was and whether it was likely to get better or worse. The Dr confirmed this time that he must have caught (or ‘pinged’ if we quote his words ;-)) the iris with the laser during one of her treatments. So I believe that means it won’t get any better or worse. It is most noticeable when Isla’s pupils are contracted and very small because the size of the little dip doesn’t change, so it looks bigger in comparison to the size of the pupil. When her pupil is dilated and very large, it just looks like a tiny little dip in her pupil. They put eye drops in before every EUA to dilate the pupil as much as they can, to keep the iris out of the way (and to be able to see into the eye), but obviously some healthy parts of the eye may also get damaged while trying to kill the tumour.
‘pinged’ iris
You can also see that the right pupil is slightly larger.
When we arrived to Isla in recovery this time, she hadn’t woken up yet and was all snuggled up in the heat blanket, as her temperature had been a little low. The nurse eventually had to wake her up and we gave her a feed. She woke up reasonably happy and was smiling and giggling again before too long. The Dr was going to come and see us again and show us the pictures following this EUA. However, by the time the nurses were happy for us to go, we just wanted to get out of there, so we told them to let him know we were happy not to worry this time as there hadn’t been much change since last month.
We had a bit of a chat with another family last month, who were there again this month and we are starting to get to know a few of the other families, doctors and nurses a little better. It really is like a little retinoblastoma family in Melbourne, which is really nice.
We headed back to our room and got Isla down for a nap. Since we have now sampled pretty much all of the food options in the hospital and across the road (all of which are pretty average), we ventured a little further this time thanks to uber eats ;-) and had a pub meal picnic on the floor of our room, which was much nicer! We had a TV in our room on the very first trip, but for some reason they have been taken away ever since then (April 2021 - Since worked out that only the 1 room has a tv). There is a communal kitchen/lounge where there is a TV, but Isla is usually asleep in our room so we can’t really leave. Isla woke up after dinner this time, so we took her out to the lounge and had a cuppa tea and choccie party on the couch and watched masterchef, so that was fun :-D
Isla’s Tuesday (before Melbourne) bloods were high enough again to give us the go ahead for chemo straight away when we got back Thursday morning. Garreth’s parents were here again and did the airport pick up and took us straight to the WCH. Chemo ran smoothly over the Thursday and Friday and we were very excited to finish her last round of chemo on Friday afternoon!!! We also had one of our favourite nurses that day, so it was nice to finish with her.
No more chemo!!! Woohoo!!!
As we expected, Isla did develop the same rash again after the first day of chemo and it was slightly worse than last month. It doesn’t seem to bother her though and didn’t last very long at all. Her skin is just quite dry now, but the redness is all gone.
Rash
We forgot to give Isla her anti nausea medication again and she reminded me by projectile vomiting all over me after her 10pm feed....... She did vomit a couple more times in the days following chemo, which has never really happened before. So the effects of the chemo probably were starting to build up. Apart from that, everything ran smoothly and she has now completed her course of chemotherapy!!! Wooohooo!!!
We caught up briefly with our consultant oncologist on Friday and we have a meeting scheduled with her next week to discuss what’s next. We did have a quick chat today and we know that Isla’s central line can hopefully come out in 3 or 4 weeks, once she has recovered from her last round of chemo. So that’s a huge and exciting step! We also confirmed that we will be able to commence immunisations again in about 6 months time. The time between each immunisation shouldn’t need to be as long as the normal baby immunisation schedule, so hopefully Isla will be back up to date with her immunisations within the next year or so, which will be fantastic! We will know more about the long-term plan after our meeting, but these were the two things we were keen to find out about immediately following her last chemo treatment.
Thanks again for all of your continued love and support.
Love Garreth, Ali & Isla
© Alison Davey 2021