It has all been pretty smooth sailing since Isla finished chemo and feels like there isn’t really a lot to report.
Note: In the previous update I mentioned having seen an MRI report, which staged Isla’s tumours as 1A (left eye) and 2B (right eye), and I thought the right eye would have actually been at least a 2C. After chatting to the oncologist I can now confirm that Isla’s right eye is actually a D. They don’t really use the number system. What is written on the MRI report is just the staging used by the radiologist. There are many different methods of staging, but I believe the letter classification in the 'International Classification for Intraocular Retinoblastoma' is what is used by oncology and Isla’s right eye is a D. I believe A is still correct for her left eye.
On 21/08/18 Isla’s blood counts were high enough for us to remove her central line. Her counts just had to be high enough to know that she wasn’t going to need a transfusion and would be able to fight an infection if she got one in the wound after removing the line.
YAY!! NO MORE CENTRAL LINE!!!
We had an EUA in Melbourne on 22 Aug. Isla had to fast for a little longer this time, as there are a few new babies on the list so she has been pushed down the list a little, but she did very well fasting.
The results of this EUA were good. No new tumours and everything looked pretty much the same as the last time, so they were happy with that. No laser or cryo was performed. They probably would have liked to see the large tumour in her right eye shrink a little more, but it hadn’t grown any bigger, so that’s ok.
We confirmed with the Dr that any new tumours from now on should be quite small and very treatable with laser/cryotherapy. Our main concern is just if the big tumour (or any of the other existing ones) or the ‘seeds’ (debris from large tumour) starts to regrow. I was under the impression that if this did happen, it would be quite likely that we would need to remove her eye. However, after speaking to the Dr he confirmed that there are a few other options to try first, which have often been quite successful. Those options being
1. Simply turning up the laser and using a higher temperature.
2. Intra-arterial chemotherapy – performed under angio through the femoral artery.
Without getting our hopes up too much, the Dr did give us the impression that he didn’t think it would be likely that we would have to remove Isla’s eye, which was a weight off our minds! Obviously there is no guarantee, but it’s nice to have some idea. He mentioned that things would have to be pretty aggressive and pretty bad for us to go down that path, so that’s great to know!
© Alison Davey 2021