On Wednesday the 4th of March we travelled to Melbourne again for Isla’s 25th EUA. We arrived at the hospital at around 9am and had a vision test scheduled with Sandra at 11:30, so we went to the zoo for a few hours. We met Sandra for the vision test, which was semi successful. Isla was a bit shy and didn’t say any of the names of the pictures on the cards, but Sandra managed to get a bit of information with some other tests and watching her eyes track different toys and images.
We had about an hour to kill before Isla had to be admitted so we went outside and played in the park/playground. Garreth and I snuck some lunch in one at a time, while hiding it from Isla, as she was fasting.
We headed up for admission at 1pm. The waiting room was packed this month and it took a while for us to be called through. A computer system was down in the hospital so they had to do a lot of things manually, which slowed everything down a little.
We were eventually called through and waited with the other retinoblastoma families while the nurses and doctors did all of their obs, paperwork, eyedrops etc. The anaesthetist spoke to us about a pre med again and suggested we try again with just one drug, clonidine. Isla was pretty tired by now as she hadn’t had a nap at all in the morning because we went to the zoo, so she fell asleep on Garreth while we waited. She had to get woken up a couple of times for eye drops to be administered, but she went back to sleep again afterwards, so that was good. Having said that, I don’t think I have ever mentioned that ‘eye drops’ – which sting like hell, consist of 3 doses of 2 different drops in each eye. They do them 3 (sometimes only 2) times, half an hour apart, 1 drop of each in each eye. A total of up to 12 stinging little drops all up. So for Isla to calm down after a round of drops and go back to sleep before the next dose is pretty amazing.
They eventually gave her the clonidine, but by the time they were ready to take her to theatre it had only had 40 minutes to start working. The anaesthetist said it takes at least 45mins-1hr to start working, so they wanted to wait a few more minutes. After about 10-15 minutes they came back and it did seem like it had started to kick in a little bit more. Garreth took Isla into theatre again and it did go better than the previous month, but the pre med probably still needed a little longer to work more effectively. The anaesthetist suggested trying to give it a little longer next time, or perhaps trying a different drug again.
The ophthalmologist, Dr James Elder, came to speak with us after the EUA. Everything looked good and there was nothing new. The tumour they found last month is now inert and no further treatment was required this month. He even mentioned the tumour in her right eye looked slightly better than last month. There was a small area that they still weren’t 100% sure about, but this is now looking more inert and stable. Without committing to anything 100% (as I don’t think he’s ever going to do that), he did say that he expects she will get to keep her right eye. He also suggested that if everything looks good next month, we might be able to go back to 8 weekly visits after that.
We also had a lengthy discussion about the doctor situation in Adelaide. When Isla was first diagnosed, Adelaide had an ophthalmologist who treated retinoblastoma, Dr Ashwin Mallipatna. Ashwin had to move to Brisbane for at least two years for work, but was hoping to return to Adelaide after that (June/July this year). James, our Melbourne ophthalmologist, mentioned they are in the process of training a new Dr, Dr David Sia, in Adelaide to treat retinoblastoma and that his training should be complete some time this year, he thought maybe mid 2020. At that point we would probably be transferred back into the SA system and wouldn’t have to fly to Melbourne anymore. James understood that we were probably now comfortable with him and the team in Melbourne and we might be nervous about being transferred again to a different/new doctor. We confirmed that this meant Ashwin wouldn’t be returning to Adelaide and James said that Ashwin had landed his dream job treating retinoblastoma (Rb) at The Hospital for Sick Children in Toronto, Canada where he did a lot of his Rb training.
The situation is similar in Brisbane. The doctor treating Rb has just retired, or is about to retire, and they are currently training someone new there. James has been training a new doctor to take over from him when he retires. So there is going to become a time soon that all the doctors treating Rb in Australia are quite new. To help make the most of the experienced doctors who are still around, they have started having a monthly nationwide video chat after every Melbourne Rb list. James was telling us this so we can rest assured that even when we transfer to a new doctor, he would still be reviewing all of Isla’s images from Melbourne. All Rb doctors in Australia will see all photos of every child’s EUA to discuss the findings and collaborate on treatment decisions.
Obviously this was reassuring, but also a little nerve wracking knowing that we will soon be dealing with a new Dr in a different system when we were now so used to the system in Melbourne. Fortunately the timing should be pretty good for Isla and she should be reasonably stable by the time we are transferred back to SA and hopefully wont have to have EUAs quite so regularly.
It was quite late by the time we got out of recovery so by the time we had some dinner and got to bed it was very late. Fortunately Isla just laid down and went to sleep as soon as we put her in her cot and we both went to bed at the same time. We had the usual early alarm the following morning for our taxi to the airport. Poor weather meant we had to wait in the plane on the runway for about 1hr before even taking off, so that made our 1hr flight seem a whole longer than normal, but we eventually made it home safely.
© Alison Davey 2021