On Wednesday 30 May we had our second trip to Melbourne for the EUA. It was a little easier this time, as we knew where we were going and what we were doing. However, again Isla’s neutrophils (for fighting infection) were too low on Tuesday (0.8) to give us the go ahead to start chemo straight away when we returned on Thursday, but that had no effect on Melbourne.
Isla was brilliant on the plane again and we arrived in Melbourne early in the morning. Our room wasn’t available early this time so we went to the ‘parent hub’, which is a fantastic facility in the hospital where we can leave our luggage in a safe place, there are chairs & tables, couches, a kids play area, a kitchen, toilets, private rooms with change tables & feeding chairs, computers, books/magazines and even a quite room that you can book to have a nap in!! We dropped our luggage here and gave Isla a feed before she had to start fasting and then went for a walk and found a nice cafe down the road to have a coffee and some breakfast. We then went for a walk around the lovely gardens that surround the Royal Children’s Hospital.
We went into the day surgery area at 12noon and Isla was again the first patient on the afternoon list and she went in around 1.30pm. They told us that it would be at least an hour as they knew they were likely going to do some laser and cryotherapy to the large tumours in her right eye. It was probably a little over an hour later that the Doctor came out the chat to us.
Again they found no new tumours, which is great news. They did no treatment to the left eye as it looks like the two small tumours in that eye are now inactive. They did some laser treatment to the large tumour in the right eye. They also mentioned the large tumour having ‘viable subretinal seeds’ – so basically active tumour growth on the back of the retina. This was lasered with a good result. After Isla’s initial MRI they were querying whether the tumour had encroached the choroid of the right eye, which is the highly vascular layer behind the retina. I was always concerned about this, as tumour in the blood vessels = fast tracked spreading. Our original ophthalmologist didn’t think he could see any sign of the tumour in the choroid after his examinations so he was confident it hadn’t reached that layer, he mentioned they had just seen some ‘brightness’ on the MRI in the choroid. I recently brought that up again with our oncologist and she said they spoke about that in a meeting and looked at it from many different angles (I assume probably both the MRI images and the EUA photos) and they were all quite confident that it wasn’t in the choroid. So after this EUA with the ‘subretinal seeds’, I had a brief chat with one of the oncologists and I am pretty comfortable now that the doubt surrounding the choroid is probably explained by these subretinal seeds. So basically there was some tumour growth on the ‘back’ of the retina that hadn’t actually penetrated the next layer of the eye – and this area of tumour has now been successfully lasered.
Anatomy to show Choroid Layer
File:Three Internal chambers of the Eye.png: Artwork by Holly Fischerderivative work: Pixelsquid - This file was derived from: Three Internal chambers of the Eye.png:, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=99491006
They also did some cryotherapy to the smaller tumour in the right eye. From what I understand, this involves placing a small probe on the outside of the eye (sclera) closest to the cancer cells. Nothing actually penetrates the eyeball. The tip of the probe is very cold and the surgeon repeatedly (3 times in this case) freezes and thaws the cancer cells (and I imagine the eye’s healthy cells in its path), effectively killing those cells. Cryotherapy is best used to treat small anterior tumours.
The cryotherapy, being a bit more invasive than laser, has a few more side effects. This time in recovery, and for a few days following, Isla’s eye looked a little droopy and puffy. We had to put drops in her right eye three times a day for a week following the cryo. She didn’t love that, but handled it very well. Isla wasn’t even crying when we got to her in recovery this time (possibly still a bit drugged out). Actually, she didn’t cry the whole time in Melbourne. Not until Thursday afternoon back in Adelaide when we were heading home from WCH after being there all day and having chemo. How well she handles it all definitely makes it a lot easier on us! After an hour or so in recovery and having a decent feed we were able to head back to our room.
Puffy eye the morning after cryotherapy.
We also found out this time that because of the way the retina grows, Isla shouldn’t get any more tumours in her left eye that will affect her vision. There is only a risk of tumours developing while the retina is growing (until roughly the age of 5). The retina develops from the inside out. The central part of the retina is the most important part for vision and we know this part is already developed in Isla’s left eye. That is not to say another tumour can’t pop up in the periphery and grow into that area which may affect her vision. Other factors such as future treatments can still damage her vision in the left eye, but it is certainly good to know that no more tumours should be popping up in the most important part of her left retina.
It was another early morning on Thursday to get to the airport and return to Adelaide. Isla was fantastic on the plane again. Garreth’s parents were staying at our house to help out during Isla’s treatment, so they came to the airport to pick us up so we could head straight to WCH Thursday morning. We arrived at WCH around 10am and had to have a blood test again to make sure her neutrophils were up to at least 1 before starting chemo. Blood results have been taking a long time lately and it wasn’t until about 2pm that they came in to hook up her chemo as her neutrophil results had come back at 6.2. Chemo ran pretty smoothly that afternoon and we were in again on Friday afternoon for the second dose.
We have medicine at home to help with nausea, which we don’t always give her, as she seems to be ok. However, on Saturday morning she did a big power spew in our bed so it might have been getting to her a little more this time and we did have to give her some of the . The doctors did say the last few rounds of chemo will be the hardest as the effects start to build up and become worse. Having said that, her first tooth made an appearance on Monday, so she may have also been feeling yucky due to that.
She is going well now, but even a couple of weeks later her right eyelid is still slightly more droopy than the left, particularly when she is tired. We have also noticed lately that her right pupil is a little larger than the left most of the time, but it does still dilate and constrict. Whether this is an effect of the cryotherapy or just the cancer itself I’m not sure. Also, just over the last couple of days we have also noticed a tiny little coloboma (so google says) of the iris in the right eye. We haven’t spoken to any doctors about this yet and don’t know the cause. At this stage it is only teeny tiny and barely noticeable.
Coloboma Example (more exaggerated than Isla's)
This file was derived from: Coloboma of the iris.JPG, CC BY 3.0, https://en.wikipedia.org/wiki/Coloboma
While her eyes are generally tracking quite well, the right one is a little slow/lazy sometimes (again worse when she’s tired). We have started to notice a little more inward turn of the right eye, which is quite common in retinoblastoma. This could get worse over time and can be corrected in the future by strengthening the eye muscles with the use of an eye patch or with surgery. I will ask the doctors if there are any eye exercises we can be doing with her now to help correct/minimise this.
That’s it for now.
Ali, Garreth & Isla.xxx
Photo with no flash.
Photo with a flash.
'know the glow'
Does her own chlorhex mouthwash now....
© Alison Davey 2021