We were expecting to have another EUA at the WCH with Dr Sia around the 17th of September. As we hadn’t heard from anyone to confirm an appointment day and time, I called to hospital to find out when this would be happening. I was told it was booked for the 8th of October (almost 3 months after Isla’s last EUA). This was fine, except we had been looking forward to seeing someone soon as we were becoming increasingly concerned that Isla’s right eye may be shrinking. This is something that Dr Elder in Melbourne mentioned could happen due to the intense intra-arterial treatment. The eye is generally very unhealthy, so pressure in the eye could increase and cause her pain or it could decrease and lose its shape/shrink. This could happen now, in 5 years time, 10 years time, 20 years time. There appears to be a little bit of gap in the corner of her eye between the eyeball and eyelid, so we were worried that her eyeball could be shrinking. We had noticed this for some time, but it seemed to be getting a little more obvious, so we were keen to see someone reasonably soon to ask whether that is anything to be worried about.
Appearance of sunken/shrinking eyeball
I received an email from Sandra (Melbourne) regarding a retinoblastoma conference and in my reply to her I mentioned the date of Isla’s next EUA and that we were looking forward to seeing someone soon to ask about her eye. I asked whether she thought that was anything to worry about and if we should be trying to see anyone sooner. She had been emailing Dr Sia on another matter so she mentioned my concerns to him and asked him to call me. I received a call from Dr Sia that night. He mentioned he was actually expecting to see us the previous week, but it had not been booked in. He asked me to email through some photos of Isla’s eye, along with some older ones to compare.
Going back through our photos it became apparent that it had been that way for quite a while, it has just maybe got a little more obvious in recent weeks. He said he would look at the photos and if he thought we needed to be seen he would book us in to the eye clinic that week, otherwise he would have a look and measure the pressure of her eyes at her next EUA. He reassured me that if I ever have any questions or concerns I can call the eye clinic and leave a message for him, or email or call him now that I have his email address and mobile number. This was really reassuring, as I have never had that kind of relationship with anyone at the WCH. After receiving my photos, Dr Sia didn’t think we needed to come into the eye clinic, he would have a look at it during her next EUA.
I received a call later that week from the WCH saying Isla’s EUA has been moved to Friday the 25th of September (2 weeks earlier than it was previously booked). We weren’t entirely sure if this meant Dr Sia had changed his mind about needing to see us sooner or if it was just due to scheduling.
Since we didn’t really want to drag Zac around the hospital all day as well as Isla, Garreth took the day off again so he could take her. Admission time was 11am so Zac and I dropped Garreth and Isla at the WCH just before 11. Soon after admission, Garreth was advised that Isla was first on the list (starting at 1pm). Isla did an amazing job with her eye drops (to dilate her pupils) and she didn’t cry at all! She did even better with her second lot of drops and blinked them in herself! Just after 1pm Garreth found out the list had been changed and Isla was now last on the list. Isla had been fasting since 7am. She eventually went in at about 3.30pm. She had no pre-med again and did really well with the gas mask. Garreth just sat her on his lap and talked to her and she sat there quietly breathing in the gas until she went off to sleep.
She was out at around 4.30pm. Everything looked good. There were no new tumours and all previously treated tumours appeared inert and stable. Dr Sia mentioned her right eye does look a little sunken, but the pressure in her right eye is the same as her left, so that’s good sign. He said sometimes the eye sinks into the socket a little as the muscles behind the eye shrink a little. I imagine this is probably since she has no vision in that eye, her eyeball doesn’t move around very much. Muscle atrophy (wasting) occurs with infrequent use, which increases space in the eye socket and the eyeball sinks in a little. Enophthalmos – posterior displacement of the eye.
Enophthalmos example – NOT ISLA
Isolated enophthalmos: An uncommon gateway to orbital tumors in pediatrics: 9 month-old female presenting with isolated enophthalmos as the unique sign of a metastatic orbital tumor: A case report - Scientific Figure on ResearchGate. Available from: https://www.researchgate.net/figure/CT-Scan-showing-enophthalmos-of-the-right-eye-and-the-causal-neoplastic-process-a-CT_fig1_266152637 [accessed 4 May, 2021]
Isla woke up in recovery and had something to eat and drink in day surgery before we came back in to pick them up. The nurse told Garreth she has never seen anyone Isla’s age so chilled out with it all. Later that evening she told me she ‘had a good day at hospital’.
© Alison Davey 2021