Isla had another vision test on Tuesday the 19th of January. By this stage the WCH had relaxed the COVID restrictions and I was able to take Zac with us to Isla’s appointments. Isla also had an appointment to see her oncologist the same day. It had been quite some time since we had seen our oncologist in person. Due to COVID and Isla having a sniffle every time an appointment came around; we’d had several appointments cancelled. We did have one video call just before Christmas, but that isn’t quite the same as seeing her in person.
I was looking forward to touching base with the oncologist as there were a couple of things that were worrying us a little. Isla’s RB1 gene mutation, along with some of her treatment, puts her at an increased risk of developing many other cancers in her lifetime. So there are many signs we need to be on the lookout for. One of the things the oncologist asks us about is clumsiness and falling over a lot. We had been noticing Isla falling/tripping over a lot lately and childcare actually mentioned it to us as well, so we were a little concerned about that. However, we do still believe she may have some soft tissue damage to her right ankle/knee after injuring it going down the slide in Melbourne. She also walks around on her tippy toes a LOT! Since we hardly ever get to see exactly what happens just before she falls over, it’s difficult to know what the cause might be. She could have some weakness in the joints following the slide injury, she would definitely be more unsteady when she is always dancing around on her tippy toes and doesn’t ever stand still!!! Not to mention simply being a toddler. However, we wanted to bring it up with the Dr to make sure we weren’t missing anything.
Our oncologist did a few little muscle group tests and watched Isla walk and run. She wasn’t overly concerned and suggested we perhaps see a paediatric physio to address the tippy toe walking. We have been on her back about putting her whole foot down when she walks for the last couple of months, but I’m definitely keen to see what a physio can do for her too.
Isla has mentioned that her right leg is sore on a couple of occasions too, which worried us a little as limb pain can be a sign of a bone tumour (another common secondary tumour to retinoblastoma). She has only said this a couple of times over a few months, it just happens to be the same leg each time. I try to locate the area of the pain as again, the right knee could be from the slide. I ask her a few more times throughout the day and the next day if her leg is still sore and she says no, so I assume the pain has gone. Again the oncologist wasn’t too worried about that unless it is constant. Of course toddlers can have growing pains as well, but it’s always stressful when she complains of something that could be a sign of a secondary tumour.
The other thing we wanted to run by her was a little mole on Isla’s finger which had grown quite large quite quickly. Skin cancer being another thing she is at a higher risk of, let alone being my daughter and pale with fair hair! Although I’m sure this is more of a risk for her later in life, I wanted to check that out while we were there also. The Dr took some photos of the mole and said she would refer us to dermatology for their opinion.
We then had another vision test with the orthoptist. Isla was amazing with this test!! She is much more comfortable Denise and really came out of her shell this time, which was great. Since Garreth took her to the previous vision test, it was great for me to see a huge improvement from the last time I took her when she barely said a word!
Denise was really happy with her overall vision and said it’s better than they would expect from a normal 3-year-old. She could see the equivalent to the second to bottom line on an adult eye chart, so that’s great.
The oncologist rang later that week to advise that we had an appointment with dermatology the following Thursday. She just wanted to call to let me know that the speed of that appointment wasn’t because they saw the photo and thought it looked really bad, but just because she was having her EUA the following day and if they did want to do anything it could be arranged under the same GA as her EUA.
So we saw the dermatologist on Thursday the 28th of January. The dermatologist got some background info and had a look at the mole. She wasn't overly concerned about the mole. She said it did look a little atypical with some irregularities around the edge, but that is fairly common in children when moles are still developing. She had a look at the rest of her body and suggested we would probably just review it again in 3 month’s time, but she would have a chat to the consultant dermatologist to confirm.
After chatting to the consultant it was decided that they would just remove it, seeing as she is at an increased risk and it would be quite simple to remove. Then we don’t need to worry about it. The dermatologist said she would send a referral to plastics to arrange having it removed. I mentioned what our oncologist had said last week about hoping to get it done during her EUA the following day, so she rang the plastics registrar to see if that would be possible. He said it should be fine and we were to get day surgery to call them again in the morning when we arrive to see if they can fit it in. So that sounded great and I was also given a plan of attack should it not go ahead the following day.
© Alison Davey 2021