17 March 2018 - How did we get here?
For those who might be wondering about Isla’s diagnosis and how we went from just starting to get the hang of this parenting thing, to being in hospital and experiencing the worst long weekend of our lives; here it is. I had noticed Isla’s right pupil looked a little different quite early on. Pretty much the first week we got home after giving birth, in low light, at some angles (mainly in her in her room with a dim lamp on) I started noticing her pupil looking a little different every now and then. Of course I googled it and found nothing and didn’t think too much of it. I continued to notice it and continued to wonder and worry about it. I mentioned it to our paediatrician at her 6 week check (and Garreth is sure I mentioned it at her 1 week check also) that her pupil looked different. I described it as looking more
‘transparent’ and ‘browny-red’, whereas the left one just looked solid black. He said this was normal.
I felt that I had done all I could by mentioning it to the paediatrician, but since he didn’t explain WHY this was ‘normal’ it continued to bug me and I continued to google it, as I started noticing it more and more often. I began being able to notice it in any light, all of the time. So back to google I go, typing in different things, hoping to find it’s due some normal development of the eye and it will go away with time. I kept getting results about babies with different coloured IRIS's and struggled to find anything about the pupil. I think I eventually typed something like 'pupil looks transparent’. One of the search results was titled ‘Retinoblastoma’. I typed retinoblastoma into google images and it came up with a heap of pictures, some very confronting, some that looked quite similar to Isla’s eyes. Now I started to worry. I remained optimistic, thinking I’m sure it’s not that, but we need to get this checked out.
Garreth was in Mildura for work, so I sent him a screenshot of what I found on google images and told him I am taking her to the GP that morning. I showed the GP what I was concerned about. I mentioned I had told our paediatrician, but it is becoming more and more obvious and I think it needs to be looked at. I wasn’t sure if I should be going back to our paediatrician or an optometrist or ophthalmologist. The GP suggested probably an ophthalmologist and gave me a referral.
I called to make an appointment with the ophthalmologist and they asked me to email my referral through to them, as they triage their appointments and they would call me back to make a time. I did that Thursday morning along with a description of what I was concerned about in Isla’s eye.
I did a little more reading about retinoblastoma and found some information about parents diagnosing it with flash photography. Basically we all have a ‘red reflex’ when light hits our retina, this is what causes red eyes in photos with a flash. When the retina is detached, this red reflex does not occur and the pupil appears more ‘white’ in photos. Unfortunately, since I had seen a difference in Isla’s pupils in natural light where it doesn't look ‘white’, I would never have described her pupil as looking ‘white’. This is the key word that Dr’s would be looking for to make them think retinoblastoma. So I took a few photos of Isla with a flash (we generally don’t use a flash when taking photos) and managed to get some photos very similar to what comes up with you type retinoblastoma into google images. I did send one of these photos to the ophthalmologist following my referral email, but I later noticed that our computer lost internet and that email with the photo never actually went through.
Luckily our paediatrician is very text happy and always told us to send him a text if we have any questions and he would get back to us as soon as he can. So I thought I would just text him a copy of the photo I had taken along with an update that I had been to the GP and have been referred to an ophthalmologist. He got back to me later that afternoon and mentioned he was at Flinders Hospital for another 45minutes and asked how quickly we could get there. So we met him at Flinders at 6.30pm on Thursday.
When we got there he apologised and said he didn’t realise I meant that her pupil looked white. I said I would have never referred to it as being ‘white’ as that’s not what I noticed in natural light. After having a look he called the Womens and Childrens Hospital and gave us a referral to see an ophthalmologist in the eye clinic the next morning. The ophthalmologist, Dr Ashwin Mallipatna, is a paediatric specialist and is the only doctor in South Australia who deals with retinoblastoma.
We saw the ophthalmologist at the WCH on Friday morning. They put drops in Isla’s eyes to dilate her pupils and had a good look at her eyes. She then had an ultrasound of both eyes. From that she was diagnosed with retinoblastoma.
The next day (Saturday) she had her general anaesthetic (GA) to enable them to do:
an examination under anesthesia (EUA) - (April 2021 - where they examine her eyes and take photos of the retina)
MRI of her orbits, brain and spinal cord (to ensure the cancer hadn’t spread beyond her eyes)
Lumbar puncture
Bone marrow biopsy
And insert her central line
After getting her back from her procedures Saturday afternoon she did look quite pale, but she had a feed straight away and was her smiley bubbly self again in no time. Isla and I stayed in WCH overnight Saturday night.
Sunday was a quite day in hospital. Both our parents arrived that day and we met with a few different doctors and people in the hospital discussing Isla’s treatment. We had the night at home Sunday night and came back in and started chemo on Monday (date of my first big update).
They decided to keep us in Monday night to ensure Isla was feeding ok after her first lot of chemo, but I think it was just easier to keep our room for us if we didn’t go home again. They had already allowed us all to go home a couple of times while Isla was still ‘admitted’.
Tuesday afternoon Isla received her second dose of one of the chemo drugs and slept through that. We met with the geneticist to discuss our family tree and blood tests to work out where the gene defect started. Isla’s blood has been taken for that test, but results will take a few weeks. We will both likely be tested too and the ophthalmologist will probably also want to look at both of our eyes. Since there is no family history of retinoblastoma, but Isla does have the genetic type, it is quite likely that the gene defect started with her. We were discharged on Tuesday afternoon.
Since we have been home Isla has been doing well. She doesn’t seem to be too affected by the chemo. There are certainly some challenges we are dealing with at home, but nowhere near as bad as we were originally expecting.
Bath time has become a little more tricky, trying to keep her central line clean and dry. We have to change the band-aids on her back from her lumbar puncture and bone marrow biopsy (tiny scratches, almost healed) and she is NOT A FAN of that!!! Who ever decided on the ‘cherry vanilla’ flavour for panadol obviously doesn’t have babies! She hates both panadol and her anti nausea medication, but hasn’t had to have too much of those. We also have to rinse her mouth with antiseptic mouthwash, as she could develop sores in her mouth and digestive tract. The mouthwash just helps keep bacteria out of her mouth if she does develop any sores. Unfortunately an 11-week-old baby isn’t proficient in gargling and spitting out mouthwash, so that involves shoving a big mouthwash dipped swab in her mouth twice a day, which doesn’t particularly impress her either. She also has to take antibiotics twice a week for the duration of her chemo (because of her reduced immunity), which we started today. She doesn’t love it, but doesn’t seem to hate it quite as much as her other medicine. Banana flavour must be a bit better than cherry vanilla... We will also be making weekly trips to the WCH for blood tests and dressing changes for the duration of her chemo.
Apart from all those nasty things we have to do to her at home (which are pretty manageable), she’s been pretty good. Most days she doesn’t sleep a lot during the day and she gets a bit cranky sometimes, but it’s hard to tell what’s from the chemo and what’s just normal baby stuff. We haven’t noticed a dramatic change in her, so hopefully it’s not bothering her too much. Once we do get her to sleep at night, she is still sleeping through the night pretty well. Unfortunately though, we now have to wake her to change her nappy in the night (just for 1 week after chemo). The chemo drugs are excreted through her wee and they don’t want that sitting on her skin for too long in her nappy. We also have to wear gloves when changing her nappy for 1 week after chemo.
We go back to WCH on Tuesday for blood tests to see how her levels are going and catch up with the oncologist to see how she is going after her first treatment. Her chemo can be adjusted if it needs to be if she is struggling or if her blood counts are dropping too much. Hopefully at that stage, some of the other test results will be back and we will be able to confirm that the cancer is definitely just contained in the eye, which is what we are hoping/expecting. Then as far as we know, I think we just carry on and have some recovery time until Isla’s next round of chemo and tests around the 9th of April. We believe the effects of chemo should only last a week or so, so after Tuesday next week it should be pretty smooth sailing until next round of chemo.
Fingers crossed things continue to go well from here and we just need to get on with treatment and getting Isla better. If she handles all of her treatments as well as she has handled the first one we will be doing great. We just have to hope she doesn’t catch any nasty infections while her immunity is low, the treatment works well and our outstanding test results don’t throw any more bad news our way.
Thanks again for all of your love and support.
Ali, Garreth & Isla
© Alison Davey 2021