Sitting in the hospital waiting, so I thought I'd send out a bit of a group update.
Isla starts chemo today. She will have 6 courses of 3 different drugs over 2 days, 4 weeks apart. They are mixing up her drugs now. They will start administering them shortly via her little central line, in our room. It will take about 4 hours for her to receive all three drugs today and shouldn’t bother her too much. She receives a second dose of one of the drugs tomorrow over 1hr. Once the drugs have been delivered today, they will just make sure she is ok and we should be able to all spend the night at home again tonight (Isla and I have only stayed in over night once).
They are hoping to keep our room for us for tomorrow so we can have some privacy again for her second dose tomorrow. From then on we will be treated as an outpatient and Isla will receive her drugs in the oncology clinic - as opposed to on the ward where we are now (same area of the hospital, just the other side).
Then as long as she doesn’t get too sick and need to be admitted, we should be just coming back for a couple of days each month for blood tests prior to chemo, chemo and an examination under anesthesia (EUA) each month. The EUA is to check that the chemo is shrinking her tumours and they may also do some laser therapy at the same to help shrink/kill them.
I had said before that there is a tiny tumour in her left eye and a large one in her right eye. There is actually another small one in her right eye (3-4mm I think) which I forgot to mention.
She will also have a couple more MRIs along the way to check how it’s going. (April 2021 - MRI's are for surveillance of her eyes and also brain, as in trilateral retinoblastoma the pineal gland is also affected).
The side effects of the chemo are all pretty mild and temporary. Of course there is some risk of more serious side effects, but they are quite rare and we hope we won’t have to worry about them.
Most likely she will experience some nausea and constipation (which we have been given some drugs for). There is a reasonable risk of some temporary kidney damage and possible permanent hearing problems, but this usually just affects the ability to hear high frequencies.
Probably the biggest concern is just her blood counts dropping. She may have low red blood cells (which will just make her a bit lethargic), and she might need a transfusion. Her platelets could drop, so she could bleed/bruise more easily (again need a transfusion). Or her neutrophils (white blood cells) could drop, causing her to be more susceptible to infection.
So anyone around her will need a flu shot. We will need to be very careful with hand washing, alcohol gel etc and keep her out of busy public places - while not going too crazy (still go out for walks to the park and get fresh air etc...)
We're still waiting for a few more test results to confirm what other hurdles we are still faced with, but we are trying to take it one day at a time. We are feeling positive about her chemotherapy and we are hopeful that it doesn't cause too many issues for her and it gets rid of her tumours and ensures full vision in her left eye. We are not expecting her to have much vision in her right eye.
Everyone we have dealt with at Women's and Children's Hospital (WCH) so far has been amazing and we are really happy with how we and Isla have been handled. We are confident in the team looking after her and we are looking forward to being able to share a bit more positive news with you all as her treatment progresses. Isla has been amazing and we know if anyone can take on these nasty little tumours, it's her. We are hoping she comes out of this stronger and ready to face what ever else life throws at her.
We can't thank you all enough for your love, support and messages. It means the world to us at this difficult time.
Lots of love Garreth, Ali & Isla.
© Alison Davey 2021
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