Our oncologist rang a few days after Isla’s EUA, firstly to confirm that the EUA went well, with both eyes stable. Also to let us know she had the pathology results of Isla’s mole. It was a benign, rare type of mole called an atypical spitz nevus. These usually affect young people and they can sometimes look and act like a melanoma. They are often removed as a precaution, so it probably was good to get this one removed so we don’t need to worry about it. She will probably have regular skin checks with dermatology now, just to be safe. They would usually do this in the future anyway, but might just bring it forward for Isla now.
May 2021 - this was later downgraded to a CLASSIC spitz nevus, which is perfectly harmless. So Isla wont be required to have regular skin checks until she is a little older.
The Dr mentioned that a new paper has been published suggesting kids with the Rb1 gene mutation should continue surveillance MRI’s until the age of 5 (we had finished doing these), so we are going to start doing 6 monthly MRI’s again.
The oncologist asked if we had heard from the physio at all, which we hadn’t. In that case she suggested going to a private paediatric physio and she gave me a name to contact.
- I have since completed the ‘book online’ form for the private physio, but heard nothing after >1week. Just as I was about to follow them up about an appointment, I received an appointment letter from the WCH physio, so I guess we will just wait and see them there.
She also mentioned Isla’s neutrophils were a little low in her blood test during her EUA. They keep an eye on this as there is a risk of leukemia following retinoblastoma. They like neutrophils to be at least 1.5 and hers were 1.39. She asked if Isla had been unwell lately, but I said she has seemed fine. So she said she would repeat the bloods when we are in for an MRI.
© Alison Davey 2021
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