At 14 months old Ava was developing completely normal with no health issues. We had no idea that we were going to be told our baby had cancer after a 3 day stay at hospital following Hand, Foot and Mouth.
Ava’s symptom was very mild: a slightly lazy eye. Looking back there were other symptoms but we were not educated on them. The other symptoms we later recognised were no red eye reflex in the affected eye, a white glow, change in iris colour and increase size of her eye due to the pressure the tumour was putting onto Ava’s eye.
Ava had multiple blood tests, ultra sounds on her eye, eye exams under anaesthetic and MRI’s they finally diagnosed
Ava with stage E retinoblastoma which is the most aggressive, it was almost an inch in size and took pretty much all of her eye. 10 days after diagnosis Ava had enucleation surgery to remove her eye and the tumour inside it to save her life.
Luckily for Ava the cancer had not travelled to her optic nerve so no chemotherapy was needed.
After 4 months we had the news Ava did not carry the RB1 gene which means it’s is very unlikely that Ava with get cancer in her seeing eye.
Ava is now cancer-free however her treatment/recovery is still ongoing, due to the aggressive treatment to cure her. Ava now wears a prosthetic eye and unfortunately that has not been an easy journey for Ava. She keeps getting infections and ulcers on her implant and has more surgery planned for the near future to remove part of her implant and replace it with fatty tissue.
Unfortunately the Drs could not pinpoint when the RB1 cells mutated and there is a chance that it happened while she was an embryo if that is the case Ava may carry the RB1 gene in her egg so when Ava is ready to have children there is a chance they could also get retinoblastoma.
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