Devastating News

We were back at the Royal London Hospital for Fintan's post melphalan EUA yesterday and unfortunately the news was not good.  Although the area that was initially being treated by the intra-arterial chemotherapy had responded, there was now extensive new tumour activity spreading around the lens of the eye.  The location of these new tumours has a limited blood supply and makes treating it with chemotherapy drugs or any other form of treatment very difficult and, having had everything going thrown at this eye and it still relapsing, has left the consultants with no option but to enucleate (remove) the eye.

They will be consulting a Retinoblastoma team in Philadelphia for a second opinion, but we are assuming this will be just to confirm enucleation is the right course of action.  The tumour activity is very aggressive and the eye needs to be removed as soon as possible and Fintan is provisionally booked in for his enucleation next Wednesday (10 April).

                                                          Big Smiles for the Eye Test

Due to Fintan having suffered with diarrhoea since last Friday, but not seeming unwell in any other way, we had contacted the hospital on Tuesday in case they wanted to allocate him a side room; however, they wanted him assessed at our local hospital and informed us that he would not be allowed to undergo his EUA.  Wycombe Hospital were happy that he was not unwell, took a stool sample and allowed him home.  My gut instinct was that we could not wait another week for Fintan's EUA and we managed to make arrangements for him to be seen as planned, just arriving at the ward a lot later than normal, being escorted straight to an isolation cubicle and Fintan being treated as highly infectious!

Despite the devastating news, I am glad we insisted on being seen this week as another 7 days would have given the tumours more time to spread.  Once the eye has been removed, it will be examined in the laboratory and if there is any sign the cancer has spread beyond a certain point in the eye precautionary systemic chemotherapy may be necessary - he had this after the removal of his right eye.

Fintan has taken the news of losing his sight with amazing maturity; he seems to understand that he will no longer be able to see and has already started talking about a guide dog, white stick and learning to read braille.  No doubt, with his strength of character, he will deal with this testing time better than the rest of us put together.

We have managed to book a last minute treat to Disneyland Paris for Fintan and the boys - just hope the weather improves!