Wednesday brought mixed news.
Firstly there is good news in that the existing tumours appeared inactive; Mr Hungerford could not see any signs of new growth. However, there is a slight set-back -Fintan has three new small tumours in the peripheral of his right eye. We have been told that it is not entirely unexpected as the blood vessels get much smaller towards the edges of the retina, restricting the ingress of chemotherapy drugs. We had tried to prepare for such news, but this was still quite disappointing. Mr Hungerford chose to treat the new tumours whilst Fintan was under anaesthetic using cryotherapy, a technique of freezing the tumours with an extremely cold, pen-like instrument; in a similar way you might have a wart removed. They will repeat the treatment in four weeks whilst monitoring the development of the tumours.
On a more positive note, we met with the genetics counsellor and discussed the implications of Fintan's condition on the rest of the family. She explained to us that, even though Fintan has the hereditary form of retinoblastoma, it is more than likely that the faulty gene started in Fintan. This means that there is no more risk of our family member's children developing the disease than any other family. This does also mean that there is a 50% chance that Fintan will pass the faulty gene onto any children he may have. I would love to give you the full explanation as to how they came to this conclusion, but if you can remember any genetics from school you’ll appreciate it would be a very lengthy and confusing explanation!
Barnaby was tested in early January and it was confirmed he is not a carrier of Rb, so will not develop the condition (there was another very complex test which determined this -for my nerd friends reading this, it's a similar technique that's used for detecting computer viruses! -again, I don't think I should go into it now!) Archie will not be tested unless it is discovered the disease did not start in Fintan, as although he could still be a Rb carrier the condition rarely develops in children over the age of five.
I must stress that this is still all conjecture, as they are yet to find the mutant gene in Fintan's genetic code (in fairness there are over 72,000 different genes, and they have to check them all…by hand!). Although they have said that with the family history etc, they would be very, very surprised if they found the faulty gene in Fiona or me.
Anyway, Thursday...
On one hand, in a strangely semi-institutionalised way, it was kind of sad that it may have been our last visit to Oxford. It's a bit difficult to explain, and Fiona is more articulate with this, but when visiting the hospital, for a day you can hand Fintan and all the worry over to the doctors and nurses. On the other, it's a great relief to think, that for now at least, there will be only a few more weeks of taking temperatures, administering antibiotics, having nasal tubes re-fitted (three times already this time - thanks Fintan!) and hospital stays, etc., but more importantly, Fintan will not have to undergo such horrible treatment.
During this visit, Fintan was brilliant. He was as unfazed as ever, and hasn't really been that sick since. I think it may have been the support of his big brothers who came along this time, and if watching the TV, playing in the playroom and eating, eating and eating some more counts as support, they certainly gave it!
I think I have probably rattled on for long enough now, apologies for the length - believe me, this was the succinct version!
No comments:
Post a Comment