Eyes Update

We met with the eye surgeon who has pretty much ducked all our questions such as would Leo be able to drive in the future (not sure), will his sight improve (not sure, but maybe), is the op risky (yes due to significant risk of infection due to dry eye and need for stitches in his eye), blah blah, blah. We have also been told that all being well with his right eye post-op, the surgeon will plan to do his left eye 3 months afterwards. So the first op is Weds, Jan 5th and then with 'normal' cataract ops, the second eye is done one week later however due to the risks with doing these ops on small, still growing eyes as well as the dry eye problems, they prefer to wait 3 months before scheduling the second eye.

Leo has also fallen down the stairs at school and hurt his leg, but shook him up quite a bit. So much so, he doesn't want to go downstairs at home without someone there as he says it's too blurry. We're not sure whether he just wasn't concentrating at school or whether his perception of depth is altered due to the cataracts.

It appears our initial fears over the lack of answers provided by the surgeon are unfounded - it led us to believe he wasn't sure what he was doing however, it's much more clear having sought out further info, that the surgeon literally cannot tell us if Leo will ever be allowed to drive and all our other fears because he doesn't know. His primary objective is to prevent Leo going blind. Without these operations, that's the absolute end result. So we've no option but to lead Leo back to the hospital in January for his operation - followed by eye drops every 30 minutes, 24/7 for at least a week post-op and then every hour, 24/7 for another week or more so as to try and prevent infection in the eye, which again leads to loss of sight. It's a strange one as normally when you sign a consent form for surgery or a general anaesthetic, as we've done over 70 times for Leo from May 2008, you usually have a fair idea of the outcome and associated risks. We don't in this case so we'll have to literally wait and see.

I also feel bad that I assumed cataracts ops are the same regardless of whether you're in your 80's or a child, however the more I've learned, the more I realise this was a foolish conclusion to come to. Last week we met another surgeon at the Eye Hospital after Leo's right eye swelled up in a similar way to when he was first diagnosed. Turned out it was eczema inside and on the outside of his upper and lower eyelid - which in itself is not an issue and is no reason to prevent the operation in January going ahead, but can slow the healing process and again increase risk of infection. I digress ... this particular surgeon we met said that he would want Leo's surgeon to do any op on his or any of his family if they needed it, and that he has even operated to remove cataracts on a two week old baby.

It was therefore good to meet this doctor despite the circumstances where PJ and I thought we were very much dealing with a relapse. How on earth do we then tell our son of nearly 6 years of age that he'd need to have the meds which make him sick again? I spent the night before we went to the A&E thinking through how we were going to tell our families and the new friends Leo has made at school - and so when the nurse at the Eye Hospital A&E told us to go get some lunch and come back in an hour, we both felt (but didn't tell each other) that they were rounding up the troops! Anyway, it was eczema not cancer so phew! And it would not have been great timing as my Uncle was taken very sick that same weekend so not sure our family could have coped with any more stress or bad news.

Chest x-ray on Monday, Dec 13th with check-up with his oncologist also, followed by three more visits to hospital (egg challenge, eye hospital checks and psychology / play therapy) before the day of his first operation in early January. Then his op and then another head MRI under a general anaesthetic at some point in January, plus weekly eye checks post-op so plenty going on for our brave boy.