Failing but Learning, All the Same!

Yesterday was Leo's final visit to the Royal Marsden Cancer Hospital in Sutton and as it turned out, we kind of failed him somewhat. We forgot how his experience of this hospital was for six weeks, day in, day out, the same routine every day. And so failed to spot that he'd think he had to have the medicines which made him sleep, and that he wouldn't need to have loads of things done to him whilst he was there. If we had, then we would not have had such issues getting him out of the place. He was determined he had to visit all three playrooms before having the anaesthetic in the RT suite.

It took a good half hour to even get him strapped into his car seat before he was calm and realised that yesterday was not going to be like all the other days. I guess PJ and I forget sometimes that we know what's going on and our relief that yesterday was going to be the final time we saw the Radiotherapy Consultant, that we failed to guide Leo through what was going to happen; and more importantly, what wasn't going to happen.

As it was, it was a useful meeting, if a little strange. He didn't tell us anything we didn't already know; except that is the photo-sensitivity that Leo's had (although it's getting better slowly) is nothing to do with the radiotherapy. It's more likely to be tumour related. At least we're in a city in Bristol where there's an Eye Hospital with plenty of specialists with an interest in Leo and his cancer, so that's good!

One thing which did get to us was when the doctor said 'if' Leo makes it to teenage years, he won't look like a 'freak' when he walks down the street. And that's pretty much word for word what he said. Now I know this is realistic and 'normal' doctor speak but it would have been nice to shield us somewhat from this. No matter how much charm some doctors have, and no matter how often they have to tell people bad things, do they sometimes not realise how what they say effects us?

I hate the ifs and buts of the future, but then I guess none of us know what's around the corner. We could get knocked down by a bus tomorrow; no-one really knows what the future holds, do they? The 'freak' comment was regarding the effects of the radiotherapy on the growth or lack thereof on Leo's skull, where the three fields of photon radiotherapy beams were directed.

It's true that one of our fears from the radiotherapy was the cosmetic effects to Leo's face and head, so at least we know he won't be desperately affected in the long term i.e. he won't look disfigured. But then I guess there'll always be questions that we, as his parents, will have to face. Yes, he's young and only three years old now, but the late effects such as infertility will need to be addressed. How often will we have to remind him that if he smokes, he will get cancer? End of story. No negotiations. No ifs or buts. What about the small scars he'll be left with on his chest from his Hickmann lines? Small, and practically won't be seen once they fade with time, but constant reminders all the same, and reminders which will lead to questions from an inquiring mind.

Well, no parent signs up for their child to have cancer, but PJ and I will do and have tried to do, all we can to protect Leo, and sometimes, like yesterday, we do get things wrong. We'll no doubt get things wrong again, but in the meantime, we hope he'll be okay; we pray he'll be okay...as we all do.

Tomorrow's a new day, and we hope there'll be a bed available for him to start his final chemotherapy as an in-patient. Seems there's plenty of children who have problems with their temperature at the moment and so the ward's pretty full.

We never thought we'd get to this point when he was diagnosed back in May, but here we are. In once piece, and praying for a future.