Another week goes by...

Mummy's favourite picture of Daddy and I, Friday, Aug 28, 2008

Running around with lots and lots of energy in my favourite Spanish Football Shirt!

Being cheeky (not like Leo, at all!!!!!) I laid down on the floor and told Mummy to take a picture of me and this is the resulting photo.
Playing with one of my Grandads and showing him how to play properly with the Hotwheels!

Me and my new rugby ball!

Face and smile of angel...energy of a bull!! Leo is keeping us going for sure.

'I Love the Red Stuff!'

Just goes to show how 'normal' things become...Leo had his fourth blood transfusion since diagnosis yesterday and I didn't even think to mention it. The reason why I am writing about it now is because whoever's blood it was before clearly had bundles of energy...Leo has been jumping around, singing at anyone who will listen, playing constantly and sleeping little, unless under general anaesthetic and the double dose of sedative (which is now working a treat).

Before Leo had the blood yesterday we explained we had to go to the hospital a bit earlier for some more blood. He exclaimed he loved having blood as 'it's red, and I love the red stuff'. It also meant he could play for longer in the lovely hospital play-rooms! I know people who would run a mile from 'the red stuff' even if it is in a bag being fed into a vein! Good on you, Leo (and thank goodness blood is red..what would we do if it wasn't his favourite colour!)

Wierd that the day Leo had a further unit of blood, I was off in another hospital giving a blood sample to check on my post-operation problems! For sure though, once I am all clear from that, I will give blood as often as possible. I know and appreciate I've eulogised about this subject on numerous occasions now, but seeing how much life the odd unit of blood gives Leo, this is something I will always have on my mind in terms of what I can do in the future to help others who need blood, especially the brave and couragious children we see day-in, day-out on the wards at the Royal Marsden and Bristol Children's Hospital.

We saw Leo's consultant regarding his radiotherapy today and he was mighty impressed at Leo, in terms of the lack of radiation burns to his face and eyes. In the consultant's words, he was 'exceptionally pleased to see Leo as he is as he's doing really well'. If 'wow' had been in this doc's vocabulary, we would not have been surprised to hear it. It was that kind of positive meeting. Except for the two blood transfusions, antibiotics for a bug and the conjunctivitis (all of which are the be expected and relatively normal for kids with cancer and having radiotherapy to their head), Leo is doing really well, which is great to hear and helped us smile today.

In the back of my mind though, when docs say things like this, is how much of this language is to placate us parents who are worried sick, and how much does it really matter that Leo has no burns on his face...my query is how much local control is being done with the photon beams being directed at his brain? Will this whole six weeks really kill the cells in head and pressing against his brain? At the end of the day, is the radiotherapy doing it's job on the inside as any effects on the outside (like the conjunctivitis) can and will be dealt with accordingly. And what will happen in a few years once the other late effects kick in? No reason to let all this stuff keep us awake at night but speaking with other parents, you cannot help but constantly think about the things in the future which none if us have any control over.

Having said that, PJ and I are thinking about a positive future and even already now looking at work options and whether Leo should go to Montessori or another nursery once he's completed this phase of the protocol at the end of October / early November? Do we or don't we head back to Spain ASAP; although this one is already decided as at some point, Leo needs that affirmation of the fact he's back at King's College that all the medicines are over. For how long, who knows but the fact we'd be back there, would help Leo's mental health 500%.

Tomorrow's a new day and another radiotherapy session down; 17 down, just 13 to go.

Over Halfway There

So just over 50% down, and less than 50% to go for Leo's radiotherapy and he's doing great. I am not sure that PJ and I would be coping as well as he is. He's obviously getting all of our attention, 100% of the time which helps but then we also need to remember that he is only 3 and a half, and so needs as much emotional and physical support as we can possibly give. This week has seen Leo get more tired more often and he will not walk anywhere and so PJ and my arms are getting very strong indeed. Leo is 15.2 kg (same as when he was diagnosed 4 months ago) and so it's a good work out for us both. We knew he'd start getting tired due to the daily radiotherapy to his head and brain but also the general anaesthetic and now a large dose of sedative also; actually we'd both set our expectations that he'd be more tired and more dependent upon us before now, which is why we think he's coping pretty well. This excessive tiredness is likely to still happen but gradually over the next few weeks.

Thanks again for your messages and apologies for the delay in responding. Not only are the daily hospital visits very tiring and time consuming, but our phones do not have any reception and we've no internet access at the flat or the hospital!

We're also missing people from Bristol very much as Surrey feels like a world away but we'll soon be back. We appreciate people's lives continue whilst this whole thing is happening to us and yet we really appreciate it when you take time out to say hi and catch up with things, wherever you are in the world, so thanks again.

Tomorrow is a new day...