Cycle 7 of 9

It's all a bit wierd being here at the Marsden instead of Bristol and it almost feels like we're starting all over again. In Bristol, we know what the nurses require from us in terms of keeping a check on what Leo drinks and eats, his nappies for weighing, also check for things going in and out and making sure he is not getting dehydrated ... which would be pretty impossible anyway as the amount of fluids they run through for the first 24 hours and then the second day for 18 hours would prevent any dehydration. We also know where things are such as sick bowls, rubber gloves and which nurse is the one to ask for x, y and z... In Bristol they also do no put up the Ifosfimide (one of the chemo drugs) overnight as it can cause swelling of the brain and so is quite dangerous, but because we're in a cancer hospital, they are able to do this anytime as they have more chemo trained nurses on overnight.

This therefore means that Leo's main chemo did not start until nearly midnight last night. I'd already asked the doctors and nurses here to ensure Leo has all three lots of anti-sickness and have them staggered so as he's always covered (whereas in Bristol they already know all about how sick Leo gets). I'd also warned them (in a nice way, hopefully not a neurotic mum way!) that as soon as the Ifosfimide goes up and he's connected to it, he'll be sick. The nurse thought he was too young for this to happen as it normally happens in adults when they know they're being given toxic stuff. Lo and behold, Leo was asleep so did not know the Ifos had gone up and he was very sick. The nurses had never seen this before and especially in a child so young.

We had been hoping to have a 'normal' day tomorrow once chemo finished and Leo was discharged, but he now won't leave here until about 6 or 7pm tomorrow so only a few hours overnight until we're back again for four more and the final sessions of radiotherapy.

Leo is such an inspiration. I know we hear this type of glib stuff said about people all the time these days, but even when he's being sick, he doesn't cry or feel sorry for himself! I guess being 3 and a half helps! He knows each day when he's in hospital that the meds make him really sick and yet he just gets on with it. Again, his age helps. But he could so easily be a complete handful every day, all day and he's not...and that's the inspiring bit. He even cheers when we arrive at the hospital. I also cheer inside, as each day we're here, each day we're nearing the end of this current treatment.

I know he's not worrying about whether the cancer comes back, although I'm sure he knows this could be the case as he listens to everything PJ and I discuss together, and with the doctors. He's also not thinking about whether to opt for maintenance chemo, although I just wonder, you know... him pulling out the NG tube and saying 'I told you I didn't want one', may well be his message to us that he knows full well what we're considering after this protocol and perhaps he's had enough. No NG tube, no maintenance chemo. At least, that's what I think the docs have in mind anyway in six weeks time once this protocol is done. We'll know more about it all when we get back to more familiar ground in Bristol. It's not up to Leo what happens next but he is the one this is all happening to, and so we'll need to explain and see what happens next.

This is chemo cycle 7 out of 9 for this protocol so who knows what's around the corner?

Tomorrow's a new day...

Another Week...Another Cycle...

So Leo starts another chemo cycle today after a very difficult week. Luckily, we're here in Surrey at the Royal Marsden for the chemo so we won't have a repeat of the four hour journey on a Friday evening like last time around. I cannot believe this is his 7th chemo cycle and we're only now six weeks from the end of this protocol. We're also only five sessions from the end of his radiotherapy so all being well, we should be back in Bristol soon, which in a way will be fab but also quite scary. Fab because we'll be back in our own beds and house, but also scary as it signifies the near-end of this part of his treatment and reality has to come back into our lives. We've been living in a bubble the last few months and if we decide not to continue his treatment with the maintenance chemo protocol, then the bubble will be burst and real life in the UK will hit home.

Leo's drinking has gone off the mark as he gave up eating food properly two months ago. His infected eye was also looking worse this week, so we allowed doctors to put a naso-gastric tube down Leo's nose yesterday for oral meds to be administered. Despite help from the play therapist, the nurses, and PJ and I, Leo was not a happy boy about it at all.

Before he had his general anaesthetic yesterday, he even said, 'no medicines in my mouth or nose, just medicines in my wigglies', and he wasn't talking to anyone in particular, but he knew we were listening. Then when he woke up, he repeatedly screamed, 'I told you I didn't want it'. To nobodies surprise, he pulled the tube out which was upsetting but not crucial as the doctors have decided to try him on a different eye ointment.

This weekend's chemo would have been upset by the oral anti-biotics down his tube, and then surprise, surprise, Leo started drinking milk again last night, and all night!! He'll probably still need a tube put back down next week whilst he's still able to have it under a general, as a few weeks after this radiotherapy finishes, he may get so tired and lethargic, his appetite will go off again. And even if he only stays on milk, as he has been the last eight weeks, he's not getting anything more in terms of vitamins or minerals. We're fortunate his weight is the same now as it was when he was diagnosed but it's the vitamins and minerals he's missing out on which can make him poorly later on.

We've been able to book a week away thanks for Clic Sargent who have a house in Scotland for families of children with cancer. We're going for New Year which hopefully means we can start 2009 on a positive start, alongside other families who will be feeling the same way. We never knew what 2008 would hold in store for us, never mind 2009, but at least a trip to Scotland will see us meet new people who totally get where we've been and perhaps where we're heading...

ZZZzzzzzzzzz.....

Tired and a touch of the cold this week for us all. Instead of lively games and running around and kicking the football about, Leo has taken to creating an art gallery around the flat we're staying in whilst he is having treatment here at the Marsden. On last count, we had over 50 pictures on the walls which have been 'created' over the last two days alone! May have to sell them or auction them to raise cash for Clic Sargent, maybe? Or perhaps a calender for Christmas presents? Who knows!?

Anyway, chemo weekend almost upon us again...it always seems to creep up on us even though we know it's every three weeks unless Leo's too poorly. Had his blood tested yesterday so should know today and tomorrow if he needs GCSF again to boost him immune system to make sure he's well enough and not neutropenic.

The children in Spain went back to school yesterday on their first day back at King's College for the Autumn term. We so wish we were there and hard to believe it's a year ago when we met so many lovely people. Wishing every day that life was different and Leo would be in Nursery this year with Martina, and playing after school with Jack. Anyway, no point dreaming I guess, as life seems to have different plans for us right now, but we'll be able to get back on track soon....we hope!

I'm Not a Man....I'm a Big Boy!

Daa-daa....do you like my magic tricks?
Leo and Auntie Lily, Saturday, Sep 6th, 2008
"Watch very carefully as I make the socks disappear and make as much noise as I can!!!"

We treated Leo to a 'normal' afternoon in London yesterday after a week where we've all been feeling super-tired and run down. PJ still has a cold so is trying to stay away from Leo as much as possible as if Leo were to catch it, the general anaesthetic would not be allowed and so no radiotherapy!

After a long morning at the flat, Leo was restless, as were we, so we jumped in the car and ended up at the London Eye! Not quite sure that was the plan or even if Leo would want to go on, but he did and very excited he was indeed. You can tell it wasn't planned as I didn't even take the camera with me!!! The only pics I have from the London Eye are on my phone and who knows how I can transfer them over to the laptop?!

So as we're walking along the South Bank after the London Eye trip and a policeman says 'Good afternoon, little man!' to Leo, to which Leo retorts, 'I'm not a man, I'm a boy!' Fair point. The policeman persists, 'Hello, little boy!', and Leo is then quite taken aback so says, 'I'm not a little boy, I'm a big boy!!!!' The best thing was Leo had his hat and new fleece on and so if the policeman didn't look too closely for no eye brows or eye lashes, he was just being nice and sociable and not treating Leo any different to any other child.

We've been lucky to see family again over the past weeks which has kept us going. My Auntie Lily from the US is over en route to Spain and also my brother has been back from Dubai with his wife Julia and baby daughter Sophie. Leo has also enjoyed seeing Auntie Denise as 'she buys me Hotwheels and knows how to play with them properly!!!' It'll be great to get back to Bristol to see people again and it will also feel like we're nearly on the home straight once we're back on the M4 motorway heading west in a couple of weeks.

These last four weeks have really brought us together as a family and enabled us to get our heads around many things such as travel insurance for the future (prohibitively expensive for the USA so no Disney World for a while then, and no planned family holidays as we won't be covered for cancellation unless we pay massive fees...no spending a few years in the USA in years to come as we'd not be able to cover Leo for healthcare.....do we or don't we head back to Spain as soon as Leo finishes his treatment or are we actually too paralysed by fear that his cancer will return and we'll be in a country where we don't know the health system and protocols?...would the Spanish healthcare system pay for the hormone treatment Leo needs in the years to come at a massive cost of £30,000?...If we had to come back to the UK, would the NHS pick up the tab for future treatment if we've not been resident here for a certain amount of time so does this mean we'll have to stay in the UK forever?....

All these questions and more, and no-one can help us make these decisions. It's going to be a real balance between making sure Leo has the best life ever and reality; if the cancer has not gone or indeed if it comes back, PJ and I need to know that Leo has enjoyed all the best bits of life and we've made the bad bits as easy as possible.

I'd best go enjoy the good bits whilst Leo wakes up and plays in the hospital playroom for an hour or so before we head back to the flat.

Tomorrow's a new day...