What Next?

Only one day to go until radiotherapy finishes for Leo and this evokes very mixed feelings in all of us, for all sorts of reasons. Relief, but fear also for what the future holds. Not just in terms of the cancer itself, but what long term damage has this highest dose of radiation to the brain and right eye done? PJ and I have sanctioned this treatment but with little other options on the table expect for one, and we won't go there. What about all the problems with possible memory issues, sight issues, stroke issues, further cancer issues as a direct result? On the other hand, we're mightily relieved that Leo has been such a brave and strong-willed boy during this time as it's seen him through (and seen us through) some very dark days indeed. Leo's energy is still full-on, almost as though not only are they giving him Red Bull, but also I reckon they fit him with Super-Ultra-Mega Duracell batteries each and every day!

He does have another staph infection; about his sixth, but hey, who's counting? And what's a staph infection amongst friends? And what other cliches can I think of? So since Monday, Leo's required more IV antibiotics and has even been pushing his own drugs since Sunday. When he had his lines 'flushed' with saline and heparin on discharge from the chemo, the nurse asked if Leo wanted to do it. Amazingly, he nodded and did it himself with her standing by. He's 3! Is he just completely institutionalised now? Regardless, we're proud of him and think he's coping way better than we are.

The infection may hold up our return back to Bristol and a planned recuperation weekend at my parent's cottage, but we're yet to find out if the anti-biotics are doing what we need them to do.

Who knows what's next but then doesn't the same apply to all of us? Who knows what tomorrow can bring as this year is testament to? I only came back for my bowel operation and hysterectomy with the boys coming back to see me and all very last minute too. We've ended up having to up roots back to a city we pro-actively left not long before for a wide variety of reasons. So if we can get through this type of madness, we can pretty much get through anything, can't we?

Run, Leo, Run

Whatever they're giving him, it's not knocking him out at all! He had another cycle of chemo this weekend and we left the hospital at 3pm on Sunday, then PJ and I spent about two hours chasing Leo around a local park. Is it Red Bull they're pumping into him? Whatever it is, he's as cheeky and lovely as ever...so much so I woke up to having my feet and knees tickled for the third time in a week, but this time at 6am!!!!

He's just had his general anaesthetic now and so he has just 3 radiotherapy sessions left after today. Woo-hoo!

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...

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...

Nearly Halfway There

Sorry for lack of contact but we've either been stressed, at the hospital or trying to find internet access as there's none at the flat we're in. We're also struggling with mobile reception at the hospital and at the flat so we're feeling rather cut off from reality right now. It is almost as though the three of us are in a bubble with no other life-forms, no mobile phones, no internet...!!!! Very frustrating. But at least the children's TV channel CBeebies is available at the flat for Leo, otherwise we really would be going crazy and it would more like a padded cell required as opposed to a bubble.

Leo's continued to have his radiotherapy this week so day 11 was Tuesday due to the Bank Holiday here in the UK. His chemo at the weekend went well as two of our (and Leo's) favourite nurses were on, Rachel and Ken, who certainly kept on top of the anti-sickness drugs and so whilst Leo was much more tired than normal, he was only sick once or twice. Today was day 13 of radiotherapy so nearly halfway there.

This week, same old issues with the waking up from the general anaesthetic and sedative with today being the worst for some reason. Being strangled by your own three year old is no fun, but hey, what he's going through is no fun either! Unfortunately we've had to spend more time at the hospital than planned as Leo spiked a temperature of 38.6 last night. Luckily he did not need to be admitted, as there was no room at the Marsden anyway and we'd have had to take him to St. George's in Tooting. But as it was, he does have an infection but his bone marrow is currently produces neutrophils to fight it, so Leo just needed a shot of antibiotics last night and twice more today.

Then we're expecting his fourth blood transfusion so far on Monday, as his haemoglobin has dropped past the magic number of 10 so he's currently anaemic and only just so in the case of radiotherapy treatment. For chemo, it can be down to 8 but for radiotherapy they like it to be above 10 due to the impact of the photons on his skull. So he'll have his blood cross-matched tomorrow ready for new blood again on Monday after radiotherapy. Becoming all quite normal!

Busy, busy, busy... and tomorrow's another day followed by a relaxing weekend...or we hope so anyway!