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!

Brave Boy/s

The sixth cycle of chemo started today so we're two thirds of the way there with this protocol. Just three more cycles left once Leo finishes on Monday. Some days it feels like this whole thing has been going on for just a few weeks and then sometimes it feels like we never had anything before all this.

Leo has been quite sick again today as soon as the chemo went up but has managed some milk and spagetti bolognese which is good. He is starting to look so tired and has sore red skin around his eyes due to the radiotherapy. And yet, we still did some painting, reading and playing together today. Brave boy. Children are awesome despite being faced with such horrid things such as chemo and radiotherapy.

We also spent time today with another family with whom we've met before. Ryan is a year younger than Leo and also quite sick, and poor thing, he's been in hospital for over 5 weeks. His mum and dad were struggling as to whether to shave his hair as it's now started to fall out alot. Like PJ and I, they found it quite hard to see his hair all over the place, and his mum had to change the sheets in the middle of the night last night because the hair had gotten everywhere. I do think it's hard for parents when this happens, even though we all know this is going to happen. It's inevitable and yet, so shocking and in some way, we feel like once our children start to lose their hair, they won't be our boys anymore.

So Ryan's mum and Ryan himself, were very brave and decided to shave his head whilst watching Alvin and the Chipmunks with Leo. I could tell Ryan's mum and dad were finding it hard and I felt for them completely. Bless Ryan..he then wanted to do his Daddy's hair and Leo was saying that Ryan was like him, with no hair!! "No hair brothers!"

Well done guys and hope it's easier now his hair is much shorter. He's still Ryan, just as Leo is still the same but with no hair! So just more like their Daddys now, I guess!!!

One Third Down, Just Two Thirds Left...Woo Hoo

Yes, cup half-full stuff but you have to think positively (most of the time) otherwise you'd go crazy. Leo has completed ten days of radiotherapy and has now only twenty sessions left. And you know what? He is doing great. He actually cheers when we approach the hospital and loves the staff in the playroom now, who are finally seeing the nice, loving, out-going, cheery boy that Leo can be once he gets used to people. He's done some lovely artwork whilst at the hospital this week and really enjoyed himself, which was fabulous for PJ and I to see.

Chemo weekend is upon us again...or upon Leo, should I say. This is the sixth cycle within a nine cycle protocol and we've impressed upon the docs how much he needs as much anti-sickness drugs as possible for the duration of the weekend. Unfortunately these drugs were not prescribed to the max last time around and so Leo suffered quite a bit, but having said that, he's likely to be very sick anyway because of the actual drugs; but it's nice to know as parents, that we're doing as much as we can to help Leo feel as okay as possible throughout the weekend.

The Drugs Do Work!

And so the drugs finally worked properly today. The general anaesthetic and the sedative went well and Leo did what the doctors expect with children and slept the drugs off nicely afterwards. None of the biting, kicking, screaming and acting like a drunken old fool once he's coming out of the anaesthetic..and to say it was a relief for all involved is an understatement. Having said that, Leo's nurse today said not to expect it to happen like this again tomorrow..great!!?

Only slight concern this week is that there's no room at the Marsden for Leo to have his chemo this weekend and we're keen for him to have optimal treatment, which means on time treatment. The other aspect is he's significantly neutropenic and has been for one week, and very often this can cause a delay in chemo. So Leo may need GCSF again, which is the stimulant he has previously had to jumpstart his natural bone-marrow to develop new red blood cells. We've been in touch with Bristol Children's Hospital and they have space for him for Friday and Saturday nights, if we need to take him back there for chemo. Fantastic that even though we're here in Surrey, Bristol can still take care of him.

So apart from all the clinical stuff, Leo is doing great, if you take into consideration all the medication he's having on a daily basis. He plays well at the hospital before PJ and I take him down to the radiotherapy suite, and then today was very cute and very happy to see his Auntie Denise when he finally woke up after a nice long sedative and anaesthetic induced sleep.

Back here at my cousin's, he's had us all bouncing on the trampoline again (in-between rain showers), and been pretending to run around as though he has a new scooter (which we've said he'll get once we're back from this hospital to Bristol..so who knows..this could be this weekend if there's no room at the Marsden!!)

He's sleeping nearly 12 hours per night which is great and goes to bed very well indeed. He's certainly ready for bed when he heads up at 9.30pm, and then because he's waking up late morning at about 9am, it's easy to keep his mind of food and drink. He's not allowed any milk or food past 6am and only clear fluids i.e. water until 10am, and so thank goodness he's sleeping in each day. I cannot imagine how parents cope if their children are early risers and you have to keep them off food and water until after 2 or 3pm each day!

Hope the video works below. It shows some gorgeous footage of father and son playing about on the trampoline, taken by my Dad last Saturday. Leo and PJ are having a ball!!

Pre-Week 2 Radiotherapy...Show Me What You've Got!

So last week could have been worse, although could not have got any worse from the very long first day last Monday. Having said that, we did have a scare on Friday but the doctors and anaesthetists were on top of things to prevent serious issues arising. Whilst Leo was under the general anaesthetic on Friday afternoon, his Sats dropped severely and very suddenly (oxygen levels in blood) and when the anaesthetist put his hands on Leo's chest, he could feel crackles on both sides. He could only hear breath sounds on the right sides which indicated a mucus plug in the left lung.

The docs moved Leo slightly and increased the oxygen through his mask and the mucus plug must have loosened itself whilst they did this (which is all standard treatment for this type of problem). Luckily, they were able to give him the radiotherapy treatment this time around and when he'd finally come to, we took him for a chest x-ray to see what was up. The x-ray did not show anything un-toward although the doctors said two things; firstly, x-rays tend to lag behind any symptoms such as a cough (which Leo does now have) and also they do not have any x-rays to benchmark against so they're kind of playing this one blind, as it were.

We still have to take Leo to the hospital tomorrow but this weekend, he's had a slight runny nose, a few sneezes and a bit of a cough so I feel they may be cautious and decide against the radiotherapy treatment tomorrow, and maybe even for a couple of days. So fingers crossed for this week and also, that he is well enough for the next cycle of chemotherapy at the weekend. If they decide to postpone treatment, it just gets tagged on to the end which means he'll get the full thirty sessions of treatment but that it will prolong our stay in Surrey.

Despite all this drama on Friday, Leo has still had plenty of energy and is certainly giving PJ and I a run for our money! 'Show me what you've got!', Leo has been shouting at us this weekend, to urge us to bounce as high as possible on the trampoline outside the back. So we've had lots of smiles and laughs even though Friday was quite scary.

Thank goodness Leo is only 3 and a half. He is taking everything in his stride and able to enjoy the weekend in-between treatments like that of any other child his age who isn't battling with cancer. He is such a positive boy and a privilege to be with, and helps PJ and I relax when really, all we want to do is wrap him up in cotton wool and protect him as much as possible.

An interesting observation today with 'Doctor Leo' giving Winnie the Pooh medicine through a 'tube' in Pooh Bear's nose. He kept asking me to hold Pooh Bear's hand because he was a little scared but Leo also kept reassuring the Bear that 'this does not hurt'. PJ and I took the opportunity to talk to Leo calmly about the tube in the teddy bear's nose and he said it was for medicines. We also said it was for food if his mouth becomes too sore or if he doesn't want to eat.

Leo must have been listening each time we've discussed this with the team at the Marsden and the Bristol Children's Hospital, and he's seen plenty of children with a naso-gastric tube so we hope this is a sign that once he does have one, as it's unlikely he'll get through this without, he'll tolerate it and understand what it's all about. Such a mature head on such young shoulders, but then we've always thought that about Leo (yes, very slightly biased, I know!!)

The Advantage of Having Cancer is.....

The upside to having cancer is you get spoilt rotten! And for parents of a child with cancer, the upside is we get to see family and friends more often than we normally would. Leo has had a better day at the hospital...still a little grumpy after the GA but more because the anaesthetist woke him from his slumber, as opposed to the GA itself, I think. And then he was able to play at home with my cousin and her partner for absolutely ages, with whom we all get along with and although we did get to see them in Spain back in February, Nicola and Debs have been so supportive since this whole adventure started.

We all needed support this evening (some more than others!) as there's a huge trampoline in the garden which Leo insisted we all had to go on with cries of 'show us what you've got!!', and much fun was had by all. Photos to follow.... I have to say that Nicola and Debs clearly practice their trampolining skills as they were pretty good and totally outshone both PJ and I (although PJ would probably not agree with that statement, being competitive as he is!!)

So it's Friday tomorrow and so now it's only five weeks to go with Leo's radiotherapy. To our surprise, this first week of Leo's radiotherapy has gone quite quickly despite the immense stress, and I think part of that is because we've had Martina here, followed by my cousin, Nicola and Debs, her partner. Leo has impressed us in the mornings and has coped pretty well with not having anything to eat until after 2pm, sometimes 3pm and I reckon that by the end of next week, we'll have it all down to a fine art in terms of the GA and post-sleep recovery processes!

We popped into the apartment very near the Royal Marsden which we'll be moving to shortly and it will be a fantastic base for us during the latter part of this section of the protocol at the Marsden. Whilst Leo still has a lot of energy, it's just fabulous that he's able to run about, play and make good use of the swing, amazing garden and the massive trampoline here at this house and then once he starts to get very tired, which is inevitable with radiotherapy to the brain and head, the apartment will be great. We're very fortunate to have been able to stay here at Donna's home (another cousin) whilst she's on holiday and also very fortunate to have a wide and growing circle of support from all over the place.

Muchos, Muchos, Muchos Gracias

Leo's best friend from school, Martina, has now gone back to her hotel with her mum and dad...and has made Leo a very happy boy. We're very fortunate to have spent two beautiful, relaxing evenings with Martina's wonderful and generous family, and words cannot express here about how grateful we are to them. They've been here to see Leo and we cannot believe how fortunate we are to have met their acquaintance. Muchos gracias Martina, Mercedes y Paco.

As for the hospital, things always get worse before they get better and so Tuesday was bad again, followed by a somewhat better day today. The anaesthetists gave Leo a mild sedative at the same time as the GA and so this helped him sleep a little longer to get rid of the GA before waking up. He was still quite angry and freaked out and the ward even gave us the male nurse today, thinking this may help...not sure if it did though. But hey, we're 10% down and over a week into things here so the radiotherapy will be over before we know it, and then the chemo will be over and then life begins again...

Having visits from supportive people is vital to our sanity and so this week could have been a lot worse. PJ and I also both feel the team at the Royal Marsden are very well on top of things and so we feel Leo's is in the best hands possible at the moment.

Leo will have to hold on to the new memories of blowing bubbles with Martina, jumping and laughing on the trampoline (or elasticated bed, as it's translated in Spanish), and watching Dora, Diego, Mickey Mouse and Handy Manny with Martina, until that day we can go back to Spain and re-establish a normal life for ourselves again. It seems a very, very long way away that we will even be able to think about going back but we have to for Leo and for ourselves too. Plus we've made firm friends in Martina's lovely parents, with whom we've enjoyed much laughter and fun, as well as much talking about all sorts of topics from rhabdomyosarcomas to living abroad to Michael Moore!

Muchos gracias Martina, Mercedes y Paco. You coming to visit us in the UK has lifted us all, not just Leo, and has given us much hope for the future to come.

Tomorrow's another day so let's see what it has in store for us all....