They All Want to Kiss Me!!!

Leo has had a slightly better day in terms of eating and whilst it hurts me to say he cannot drink milk unless he eats his breakfast, it's for his own good!

Having said all that, when I collected him from school this evening he did say his favourite part of the afternoon was eating his lunch of bread and jam, so we're making headway.

He also played properly with some other children for the first time, instead of just relying upon the teachers who are lovely. I asked him whether he plays with the girls as well as the boys and he answered..'urgh, I can't play with girls Mummy, they all want to kiss me!' Get him!! Thinks all the girls like him! Cheeky so-and-so.

Have had to rearrange our oncology consultant's meeting tomorrow as PJ has another job interview and so perhaps we'll touch base next week. We also see Leo's eye docs again on Thursday afternoon.

Not long now until my cousins put themselves through miles of mud, cold weather, perhaps even rain knowing the weather here in the UK in the GRIM Challenge on Sunday Dec 8th. They're raising money for our forthcoming trip to Disneyland in Paris as well as any future treatment Leo will need, plus a legacy fund for Clic Sargent and the Paediatric Oncology Ward at the Bristol Children's Hospital. During the past two weeks of not knowing whether Leo's already relapsed, we took the step to book a trip to Disneyland as the last two weeks have really emphasised that we never know what's around the corner.

So on Dec 15th, we are taking Leo on a lovely trip to Disneyland and he's one happy chap.

After all the medicines, chemotherapy, radiotherapy, hospital visits, general anaesthetics (about 40), central lines, central line dressing changes, weekly blood tests, five blood transfusions, we think the trip will be an awesome way to celebrate life together. Hopping, skipping and jumping down Main Street Disneyland is something we're all looking forward to and seeing Leo's excited, happy, smiling face when he finally sees Mickey Mouse and Buzz Lightyear for real will be a dream come true.

It's an old cliche but the words thank you are not enough; thanks to all of you who have contributed to the fund. Words can literally not express how thankful we are, but let me assure you that the photos of Leo smiling away in Disney will easily illustrate the difference you've made to our son's life. They'll be here on the blog as soon as we return as a way of saing thanks.

Keep On Keeping On

Another week has past and things are starting to settle down. Leo's temperature has finally become normal on a consistent basis so that's good. His eating has slightly improved in that he is actually eating little bits and pieces from time to time. His cold is still lingering but then it is the season for it. And he's been to school a few times and enjoyed it each time. The eyelid droop is no worse so that's promising and may point to 'just' radiotherapy late effects as opposed to a relapse, but with more tests this week, we will keep on keeping just about everything crossed.

I Know Nothing...Kind of!

Still no answers either way as to whether Leo has relapsed. His eye sight is worse than it was 6 weeks ago, and so is a cause for concern. As is the eyelid droop which is worse than 3 weeks ago. Both things could point to a relapse but noone is pointing us in that direction until they know for sure, which would be if a scan then shows the mass left behind growing or changing shape. We're back at the Eye Hospital again tomorrow to see if we can do another eye sight test and take a look at the back of his right eye and see if it's damage to the eye itself, or behind the eye and thus tumour related.

And so onwards we go...

Neither Here Nor There

Leo was so good at the hospital today and fine about going tomorrow also, but probably because he knows he is going to school again as soon as we're done with the doctors. It's weird but all of a sudden, he seems to have grown up a little. His sentences are better formed, his speech much clearer and every now and then, he absolutely sounds like an adult!

Leo's MRI was today and it's the first one since he's finished treatment. If he had not had one planned, then the doctors would have ordered one anyway to find out why his eyelid is drooping, and why he is squinting and pointing at distances.

So the result of the MRI is neither here nor there, although we had no real commitment from his doctor as to what we or he should have expected. The initial MRI after 5 sessions of chemo and prior to Leo starting radiotherapy showed a reduction of the mass on his brain and behind his eye by about 50%. His doc was pleased with that, and his words and body language showed this at the time.

Today was a different story as the MRI showed no changes in shape or size of the mass from the MRI scan done in July. No clear answers were given about whether this was expected, good, bad or ugly; although he did request a swift radiologist review of the scans which illustrates he takes our concerns seriously, as we were not meant to have any results before next week's clinic appointment.

We've always known that the tumour was inoperable due to where it is in Leo's head, and so we've always known that there would be some mass left behind. We can only guess and fear what that mass actually is; it could be dead matter / dead cancer cells, live cancer cells, dormant cancer cells and / or scar tissue, or a combination of all of the above. But to say that both PJ and I are surprised the mass has not reduced even a slight amount again after such intensive radiotherapy and four further chemotherapy treatments, we're disappointed and a little lost. I guess our expectation was that it would reduce further and leave behind scar tissue. However it's exactly the same.

The one positive is that it's not grown at this stage but then that would be highly unlikely given he's only just finished chemo etc.

Upon asking the docs what we should look for in terms of relapse, unfortunately the symptoms are exactly what Leo has developed over a short time, these past few weeks; eyelid droop, squint and double vision (pointing whilst squinting could be indicative of this). So the scan did not show relapse right now, but sometimes symptoms show relapse ahead of scans.

This therefore means we're in the hands of the eye doctors on Wednesday right now; they will hopefully know how to test what is going on with Leo's right eye. It may be that there minute cancer cells which have either never been killed or have decided to already re-ignite and are causing a few problems on his optic nerve, and so will only show on an MRI in a few weeks. Or it could be something else...what that is, we don't know. But we're meeting with his oncology consultant again on Thursday once we've had some more tests and info from the eye specialists.

Urgh. Patience is a virtue but unfortunately not something I have ever been blessed with. Not knowing is not a good place to be, but we need to get used to it. The ups and downs of life will now be governed by the in-betweens from doctor's appointment to doctor's appointment and the next MRI scan. In a way, it's good to know we can somehow protect Leo from this fear and worry as he can settle into school and be as normal a child as possible i.e. play, learn, live and love. It's our duty as his parents to ensure we protect him from our fears; if we ever knew he felt as scared as us, I think he'd be nearly as paralysed as we are from time to time.

People keep telling us we're doing a great job and that they could never do what we're doing. Well, let me set the record straight. You can only do what you can do. Anyone in our position would be the same. Children like Leo have a lovely way of keeping your feet firmly on the ground and in the present. And so any person, you, would also be the same. Yes, of course, we collapse from time to time, but fortunately, PJ and I do this at different times and in different ways.

There is no other feeling on earth than seeing and knowing your child, your only child, has a life threatening illness, and we've met many parents in the exact same position. But that's the thing; he's our only child and so we have to do what we must. And that's do what we're doing. Cope, literally from day to day, and not expect too much from ourselves! Give, every day without fail, to our only child and ensure he is happy and content, and when he says he's scared, tell him it's fine to be scared.

In fact, we're nearly lucky, if you think about it; although lucky is not quite the right word. But here's the thing...any one of us could get knocked over by a bus, be killed in an accident tomorrow etc etc etc. Our lives are only in the present anyway, but we're fortunate to have been kicked up the backside that life is here for the living. And so we can do what we can, in the present day, now, to live life, love life and ensure Leo has the best life ever. The other option is perhaps to be a bit lazy and complacent and think that we'll do x, y and z next year or next decade!

Gosh, sorry for the 'War and Peace' posting but sometimes it's quite useful to brain-dump here to clarify thoughts, so please forgive me!!

Tomorrow's a lovely, new day (that's me trying to be positive, again!!!) Am I that transparent?

Got to take my Tablets???

Leo and I have had a nice day together as PJ has not been well this afternoon. Stress does all sorts of things to people and he needed some time on his own to gather his thoughts and actually get some sleep as neither of us are sleeping right now.

So Leo and I went off to see Charlie, our friend's lovely son who Leo knows from before we moved to Spain. He has also seen him lots since our return and each time, they just play so well together. Charlie could not care less if Leo has no hair, no eye lashes, no eye brows and a red bow around his neck from the bag of his central line. Kids are just fabulous for just getting on with things and leaving it to us parents to worry about everything! One of our duties as a parent, I know!

On our return home this evening, Leo pretended to talk to his friends Ross, Jack and Saul in Spain on the phone and I overheard him say 'no, I can't come back to Spain as I have to take my tablets, Ross'.

Neither PJ nor I have ever mentioned tablets to him and usually he talks about medicines so that was both strange and sad, that as a 3 year old (albeit he's 4 in just over 2 months time), that he has the presence of mind to know that it's because of perhaps more tablets and meds that we're here in the UK.

Unfortunately being in the UK is not helping his eczema, which is back with a vengeance, and his mould allergy is also making itself known. Being in the UK has its advantages of course, but we're hoping that his eczema and chest problems settle quickly.

School's Shut...Honest!

The first words from Leo when he woke up this morning were;

'School today, Mummy?'

Quick, think of something...urm, how about;

'Sorry Leo, school's shut today!'

What else could I say? Of course the school is open five days a week but we've only got him there for 3 afternoons as we thought he'd be too tired and we'd need to ease him in to a 'normal' existence!

Next week will be a little hectic as we're at the hospital Monday, Tuesday and Wednesday.

Tuesday is kind of run of the mill as it's a GFR test which checks Leo's kidney function to make sure the high dose chemo he's had has not caused any kidney damage. They inject a nuclear compound into his central line and draw blood over the course of the next 5 hours to see how his body secretes the nuclear compound. So far, his kidney function has been fine so no worries there.

Wednesday is back to the Eye Hospital again. Seems like the 3 weeks between his eye appointments fly by and given Leo used to hate people looking at him and especially his eyes, he seems to do well there and 'comply' with what they need to test in order to make their assessments accurately.

Last time we went to the Eye Hospital, Leo's right eye lid seemed only very slightly swollen and maybe lagging a little, but only if you knew to look for it. Unfortunately since then, his eyelid is now about halfway down his eye and he is squinting again whilst also pointing with his finger when watching TV or pointing at distances, which is what happened when he was first diagnosed.

Hence his MRI, which was already schedule for Monday, as well as what the eye docs have to say are both crucial. This next week is probably the most scary since his diagnosis as no-one seems to know why his eyelid is doing what it's doing. The eye docs did previously say his eyelid may droop over a few years and if so, it's cosmetic and easily sorted with a small surgery.

It would be unusual for a relapse so soon after treatment but not unheard off, which is what Leo's consultant told us last Monday. So we've known this since Monday but I could not bring myself to physically write it down. However, it's kind of therapeutic to do so now and thought you may like to know what's going on. We have the fear of relapse upon us for the next 5 years with it being highly unlikely to recur after 5 years. However the thought that it may be back already had never really occurred so we cannot see, think, eat, drink or breath without thinking about Monday and what the MRI will or will not show.

We've been advised that it may be likely that the MRI will not show all that much in terms of relapse as a few cancer cells in a particular place may not be visible on a scan and so we're prepared for an inconclusive result on Monday. Reason also being that there may still be some swelling locally post-radiotherapy, however this would not cause his eyelid to swell and droop as quickly as it is doing now.

So who knows? Tomorrow's another day and fortunately we've very supportive friends near us here in Bristol and so despite PJ and I having colds and not sleeping for this past week, we're going to see if we can put our fears aside as it doesn't help anyone and make sure we can have a fab weekend with Leo...at the risk of him being bored with Mummy and Daddy!! He'd prefer school any day!!!

Independent or what?

A huge week this week - Leo started school at a lovely Montessori school here in Bristol. Having been a bit nervous about whether he'd cling to our legs and not want to be left without us...well, he's just done so very well!

He practically told us to leave him there, and yet the expectation had been that Leo and I would stay for about an hour each day this week and then increase it next week, with me perhaps leaving him for increasing amounts of time over the next few weeks. In fact, it's gone so well, he's been happy to be left to be a 'normal' child for a few hours each afternoon. Wonderful. Jujst fabulous. Perhaps we'll increase his afternoons there from three to four quite soon!

We always knew he had that independent streak in him before he had cancer and now it's as evident as ever, which is very welcome. He's had so much heartache over the past 7 months that if he'd become distressed or upset at being left at school on his own, we'd immediately question whether it was right for him at this time; clearly it is!

An old friend (not in age), has visited us this week also. The lovely Ian Howat has been to say hi and we wished he lived around the corner! Both PJ and I worked with Ian years ago before we got married and had Leo, and he remains a supportive friend. To say Leo did not want Ian to leave is an understatement. Ian was amazing with Leo; there was lots of playing up and showing off, and that was just Ian!

I'm Not Brave

We're spoken to quite a few people this past week or so who have found the words describing our fantastic son quite an inspiration. And when this event I am about to tell happened earlier today and I retold it to PJ, he said straight away that it needs to be put here. It frightens me to have to write this as well as makes me feel wholly hopeless. As parents, we're here to protect our children, aren't we? And yet, when it comes to things like childhood cancer, it's so very evident that we don't have it within our powers to protect our children 100%.

And so here's what happened today;

Leo and I were cuddled together watching Loony Tunes Babies and one of Leo's favourite characters, Bugs Bunny, was being particularly brave. I took the opportunity to say that I thought Leo was brave and even more so than Bugs Bunny. Leo adamantly shook his head and said 'I'm not brave'. I said that he was and that his cards from family and friends once he'd finished his extensive chemo and treatment a week or so ago, told him he was a brave boy and many people thought he was very brave. He answered, 'I'm not brave...I'm scared'.

Upset and shocked as I was, I said 'it's okay to be scared'. I just felt there's no point telling him not to be scared. We learned our lesson when at the beginning of this whole thing, he was getting very angry and we told him he was being naughty, thereby also getting angry ourselves. The therapists told us that of course he'd be angry. It was only natural. Life was scary and made him angry because we'd be in Spain, he was settled in school and had lots of fun with his friends. What could I say? Tell him not to be scared? What's the point in that?

Where did we go so wrong? Are we not doing enough to protect him from all this cr*p? I have to admit it does answer a massive question I've had whereby each time I read his cards to him which congratulated him on being brave, he got really angry and very upset. At least now we know what's going on and will ask the Clic Sargent therapist on Tuesday what we can do to help him, or at last try to...

On a more positive note, he has started eating these last couple of days. He demolished a small plate of spaghetti bolognese last night as well as some chips and tiny piece of chicken for lunch. So hopefully no nasogastric tube will be needed but we'll wait and see. He is also meant to start nursery again on Tuesday afternoon but if his bloods have not come back up to show he has some sort of an immune system, then we'll have to postpone until his neutophils and white blood count are considered safe.

Today we pretended to have a picnic on the beach by way of laying a towel on the floor in the lounge and eating lunch there. Leo's imagination was awesome as he built sandcastles and then wiped his hands off before putting on some suncream. He also needed sunglasses and told PJ and I to make sure our sunhats were on our heads...all make-believe but very real. It really minded us of the afternoons spent as a family and with friends on the beaches at Los Alcazares in Murcia.

Speaking of which, Leo's school in Spain, King's College have today held an amazing fundraising event with proceeds going to Clic Sargent here in the UK as well as a similar local charity in Murcia. It sounds like they had a very busy day with a huge golf tournament, a magician, lunch for 160 people, a raffle, face painting and all sorts of other activities. I'd imagine most of the people attending either cannot even remember Leo, have never met him or of course, remember our cheeky, energetic blond haired, blue-eyed boy from when he was in the Pre-Nursery class with Miss Cara and Miss Gill. He may not look the same, but inside our scared boy, he's still very cheeky, which is somewhat reassuring!

We're sorry that none of us could attend this tremendous event at King's College and often feel we've let them down by not attending, however as it turns out, Leo needed us both here - his temperature is still playing up, his food issue needed to be dealt with and whoever attended would not have been back in time for the meeting with his oncologist tomorrow afternoon, where we discuss for the final time, whether we head into the maintenance chemo regime for the next six months.

Tomorrow's another day...

B is for Blood

We've had an improving few days on the energy front. This morning we've even had 'circle time' with PJ, Leo and I doing a bit of dancing and then sitting down to sing the alphabet for about an hour with Leo as our teacher. Each time we got to the 'now you know your ABC, next time will you XXX' Leo changed the final sentence to say things like 'swim in the sea..with me?', or 'have a cup of tea?' It was so nice and really warms our hearts that Leo loves learning and being in charge!

'A' therefore is having an 'absolutely' fabulous morning.

'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.

So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.

We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!

Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.

Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.

Yes You Can

Can we expect a first class health-care system which looks after our children to the best of their ability here in the UK? Yes you can!

Can we expect a mighty kick up the backside when cancer decides to take a bite? Yes you can!

Can we sometimes thank cancer for rearing its ugly head into all our lives to put things into perspective and see life for what it really is? Yes you can!

Can we expect the guys who do our car's MOT to use the rear seat-belts to ensure the safety of Leo's Winnie the Pooh teddy and Po of Tellytubbies fame? Yes you can! And how cute? True story; happened today and reduced me to tears!

Can we be completely shocked and ever so thankful when complete strangers offer advice, sympathy, a shoulder, friendly emails and even fundraising after they learn of our brave son's battle against cancer? Yes you can!

Okay, so I may be getting very carried away on the Obama train right now, but hey, isn't that what we're all here for? Let's get carried away. Let's dream and then set about making those dreams happen. And having fulfilled some of our family dreams and had others mightily dashed, I wouldn't have it any other way.

One thing that this lovely roller-coaster of a ride we've been on has taught me is that life is overwhelming at times, but it's how we deal with that which matters.

How many times have we wanted to crumble?

How many times have we been angry at each other?

How many times do we search Google for any glimmer of hope which the doctors have missed or an all-new, awesome treatment which will offer Leo and other children like him a cure?

Too many...but...these things always happened before but we thought of them as much more mundane because we weren't experiencing the daily feelings of fear that our son may not live to see his 9th birthday.

Yet from this point on, and you can remind me of this at any time, I am not going to allow that fear to ruin our lives. I promise from this point on to use that fear to strive for the best life we can give our son. I will also strive to ensure other families and children affected by this horrid, horrid thing called cancer, are able to continue to get the best care, support and love from people around them including Clic Sargent.

Can we be thankful that there are people who care enough to organise a Golf Fundraising Day at Leo's old school in Spain and most may never have even met Leo? Yes you can...