Christmas 2008

Hope you have a good Christmas and enjoy yourselves surrounded by people who care about you; after all, isn't that what we all want at this time of year?

We let Leo open some presents yesterday after his operation and so he opened the gifts which arrived from his friends in Spain. The picture above is the only one Leo would let me take this evening; he is all dressed up as Sporticus from Lazytown; an outfit sent over by Dawn, Terry, Neva and Lexi. And Leo's energy is just about the same as this cartoon character's now he's feeling a bit better and all the chemo is out of his system.

Same could not be said for today as Leo's chest is very sore where his line was taken out. It has been there since July so the tissue which grows around it can cause it to be very sore when they take it out. So after a brief play at a new soft play place nearby, where Leo took great pleasure in sliding down the slides on his tummy and chest, it was home for a grumpy afternoon. The fact that Father Christmas may be making an appearance overnight has kept him going this evening, but Leo is your typical male of the species...just because you can take pain-killers, does not mean you have to...even if you're in lots of pain!!

Hopefully he'll be feeling a bit better tomorrow and no doubt more presents are going to help.

Merry Christmas

BIG Day, and not because Santa visits in 2 days!

It's been a big, big, big day today as Leo has had his central line removed!! Woo hoo!

Such a huge factor in life returning to a new normality. Apart from the fact that it meant more surgery and another general anaesthetic for Leo, it brings to a close a strange and very, very challenging year.

At least now, Leo can start to feel like any other child; his hair is growing back, and although he told someone today he'd like eyelashes and eyebrows for Christmas, they're growing back also. He should be asking for toys and games, not hair!! But with hope, today will be the last time we have to visit the hospital until February, when the next MRI scan is planned.

Timing is a funny thing as we spent last Christmas here in the UK and vowed to try to spend more Christmas's in sunnier climes such as Spain due to the bad weather here. But this Christmas, although it's cold and damp, we're thankful to have been here in the UK when Leo was diagnosed and thankful that we can call on the NHS and the excellent Clic Sargent community nursing team if we're at all concerned.

So two days to Christmas 2008 and so much has happened since last Christmas.

Moving countries, moving house, being homeless and being fortunate enough to be able to live at Clic House in Bristol, my operation which included an hysterectomy and bowel surgery and oh, that small thing called cancer!

Who'd have thought it, eh? Doesn't this kind of thing always happen to someone else's child who you read about in magazines or newspapers? You never actually think it'll happen to your only child.

But it has and he's through the treatment and now we press on.

Life will never be the same again but in some ways, this is a positive. Whilst we'd prefer to be living our lives in Spain and enjoying our friendships which were developing there, our lives have taken a different twist and unless we embrace it, we cannot and will not move forward.

Who knows what is going to be happening this time next year but our prayers are constantly asking that Leo be with us in 12 months time. This cannot be his last Christmas.

I have a feeling 2009's New Year's Resolutions may be rather on the large side!! We've some time for reflection between now and then though as PJ, Leo and I are off to Ayr in Scotland to spend time at Clic House which will allow us to not feel guilty about our emotions and feelings during the New Year period. We didn't want to feel we were upsetting or disrupting other people's New Year celebrations by spending time with our friends in and around Bristol in the UK, and so we're taking the opportunity to meet and spend time with families and children who know where we're at, and who knows, we may even be able to give hope and support to other families who are going along this rollercoaster of a journery called childhood cancer.

Thank you once again for all your support and please know that if I could jump on a plane to everyone and give hugs and kisses all round, then I would! And Leo would not be far behind me...he's in a very tactile place right now so you would not get away without strong hugs from a boy who is getting stronger daily.

Thank you once again, and may your Christmas and New Year celebrations be filled with joy, health and much love.

Thank You All and to Disneyland Paris

So you could say that Leo was a little frightened of the characters at Disneyland Paris but all in all, we had a most fabulous time. Leo's face was a picture (when the characters were not around!) We also were treated so well by Disneyland as Leo was given a special blue badge which meant no queuing for anything, so no queues for breakfast, no queues for any rides, special after-show photo opportunities and generally treated like VIPs...which was lovely, but then every now and then, just when you think how lucky you are at all this fabulous treatment, you then also realise the reason why. If we could trade queuing for each ride for the reason why Leo had the blue badge, we'd do it in an instant!

Thank you for your contributions which went a long way towards making sure Leo had the experience of a lifetime. He and we really appreciate all you've done and have returned home, refreshed and awaiting a lovely Christmas and New Year.

Hands Up Who's Off to Disney Tomorrow?

Leo, Leo, Leo! He is so excited...oh, and by the way, so are PJ and I! Disneyland tomorrow but this a picture of Leo yesterday at our friend's daughter's first birthday party. If Leo had a full head of hair, you'd have thought he was just another normal child with no worries in the world. And actually if you look very, very, very carefully his hair is certainly growing back and his eyebrows and eyelashes are most certainly back! The most lovely thing though is that now when he smiles, you really feel like he is smiling, not just trying to be brave. His eyes are really smiling, not just his mouth. He is starting to be a happy, little boy again.

And so tomorrow, we're off to Disney and I think I am actually more excited about the thought of seeing Leo (and PJ's) face when we walk through the gates and into Main Street for the first time. And how about the first time Leo sees Mickey Mouse, Pluto, Goofey and Buzz Lightyear!! Will certainly be taking sleeping tablets tonight.

Leo's managed to suppress how excited he is and he's already in bed, asleep on a lovely, full tummy. Finally, both today and yesterday, he has eaten what would be considered a 'normal' amount of food for a boy his age...and that's the first time we can say he's eaten consistently for two consecutive days since the beginning of August; over four months. So fingers crossed we have got the eating thing down!

Leo's Favourite Nurse, Sarah - Thank You Clic Sargent

This is Leo this afternoon, with his most favourite nurse in the world - Sarah has become a firm favourite and is the weekly Clic Sargent community nurse who keeps in touch, liaises with the hospital in-between our visits, answers all our mundane questions which she has no doubt been asked a million times, does Leo's weekly blood tests and flushing his central line, trained me how to flush and care for his line as well as played with Leo, kept him happy when we can't (or feel like we can't) and is generally just an amazing person who has helped all three of us through some tricky times.

As this photo clearly shows, Leo adores Sarah and although his line is coming out soon, she does keep in touch and there's some continuity with her as this next year may throw up all sorts of things which she can help with.

For those who raised all that cash in Spain as part of the King's College / Polaris World Fundraising events back in November, your contributions to Clic Sargent helps to pay for nurses just like Sarah to help children like Leo and families just like ours.

One final update, unfortunately the operation to remove Leo's central line has been put back to the day before Christmas Eve which does mean that Leo will be sore for a few days, but no doubt a few presents from Father Christmas will help take his mind off things!

GRIM ... and Grimmer

Not the best English grammar but the best way to describe today...GRIM for my cousin Nicola - check out those pictures!!! Makes me cold just looking at them. By the way, that's not steam coming off lovely warm bath water... that's freezing cold muddy, yukky water. There's 8 miles of massive puddles (or lakes) of cold water like that, add in some minus degree overnight weather plus ice around the edges of the water, and what do you get? A fab fundraising effort and all for our lovely, brave son.

Thank you Nicola, for your sacrifice in all the training and also for organising such a unique fundraiser, and doing it regardless of the cold you've had. Leo, PJ and I are most appreciative to you for all your efforts and for helping us enable Leo to finish this year on a high after so many, many lows. Disneyland, Paris, here we come, and thanks Nicola so very much for all your efforts. And thanks for smiling in the pictures; you're very brave too and hope you warmed up quite quickly as the day went on.

So that was the GRIM; how about the 'grimmer'? How does trapping your finger in a fire door right by the hinges and having to endure yet another trip to the Bristol Children's Hospital A&E department sound? More X-rays and more pain-killers, and despite our initial fears that Leo had maybe fractured his finger or even had an open break due to the way his finger was, a big bandage later and all was well. We left the hospital and were able to make it to the lunch organised to congratulate Nicola on her own GRIM adventure and also meet with some other cousins including Donna and Regina, who has come over from Ireland to spend some time with us.

Thanks again for all your fundraising efforts and contributions from both sides of our families and our friends both here and in Spain. Please get in touch with Nicola nkdale@hotmail.com with regards to contributing or settling your pledges!

Leo is very special (yes, I am extremely biased), but he's been such a brave boy and so this trip to Disneyland will really help him to relax and enjoy life. Please know we are all so grateful to have tremendous support from all corners of the globe which is testament to just how special Leo is!!

Celebration Video 2008

Been tinkering whilst watching the X Factor Semi-Finals this evening and wanted to put together a nice, happy, fulfilling and essentially uplifting video of Leo. He's coming on leaps and bounds and doing brilliantly this week. His behaviour is returning to normal with fewer and fewer set-days at the various hospitals. He is also able to tell us how he is feeling which not only makes PJ and I feel better, but also helps lighten the load for him.

So enjoy this little video by clicking on the picture below of Leo playing merrily on the beach at Los Alcazares in Murcia back in April and of course, due to the issue with comments on here i.e. I cannot seem to find them once people post them after taking them off due to the personal nature, please, please do feel free to post your comments on the video site.

Thanks again for all your help and support; it's helped more than we could ever portray by words, photos or videos.

Off to support my cousin Nicola in the GRIM Challenge tomorrow and just to give you an idea...it's minus 2 outside as we speak so the course will be somewhat challenging!

Photos and video (I hope) to follow.

Thanks to all for your sponsorship; you've made it possible for Disney to be a real possibility for Leo this year and ahead of Christmas...it's just 8 days until we stroll up Main Street, Disneyland Paris and who knows how far away this whole cancer thing will feel then.

In a way, I am pleased we had that relapse scare a few weeks ago (with a massive dose of hindsight), as it means we're going this year and not waiting and waiting and waiting. We always seem to put things off until there may be a better time but hey, when it comes to living, there's no time like the present!



Merry Xmas 2008

Our New Normal

So a week of stomach bugs, coughs, colds, rubbish weather, more trips to the hospital and all those other normal things of winter life in the UK...and life really does feel like it's returning to normal; well, a new sort of normal! Things will be even more normal when PJ starts his new job in January, as well as work for me and perhaps Leo will do four mornings at school instead of three afternoons.

Something else which is normal..well, relatively...is Leo's eye-sight. He attended the Eye Hospital again yesterday and he was in the mood to co-operate and as such, we've ascertained his left eye (the good one) is spot on for his age and the right one is nearly there too. So what's causing the squint and light-sensitivity? Well, probably cataracts! Which is no surprise of course, as we always knew that he would be a candidate for cataracts due to the radiotherapy, and to be honest, PJ and I were kind of quite relieved. Parents relieved their son only has cataracts..well, that's today's reality. This is normal for a child who has been through what his body has been put through.

The next step is that Leo's Hickmann line should be taken out under another general anaesthetic (his 35th this year) and the date at the moment is next Friday, December 12th. Of course, it may not happen if emergency surgery is required on other children. It'll be great if they take it out next Friday as it's another step towards normality plus we can start going swimming again about 2-3 weeks once it's been removed! Woo hoo! Leo was just starting to get to grips with swimming in Spain with his friends Jack, Saul, Neva and Lexi on regular jaunts to Jack's house and their lovely hated outdoor pool. Gosh, how long ago does that feel now??? It was April when Leo last went swimming and jumped like Buzz Lightyear into Marie, Jack and Craig's pool!

Here's to those lovely sunshine-filled days and here's to a 'normal' future. Our new normal, that is!

Boogie

Leo's always had great taste in music and so this time, it's a little boogie to Take That!

Been to the Pictures

Today brought Leo's first trip to the cinema ever and he just loved it! We watched Madagascar 2 and our good friends Mel and Shaun joined us, along with Leo's friend and their son Charlie, plus my sister Denise and her friend Rosie. A lovely time was had by all. Mel had even done homemade popcorn which Leo tucked into, kind of! Apart from half a bowl of spag bollast night, it's the only food he's had this week. So we'll be having a conversation again this week, with the doctors and dietitican to see if we can be doing something more to get nutrition into him.

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...

Patience is a ...

Patience is a virtue or in our world, pain in the backside! I'm terrible when it comes to waiting for things and so when Leo's temperature went to normal (36.8), on it's own i.e. with no paracetamol on Saturday morning, we felt elated, over-joyed and somewhat baffled! It was short-lived though as by 3pm, it had hit 37.9 again, and stayed there or thereabouts until this morning. Again, it was relatively okay this morning before again creeping back up to the right side of 38 degrees.

Now we have to be patient again and see what the next day and night has in store. Leo will have zero immune system at some point very soon and certainly in the next couple of days, which means that the normal rules apply. If the temp hits 38 degrees twice in the space of 30 minutes, or spikes at or over 38.5 degrees, it'll be another few days in hospital and more IV antibiotics. Urgh! Need to have more patience...

Also somewhat impatient at the fact Leo has an MRI booked for 15 days' time and another kidney function test. Having said that, and not sure if I'm repeating myself (again), but it's not this forthcoming MRI which matters. The docs won't compare this one to the last two. They'll wait another 3 months (February) before doing another MRI. They then compare those two for differences i.e. are there any changes / growth in the 'scar tissue' / white stuff that shouldn't be there on a 'normal' / non-cancer scan? I guess it will be simple to see as the cancer has only ever been in one side of his brain and head, and so it's simple, even for us, to see the differences between one side of the scan and the other.

Patience...wish we had more of it!

Playing the Waiting Game...

Leo's temperature is still not cooperating and got up to 38.8 degrees yesterday afternoon, only about 30 minutes after Sarah, Leo's lovely Clic Community Nurse had left. In fact whilst she was with us and taking Leo's bloods, his temp was 37.9 and 38.3 and as she left she said to call the Day Beds Ward at the Children's Hospital if it hit the all important 38.5. Lo and behold, his temp seemed to want to defy what we want.

Having said that, doctors are stumped as to why the temperature is spiking and why he's had a low grade fever for such a long time. Neither PJ nor I are ill, and nothing has changed since he was last admitted whilst neutropenic. They stuck a vacuum up Leo's nose yesterday to grab some bogey (sorry, that's the only way to put it), and tested it for viral problems which may be causing the temperatures. But the test came back all clear today. His line in his chest is clear of bugs so it's not that, even though his chest exit site is slightly raised and red.

Unfortunately the doctors cannot really do anything if the tests they run don't show a problem. His CRP was also under 10 which shows there's no infection brewing. So we're all stumped and to say PJ and I are concerned is an understatement. His right eye lid is a little red a swollen and a little more so from Wednesday when we were at the Eye Hospital.

So it's a pure waiting game and one we don't know how to play. The issue is that once he is neutropenic and if his temperature spikes again, then the doctors will admit him and give IV antibiotics again, much as they did last time. They'll give him IV paracetamol which will lower his temp, and once it's been down for 48 hours, they stop the antibiotics and paracetamol and left him go home. Same as last cycle. But then as soon as that happens, his temperature goes back up and hovers between 37.5 and 37.9 with a spike above 38 degrees every day.

Leo has been energetic even at the worst of times and has kept PJ and I on our toes, but the last week, he's wants to go to bed early and was asleep before 7pm yesterday, sleeping until 8am or so. He also says he's cold with only a T-shirt on in the house and yet his temperature is still raised.

Sorry for letting off steam here but sometimes things can make more sense when they're written down. Sadly that's not the case today. So we sit and we wait...

Thank You

As things start to return to normal, I'm conscious that we've not really gotten round to saying thank you to you personally just yet, and having said that, we're constantly thankful for all the amazingly kind things people have done for us all.

Leo is doing okay after his final chemo although his temperature if still hovering between 37.5 and 37.9 so it'll be interesting once his bloods start to drop and his immune system weakens to zero next week or so.

We also ha another follow up with the Eye Hospital today and after enduring three different doctors and multiple tests, it was a good day. Leo did so well doing the tests themselves...think normal optician tests multiplied by about ten, plus you're age 3! He did us all proud and the staff at the Bristol Eye Hospital, whilst obviously very interested in Leo's case, were very patient and keen to ensure he was calm and remained so.

The good news is the sight in his right eye has improved slightly from the tests of three weeks ago so that is promising. The on-going concerns are over the continued photo-sensitivity, plus his eye lid of the right eye is starting to droop, but only slightly. His eye also tends to 'shiver' at times, but only slightly and only if you were looking for it.

The eyes docs are not sure why the droop is happening although this did happen at the beginning before and during diagnosis. It could be due to a number and combination of things, but only time will be able to tell us. The eye lid droop could be muscular damage done by the tumour itself at the beginning but then we're not sure why it's started to do it again, as it appeared that the lid had improved and was the same as the left eye lid. Could it be new tumour causing new problems or should we not be thinking about that just yet? Nothing ws mentioned along these lines but you can't help wondering / worrying. Where the 'shiver' has come from is also difficult to point a finger at as again it was a problem which happened at the beginning but was sifnificantly worse than it currently is. We're back for more repeat tests in three weeks to keep an eye on things (forgive the pun!)

Sounds so inane, but we're very grateful that we have your support in many ways, but we're also so grateful to have the NHS. Leo's care with the NHS has been awesome and the only criticism is on the massive burden on the system as whole which impacts on children's treatment.

There is a significant constant pressure on doctors for beds, even in paediatric oncology, where children's treatment 'may' be compromised due to ward closures elsewhere in hospitals. Therefore if a child is due to have chemo over a given period but all ten beds are taken up by children with infection, those children cannot be moved elsewhere. It's too dangerous to administer chemo on a non-oncology ward and so if children with infections cannot be moved or discharged for clinical reasons, children's chemo treatment can be disrupted.

We've been fortunate but even last Friday we'd already been told Leo could not start his chemo until maybe Sunday, and yet an hour later, we were called to get Leo into hospital as they'd found a bed on the Bone Marrow Transplant Unit. Leo's chemo protocol has to be done on time to ensure optimum treatment, hence the many incidences of GCSF to ensure his bloods were safe for him to have the chemo.

Anyway, I've gone on and on, but what I wanted to say was thank you to one and all, and to the fact that we are in the UK with free at point-of-service healthcare.

Now the Work Starts

Leo finished his final chemo yesterday and has been doing well today, albeit no appetite and too much of a low grade fever for our liking. It hit 38 degrees but then came back down to 37.6 within 30 minutes, with the rule being if it's 38 degrees twice over the course of half an hour, he'd have to be admitted to hospital immediately. And so whilst many may be breathing a sigh of relief at the end of treatment, this sigh will happen for PJ and I a) once we've got through the next 3 weeks as it's during this time his immune system drops to zero, and b) once we've finally had the proper official meeting with Leo's paed oncologist in this next two weeks.

When I say we'll have a sigh of relief, it'll only be short-lived as then the cycle of either maintenance chemo (we're still undecided), or scheduled checks on his cancer via MRI scans every 3 months and checks of his growth, hormones, heart, bones, sight etc etc etc starts and continues for the next 5 years. So perhaps it's best to say we'll be doing alot of holding out breath over the next 5 years.

We're also now looking to the future in a big way in more than one way. My cousins Donna and Nicola are doing some major fundraising by putting themselves through the major pain of the GRIM (8 mile army assault course in the middle of winter..madness? Yes, but all in the name of a good cause). If you'd like to sponsor them, let me know and I can pass along your details or better still, email Nicola on nkdale@hotmail.com). It'd be nice to know they're not going to putting themselves through a grim experience for nothing!

I'm also now going to reach out to you for more than just cash as there's plenty of time for that...over the next 2 years, we'd like do as much fundraising as possible. So my plea at this time is for this; if you or anyone you know have any knowledge of fundraising, event organisation or online and offline marketing or any of these types of things, then please, please get in touch (email: helen@wingroveclarke.com)

Isn't it strange that only about a week before Leo was diagnosed I was chatting with my friends in Spain before my short trip home to say that as soon as I'd recovered from my operation, I'd love to 'do' something for a good cause. Raise money by doing a half marathon or organising a music night or ball or something similar.

Well now, I plan to do all of the above and then some, and I'd really like your help to do this and raise as much cash as we can. Funny how things happen, isn't it? As a direct result of Leo having cancer, we now have the opportunity to raise money to make sure he's able to chill with Mickey for a day or two, and ensure other families and children in the same boat can benefit from our experiences in more ways than one.

And Finally...

As I write, Leo's already had his final chemo dose; it's all just Mesna (which protects his bladder) and hydration fluids via his IV until tomorrow morning, and then...that's it!

Who'd have thought we'd have got here? As I've said so many times, it feels like it only yesterday that Leo was diagnosed, but then on the other hand, I think PJ and I have aged beyond years!

As for Leo, he's doing okay. He has spiked a temperature again today so had some paracetamol to bring it down and to say I'm not surprised, is an under-statement. We had to call the Day Unit on Thursday to make sure that a constant temp between 37.6 and 37.9 was going to be okay for chemo this weekend. As it happens, it was but his temp is still a sign of something rumbling away. We just wonder whether there's something with his chest, the mould allergy he has or something with his line again, which has been going on since about 7 weeks ago. Perhaps we'll only know if it continues until he becomes neutropenic again in 8 to 13 days time.

So even though chemo is over this weekend, we've another cycle to keep Leo healthy through it and keep monitoring things. Fingers crossed...

Failing but Learning, All the Same!

Yesterday was Leo's final visit to the Royal Marsden Cancer Hospital in Sutton and as it turned out, we kind of failed him somewhat. We forgot how his experience of this hospital was for six weeks, day in, day out, the same routine every day. And so failed to spot that he'd think he had to have the medicines which made him sleep, and that he wouldn't need to have loads of things done to him whilst he was there. If we had, then we would not have had such issues getting him out of the place. He was determined he had to visit all three playrooms before having the anaesthetic in the RT suite.

It took a good half hour to even get him strapped into his car seat before he was calm and realised that yesterday was not going to be like all the other days. I guess PJ and I forget sometimes that we know what's going on and our relief that yesterday was going to be the final time we saw the Radiotherapy Consultant, that we failed to guide Leo through what was going to happen; and more importantly, what wasn't going to happen.

As it was, it was a useful meeting, if a little strange. He didn't tell us anything we didn't already know; except that is the photo-sensitivity that Leo's had (although it's getting better slowly) is nothing to do with the radiotherapy. It's more likely to be tumour related. At least we're in a city in Bristol where there's an Eye Hospital with plenty of specialists with an interest in Leo and his cancer, so that's good!

One thing which did get to us was when the doctor said 'if' Leo makes it to teenage years, he won't look like a 'freak' when he walks down the street. And that's pretty much word for word what he said. Now I know this is realistic and 'normal' doctor speak but it would have been nice to shield us somewhat from this. No matter how much charm some doctors have, and no matter how often they have to tell people bad things, do they sometimes not realise how what they say effects us?

I hate the ifs and buts of the future, but then I guess none of us know what's around the corner. We could get knocked down by a bus tomorrow; no-one really knows what the future holds, do they? The 'freak' comment was regarding the effects of the radiotherapy on the growth or lack thereof on Leo's skull, where the three fields of photon radiotherapy beams were directed.

It's true that one of our fears from the radiotherapy was the cosmetic effects to Leo's face and head, so at least we know he won't be desperately affected in the long term i.e. he won't look disfigured. But then I guess there'll always be questions that we, as his parents, will have to face. Yes, he's young and only three years old now, but the late effects such as infertility will need to be addressed. How often will we have to remind him that if he smokes, he will get cancer? End of story. No negotiations. No ifs or buts. What about the small scars he'll be left with on his chest from his Hickmann lines? Small, and practically won't be seen once they fade with time, but constant reminders all the same, and reminders which will lead to questions from an inquiring mind.

Well, no parent signs up for their child to have cancer, but PJ and I will do and have tried to do, all we can to protect Leo, and sometimes, like yesterday, we do get things wrong. We'll no doubt get things wrong again, but in the meantime, we hope he'll be okay; we pray he'll be okay...as we all do.

Tomorrow's a new day, and we hope there'll be a bed available for him to start his final chemotherapy as an in-patient. Seems there's plenty of children who have problems with their temperature at the moment and so the ward's pretty full.

We never thought we'd get to this point when he was diagnosed back in May, but here we are. In once piece, and praying for a future.

Home Again

Home after a few days at the hospital and Leo is better for it, although still not eating, not really drinking all that much milk and still has a mighty cough, especially when he goes to bed.

So only five days until Leo starts his final round of chemo and actually, PJ and I can actually see the light at the end of the tunnel. Amazing what a few sleeping tablets can do for your mood, isn't it?

Of course, there'll be bumps along the road from here on in, but it's how we deal with them as to whether those bumps will be mole hills or mountains. Life won't ever be 'normal' again, but I actually quite like thinking we've been given a (really nasty) kick up the backside and so we're having to not take anything for granted any longer.

Leo's looking forward to starting school (nursery) again and said he wanted to walk to school which is what we did in Spain. Alas, unless he can walk about 3.5 miles each way, then this won't be happening. Shame as we loved being able to stroll on down to King's College, in the sunshine most mornings and afternoons. Oh, what a school run that was. Well, it wasn't a run so much as a gentle stroll with sun glasses on!

Back to the Royal Marsden for a check up, post-radiotherapy and so we're keen to find out what they say about the ultra light-sensitivity Leo still has.

Tomorrow's a new day, and we're looking forward to it.

Inevitable

After nearly two weeks of getting a temperature of up to 37.8 every afternoon, it was inevitable that Leo would spike a fever of 38.8. Late Thursday night / Friday morning, it's one of the few nights PJ and I had stayed up to check on Leo and have a good chat about the future. Lo and behold, as we're heading to bed, Leo's temp was way too high and so off to Bristol Children's Hospital we went. There are good things about the timing, as there was no traffic at all on the roads and so the 2 mile journey took minutes, plus the children's Accident and Emergency room was empty too (not that we'd have to wait as each time Leo is sick, we call the ward and then they notify the A&E who then arrange a room for when we arrive).

Leo's temp came back down quite quickly with some IV antibiotics and some paracetamol and today his temp has only been up to 37.8. His chest X-ray of last night was cloudy but not much more has been said about it. And for days Leo has been saying his mouth is sore but only when it's time for doing his teeth, however it looks like we should have believed him now as he does have some mouth sores too.

We'll find out a bit more tomorrow but it's likely that as his temp came back down and he was happily playing all day, the docs will let him come home tomorrow, so we'll have to keep a real close eye on him...or wrap him up in cotton wool?

One bit of the jigsaw has been solved or answered for us; the cyclophosphamide suggested as one of the two maintenance chemo drugs, is available as a liquid as well as a tablet so those nights of lying awake wondering how we'd get Leo to take a tablet were wasted! Having said that, the doc doesn't know what the liquid tastes like so who knows? Leo may decide not to take the drug however you do it!!!

Anyway, tomorrow's another day and whatever it brings, Leo's being brave and so good about being back in the hospital again. One week left until the end of treatment and then life nearly restarts with maintenance chemo...

Too Tired to Eat

I guess it was going to happen at some point but Leo is certainly more tired and more 'off' than normal. He's no interest is going out, playing actively, or even eating. He's quite happy to watch Handy Manny and Mickey Mouse on Sky+, and do the odd bit of drawing and colouring. He told me he only wanted milk today as he was too tired to eat.

Leo's eye is still very, very light sensitive and if it continues, we may see if we can get him back to the Eye Hospital before the next appointment on Oct 29th. We are back at the Royal Marsden next week so they may also be able to shed light on the problem (excuse the pun).

No Decision is Still a Decision..Isn't It?

As you'll see from the title of this post, no decision has been taken over the whole maintenance chemo side of things..but that's still a decision, isn't it? If you'd asked me yesterday, I'd have said, yeap, let's go for it. However, today, I'm all for not pursuing further treatment. Leo's been through enough and if doctors cannot say for sure that another 24 weeks of treatment will help, then why would we, or even , why should we put Leo through this?

PJ feels the same and his mind changes from day to day too, but then one prevailing thought is that if there's more treatment available, even if you've no proof it will work, then why wouldn't you choose the extra treatment? Extra treatment equals extra coverage surely? Wouldn't we all like to know that everything's been done which could be done... One good thing is we can start the treatment and if there are problems, such as Leo not wanting to take the daily chemo tablet or if he gets a risky infection too frequently, then we can stop.

Leo's on good form at the moment and being a totally 'normal' three year old. Throwing a fit in the middle of Harvey Nichols because he was tired, bored and stuck in his buggy..just your plain old normal toddler behaviour! But then take him to a toy store to spend some cash given to him by the cancer charity Macmillan, specifically for toys, and what does he choose? The most expensive thing in the place? Nope! A £1 plastic, stretchy lizard, of which he already has three!

He's probably neutropenic this week and as he still has his heavy cough / cold, all eyes are on this wandering temperature which keeps going up to about 37.8 each afternoon / evening since last Saturday, but then it returns to normal, of its own accord. It'll be interesting to see what happens once his immune system is next to zero.

We've another eye appointment to check Leo's sight on October 29th however, neither PJ nor I are hoping for much improvement. Unfortunately Leo was drawing pictures of himself this evening whilst we were over with Ainslie, Ben and Matilda, and the pictures all featured one eye completely coloured in black and one 'good' eye. Upon asking him about this, he said the black one was his bad eye and the other was his good one. Shame.. but hey, a Leo alive and healthy at the age of 40 but blind in one eye, or the alternative...which one would we choose?

Decisions, decisions...

Yes, it's all been quiet here and whilst I'd like to say there's been no blog postings because we've been terribly busy, well, actually, it's been the opposite. Our tiredness has caught up with us all at a time when 32 boxes of our life's belongings have arrived from Spain, Leo undergoing chemo, Leo's eye still being sore (but better) and the weather is so changeable, no plans can be made from day to day.

Leo did well but was very sick again with his chemo at the weekend. Decisions need to be made about whether he has the maintenance chemo which would last 24 weeks and include one daily chemo tablet as well as weekly IV chemo via his central line for three out of every four weeks.

There's pro's and con's for deciding one way or the other but as directed by his doctors, if you search for clinical evidence as to which way to go, you'll only see positive research results. However, if there were negative research, it doesn't get published so you can essentially take the positive published articles with a pinch of salt (as his doctor has told us). Plus the upside we can expect from continuing his chemotherapy would only improve his chances of survival by between 2% and 5%. So this would improve his outcome to 52% to 55%, if the research is to be believed.

However, our doctors are advising they cannot advise on whether we choose one path or the other as they are not convinced either way. It is fundamentally down to PJ and I, although actually, if Leo won't take a tablet every day for 24 weeks, then one could say that he decides whether this treatment continues or not.

The downside are the risks of major infection due to his central line and his immuno-supressed system which if he's in nursery, could make the difference between life and death. Ultimately, if we decide to go for it with the additional treatment, are we only extending his life artificially and therefore hospital visits, when we should perhaps have faith in the current treatment protocol, and have faith that he'll be in the 50% that go on and survive the cancer after 5 years. Having faith at a time like this is questionable though...

We also spent today at the Eye Hospital and unfortunately it appears the vision in Leo's right eye is not as good as his left. The reason for this is unknown right now as it's too early to be due to the radiotherapy as this should creep up on him over the next few years, but it could be that the cancer caused more damage to his optic nerve than first thought.

Today was the first of three vision tests where the eye docs have been able to assess the left and right eye individually, so today is basically a benchmark. Shame his vision is already going or more affected than we'd first thought, but having said that, if Leo reaches the age of 40, healthy, having kicked cancer in the backside, with full remission and no major side effects but can only see with his left eye, then we'll take that right now...where do we sign?

Cotton wool anyone?

Went to see a lovely nursery for Leo today and he enjoyed it so much, he didn't want to leave! Typical! We hope to sort him out a place there soon and the nurse we spoke with yesterday, and his consultant has always maintained, that the consensus has changed over the years about children with cancer and school / nursery. The risk of infection is high, but the upside is the stimulation, social and emotional development and the time spent with peers. Children ten years ago would have been wrapped up in cotton wool, and actually that's also still an option..not a realistic one, but an option all the same. However cotton wool is no barrier to infection or cancer!

More chemotherapy tomorrow; his 8th cycle of 9. Has time flown or what? Or has it dragged so much I cannot believe we're here already? Funny because one minute I'm remembering picking the boys up the day before my surgery, and that feels like yesterday, and then Leo has cancer and that feels like ten years ago. Have we really only been back in the UK since the end of April?

Plus we'll find out more info about the whole maintenance chemo side of things tomorrow. You'll know this has been playing on our minds for weeks and months, and so we hope that we'll be able to find out all the details, or at least most of them, so as we can start to make an educated decision about Leo's future.

Tomorrow's a new day...and looking forward to it. After tomorrow and this weekend, Leo's treatment has just one cycle left. Boy, has he done well and as a friend of mine has said, he has smiled through most of it. If it were you or I, would we have been as composed as him?

Lost and Found

Isn't it amazing that the news is full of terrible things going on around the world..it's all doom and gloom, isn't it? How many times a day could the media make us think the world is full of bad people? And yet...in the space of 36 hours, I have met and been in contact with countless people, known and unknown to me and our family, who have shown such acts of kindness, I have probably cried more these last couple of days than I have since Leo was diagnosed (well, nearly anyway!)

At the Eye Hospital in Bristol yesterday, this rather more mature lady with a walking frame offered to help me as I bent down to pick up something I dropped, whilst I was carrying a sleeping lion (Leo?!) Seriously, I am not sure she could have actually bent down or helped me with Leo, but the look in her eyes was that she really wanted to help.

Also at the Eye Hospital, the pharmacist could see I was struggling so came over to give me the prescription as opposed to me having to go to the counter under the weight of Leo. These people were going out of their way to help me, albeit it was obvious I was struggling, but twice in one day to be offered help?

This was the offer of help from people unknown to me. Today, I was reduced to tears (again) by the most amazing kindness of an old friend from school with whom I have had little contact, except Facebook, for over 17 years. Matt Tombs was always a good guy. We all knew that! A while ago when he heard about Leo's cancer, he offered to promote and do a gig to raise money for a holiday for Leo and funds for Clic Sargent. Now we're nearly on the home-straight in terms of treatment, I gave him the nod and said we're now ready to think about fundraising. Well, to say he's on the case is an understatement. Looks like we'll be having a full-on day with face painting, an auction, a fully licensed bar, bands, open-mic and much more. Amazing...just amazing, and all this from a lost and found friend who has a huge heart. Once we know where and when this will be, details will be here so if you'd like to come along for some fun and fundraising, the more the merrier.

Today the most lovely Clic Sargent Community Nurse, Caroline, came to the house to take Leo's blood. It's always checked before chemo to make sure his he is well enough to have the chemotherapy. Caroline was such a lovely, warm lady..well she'd have to be to do the job she does. Clic Sargent, the awesome charity for kids with cancer in the UK, pay for this service which will now help us a significant amount on a weekly basis. Her visits will negate the need for us to fight the traffic, find a parking space at an already over-burdened hospital and then reduce the risk of infection for Leo by reducing hospital time as that's where most infections manifest. This service will help Leo keep as comfortable as possible in familiar surroundings, by coming to the house to do his routine tests. She can also answer my questions, and that's alot of questions, over a cup of tea whilst Leo sits drawing, playing or watching TV.

In terms of Leo's eye, his cornea was raw and very dry, and past where other 'normal' eye drops would have helped. So we're back to the antibiotic ointment and within a day of using it, Leo is still extremely sensitive to light and so wearing his sunglasses and hat inside the house BUT it's looking much easier for him and less blood-shot, thank goodness. The doctors had talked about further imaging (MRI etc) to see if it's tumour related yesterday, but fortunately the eye doctors were more easily convinced the problem is radiotherapy related. Phew!

GRIM

It's Nicola, one of Helen's cousins here.

Donna (another cousin) and I are planning to run in the GRIM on Sunday 7th December. This is an 8 mile trot through the Surrey countryside, just a few mud baths and cargo nets to negotiate!! See the website http://www.grimchallenge.co.uk/.

It is "grim" but nothing compared to what little Leo has endured over the last few months.

We would like to do this to kick start a "Leo Fund", raising money that can be used to send Leo on a trip of a lifetime to Euro Disney to signify the end of his treatment, and / or, if the fund gets big enough, to be saved as a contingency for any future treatment that may be required, and to be given to CLIC Sargent at a time when the fund may no longer be required so as other children and families can benefit during diagnosis and treatment.

I must stress this is not being set up as a charity as you cannot set up a charity for an individual, this is a way of raising money through financial gifts.

It would be great if others could join us and run as "Team Leo" all raising money. I am happy to organise, just drop me an email to nkdale@hotmail.com.

If you don't fancy running with us, perhaps you could consider sponsoring us so that we can get Team Leo's fund well and truly underway.

Nicola

Relatively Normal...

We've had a nice weekend, spending quality time with friends who have children who Leo adores and has known all his life, and so both Leo and us adults have been able to get a feel for normality back in Bristol.

Leo has started to get exceptionally tired today and over the course of Saturday but being the stubborn child he is (not sure where he gets that from??), he was determined to play with Charlie and Maisie. The minute we got in the car to return home yesterday and today, Leo's eyes shut and he was asleep before you could say 'Home James'.

Leo's eye is still a cause for concern. When we've been home over the weekend, we've had to resort to staying in the bedroom with the blind shut as the rest of the house is lovely and bright, but not so lovely for Leo and his eye. The docs will check his eye again Tuesday and so until then, it's a waiting game, and my gut instinct is that it's radiotherapy related and so nothing bad to worry about (she says..even though it's worrying every particle of my being!!) I guess because it was his eye where the symptoms of his cancer first started, it's a worry. Plus because he's had this problem for weeks now and no doctor has given a definitive treatment or diagnosis, it's difficult and only natural to worry...isn't it?

Five more days until his second to last chemo cycle and then only three weeks after that and it will be Leo's final chemo for this protocol. We're seeing Leo's consultant here in Bristol on Friday to discuss the how's, why's and why not's of the maintenance chemotherapy, in the sincere hope we can actually make an educated decision.

Here's the dilemma...there's no evidence the maintenance will help and there's no evidence that it doesn't. Okay...so why would we consider it? Well, as parents we'd like to know that Leo has as much medicine thrown at this bl**dy cancer to give him the best chance of survival and cure. However, are we just treating our fears if we choose this path purely based on this?

The other major issues which we'll be able to discuss on Friday are the actual drugs and how they'll be administered. I think I've probably said before that we need to weigh up the risk of leaving his line in his chest for a further six months. Most children who die during treatment, do so due to infections. And unfortunately Leo has had a staph infection every cycle so this could be a major risk. If the chemo is tablet based, urm...well... would Leo, a determined, independent 3 year old, be happy to take a tablet every day? If it's liquid based and requires an NG tube in his nose, will he tolerate the tube or rip it out on a regular basis?

Anyway, all these concerns and too many hours each day to contemplate them so let's leave it there, shall we?

Tomorrow's a new day...

Keeping an Eye on Things

Leo has had another good day although he wouldn't let the docs look at his eye properly today at the hospital. The up-shot is that the blood shot eye is still causing problems and he's particularly sensitive to light and he's wearing his hat pretty much all the time. Back to the hospital next week for more checks and we're keeping an eye on things...

I know I can be really gushy and over the top about Leo and how we feel about him (proud x infinity), but now's a time to be really proud about some dear friends of ours. Gavin and Claire lost their baby, Lillia, last year to a very rare lung disorder. Today they held their second Lillia Calthrop Tribute Fund Golf Day and as a tribute to their beautiful daughter, they've raised over £4500 for charity.

Claire was one of my bridesmaids and Gavin was one of PJ's groomsmen back at our wedding in 2004 (and gave us many smiles over the course of the evening!). They've been through so much this last year and a half and yet they've used a lot of energy, emotion and effort to give back to those amazing medical teams at the Bristol Children's Hospital and the Wiltshire Air Ambulance. As a direct result, they've raised thousands and thousands of pounds.

PJ and I have constantly looked at them to draw strength from their strength and in those first few weeks after Leo was diagnosed, it was Gavin and Claire who brought us food and homemade dinners. They're an example of people who think about others and we'll be forever thankful that we can call them our friends.