Normality Resumes / Starts Tomorrow

And so the new year is upon us and along with it comes normality. With Leo's energy levels now going through the roof, we think he is making up for lost time. It's almost as though he's eating and running about not just for now, but to make up for the months and months of chemo and radiotherapy last year.

We had planned to have Leo increase his time at nursery school to four 5-hour sessions per week but with his energy as it now is and our need for increased income, we'll explore a few more sessions each week very soon and then with PJ working full-time, I can then invest the time Leo's at school in building my businesses again.

Normality resumes tomorrow...here's hoping it stays that way for the foreseeable future...

Tomorrow is a new day in more ways than one, and we're all looking forward to it.

Happy 2009

Just back from Scotland where we've spent a week at the amazing Malcolm Sargent House in Prestwick. When we were told the house was on the beach and on a links golf course, we never could have believed it was really actually right on the beach and our bedroom looked out over the golf course, much to PJ's happiness.

Leo is doing great. His appetite is back with a vengeance and his hair is also growing rather quickly. Whilst his hair looks dark at the moment, it may end up curly and ginger first of all, before finding it's colour again. This often happens after chemo and we spoke with many families this last week, with whom we had the pleasure of meeting and sharing experiences with. A really fantastic way of spending the New Year week as we were all able to be ourselves and not worry if we were emotional or whatever during the course of the week.

The turning of the New Year has always had alot of significance for PJ and I as it's a time when we put the previous year behind us and plan some scheme for the following year. Well this year, the scheming has been taken out of our control for the first time, so no moving abroad, no hair-brained plan to invest lots of cash in risky businesses; this year it's all about trying to gain control of a somewhat normal life and give Leo an amazing life. Our focus has changed a little due to Leo's cancer as we used to take more risks, but now we need to settle down and enjoy different experiences to enrich Leo's and our lives in more ways than usual. Shame it takes your only child to have a life-threatening illness to focus your mind?!

Photos to follow...

Happy New Year one and all.

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!