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?