Friday, September 26, 2008

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.

Thursday, September 25, 2008

Long but Lovely Day

So Toddler Group for two hours, followed by Bristol traffic, followed by hospital for anti-biotics and blood, followed by lunch with my cousin, followed by shopping for PJ, more Bristol traffic (and alot of it), followed by some very cute painting, clay model making and a hand cast by Leo. An action-packed day and totally wonderful. I am absolutely tired beyond belief but it's been worth it, and you never know, I may actually sleep tonight!

When Leo headed to bed tonight, he said he had a present for me and proceeded to stroke my cheek and give me such a big hug. He then told PJ he'd have a lovely day and his favourite bit was painting with me this evening. I know every Mum thinks their child is a genius but seriously, Leo's drawings are simply awesome. Biased? Me? Never!!

Leo was fabulous at Toddler Group this morning. Much more chilled out than me as I panicked any time anything went near his mouth..like another child's teddy or another toy. He stayed quite close to me initially but very quickly strayed a bit further every few minutes. He kept looking back over his shoulder at me for reassurance but did really well. I had thought it would take time for his confidence to return. Better than me, for sure! I sat there like the 'billy-no-mates' I am, but finally struck up conversation for about the final 20 minutes. I did get the stares, as did Leo, as he took his cap off as soon as he was in the door; and I do think other mums and child-minders found it hard to start talking to me as it's difficult not to want to ask what's wrong with him. But then it's tricky to make small talk when there's such a huge topic of conversation you can just tell they want to ask!

Anyway, after the Group, Leo held my hand and walked the whole way home which is the longest he's walked without wanting to be picked up in over four months. Okay, so we're only talking about 800 metres but even so...that's a triumph. One small step for man, and all that! Perhaps because he felt relatively 'normal' for the first time in ages, he actually felt strong enough to walk home. In fact, I think he was quite proud of himself, as he should be.

Then it was back to the hospital for his final anti-biotic shot for the line infection. Back to the hospital tomorrow for a check-up on his bloods, the infection and also his right eye. It's still causing him serious problems; so much so, he's pretty much squinting constantly with it and complains about the lights being on in the house or car. We'll see what happens tomorrow.

I met my cousin, Nicola, for lunch in Bristol's brand spanking new shopping mall today. Cabot Circus opened it's doors at 10am this morning and we headed there at lunchtime! Manic or what? Anyway, a lovely lunch was had by all and she even told me her plan to do the GRIM race in December which involves cold, wet mud, a difficult army assault course, running, dragging yourself through lakes of mud and then, a bit more mud....all in the name of raising funds for Leo to head to Disneyland Paris. What can I say? Thank you does not seem adequate...

Leo is so excited about seeing Buzz and Lightning McQueen and he definitely sees it as signalling the end of his treatment so it will be great to think we may be able to do it sooner rather than later with the help of this fundraising. I'll post a bit more about GRIM and perhaps how Nicola and my other cousin Donna (who's going to run through mud in December with her), plan to raise funds. It may be called GRIM but it will lift the spirits and heart of a very grateful young, brave boy. GRIM by name...certainly not grim by nature!

Have got to head to bed or else I may end up writing a 'War and Peace'-type posting!!

Tomorrow's a new day...

Wednesday, September 24, 2008

Eye, eye...what have we got here then?

Leo's infection seems to be responding to the anti-biotics so that's good news. One more lot of IV anti-biotics tomorrow and he should be able to have a hospital free week or so, unless he spikes a temperature, or his eye gets worse.

His right eye (the tumour is on that side) has been blood shot for weeks now and getting worse, and today he seems to be closing it even when he's doing normal things. Of course, our concern is that it's clearly not an infection as he's been on anti-biotics and had anti-biotic cream and eye drops for the past four weeks. With such a blood shot eye which is now causing him problems, is there something going on behind the eye / in the optic nerve / in the tissue around the eye, which is causing Leo such problems? Good questions, but no-one seems to have an answer which is mightily frustrating and upsetting. We were brushed off with a nurse at a walk-in clinic telling us he had conjunctivitis a few days before he was diagnosed, when actually it was cancer, so we're desperate for someone to find out why his eye is like this now.

Let's hope his eye gets better and is just a symptom of his cold and the radiotherapy, although as I write that, I know it might not be as with a cold, you'd have bilateral problems with your eyes not just one eye, and the radiotherapy was also bilateral for 24 of the 28 sessions??? Answers on a postcard...

Monday, September 22, 2008

Doing Fine and Moving On...

Leo's settled back into life in Bristol quite well, even getting excited about going to the hospital here instead of the Marsden. He cheered when we got there on Saturday and Sunday, and then today was pleased to see his favourite Play Therapist, Paula (one of the Clic Sargent funded staff at the Bristol Children's Hospital).

We've done quite a bit since we got back and it's only been a few days. And it's strange how things happen as I had two calls today from clients with whom I've not spoken in ages. Funny how they both happened today and within a few minutes of each other.

PJ has also been looking at teaching jobs and quite excited about getting back out there, and starting our new life back here properly. Not sure what's in store for any of us, but then noone does. One of us could get run over tomorrow but noone lives thinking about that risk. It's only because Leo has cancer that we're now so concentrated on each day and making the most of things.

Tomorrow's a new day and each day brings sunshine in the form of Leo Josiah Sanders...