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.

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...

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...

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...

Looking Back to Look Forward...

We've been having fun back in Bristol today although keeping a close eye on Leo as he'll be neutropenic this weekend plus has this infection, cough and cold. He's fine in himself and pleased to be back here in Bristol (not that he's sleeping in his own bed..his bedroom is his play room during the day and becomes PJ's bedroom at night!!) We'll soon put a stop to that (she says..just in case that Nanny from the TV is reading!!)

We also watched X Factor tonight as Ruth from Polaris World's band Dos was on (whom we saw a few times in Spain and who also helped Leo's school do their Christmas Show last December) and she has got through to Boot Camp. Woo hoo!

Leo then took it upon himself to do his own X Factor and we have video evidence; we've saved you the bother of any footage of PJ singing a jazz version of Humpty Dumpty and me singing / attempting an operatic Twinkle Twinkle Little Star...but we do have evidence of Leo as a rocker! Video to follow...

In the meantime, we've also spent this evening listening to the US giving the European Ryder Cup team a good hiding in Kentucky...as well as reminisced quite a bit about the past. The pictures above are all from one year ago, nearly to the day...how time flies! And I thought it would be good to remember what normal life was like. Sometimes all it's takes is a look back at the past to appreciate the future, and that life may well be normal again, at some point. In fact, this is now our normal life and the past is the past.

The Best Laid Plans...

You'd think we'd have learned by now that no plans stick...make plans to meet friends or family and you can pretty much ensure it won't happen. We've planned to see Ian and Trina countless times and to no avail...something related to Leo / cancer / treatment / illness just keeps stopping us. Urgh...nothing more frustrating. Our apologies Ian and Trina; we will get together soon...shall we perhaps get a date in the diary for 2011? You never know; we may be able to keep to a date then?

At least there's a slight upside to us having to rearrange plans yet again...we're back in Bristol after managing to secure time tomorrow and Sunday for Leo to have his anti-biotics on the ward at the Bristol Children's Hospital. He has a line infection and this is by far the most risky so far. All the other ones have been staph infections of his skin where the Hickmann goes into his chest. However, this time the infection is a staph one again BUT this time, it's in the actual line itself.

Leo's been on anti-biotics since Monday and when they took blood again to see if anything grew on Wednesday, staph grew within 12 hours and so is quite full on. Plus he'll be neutropenic at some stage over the next few days and as such, his body will have no resistance against an infection except for the anti-biotics. So we've got everything crossed that the anti-biotics so their thing. The plan is to take blood to grow cultures again on Tuesday and if they do grow again, the line will definitely come out as after over a week's drugs, the infection should be gone. If it's not, Leo'd get very sick and indeed one of the main reasons children don't survive their initial treatment is due to infection.

Tomorrow's a new a day...and at least we're in our own house, back in Bristol and we can push forward to form some sort of routine and order to our lives.

Woo Hoo!

Radiotherapy is done and dusted, and Leo is still doing great. Woo hoo! He's just ordered pizza from the Ward Chef and he's enjoying looking at his generous gift from the play specialists and the special balloon sword made by Mike, the Anaesthetic Technician, who has been a constant in Leo's team since day one here at the Royal Marsden. He also received a personalised certificate made by Andy, one of the radiotherapy team, which had a photo of one of the Popoids Leo would make daily and take in to show everyone. Lovely team, very nice to Leo, PJ and I at all times and always really nice and respectful of our fears.

PJ also asked the team for us to keep the mask they used to keep Leo's head still during radiotherapy. It's like something out of a sci-fi movie as there's no eye holes and a large gaping hole for his nose and mouth. There's also bolts in six places which screw into place on the table so he does not twitch whilst under the anaesthetic. There's only a 3mm tolerance of movement for the radiotherapy photon beams and so you can imagine, it does not take much to move that tiny amount, hence the mask and daily anaesthetics. A photo would do this description more justice but I'll consult with PJ before I post it on here!!

More anti-biotics for the staph infection and a bit more tomorrow, and then who knows what the weekend brings!

Either way, this is a massive milestone which felt like it would never arrive when we started six weeks ago. It'll be another 8 weeks or more before we know the impact of the radiotherapy and chemotherapy combined.

What Next?

Only one day to go until radiotherapy finishes for Leo and this evokes very mixed feelings in all of us, for all sorts of reasons. Relief, but fear also for what the future holds. Not just in terms of the cancer itself, but what long term damage has this highest dose of radiation to the brain and right eye done? PJ and I have sanctioned this treatment but with little other options on the table expect for one, and we won't go there. What about all the problems with possible memory issues, sight issues, stroke issues, further cancer issues as a direct result? On the other hand, we're mightily relieved that Leo has been such a brave and strong-willed boy during this time as it's seen him through (and seen us through) some very dark days indeed. Leo's energy is still full-on, almost as though not only are they giving him Red Bull, but also I reckon they fit him with Super-Ultra-Mega Duracell batteries each and every day!

He does have another staph infection; about his sixth, but hey, who's counting? And what's a staph infection amongst friends? And what other cliches can I think of? So since Monday, Leo's required more IV antibiotics and has even been pushing his own drugs since Sunday. When he had his lines 'flushed' with saline and heparin on discharge from the chemo, the nurse asked if Leo wanted to do it. Amazingly, he nodded and did it himself with her standing by. He's 3! Is he just completely institutionalised now? Regardless, we're proud of him and think he's coping way better than we are.

The infection may hold up our return back to Bristol and a planned recuperation weekend at my parent's cottage, but we're yet to find out if the anti-biotics are doing what we need them to do.

Who knows what's next but then doesn't the same apply to all of us? Who knows what tomorrow can bring as this year is testament to? I only came back for my bowel operation and hysterectomy with the boys coming back to see me and all very last minute too. We've ended up having to up roots back to a city we pro-actively left not long before for a wide variety of reasons. So if we can get through this type of madness, we can pretty much get through anything, can't we?

Run, Leo, Run

Whatever they're giving him, it's not knocking him out at all! He had another cycle of chemo this weekend and we left the hospital at 3pm on Sunday, then PJ and I spent about two hours chasing Leo around a local park. Is it Red Bull they're pumping into him? Whatever it is, he's as cheeky and lovely as ever...so much so I woke up to having my feet and knees tickled for the third time in a week, but this time at 6am!!!!

He's just had his general anaesthetic now and so he has just 3 radiotherapy sessions left after today. Woo-hoo!