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!