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!

Cycle 7 of 9

It's all a bit wierd being here at the Marsden instead of Bristol and it almost feels like we're starting all over again. In Bristol, we know what the nurses require from us in terms of keeping a check on what Leo drinks and eats, his nappies for weighing, also check for things going in and out and making sure he is not getting dehydrated ... which would be pretty impossible anyway as the amount of fluids they run through for the first 24 hours and then the second day for 18 hours would prevent any dehydration. We also know where things are such as sick bowls, rubber gloves and which nurse is the one to ask for x, y and z... In Bristol they also do no put up the Ifosfimide (one of the chemo drugs) overnight as it can cause swelling of the brain and so is quite dangerous, but because we're in a cancer hospital, they are able to do this anytime as they have more chemo trained nurses on overnight.

This therefore means that Leo's main chemo did not start until nearly midnight last night. I'd already asked the doctors and nurses here to ensure Leo has all three lots of anti-sickness and have them staggered so as he's always covered (whereas in Bristol they already know all about how sick Leo gets). I'd also warned them (in a nice way, hopefully not a neurotic mum way!) that as soon as the Ifosfimide goes up and he's connected to it, he'll be sick. The nurse thought he was too young for this to happen as it normally happens in adults when they know they're being given toxic stuff. Lo and behold, Leo was asleep so did not know the Ifos had gone up and he was very sick. The nurses had never seen this before and especially in a child so young.

We had been hoping to have a 'normal' day tomorrow once chemo finished and Leo was discharged, but he now won't leave here until about 6 or 7pm tomorrow so only a few hours overnight until we're back again for four more and the final sessions of radiotherapy.

Leo is such an inspiration. I know we hear this type of glib stuff said about people all the time these days, but even when he's being sick, he doesn't cry or feel sorry for himself! I guess being 3 and a half helps! He knows each day when he's in hospital that the meds make him really sick and yet he just gets on with it. Again, his age helps. But he could so easily be a complete handful every day, all day and he's not...and that's the inspiring bit. He even cheers when we arrive at the hospital. I also cheer inside, as each day we're here, each day we're nearing the end of this current treatment.

I know he's not worrying about whether the cancer comes back, although I'm sure he knows this could be the case as he listens to everything PJ and I discuss together, and with the doctors. He's also not thinking about whether to opt for maintenance chemo, although I just wonder, you know... him pulling out the NG tube and saying 'I told you I didn't want one', may well be his message to us that he knows full well what we're considering after this protocol and perhaps he's had enough. No NG tube, no maintenance chemo. At least, that's what I think the docs have in mind anyway in six weeks time once this protocol is done. We'll know more about it all when we get back to more familiar ground in Bristol. It's not up to Leo what happens next but he is the one this is all happening to, and so we'll need to explain and see what happens next.

This is chemo cycle 7 out of 9 for this protocol so who knows what's around the corner?

Tomorrow's a new day...

Another Week...Another Cycle...

So Leo starts another chemo cycle today after a very difficult week. Luckily, we're here in Surrey at the Royal Marsden for the chemo so we won't have a repeat of the four hour journey on a Friday evening like last time around. I cannot believe this is his 7th chemo cycle and we're only now six weeks from the end of this protocol. We're also only five sessions from the end of his radiotherapy so all being well, we should be back in Bristol soon, which in a way will be fab but also quite scary. Fab because we'll be back in our own beds and house, but also scary as it signifies the near-end of this part of his treatment and reality has to come back into our lives. We've been living in a bubble the last few months and if we decide not to continue his treatment with the maintenance chemo protocol, then the bubble will be burst and real life in the UK will hit home.

Leo's drinking has gone off the mark as he gave up eating food properly two months ago. His infected eye was also looking worse this week, so we allowed doctors to put a naso-gastric tube down Leo's nose yesterday for oral meds to be administered. Despite help from the play therapist, the nurses, and PJ and I, Leo was not a happy boy about it at all.

Before he had his general anaesthetic yesterday, he even said, 'no medicines in my mouth or nose, just medicines in my wigglies', and he wasn't talking to anyone in particular, but he knew we were listening. Then when he woke up, he repeatedly screamed, 'I told you I didn't want it'. To nobodies surprise, he pulled the tube out which was upsetting but not crucial as the doctors have decided to try him on a different eye ointment.

This weekend's chemo would have been upset by the oral anti-biotics down his tube, and then surprise, surprise, Leo started drinking milk again last night, and all night!! He'll probably still need a tube put back down next week whilst he's still able to have it under a general, as a few weeks after this radiotherapy finishes, he may get so tired and lethargic, his appetite will go off again. And even if he only stays on milk, as he has been the last eight weeks, he's not getting anything more in terms of vitamins or minerals. We're fortunate his weight is the same now as it was when he was diagnosed but it's the vitamins and minerals he's missing out on which can make him poorly later on.

We've been able to book a week away thanks for Clic Sargent who have a house in Scotland for families of children with cancer. We're going for New Year which hopefully means we can start 2009 on a positive start, alongside other families who will be feeling the same way. We never knew what 2008 would hold in store for us, never mind 2009, but at least a trip to Scotland will see us meet new people who totally get where we've been and perhaps where we're heading...