Question after Unanswered Question

Leo was quite sick today with his chemo and also much more tired than he's been on other cycles, apart from the first one which feels like years ago now. If it feels like that for us, how on earth must Leo feel?

We're advised there's no point reading into how Leo reacts to his chemo, although you kind of half-hope that if he's more sick and tired, perhaps the chemo is doing more to the kill the cancer? Or could it be the opposite of that? Could it be that if he's unwell with it, that the chemo is not doing anything but making him sick? So many questions and unfortunately, no real answers at this stage.

We've 'google'd' the doc at the Royal Marsden who will be in charge of Leo's radiotherapy and both PJ and I are really pleased that we're going there. Dr Frank Saran has loads of experience and is one of the best in the UK at the best cancer hospital in the UK. So hopefully this all bodes well for as good a treatment plan for Leo as can be possible. Who knows? Yet another question which no-one can answer for us.

Update

Leo is doing okay today with both the infection and chemo. He's been very sick this evening but usually once he's sick, we're able to sort his anti-sickness meds out to ensure the sickness does not come back. It's all a matter of timing really!

Thinking we'll still get the house sorted to rent here in Bristol so as we can have some normality before the temporary relocation to Surrey and then at least PJ can come back to start work in September, if possible / if Leo is well enough. I think it will also be easier to sort out ahead of going to the Royal Marsden, rather than waiting until we come back as we don't know how unwell Leo will be when we come back, or even when we'll be coming back. It should be six weeks in total but who knows what will happen?

I've also heard from a old friend from senior school who plays in a few different bands and he's offered to do a couple of charity gigs to raise money for Leo. PJ and I have decided to definitely aim for a trip for Leo to Disney World so as he can have the best life possible from here on in. No-one knows what's around the corner so we're going to aim for the best in everything from now on.

Strange Week

No updates for a couple of days for a few reasons. Leo has another staph infection in his skin at the exit of his Hickmann line. This means that as it's his third line infection and this has happened every cycle of chemo, the line will definitely have to come out this time.

So here's the plan...line stays in for IV antibiotics for a few more days and also his fourth cycle of chemo which starts tomorrow afternoon. The line then comes out Monday or Tuesday, or at some point soon. The docs then leave the line out for a week or two to give Leo a chance to get better, and if they introduce another line too quickly, the staph infection / bug could enter his body more easily as you're introducing a foreign body into the system. So the line comes out via a general anaesthetic and then back in at some point, again under a general, before the next lot of chemo in 3 weeks.

Had a good week other than that. Had been hoping to get through this cycle without an in-patient visit to the hospital. The Christening on Sunday was lovely and it was nice to see my brother, Andrew and his wife, Julia so happy and proud of their beautiful daughter, Sophie. I also caught up briefly with some old school friends of Andrew's and one, Scott, is wanting to do some fundraising for Leo if he secures a place in next April's London Marathon. So we've decided that we will now aim for a trip to DisneyWorld, Florida as soon as we're able to. Being at the Christening without Leo and PJ felt terrible; how many more family events will one or other of us have to go to without Leo?

Marie and Jack came over from Spain and Leo just loved it. Jack and Leo just slotted back into the swing of things so easily, and it was amazing and heart-warming to see Leo playing nicely with his best friend; there was definitely a sense of normality except for the visit off to A&E again last night.

We took advantage of the lovely weather on Tuesday (yes, sunshine..remember sunshine those of us in the UK?), and took a good stroll around Bristol Zoo and then visited the park at Blaise Castle with the boys in their pirate outfits. No guest blog writing from Marie as we've kind of had our hands full with our boys, shopping and the hospital, of course!

Not sure if I updated about the Royal Marsden but Leo will definitely be off to the specialist cancer hospital in Surrey for his six weeks of radiotherapy, starting at the beginning of August. He'll then come back to the Bristol Children's Hospital to complete treatment, as long as he's well enough to do so. It also looks like Leo will definitely be having the additional maintenance chemotherapy regime of daily chemo for six months as the aggressive nature of alveolar rhabdomyosarcoma leads the docs to think more chemo is the best way to treat it and maximise Leo's chances of survival.

So the house move is now on hold as we are off to Surrey for at least 6 weeks in 3 weeks time and then who knows what the future holds?

Update...Off to the Royal Marsden

Confirmed today that Leo's radiotherapy is definitely going to be at the Royal Marsden, the UK's specialist cancer hospital based in Surrey.

And that's about all I can update right now as I'm being instructed to put down the laptop and relax...yeah, right! Leo's best friend Jack and his mum, Marie (my best friend from Spain) are here to give us some sense of normal life...and it is actually working. Leo and Jack have just got on with things and held hands walking through Bristol Zoo and dressed as pirates at Blaise Castle. Another normal day then?!

Right, so tomorrow brings the first Team Leo Guest Blogger in Marie so all eyes to the ready! Update tomorrow, and more about our move to Surrey as and when we have it. If anyone knows anyone who has a spare apartment /house for rent for 6 weeks from the beginning of August, then do let us know, as long as it's very close to the Royal Marsden.

Love H x