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?