500, because research can’t wait.

Today Isaac went back to school. having missed another three weeks, including pre and post op isolation. Today is a good day; He has finished the angry steroids; the extra antibiotics (those on top of the two he takes daily anyway, prophylactically); and, best of all, is weaned off the pain relief (....mostly. It is really frickin hard to watch your 15 year old being reliant on morphine, fentanyl, brufen, and paracetamol so much). 

I was about to write that it’s been a bumpy month, health wise. But that could be said for the last year, or even... three years if I’m honest. This time three years ago we were arriving home after weeks in hospital and being on intensive care (read more here), and in my more realistic moments (me being a born optimist, I seldom take off my rose tinted glasses) I concede that this was a pivotal point in his health declining. Just as we feared. 

He won’t feel the full benefits of this third sinus op for weeks yet, but he is seeing some, and it’s reassuring to think of that PseudomonasA infection being cleared from his sinuses, if not from his lungs. He is home, he feels well, and for that, we are super grateful. 

Pseudo first infected his tiny pink lungs when he was around 18 months old, and have never left - the little bacterial bastards. I remember with a mix of sadness and awe those days; holding a nebuliser mask on his face, while the machine rattled and grinded, noisily aerosolising the drugs to reach the far off parts of his little lungs, for 30 minutes at a time, with Thomas the Tank Engine on full blast - he took it all in his stride, even then. But that’s not to say it was easy for any of us. When we first moved to this house, we camped downstairs for months while we renovated the upstairs (little cottage, low ceilings, tall husband...), sleeping together on a mattress on the floor, making physiotherapy fun by jumping off packing boxes, piling cushions on the floor for percussion therapy, making bubble pep by blowing through straws into soapy water to teach him breathing techniques, community nurses coming round amid the chaos of building work to help with bloods during IV antibiotics, and yes, I remember it was hard, but also, weirdly, the best of times. Time does that though, doesn’t it? Only the Pseudo stayed put (as is typical in CF, the damn bacteria love a sticky CF lung) like an unwelcome guest. Technology has thankfully moved on, so today, while he still needs to do six nebulisers a day (one to draw moisture into his lungs for physio, another to soak the bugs in antibiotics after physio, and finally an enzyme to help break down the sticky mucous inbetween the physio, all twice a day) the machines are now more mobile, quieter, and quicker. Right now, his lung function (the main measure of wellness in CF) is frustratingly low, and we know as well as the pseudo he also has fungal infection invading his precious airways. But we’re hopeful that this is a post op lung function dip, and it might bounce back still - before we have to climb back on the IV antibiotics train once more. One positive from the pandemic is having home spirometry now, meaning we can test his LF as often as we feel we need to. 

But today is a good day. Today he feels well, and we have learned to celebrate each and every one of those. And now, I am delighted to announce the launch of our most recent fundraiser for CF! 

Alongside a whole LOAD of things that we are doing at my work (we hold a raffle each Christmas, which this year will, clearly, be different - but amazingly bigger and better than before thanks to the most generous support I have from friends at Cambridge University Press) my new personal challenge is to walk... 

500km over the month of dark, cold, dreary January

This is some three to four hours a day on average (and I love to walk, but that far? Everyday? In the mud...?!). In addition to this, some very special people are creating their own challenges on the theme of 500 too (see website for more details, and if you’d like to get involved in fundraiser 500 with your own challenge, whatever that might be, please let me know, the more the better). 

I appreciate this year has been challenging, for us all, but if you can sponsor us even a little, and support the incredibly important work that the CF Trust do at this time when charitable donations have almost completely dried up, and the research cannot wait, please visit our fundraising site here. I will post updates along the way. 

HUGE thanks to Heather, Kay, Charlotte, Megan and Beth for organising all the fundraising at work, I could never do all this without you! Also to all the kids that are pledging their own 500 challenges. BIG love to you all x 

Have some lush Gerhard Richter ❤️

I was thinking earlier...

That if you could only include three statements on my gravestone (OK, I was walking in the rain, feeling ill, and listening to Graham Greenes’ ‘The end of the affair’ so this kind of thinking was very much in context, I am not normally so maudlin) that they might be; 

Loved her children obsessively. 

Knew how to party. 

Had THE best friends and family ever. 

Thank you Sarah ❤️

Recovery is hard, but Isaac is beginning to feel better. We had two emergency trips back to hospital on days one and two at home, and needed to have one stent removed (which may cause more scarring). He is also at the angry end of twelve days on steroids, and is still dosed up on pain relief, but each day is getting a little easier. The rest of us are germy and coughing, which I wouldn’t mention at all, only we worry that he will get this next too, and a virus would almost certainly set off a CF exacerbation, which he really doesn’t need. 

Lockdown #2. Sending love to you all x 

My mantra, now in neon lights!