From possibility to potential breakthrough

Lovely little film of hope, for those, like Isaac, in the last 10% of CF sufferers who still have no treatment options for the underlying cause of their disease. Hope is everything.

Isaac is doing really well. IVs ended tonight. His chest is blissfully clearer. His port site is sore and his scar, growing, but he is pain and needle free now. Clinic tomorrow and more tests, but we’re hopeful for a well Christmas break. He needs this. 

Last week my tremendous friends at CUP&A helped me raise a further £3,400 for the CF Trust, to be invested into support for people with CF and vital research, much like that featured in the short film above. We need this. 

Huge thanks to everyone who helped organise this fundraiser, it is no small feat each year. Special love to Heather, Richard and Paul, for their never ending support. And of course, to all those who donated so generously. 

Wishing you all a beautiful winter break, wherever and however you spend it. Love, love, love x 

You are only coming through in waves

Hospital visit today, and again, we are reminded of how lucky we are to have our wonderful CF team and NHS. The children's wards are full already, RSV, noro virus, bronchiolitis, and this is all before any strike action is due to take place, or the flu season to really take off. The pressure is tangible. Over in Adults, the CF ward beds are also full, so we’ve kicked off home IVs yet again.

The good news:

• While it’s not great the wards are full, we are thankful to stay home
• While symptomatically he seems worse, his LF tests were not awful (happens sometimes, and vice versa) 
• I successfully accessed the port myself, for the fourth time, and can now do this independently. This means that when our paediatric community nurses discharge us when he turns 18 (very soon) we won’t need to visit the hospital for his monthly port flush. I never thought I’d be so proud to be plunging an inch long needle down into my sons chest, but there you go
• Isaac mixed and administered the IV drugs today on the ward himself, for the second time. This means, for the first time in 17 years of doing all home IVs myself, we can now share the load. For now, I’ll mostly still do them for him (he’s exhausted enough from the coughing), but it’s a step towards independence. Doing IVs is a scary big responsibility; pushing drugs directly into the bloodstream - the risk of infection is high, but in this regard Isaac is very mature, and I’m so proud of him. Possibly others do this at a younger age? Or much older? Or never? I’m not sure. But for us, this feels right. 

All going well, we will have him well for Christmas.

I’m back to being that flaky friend who has to cancel festive plans at the last minute, and I thank the patience of my friends, family and colleagues for their never ending understanding. It still sucks. 

Isaac is sleeping a lot on this drug combination, but tolerating them otherwise. The fatigue seems to be catching, but I’m comfortably numb. 

Big love to you all x

Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after your death. Thank you. 

Hospital tomorrow

Isaac is not getting any better. We need a plan. A get-fixed-soon plan for a well Christmas x 

Filling our pill-potells - a months supply takes an hour and a bin bag full of damn packaging.