Hello

Isaac had his Pziser vaccine a few weeks ago now, and will be having his next after the minimum 8 week break. Grateful doesn’t quite cover it. Any worries about side effects were soon put to rest - he hardly noticed a thing. The next few weeks went well. Coughing, yes, of course. We sent in sputum on a few occasions and the lab results are promising, no new bugs (he regularly grows both PseudoA and Aspergillus, that, we now take as a given). Each time we reach that ‘this cough is not getting any better, we need to go into clinic’ point, it improves just slightly, and so we hang between the point of good enough, and we need intervention here. This is a familiar battle in my mind, but the added complexity now is that Isaac wants, and of course, has a right, to say what he wants to do. And he really does not want to go into clinic. 

In the past, CF clinic has been for us all the things; safe haven, respite, dreaded for the news it would bring, exhausting, maddening, heart warming, a place of hugs and support, of pain, sickening.... you name it. But on the whole, Isaac was up for going, if not to feel better, then at least to miss school for the day and a treat from M&S on the concourse. But now.... not so much. 

This change in him has also made me think about this blog. I started it when he was nine, and have enjoyed, and, when I think about it, benefitted from writing about him, us, CF. 

Above all, this blog has massively increased my fundraising ability and helped me raise awareness of Cystic Fibrosis and organ donation. Many people have commented that before reading about Isaac, they had no idea what CF entailed, and if I’ve helped in sharing that knowledge even a little bit, then that is wonderful, as it benefits the whole CF community. CF affects just 1 in 2,500 live births in the U.K. (this varies globally; the U.K. and Ireland have higher rates than most) and so understandably, many will never have come across the disease, or at least, known to have. And for organ donation, if a single person has signed up and (this is the crucial part) told their loved ones of their wishes, then I’m happy. 

It’s doubtless cathartic for me to write, and while I’m always happy when people ask how Isaac is, when he is very unwell, it is easier for me to update all via the blog, rather than individual messages. That way, I send out the news, and receive love and support in response without having to be on my phone all the time, rather than with him. Anyway, all the thoughts. This is not to say I will stop blogging, only that, more so now than ever, I am mindful of the content, as he transitions to adult care. He knows and doesn’t mind that I blog about CF, as long as it doesn’t reach his peers - or centres on him solely. 

These last few weeks have been full of mini GCSE assessments, more nausea, vomiting, more coughing. Last week he took his food and nutrition exam, between two days of vomiting. Mind of matter only works so far with CF, but he managed the whole exam, and I think, did an amazing job (chicken pie and trifle, from scratch, in two hours - more than I would take on). My heart bursts with pride, again and again. No doubt he will need more IV antibiotics soon, and his fourth lot of sinus surgery is in the pipeline. His compliance with treatments continues to vary (taking tablets late, doing the minimal physiotherapy, mostly doing his nebulisers) and these choices he makes feels like little pins being screwed in my heart. On another level, he is a smart, he is sensible, he is sound. I tell myself this is a rebellious phase, and that he will want and need to stay well for all that he wants to do in his life, and when he realises that, start adhering better. Please let that be soon, and my pin pricked heart not leak before then. 

Keep well x 

Rosa in the garden at night, Obie, lovely Anouk, and a very serious freckle face ❤️