Things are settled again in Moly World. Two weeks of IVs, done. In the midst of this course I needed to go away to Madrid for work (I work full time in publishing, a job I love, and some of my team are based in Spain, so I’m lucky to be able to visit fairly often). I have had to cancel trips in the past for Isaac’s health, so this was the first time I was able to go, and felt safe and reassured enough to do so, as he has taken on more of his treatments himself. I honestly could not be more proud. Five doses of IV antibiotics a day, mixing them up from scratch, ensuring everything is sterile and safe - this is a huge responsibility, and he did not take that lightly. When I got back, he even offered to do more independently when he could see how busy I was. To share this, and feel OK about it? That is huge. I am growing.
He is now almost back to baseline. His LF is not close to where we’d like it, but it’s climbing and the drugs will continue to have an effect for a few more days. We wait patiently (me, screaming silently in my mind) for gene therapy clinical trials to start enrolling.
I’ve posted before about the work that I do with the Cystic Fibrosis Trust. Up until now, this has been adhoc, as and when they need people for patient (or family) insight or advocacy in certain forums (typically with researchers or pharmaceuticals). I’m now very proud to have been asked to join the Research Grants Review Committee, meaning I get to review and have a say on what research grants are funded by the charity. I really enjoy everything that I do with the Trust, especially meeting CF patients and parents, and, crucially, getting an early insight into research.
Today has been a home day sorting out clothes for a big charity drop off (long overdue, and I haven’t even started with the kids clothes under the bed) - loud music blaring. Otherwise, our days are mostly filled with our four legged family and watching spring unfold (always a reminder of hope and wonder). Have a great day x x 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 death. Thank you.
