When I say life has been a rollercoaster of late, let me clarify; this roller coaster is the Alton Towers kind where you are tossed and turned until you feel your innards in your eye balls.
On the dips, we are thrown into yet another CF exacerbation (Isaac started IV antibiotics again this week) and new pain management (he needs more sinus surgery, the headaches are debilitating). He has been struggling with fevers and fatigue, and hasn’t been able to work for weeks now. For myself, I’m constantly thinking about clinical trial options, and the fear of signing up to one trial and being prohibited from then joining another for months? Years? This makes an already massive decision feel even more overwhelming. To boot, little Rosa is struggling massively with starting secondary school. At times, I feel so torn inside it takes my breath.
On the peaks, I remind myself that Isaac is starting to respond to the antibiotics. We have an ENT appointment pending which will hopefully get him on the surgery list. We also gain more clarity and reassurance on our clinical trial options all the time. I am no pushy mum, but I will be a lioness for what is best for my kids. I’m in regular contact with both our clinical trials team at our hospital, the amazing CF Trust, researchers, and other participating hospitals.
The first trial that I described in my last post, the mRNA one, I have only limited information on, but will have more on very soon (days or weeks). The second, which I do have a lot of information on, I cannot share, as I reviewed their induction information so am under a non-disclosure agreement right now. I will share more when I can. Needless to say, this is, for us, emotive, overwhelming, exciting! It’s also fraught with anxiety - Will he pass the screening? Will he be well enough for the trials? Will we get on the trial? What of the risks? Will he still want to take part, when he knows all the details?
Ultimately this is, and should be, Isaac’s decision.
We remind ourselves often that we are so bloody lucky to live in a time, and crucially, a country, where access to these groundbreaking trials is even possible.
More soon. Have a great day x
Puppy pain relief….
The blue eyed cousins ❤️
