Do’in better

As bleak as things looked late last week, come Saturday night.... Isaac slept well, and wow, how sleep can heal. The many, many drugs are starting to do their magic, and our boy is starting to feel better. Hoping now to put off IVs for a little longer. 

Although more IV’s and surgery are pending still, we celebrate these little victories. Thank you all, for the love and support x x x

Clinical update (not the best).

Hey. 

Isaac is sadly no better. In fact today was pretty horrible; endless, violent coughing. 

He manages the odd day at school, but other days, the sinus headaches, the nausea, the vomiting, the coughing, and exhaustion from all of these, and bought about by both bacterial and fungal chest infections and the toxic treatments needed to fight these, all making his mornings pretty impossible. 

It is very hard to hear, to watch, to feel so helpless in the face of it, let alone to endure yourself, day in, day out. 

We do have new treatment options, and a fabulous team only a phone call away. We have back up antibiotics in stock at all times. This is so when he becomes more symptomatic we can quickly add in this third antibiotic (he already nebulises Colomycin and Tobramycin daily, and takes oral Azithromycin, which helps reduce the inflammation in his tired and angry lungs as part of his daily and ongoing treatment plan). We will now keep in stock a back up anti fungal, so we can jump on exacerbations quickly for both bacterial and fungal infections - since this aspergillus seems set to stay put. Bastard. 

For now, he is completing his back up antibiotic (Cipro) and a months course of the anti fungals (Posaconozole), and we’re monitoring his lung function and symptoms closely (lung function is down 10% further right now). After that, options include nebulised and IV anti fungals. The biggest downside being IV anti fungals are highly toxic, so must be done via infusion in hospital. If this becomes a standard treatment option, and he requires these IVs as often as he does IV antibiotics right now, we could be looking at four or more two-three week stays in hospital a year. That is pretty life changing, since we’ve managed the majority of his courses of IVs at home for years now, giving him a better quality of life. However wonderful the care is, long periods of time in hospital is no quality of life for anyone, not least for a child (the child is actually bigger than me now). 

We’re hoping the three remaining weeks on the anti fungals will help and he might get a break before his next IVs, but with his sinuses and pending surgery (and considering how bad he is today) that might be unlikely. His CF team are adding pressure on ENT to see if we can get him bumped up the waiting list. Should the pandemic mean they stop planned surgery again, this would be terrible, leaving him in this cycle of pain and infection. As always, Isaac’s standard response to people asking him how he is? ‘Not the best’. However bad he feels. How he copes I don’t know. 

My knee jerk reaction is to start planning my next fundraising (watch this space). Thank you in advance for your wonderful support. 

Hope I can deliver better news on my lovely boy soon x

Little festival Ise.

Strange looks from cows

Isaac needs more sinus surgery, and this time, it’s going to be an much bigger op than the last time (...think bone being chiselled away and a three month recovery time... sob). On finding this out, I walked Obie deep into the green fens and had a little scream, tore at the grass, and stomped my feet like a toddler. The cows stared but seemed quite used to this kind of behaviour. Who knows what else they witness? 

This is his third lot of sinus surgery in the last three years. The polyps which seem to love populating his poor sinuses are more common in CF patients, and he is one of the unlucky ones in this respect. We knew after the first surgery that they may come back. And after the second, that a bigger op would be required if they came back yet again. But this soon? His last op was just before lockdown. That sucks. 

Isaac is his usual stoic and heroic self. He knows that from now the headaches will only build and build, and daily life goes slowly from hard, to intolerable. But there is no choice to make, really. Only surgery can help now. 

His surgeon from the last two ops wants to do this himself, as he knows Isaac’s anatomy (scarring from previous ops included) but due to COVID, waiting lists are longer than ever, and planned surgery may go on hold again should there be another peak. We do not have the luxury of going private, as due to his CF, he is high risk for anaesthetic and post op infection, so needs his CF team to be there too - so we’ll likely need to fight for him to get up the list again. 

As with any surgery, they must outline the risks, and now Isaac is old enough to decide for himself, they described these to him: Death and the potential to go blind (since they operate so close to the eyes). Super. 

Imagine being 15 and taking all that in? But also knowing, you have no choice? 

It is like a dagger in my heart that my son has to face these things, again and again and again. And now, three days back into school he came home coughing like a trooper. Day four, he is off sick. COVID? CF exacerbation, despite his last IVs being in July? The vicious cycle of lungs and sinuses infecting each other does not help either. Can he not get a break? 

Everyday I wish I could take it all away from him. 

I’m frustrated, but also thinking of all my friends having a super tough time right now; grieving for loved ones, coping with cancer diagnoses, my fellow CF families, and my friends struggling with both physical and mental ill health in these tricky times x 

J

Walberswick, Suffolk UK. 

Thank you Sarah for a wonderful weekend away, love you loads ❤️