Not having IVs, and time.

Despite a funny week where Isaac’s chest has been up and down (interspersed with some delightful vomiting episodes) his lung function at clinic was surprisingly stable. This is good news, and gave his argument to delay IV antibiotics some pretty punch. In the end, his consultant agreed that he can delay, but only by a week or two. This means our plan to time this extra treatment over school holidays is scuppered (he would miss less school had they been over half term, and we would enjoy a calmer week, balancing treatment and life, as I am on leave for half term anyway). Instead, we’ll being having them very soon anyway, with the added stress of super early mornings before the school rush. 

But I get it. He deserves to enjoy his half term. And while it is a bit scary for us, he does need to be more active in decisions about his own care. We hope now that he stays well enough in the interim that home IVs, when he does start them, are still an option, because if he is not well enough we will end up on the ward again, which no one wants. 

In other news: This week has been filled with incredible news for the CF Community (not that you would know it here, while Brexshit is going on) as a new wave of drugs are gaining approval around the world that treat the underlying cause of CF, and have the potential to dramatically change the course of Cystic Fibrosis in up to 90% of patients. I cried hearing that the US FDA have now approved Trikafta, the stories I have heard from people already on this drug and have felt the impact within mere hours or days (from a pill!!!) are pretty frickin amazing. Each iteration of these small molecule drugs is proving remarkably more powerful than the last. Given that treatments in CF tend to be of a more time or medically intensive type (multiple daily nebulised drugs, and frequent IV antibiotics), the idea that an oral drug each day can have such an impact is pretty mind blowing.  

Then I had a good cry last night, thinking of all those sufferers lost (friends included) that this has come too late for. And I must admit, that as Isaac is in the 10% of patients that these drugs will not work for, a renewed scream for us; the last 10% must not be forgotten (Isaac’s mutation is better explained here.) 

I am so filled with hope, anticipation (mixed with a smidgen of distrust and worry) for what might come for us, and (crucially) when. But bloody hell.... I know this is not a cure by any means, but it is definitely the closest thing to a cure the CF Community have ever come close to! 

So we wait in exciting times. 

It has been 15 odd years now since these kids of ours exploded into my heart... lately I’ve been feeling that time has suddenly seesawed such that I have less time left with them as kids than I’ve already had. I am a sentimental fool at the best of times - but the swing from wishing for more sleep and less worry that they will choke on a grape, or lick a slug... to ‘will they even want to hang out with me much longer?’ has swung too suddenly. 

If you have little ones, enjoy them while you can guys x 

Anouk. 

Rosa (insisting that her baby cardigan still fits as a crop top).

And Isaac. Since he hardly lets me point a camera at him these days, enjoy a mini-Ise x