Vaccine!

Tomorrow Isaac will have the Pfizer vaccine that we have been so desperately waiting for. This is within a month of his sixteenth birthday (the age at which is is licensed for). He is not well right now. Waiting on lab results and he will be reviewed by his CF team this week, but that he can have this vaccine at last is a huge relief. Fingers crossed for few side effects. 

Have a happy Miro. Tonight we celebrate. Love, love, love x x x

Small molecules, vaccines and a health update

Love this TED talk and so grateful it remembers the 10% of CF sufferers for whom this new generation of treatments will NOT work (these treatments truly are ground breaking - watch the talk if you have the time, this is science at its best). This is not a simple ‘he didn’t get on with that drug’ scenario; the current generation of drugs will not, and never will help Isaac due to the specific mutation of CF that he has. He needs a different kind of fix. Sorry, I feel like I have said that a hundred times... 

These last weeks have seen Rosa, Anouk and Isaac return to school, which felt huge, after so long. I actually forgot when lockdown #3 even began. It is great news for us all, but after so long together, I’ve taken to madly hugging and smelling them when they got home, having missed them being around. 

Isaac got a good week and a half at school under his belt before coming home sick. DIOS issues again. Thankfully this time the plan is to treat at home, instead of on the ward as we did last time. His cough is also increasing, and I lie awake at nights with this echoing around my room and mind. Yesterday we had an ENT appointment, and found out that his nasal polyps are back and he will need more sinus surgery again soon (his fourth). 

If it were me, with all these health issues at once, I’d feel cursed and mega frustrated. Isaac just takes it in his stride. With his (non-exam) GCSE’s upon him and the fact that his last surgery was so recent, the team are hoping to delay the next for as long as possible with extra treatment (doubling the required nasal rinsing, steroid sprays). This is until his headaches become unbearable (right now, he feels stuffed up, but OK). We are very used to PPE in clinic, but this surgeon was in something else, kinda like a hazmat suit but with more pipes; we could hardly hear a word he said (nasal scans would release any COVID infection far and wide... and I was asked to leave the room for my own protection). How they manage to work like that, all day? Our gratitude to all key workers throughout this pandemic is boundless. 

We are busy chasing a COVID vaccine for Isaac. Thankfully, data on CF sufferers having COVID is very positive, likely due to the fact that they are, a) predominantly young and b) were/are shielding. He is now eligible, but the problem is that he can only have the Pfizer vaccine, which is licensed for over 16’s, unlike the AZ one. Both seemed to be widely available just before his birthday (when they would not allow us to make an appointment) but now we can book him in, all we have locally is the AZ. The hospital cannot help; they say it’s the GP’s responsibility. GP’s are trying, everyday, but having no luck, even though we are more than willing to travel. Isaac has a history of reacting badly to viruses; on each occasion that we have been in hospital and he has become unwell enough to need O2 has been when he has also tested positive for a virus (which in turn, allows his PseudoA and aspergillus infections have a little party in his lungs) so however good the data appears for CF/COVID, we remain anxious. 

Have a great day x 

Song for Zula, Phosphorescent. Love this, listen here. ❤️

Some say love is a burning thing
That it makes a fiery ring
Oh but I know love as a fading thing
Just as fickle as a feather in a stream
See, honey, I saw love,
You see it came to me
It puts its face up to my face so I could see
Yeah then I saw love disfigure me
Into something I am not recognizing
See the cage, it called. I said, come on in
I will not open myself up this way again
Nor lay my face to the soil, nor my teeth to the sand
I will not lay like this for days now upon end
You will not see me fall, nor see me struggle to stand
To be acknowledged by some touch from his gnarled hands
You see the cage it called. I said, come on in
I will not open myself this way again.
You see the moon is bright in that treetop night
I see the shadows that we cast in the cold clean light
I might fear I go and my heart is white
And we race right out on the desert plains all night
So honey I am now, some broken thing
I do not lay in the dark waiting for day here
Now my heart is gold, my feet are right
And I'm racing out on the desert plains all night
So some say love is a burning thing
That it makes a fiery ring
All that I know love as a caging thing
Just a killer come to call from some awful dream
And all you folks, you come to see
You just to stand there in the glass looking at me
But my heart is wild, and my bones are steel
And I could kill you with my bare hands if I was free

Isaac is doing, OK.

Our boy, 16?! 

Beautiful Anouk, at the clunch pits

Rosa Isaac huggles

Cake by the amazing Bonny Fountain ❤️

It has been a good couple of weeks. The kids are back at school, and all going well, Isaac will get the COVID vaccine very soon (he can only have the Pfizer one, as the others are not licensed for under 18’s, and we’re struggling to find a place that will take him; but if we need to hassle and/or travel, we will!).  Test results from his annual review are still pending. 

Keep well. Not long now x 

Sixteen

The storms too, they pass. And then you just see the sunshine. 

❤️❤️❤️