College... tomorrow (eek!)

I’m sure I’ve posted these pictures a few times before. But he hardly lets me picture him anymore (ARGH!). Today we cycled to his new college together - he hopes to mix bike and bus. It is not a short distance (took about an hour today, but that said, I had a slow puncture, and he is very unfit after a summer of gaming and being unwell. Pretty sure he could get this down to 45). I can’t tell you how proud I am of him for trying. He is doing so much better, and the timing could not be more perfect, after a shitty couple of months for him. I’m feeling a mix of excitement and trepidation for him.... but the reasonable part of my mind knows this will be good for him. Sixth form, new friends, a better routine. Renewed reasons for staying as well as he can. That’s the hope. 

My children are so frickin extraordinary, all of them x x x 

Hope for the 10%

Little video clip here about the ongoing work to find a treatment that will work for those, like Isaac, with the rarer CF mutations. It’s been so, so wonderful to hear all the stories of CF peeps benefiting from Trikafta/Kaftrio - it fills my heart with joy and hope. Us next, please! 

Today has been a good day - his chest is settling, the cough receding. He is so much better than he was, and my fluttering heart and funky adrenaline response are slowly falling. My body seems behind my mind by a few days. 

Now, Isaac is looking at starting college. He seems happy. This will be good for him. 

Keep well out there x 

Pintupi artist Wentja Napaltjarri

A little better, day by day

He’s still not right. 

Nor is he pulling his weight, treatment wise. 

Starting college might be just the thing we need. 

A routine. 

A desire to keep well. 

New friends. 

For me, I am taking it easy - after many fretful weeks, I can’t seem to turn off the stress response in my body. 

These gorgeous girls and the beach helped no end (thank you Fountain’s for taking us ❤️) 

Keep well x 

Still coughing

Waiting for the treatment to work. His nights are the worst. It’s typical for him to get worse before he gets better, but this is four weeks now of coughing so much more. Like the superstar he is, his spirits are high ❤️

Love this Lydia Okumura. 

Plans and rosettes

My instincts were right. Maybe instinct is not the right word, since it was pretty plain to see that he was no better. My senses were right (and painfully assaulted). Isaac’s lung function is lower than when we started IVs, and symptomatically, he is just the same (if not a little worse today). 

However, good chat with the doctors today, and we have a plan. Stop IVs (he is now de-accessed and showered!). Start four weeks of antifungals and steroids. 

Antifungals as we’ve tried targeting the bacteria, and that hasn’t improved how he feels, so this is our next best bet (we know he has aspergillus and pseudomonas in his lungs, but initial tests had suggested the pseudo was causing this exacerbation, and the aspergillus blood markers were not as high as they have been recently). Steroids to help turn off his own inflammatory response. 

This is turning out to be a seven week treatment plan, on top of everything he usually does, and the side effects of these drugs are not the best. But he is needle free (we’re trying oral antifungals rather than IV in hospital) and feeling free! He starts college in just a few weeks, and we so want him well for that. Two days until his exam results too (eek!). 

It’s good to have a plan, and for now, I am focussing on that. Sorry, recent posts have been a bit morose. This one has been hard. You are only ever as happy as your least happy child, as they say, and that’s the same for wellness. 

Keep well, and thank you for reading. Please do share if you would like to help raise awareness of cystic fibrosis x 

Rosa bean after her first ever horse show. She has found her passion in life! ❤️

Circles

Isaac is no better. 

But he is no worse. 

Week three of extra antibiotics, and nothing. Nada. 

It’s like circles of drugs and coughing, coughing and drugs. 

Hospital review tomorrow.

Maybe the test results will surprise me? 

Please let me be wrong! 

He says he will refuse to go in if they want to admit him. 

This is hard. 

Kandinsky circles.

Adrenaline junky

We are still home. 

IVs are going OK. 

Doing home IVs always leaves me with this low level anxiety which gives me the constant shakes and no appetite. 

I don’t know why. Since we’re thankful to be at home and not on the ward. 

Adrenaline likely. 

How many times have I done this? 500 hundred? A thousand doses? 

Giving them is fine, but mixing them is no fun. Have you seen the size of those teeny vials against my shaking hands and summer sausage fingers? 

Review with the team tomorrow, and lung function tests. 

I’m not sure how this one will go. 

He is coughing so much still. 

He says if they ask him to come in, he will refuse. 

This is hard. 

Keep well x

Bauhaus love.