The questions that no one can answer right now - my notes in hindsight:
When Arlo gets an infection it always stings a little because it’s a reminder of the realities of CF - he IS going to get these sorts of infections.
But I think one of the biggest challenges as his mother is that there’s no knowing what else he might face in the future with his CF.
Now don’t get me wrong with this post - I am not one for wasting my energy on negativity of any kind (especially wasting energy worrying about ‘what if’ scenarios) but what I am trying to convey here is the element of ‘unknown’ that you have to live with as a parent of someone with CF or if you have the condition yourself.
One of the things that makes cystic fibrosis so complex is that it doesn’t affect any 2 people in the same way. So nobody can tell us how it will turn out for Arlo.
You could have two homozygous DF508 patients with very similar histories and they can have completely different experiences of CF and completely different reactions to the available treatment options.
Arlo’s specialist nurse told me a story of 2 patients, same age, same mutation, both very proactive with physio, both good with nutrition and exercise - but one is in hospital incredibly regularly on IVs and the other hasn’t been admitted once.
Seems so unfair! But it’s also the biggest question that goes through my mind on a regular basis - will Arlo be one of the luckier ones?
That’s the scary thing about Kaftrio too - even those outside of the CF community are very familiar with the new wonder drug that has improved the lives of so many people with CF. And it’s so good to see the success stories and I am so pleased for all those it is helping. To a certain extent we are pinning our hopes on Kaftrio when Arlo is old enough to take it. But there are no guarantees that it will work for every CF patient even if all the scientific theory suggests that it should - and the reality is that it hasn't worked for all of those who have taken it. And I think about that a lot too.😖
But we just do what all CF families do: we don’t take anything for granted, we really live every day, we count our blessings, we keep up our fight, we’re diligent with Arlo’s meds and physio - and we remain optimistic.
Only time will tell and we will always do our best for him!🤩
Here’s a diary entry from that first week where I talk about this:
Sunday 30th August 2020
Arlo’s age: 4 weeks and 4 days
Just read Arlo his first black and white picture book. It’s too early really but I’m sure he was looking at the black and white animals (it’s a book on the animals of South East Asia! Super cute!)
There’s so many moments where it’s almost easy to forget that he’s any different. But at the same time I already feel like I appreciate every moment so much more knowing about his CF. All the silly little things seem even bigger and more worthy of celebration and appreciation.
I wouldn’t even have started this diary if it had not been for his diagnosis!
The thing playing on my mind the last couple of days (to be honest there’s quite a long list of questions that I have typed out in the notes on my phone for our next hospital visit). But the main things I’m struggling with are those big unanswerable questions: How will it affect him? Will it be severe? Or will he be lucky? At what stage/age will we know whether he’ll be badly affected? Are there key indicators? When should we expect his first chest infection? What if it comes sooner that they would normally expect? Or later? How do we protect him from the bacteria resistant bugs?
Once the lungs of someone with CF are damaged, there’s no repair, and that’s one of the big factors that dictates quality and length of life. So I can see why some parents just want to wrap their little ones in cotton wool and never let go. How am I ever going to manage that anxiety? Whilst still letting Arlo get out there and live his life?
I guess we just have to continue to be optimistic, don’t take unnecessary risks, and focus on what we can control. There’s going to be a few more tears before then though!
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