From Rosa. Age 6.

Isaac sometimes is mean to Anouk and me. 

And he asks Anouk to go and get him sweets at the shop. 

It’s hard for Isaac because he doesn’t like doing his nebs, they taste funny. 

Sometimes it is hard for isaac and we try and make him do it. 

Isaac is brave because he doesn’t do anything when he’s in pain. 

I hope that they will get a potion for Isaac to not have CF. 

I love Isaac to death. 

I feel bad for him. 

I hope his IVs will go away. 

Isaac makes me laugh and he plays with me all the time. He always wants to pick me up. It’s annoying sometime, but I like it. 

I hope the Doctors on his birthday give him a potion to make his CF go away. 

I hope everything goes away that he worries about. 

By Rosa Banosa (of the cheeky cheeky nosa) x 

Robin Williams offering toilet paper to The Thinker, ca. 1990s.

Bronchoscopy, IVs and subsequent results

The Bronchoscopy went as well as we could have hoped. It was a long day of nil by mouth (always a frustration point for my ever hungry boy) with delays in going to theatre. But having been bumped off the list by emergencies many, many times before, we were very glad to only be delayed, not cancelled (please never under estimate the huge, debilitating pressure on our beloved NHS). General anaesthetic was fine, he tolerated it really well this time with no big de-saturation’s (his oxygen levels did not dip badly while he was ventilated). I was on my own this time, so spent a nervous hour pacing the corridors (never gets easier) remembering that last look of him, confused, glassy eyed and unreal before the anaesthetic took hold and he fell ‘asleep’ (under GA looks nothing like sleeping by the way, it is very hard for a parent to see). Recovery was OK; usual sore throat, grumpy, disorientated. All IV access was through his port this time, which was great, meaning he didn’t need a cannula as well. He slept and coughed a lot all the rest of the day as his body recovered. 

We kicked off IVs on the ward, but we’re now happily at home. I administer the IV drugs, and the lovely community nurses come every 2-3 days to do bloods (they need to check the levels of one of his antibiotics in his blood stream regularly to check that it’s not too high. Too high could be very hard for his kidneys/liver to process, causing potential and irreversible damage). All good so far. 

That said, Isaac has been sick almost every day since starting IVs, and experiencing chronic nausea despite lots of anti-sickness drugs. Right now, the doctors think this is an unfortunate concurrent viral thing. I’m not so sure, it’s so very hard to know in CF what causes what; it could be his current exacerbation, viral infection, drug side effects, or CF tummy related - and his tummy wasn’t right pre-IVs either. 

Today he managed his first whole day at school in a week or so, so hopefully this is coming to an end. 

While all this is going on, my anxieties build as I know the lab have taken the mucous they washed out of his lungs during the bronch (called a lavage) and are waiting to see what bugs grow on their agar plates to see what is going on in his lungs. Early results (some take days, some weeks) reveal more fungal infection. This is mega frustrating news as he only very recently had treatment for this (early in May). To have it back, again, so soon may mean he will need longer term treatment to attempt to kick this out for good. We meet with his team next week, but I’m aware treatments may include 1) long term anti fungals and 2) steroids - both of which have pretty terrible side effects in his case. And this would be alongside his usual treatment for his chronic bacterial infection (PseudomonasA). Right now, I’m trying not to worry (trying, ha! But not always succeeding). 

The positives: We’re on acute treatment already; We know now what we’re battling (which is much better than not knowing, not treating, and him continuing to lose lung function); This is exactly why the bronch was a good idea - making it all worthwhile. 

We don’t know enough yet about what this reoccurrence means and what his options are. So until next week, we carry on with IVs, we do the new treatments, and we very much hope for improvement. Plus, whilst his tummy has been horrible, his chest is sounding a little better these last couple of days. 

Have a great day x x x 

PS; Fundraising update: We are just £345 away from our £5000 target. Thank you so much! If you’d still like to support us, there is a link on the picture of Isaac to the right (unless you’re viewing on a mobile). Some of my hero team are still wearing medical boots while they recover! x 

Robert Mapplethorpe ❤️

We made it (and hospital)

It was not only 67km.... but 69 (some 43 miles) due to some wee detours along the way. Starting at 6am, with torrential rain and injury time we made it to the end at nearly midnight. During this epic walk I know we all hit walls, felt pain, weariness, love and laughter, but to the end, we were together - guiding each other in the darkness. Thank you so much for supporting us, it means so much to all of us (if you have not yet, you can still sponsor us here) We’re almost at our target (£5000). 

To Jo’s team, Michelle, Jo, Jenny, Cassie, Erika and Tracy, incredible job ladies, and you beat us too! I can’t thank you all enough for joining this bonkers mission and raising much needed funds for the CF Trust. 

To my Holywalkamolies team - I hope you know how much I love you all. 

Shell, Matt and Sarah, it has been so incredibly special to spend so many walk and training hours with you - you were all incredible! 

To Bon, Jennifer, Bodhi and Anouk, you made this all happen. I’m not sure I’ve ever been so happy to see someone as when we saw you all at the checkpoints!

Gem and Annie, you lied! You said you couldn’t possibly walk that far. But you did. And your singing and dancing saved me from despair. Thank you for all the laughter. 

To Gavin, I hope your feet are not permanently damaged. You mad old lovely fool! 

Some pictures for you below of some very special people and some pretty awesome memories. 

We are going into hospital on Thursday for a bronchoscopy, followed by two weeks of IVs, and then possibly a CT scan too. Isaac is home sick right now and feeling pretty rubbish, so we’re hoping he will be well enough for theatre. Sunny side up? It’s good to have a plan. More soon x 

If the sun refused to shine 
I would still be loving you 
When mountains crumble to the sea
There will still be you and me 
Kind woman, I give you my all 
Kind woman, nothing more
Little drops of rain whisper of the pain 
Tears of loves lost in the days gone by 
My love is strong, with you there is no wrong
Together we shall go until we die 
My, my, my inspiration is what you are to me 
Inspiration look, see
And so today, my world it smiles 
Your hand in mine, we walk the miles 
Thanks to you it will be done 
For you to me are the only one
Happiness, no more be sad 
Happiness, I'm glad
If the sun refused to shine 
I would still be loving you 
Mountains crumble to the sea 

There will still be you and me

Zeppelin. 

Antibiotics, bronchoscopies and CT scans.

Thursday we popped into CF clinic for an emergency review, as his cough is building. We saw the registrar as many of the team are away at the European CF Conference, but he was great, really took the time to listen and understand where we are right now. The relationship we have built with our MDT (multi disciplinary team), which is made up of CF/Respiratory doctors, CF specialist nurses, physios, dieticians, pharmacists and psychologists, is an essential part of Isaac’s healthcare, and it’s both important and valuable for Isaac and I to feel part of the decision making, not simply passive participants in his care. Anyway, his lung function was (as predicted) down, and he had more bloods to check his infection markers (TBC). 

We discussed that for six months now his LF has been creeping down steadily (as lung function is considered a vital measure of wellness in CF, this is major concern). The doctor suggested that as Isaac had been so poorly in Oct 17 (read more here) this may have contributed to his overall decline, but he also agreed with me that we don’t want to simply accept that this is his new baseline, without really understanding why this might be, and nor will we stop trying to regain lost LF. 

It’s also clear that he is exacerbating right now (despite recent IVs, anti-fungals, and steroids) and we need to deal with this now. Therefore, tentatively the plan is a week on Cipro (extra strong oral antibiotics, started last night), with a review in one week. If his LF has not improved by then, IV antibiotics will be kicked off in hospital, with the idea of doing a bronchoscopy (a looksee in the lungs with a camera, plus a flush out of his mucous to test in the lab) at the beginning of the course, and potentially another CT scan following the course (to have a more detailed look at his entire lungs; beyond the point they can bronch, essentially). It’s a tentative plan for now, his MDT will discuss at their meeting next week. It’s incredibly important to know we’re not missing anything, and bloods, xrays, medical reviews and culturing sputum samples can only give us a partial picture; a bronch and CT will ensure nothing is escaping us that might explain why he’s declining. 

Not great news by any means, but a reassuring plan of action, and in true Isaac style, he took it all in his stride. There is good news scattered in each clinic visit too... his weight and growth are great (something many people with CF struggle with), his exercise tolerance is amazing (he does CrossFit and is in a football team) and his gastro problems are much, much less frequent and severe than they were a few years ago (a cycle of DIOS and problems with nausea that for a while I thought we would never get out of). Lots to be thankful for, heaps to hope for. 

Have a great day - and please think of us, walking for some 13,14 hours tomorrow!

Picasso ❤️

Blisters, love, and gratitude.

Holiday was wonderful. The kids had a ball, swimming dawn until dusk. I’m not sure if I explained about the holiday? If you’ve been following this blog for a while you may remember that Isaac had a wish granted 5 years ago by the wonderful charity Starlight. His wish was to go to the biggest water park in the world (he is part fish) and amazingly they really, truly did this! We spent 5 breathtaking days in Dubai at Atlantis (he is still featured on the Starlight website here if you want to read about his dream holiday). At that time, our little Rosa was just one, so we made the difficult decision to leave her at home with the grandparents as it would be too hot, and having her there would mean we could do less with Isaac and Anouk. So ever since then, we have promised Rosa that we would go again, and revisit everything we did then - as a family of five. A good deal gave us our chance - only four days this time, but every second counted, and our fears that Isaac would not be well enough to go were proved gladly wrong. 

Following the Voriconazole (to treat his evil lung munching fungus) Isaac was really well for a couple of weeks. Side effects made his poor lips blister so much they bled at nights (he looked kinda goth in the morning, lips black with dried blood) - but his chest cleared. 

Now? Coughing again. A low, deep, rumbling cough. Clinic have squeezed us in this week on an emergency list. It’s a worry+ situation; an increase in symptoms is always a worry, but gets a plus whenever ‘other life’ factors (Christmas, birthdays, holidays, epic fundraising walks....) are imminent, as I’m away this weekend for our walk. In fact, the walk is a worry generally as I’ve hurt my hip (for a couple of years now I’ve been able to click my hip in and out of the joint - true and, yes; yuck) and the last training broke me slightly... but I’m still very much planning to make it round (even if my wonderful friends joining me have to wheelbarrow me!). 

Thank you SO MUCH for all the support so far - it really means the world to me, our family, and our whole Holywalkamolies team. You can still sponsor us here - I hate to ask (at least, as often as I do), but CF research absolutely needs these funds, and Isaac is sadly not one of the 90% of people with CF who will benefit from drugs which are soon to be licensed which treat the underlying cause of his disease. He unfortunately has a rare, severe mutation. This means a longer wait - but I’m confident a cure will come, in time. Thank you for helping in any way you can x 

Huge thanks to my friends and family Jo Cayley, Gavin Dytham, Michele Dytham-Ward, Jennifer Dytham, Sarah Cater, Matt East, Gem Wilkins, Annie Marriot and Bonny Fountain. Michelle kavanagh, Jo Elliot, Jenny Hays, Cassie Flack, Erika Pyne, and Tracy Coulton-weir for joining me on this epic 67km trek.