Early New Year Cheer

I bring early New Year Cheer to you good people! I am excited to tell you that I, along with six fabulous ladies will be entering what we hope will be our biggest fundraiser for the CF Trust yet....  

Almost eleven years ago.... When Isaac was first diagnosed at three weeks old, I set a goal in my mind of raising £50,000 for the CF Trust by the time he was ten. Our family and friends have been wonderful and so far between us we have completed the following; 

10k, half and full marathons 

Clmibed Ben Nevis and completed the Yorkshire Three Peaks

Shaved off hair

Skydives

Organised a family fun day

Raffled off wedding dances and asked for donations in lieu of wedding presents

Held charity numerous Bridge days, and many work cake sales

Zip slides across Old Trafford

For Isaac's first personal challenge he canoed from where we live to the coast

Campaigned for our employers to have the Trust as their Charity of the Year

Held a Christmas Raffle annually at Cambridge University Press 

Got all made up in fancy dress to complete sponsored walks

Made and sold over 500 scented candles 

And yet, I am not quite there..... I failed my target :o( 

.... But they say, better late than never, right? If I'm being kind to myself a few pregnancies and many hospital stays have somewhat thrown a spanner in the works, but I am determined to make up for it. And fortunately for me, I have some fantastic friends to help me as always. So we (my ever supportive sister Jo, and my friends Lemon, Sarah, Jess, Erika and her friend Sarah) will be taking on the next challenge together - one much harder than our past efforts... For we will be trekking 50km in a day, over the very steep Brecon Beacons (the training grounds of the SAS). Jeepers! 

I am only about £5000 off reaching my goal. I would really appreciate every single donation, big or small, towards that goal.... So please visit our fundraising page here and continue to read and support this blog.... the whole point of which is to raise awareness of CF, organ donation, and share our own news with friends, family and other CF families (who I LOVE hearing from, so please do drop me a message). 

Thank you SO MUCH for your support - it means the world to us. Lizzy x

Festive pics from Christmas past....

Angelic Isaac*. 

Adorable Anouk. 

Rosy cheeked Rosa.

*Clearly I have an unsafe obsession with allowing small children to wrap Christmas lights around their necks. Don't try this at home kids. 

A Christmas CT scan

Merry Christmas one and all. 

Kids had a ball yesterday. Presents galore, family and friends round. It was more G&T's and prosecco than Christmas TV and charades this year, so today is very much about family, films and securing the best spot on the sofa (although Obie and I had a lovely long walk by the river too. I needed that). 

Isaac had his CT* scan two days before Christmas, and we found out some results that day (no news usually is good news after a scan, so a call this soon is gonna set off alarm bells). A registrar called to say they had a positive result, which at first I thought was just good news, all was positive, right? But sadly no. It was positive as in; they positively found something amiss. 

We're not quite sure what this problem will mean for him yet, but most likely he will be scheduled for another, more detailed scan quite soon. He is also being referred to a new Gastro team. More on this when we know ourselves. This issue may be completely separate to his having CF and the DIOS episodes he has been having; a whole new thing. 

It's always horrible finding out that something is wrong, and hell, life really has dealt him some pretty shitty cards lately, but on the brightside we've discovered what is causing him all this pain, and that's gotta be good. He has had a good few days, less sickness, but more nausea and stomach aches, and he continues to eat about half the amount he usually does (I hope the ample festive chocolates will help maintain his weight, but he has lost a lot already). We can't go on as we are, it feels like an endless cycle of the same symptoms. Plus because of all of the GI problems, his body is having to work harder on less, which means his chest is bound to take a hit at some point. 

We feel frustrated, and hopeful, and worried, and festive, and lucky and just about everything in between. But we are home, we have much to look forward to. 

Happy Christmas all, especially the fabulous Jayne who is now HOME after 11 long weeks recovering from her double lung transplant, saving her from end stage CF. If you support the idea of organ donation, please use this time now with your families to tell them about your wishes should you die. An organ donation WILL NOT go ahead, regardless of whether you have signed up to donate, if your next of kin does not agree. 

Have a wonderful holly-days x 

* I've had a lot of questions about the CT scan. For this one, Isaac had to have a cannula, drink some Gastrograffin for contrast, and had contrast through the line during the scan. He lies on the bed, and the bed zips in and out of a ring doughnut shaped scanner. It takes just seconds, and gives the doctors a detailed cross sectional image of his abdomen (as opposed to an X-ray which is a flat image). It a fairly hefty dose of radiation, so they have to avoid frequent use. A CT is different from an MRI which uses magnets, in a huge enclosed scanner. A CT is a lot less claustrophobic. 

This sadness inside of me.

Many head in hands moments this past week. We are still waiting for the CT (I think there was a mix up with the booking). He is a lot less vomity, but still having stomach aches everyday. I hate that he needs painkillers so much. He also has a worrying new symptom which means that we need to take him into hospital tomorrow regardless of when the CT is scheduled for. Christmas looms ever closer, and we have so much planned. I just want him well.

I spent an hour on the phone earlier today (Sunday) trying to speak to an on-call registrar at the hospital about this new problem, only to be passed from department to department. In the end the reg was found but refused to take my call, saying that consults over the phone were not the norm, and I'd need to bring him into a&e - the exact thing I was trying to avoid. They have the winter vomiting virus going round, and we need that like a poke in the eye. So I had to take the plunge and text his consultant directly - I hate bothering her out of hours, and have never needed to before, I'm not entirely sure how I even got her mobile number. But I needn't have worried, she called me shortly after and was so wonderful. This means we can stay home today, just need to rush him in if anything changes (she explained exactly what to look out for, all OK for now) and tomorrow we'll head in and see our own team. She is going to chase up the CT and bloods he needs, more urgently than ever. She also reassured me that I did the right thing, and that the registrar should have taken my call (as per our written instructions from the team about out of hours advice). It is SO HARD to always know the right thing to do.... We've spent hours in a&e with the drunks and the flu-ridden before, only to be sent home wishing we had waited until clinic hours - other doctors are usually reluctant to make any treatment changes without consulting his CF team anyway, so it's just a waste of time. On the other hand, we need to be vigilant about so much more. Especially lately. 

This wonderful blog by an adult with CF really struck a chord with me; 

'Life’s been really wonderful recently. *knocks on wood'. But there’s also a sadness I can’t shake. The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF. The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility. As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day. My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am. In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried. There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.' 

It's not me suffering here, but there is a sadness in me because of it, and I'd do anything for it to be me, rather than him. I don't always feel this sad, but it is always there inside. 

Please send well-vibes for my boy this Christmas! 

Isaac update

Things continue to be very up and down. A lot of throwing up and laying down to be specific. But whilst he has bouts of pain and nausea, in between he is not feeling 'ill', if that makes sense. So if he can get past the feeling sick, and keep down a meal, he can still do things (he went to football training mid week, and tonight has gone swimming). But he only managed two days at school this week. It's really that up and down. When he does feel well enough, we have to seize the opportunity to enjoy what he can. 

We headed into clinic yesterday, and it looked likely that we were heading for another admission, but have been given a reprieve for the weekend. Halla-bloody-Luyah.... It's Anouk's birthday weekend, so very glad that we didn't have to change plans and disappoint her. Instead we are going in early next week and he'll have a CT scan to see if we can find out what the hell is going on in his innards. He has lost 3kg in these last few weeks. These tummy issues, DIOS related as far as we can guess, have been going on for months now, but this lack of appetite and daily vomiting is new. Isaac can tuck away twice his body weight in food on a good day normally, whereas now his appetite is so hit and miss. For this reason alone, we know something is not right. 

So for now, feeling frustrated and sad that he still feels like this, but hopeful that we will know more soon and get him sorted out, and as always, feeling hugely proud - he complains so little, and takes it all on the chin. He literally picks himself back up off the bathroom floor and gets on with his day.... How many 'well' people could do the same? I'm sure I couldn't. 

And finally, Happy Birthday to our beautiful funny dancing Anouk-a-Shnuk. 7 today! I love her I love her I love her I love her I love her x x x 

All I want for Christmas....

Is for Isaac to be well. 

Back to clinic Thursday - lots more sickness this week. I'm feeling frustrated, as we seem to be going round and round and round in circles over these tummy issues. I know there are so many worse off..... But, this is just, so, so, heartbreaking at times.