Got to scrape that shit right off your shoes.

Isaac has missed about half of the school days this year, through no fault of his own, and hospital school does very little to make up for this absence as he is usually too unwell in hospital to actively participate. But at parents evening this week they had nothing but praise for how well he is doing this term. Yes, he is a little behind in a few places, but nowhere near as much as his absence suggests. Along with this, he now up to doing CrossFit three times a week, and football twice a week. This, the same kid who was in PICU four months ago, wheelchair bound, on 24hr oxygen. He is my frickin hero! He is not feeling hugely great right now, and we’re due back in hospital for tests next week, but for now we’re feeling happy and super proud. 

"Sweet Virginia" The Rolling Stones; 
Wadin' through the waste stormy winter,
And there's not a friend to help you through.
Tryin' to stop the waves behind your eyeballs,
Drop your reds, drop your greens and blues.
Thank you for your wine, California,
Thank you for your sweet and bitter fruits.
Yes I got the desert in my toenail
And I hid the speed inside my shoe.
I want you to come on, come on down Sweet Virginia,
I want you come on, honey child, I beg of you.
I want you come on, come on down, you got it in you.
(honey child)
Got to scrape the shit right off you shoes.
But Come on, come on down Sweet Virginia,
Come on, honey child, I beg of you.
Come on, come on down, you got it in you.
(honey child)

A beginning.

I started this blog almost four years ago. My intention was to raise awareness of Cystic Fibrosis, because it is so often misunderstood, I even had a GP once ask me; so when did he ‘get’ CF?! Also, to raise awareness of organ donation; one in three seriously ill people die waiting for transplants, and this is entirely avoidable, and that just feels nonsensical to me. My final reason was to update friends and family on Isaac’s health, so everyone could come here to see how he was, without us having to repeat the same story many many times; that is not to say that we don’t like people asking how he is, we do, but for more detail, and more regular updates when he is unwell, this is a great tool for sharing our news. 

Anyway, I jumped right into blogging, and it’s been fun. I love to write, share, I’m a bit of an open book as my friends will know, and it has helped us to raise more funds for the CF Trust (we have raised over £55,000 since Isaac was diagnosed) and I hope we have urged people to sign up to organ donation, as well as tell their loved ones of their wishes (that conversation is vital, as signed up or not, it is their choice after you die), more about that here. But diving into blogging, I never really introduced us, and shared our CF story..... so here goes (some facts are a little hazy, smudged with age, worry, and perhaps a little gin, but I’ll do my best):

Isaac was born on a cold and snowy day, with perfect pink and healthy lungs. We had hoped for a home birth, but after three days of labour, I wanted, like, ALL THE DRUGS, and so we had a hospital birth, and although it was long, everything was fine. We couldn’t believe how perfect he was. Despite vowing that I would have him sleep in a cot next to us, and never in our bed, on that first night in hospital, it felt so wrong. I pulled him into bed with me, and promised that I would love him forever and would always keep him safe. Less than 24 hours later we were home, tired, but excited about our new life. Family visited, and he was happy and content, and for that first day, I think we kinda thought, hey, how hard can this be? All you need is love, right? And we had that by the bucket full.... But that night he cried, and cried, and cried. All night. A screaming cry, with hints of pain and exhaustion. We had no idea what was wrong, and although we felt like something must be amiss, we convinced ourselves that we were being neurotic young new parents. We had no idea what normal was. We were just pretend parents, nothing felt real. We called the midwives as soon as dawn came, and Mary Poppins arrived by 9am. Just before she did, Isaac had his first dirty nappy. We’d been told that the first would be black, like tar, but his meconium (first poop) came out like a golf ball and rolled out of his nappy. No wonder the screaming. Mary Poppins reassured us, and by now he seemed content again. 

For the next few days we had our only experience of a ‘*normal’ family life that we would ever know. 

But then he started to lose weight. A lot of weight. I was breastfeeding, and soon the midwives and health visitors were coming daily to weigh him. He was having a dozen or more dirty nappies a day, so I was clearly producing enough milk, and he fed for hours, typically for an hour, every other hour. We were exhausted, so much so I found it hard to string together a sentence (that is no exaggeration, I clearly remember not being able to remember simple words like ‘much’ or ‘meal’). I could never have got through it without Dan. We playfully called Isaac chicken legs, as the skin started to hang off his little limbs. We were worried, but there was talk of food intolerances, a tummy bug perhaps? We sent off stool samples for tests and assumed that everything would be OK. On day 5 he had the heel prick test as all babies do. On day 10 this was repeated. They told us that he probably had a false positive test, and that this sometimes happened, and that they just needed to repeat the test to be sure... I asked ‘Repeat the test for what?’ And they replied ‘Cystic Fibrosis, but you don’t have any family history do you? So it’s very unlikely’. 

And I just knew. It felt like our darling, sweet, innocent baby had a life sentence. The words, WHY HIM, AND NOT ME??? ran on repeat through my mind. 

And they were wrong anyway, the vast majority of families in our position are the same, CF seems to strike out of the blue much more often than it does run in families knowingly; CF is genetic, both parents need to be carriers of the mutation, and in the U.K.1 in 25 of the population are carriers, when two carriers have a child, that child will have a 1 in 4 chance of being affected, and so generations of fortunate carriers may never have a child with CF, and many others may never have realised; how many of us have a great grandparent or relative that died many years ago of ‘pneumonia’ (CF related?) as a baby? 

¡

Anyway, I felt like the floor had just disappeared beneath me. I dreamt of black holes, and felt like I was grieving for the life Isaac would never have.  We spent the next 11 days waiting for confirmation, where I fed, slept, and researched CF on a loop. The waiting was the worst, the more I read about CF, the more certain it seemed; his nappies were green, and often oily, as if he was not digesting the milk at all, and he continued to lose weight. But we also clung desperately to hope, and this just made it worse. On Easter Sunday I was home alone with Isaac when the health visitor called to say they wouldn’t be coming to weigh Isaac that day, as they were coming round on Tuesday with a CF specialist, I screamed down the phone; was that how the diagnosis was confirmed, over the fucking phone? (I probably didn’t swear really, I am way to polite in real life, and I’m adding it here for dramatic affect). She tried to back-track, as if a specialist nurse would be coming if the results were negative?! Worse, I knew now, but we still had to wait to see a doctor and start treatment, while he continued to lose more weight. My reaction must have caused a stir, as an hour later, the CF specialist, Joan, arrived on our doorstep. We asked a million questions. She answered them honestly, without giving us false hope, nor no hope at all. Compared to what I had read online, the prognosis seemed less bleak. By the Tuesday he was on treatment; daily vitamins (which his body was unable to absorb from his diet), antibiotics, to protect his lungs from infection, and most notably Creon; replacement enzymes which enable him to digest fats and proteins, which his body cannot, due to a blocked duct from his pancreas to his guts. He remains on these to this day (he takes around 30-50 capsules of these a day, depending on the fat and protein content of what he is eating) and most likely, always will. He gained a pound in the first week, and started to sleep for more than one hour at a time. He was no longer constantly hungry and in pain from malabsorption. The hospital were great, but gave us no written information (nowadays parents get a pack of information from the CF Trust) and so the CF Trusts parents forum online became my family, fraught with sadness at times, but also the only people who really understood. 

From then on, Isaac went from strength to strength. We went to CF clinic every single week for many months, to learn how to do chest percussion for his physio to keep his lungs clear, and for the many tests he would have, and will always need. All went well, until he was 8 weeks old, when he caught bronchiolitis, which was just bad luck. He became very ill very quickly, and was still at this stage very underweight. He were admitted immediately, and it was here that he had his first two week course of IV antibiotics, and given oxygen to help his breathing. My absolute favourite memory of Dan (husband) is texting him in the night, asking for him to bring something in for me when he was to come the next day, and adding at the end how little sleep I’d had. Half an hour later, seeing a tall, bandy legged guy walking through the door at 4am made my heart weep with gratitude. Sleep deprivation is one of the oldest forms of torture. 

Little Isaac: 

But he got over bronchiolitis, and he got over it again at 8 months old, although we were in hospital then for a lot longer. He had his first broncoscopy during that admission, where they look at his lungs with a camera, and flush them out with saline at the same time to collect mucous for the lab. Only he was quite poorly going in to this, and he gave them all a scare when they tried to wake him from anaesthesia. Being told that afterwards will forever haunt me. 

Isaac continued to have problems catching up with his weight for a few years, he tracked on the 0.8th centile on the charts, and we had to supplement his milk with sticky maxijul powder that we’d mix up into an icky paste and squirt into his mouth after feeds, pure glucose! Later he had prescribed milkshakes, and we would add cream, butter and sugar to everything he ate. Age two he was still small in height too, and I asked about his predicted height, as if he stayed on the centile he was on in the charts his adult height would be very small. His Dad is 6ft5, so it seemed likely that his lack of  height was a result of his CF and his being so underweight in those early years. We were told he probably would always be very small, but he is now above average and needs to avoid extra calories rather than add them. Take that CF! 

Over the next few years he was only admitted about once a year. He even had a couple of years without any IV antibiotics, his best stretch yet. Things started to feel more *normal, whatever that is. We relaxed a little, and just enjoyed him. He was a happy, active little soul, with dark eyes and blond curls. He had regular cough swabs taken, and these showed that his beautiful pink lungs were beginning to be infected with bugs, and so by the age of 18 months, he was taking daily nebulised antibiotics, which in those days was a big noisy machine, and Thomas the Tank Engine on full volume was our saviour. There are typical ‘CF bugs’ which love the sticky mucous of a CF lung, and Isaac mostly grew Klebsiela for his first few years, but by the age of 3 (I think) this was driven out by a big CF baddie, Pseudomonas Auriginosa, which still inhabit his lungs today. Bastards. 

Otherwise, these years were mostly taken up with extensive house renovations. We bought a small Victorian cottage with a large garden, and not a single wall, floor or ceiling was left unturned. We knocked low ceilings up into the attic space, extended (twice) and lovingly restored all the character that we could. Dan is a builder, the only way we could have ever afforded all of this. I filled the house with art, books and music, and the kids filled it with shite, sorry, I mean toys. 

Dan (and no, he did not catch that tuna, only in his dreams): 

The other major thing that preoccupied these years was choosing to have more children. We always thought we would have 3 or 4, but now we faced the chance that our next child would have CF too. For us, this was not an option. No one would ever choose to have this disease, and to knowingly pass it on, now we knew we were carriers? That didn’t feel like our choice to make; it was about that child that we would be bringing into the world, not us, and our desire for another baby. Besides, having a sibling with CF could negatively potentially affect Isaac’s health as people with CF are encouraged never to meet, as the bugs that love their lungs are easily transmissible between CF patients. Naturally siblings can’t avoid this risk, so would likely share bugs throughout their lives. This is a hugely emotive subject, and one debated on CF forums regularly, and I do not sit in judgement. Many families choose to risk those odds, or conceive and then test, but for us, IVF became a possibility and we chose that route. 

The hardest thing about the IVF was the waiting to have it; Although we were not having IVF for fertility issues, I can identify with that desperate longing for a child, and that feeling of it being out of your hands. For us, the year or so waiting was mostly because we needed to secure funding. As well as IVF, which meant stimulating my egg production, taking the eggs when ready, and injecting the sperm into the egg to make an embryo (ICSI) when the embryo was five days old and around 8 cells big (a blastocyst) one of those cells was removed and tested to identify the CF mutation, to ascertain whether that embryo was affected by CF. This is called pre-implantation genetic diagnosis (PGD), and a single cycle costs around £7000 (probably more now). We were told we had about a 1 in 5 chance of success. 

Things didn’t go quite to plan, I overreacted to the IVF drugs and developed ovarian hyper-stimulation syndrome (OHSS) which left me looking 6 months pregnant overnight, in hospital for 10 days, and needing to inject myself daily with blood thinning drugs for 13 months..... but it was worth every second. Anouk was THE most beautiful baby, with dark hair and the sweetest temperament, and Isaac adored her. After the blur that was Isaac’s first few months, Anouk’s was peaceful and happy (full post about our PGD story can be found here.). 

Baby Anouk: 

We had our challenges; at one point we had no kitchen wall, a shell of an extension built, a chicken wondering into the house, baby Anouk, and community nurses coming round whilst Isaac was on home IVs. At times chaotic, but always happy. Three years later, knowing we had three more healthy embryos in a freezer at Guys hospital in London, we thought we would have a final go at IVF, this time self funded, but without the expensive PGD part as the tests were already complete, we had our little frosty implanted, knowing we had just a one in four chance of success, and feeling like we’d pretty much already won that lottery. 

Our feisty, funny Rosa was born four years after both Anouk and her were conceived, our twins born at different times. We said ha! Our family is complete, but a few years later that yearning came again, but this time we added Obie to our family, the worlds most handsome and loving dog. 

We have amazing science and the NHS to thank for our family. What words could cover that? 

Baby Rosa: 

I’m not sure quite when, but probably around the age of 8 Isaac started to suffer with his digestive system more often. He was diagnosed with episodes of Distal Intestinal Obstructive Syndrome (DIOS) which saw him admitted to hospital many times. For maybe 2 or 3 years, he had pretty much continuous problems with nausea, vomiting and DIOS, and developed a deep hatred of the many medicines he needed to take to prevent this; Ironic when the medicine you need to help your digestive system is the same that also makes you sick. It wasn’t always awful, but came in waves, but he started to miss more school as a result, often not being able to make it in first thing as he’d been sick. He was referred to a gastroenterologist, and had many tests, including eating radioactive egg on toast and being popped through the CT scanner, and dozens of X-rays. Thankfully during this time, chest wise, he was stable. But seeing him eat and then throw up most days, I think we started to resign ourselves to this being his norm, after so long. Until one day, it just wasn’t. He does still have problems with nausea, and takes anti-sickness drugs for this most days, and CF digestion is never normal (Creon dosing is an art!) but he hasn’t been admitted with DIOS for over a year now, which is fantastic. I hope this is welcome news to other families affected by regular DIOS, things can get better! 

Frustratingly, as things were looking better tummy wise, he started to have more exacerbations (flare up of the bugs living in his lungs, causing more symptoms), and in the last few years, he has had many more admission for IV antibiotics to treat these chest infections, ultimately leading to him being very unwell last year,  spending time in intensive care, and him finally accepting that he needed a partacath fitted as his venous access was so pants. Anyway, you can read all about within this blog. 

So that’s us really, in a happy, shiny nutshell. I am probably forgetting about a million things inbetween. The biggest being that we have amazing friends and family who help, love and keep us sane. And also that CF can be very much in the background of our lives when it’s behaving. We laugh, we dance, we have fun. And even when it is not so great, and we are stuck in hospital, we are mostly there to keep him well, so it’s worth it. 

Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. x 

* “If you are always trying to be normal, you will never know how amazing you can be.”

― Maya Angelou. 

You want it darker.

If I am a parent, am I a carer? 

And if I am a carer, can I also just be a parent? 

 

And if I am a carer, is that because I order his prescriptions? I sterilise his medical equipment? I mix up his IV drugs, and administer them directly into his bloodstream? Or because I give him chest physio in the night when he can’t sleep for coughing? Because I stay with him when he is in hospital? Am I a carer because I nag him each day, until he has done all of his nebulisers and tablets and my throat is dry and aching? Or because we dedicate a quarter of our kitchen storage to his many medications, in which stock rotation is a full time job? Because I measure his temperature, his oxygen saturation levels and analyse the colour of his sputum? Am I a carer because I know the names of all his drugs, his medical team, the tests he has had, his list of diagnoses? Because I take him to every appointment? I capture his sputum and send it off to a lab to grow the bugs in a petri dish? Because when he has a PICC line, I need to wash his hair for him? .... 

.... Or am I a carer and not just a parent because one terrible month last year, he needed my help to simply get out of bed and into a wheelchair, his breathing was so impaired?

 

I watched this TED talk the other day. I do all the above, but I’ve never really considered myself a carer. I am just a Mum. Would I feel differently if he were so ill I couldn’t work? (I would be entitled to financial support for caring then). Or if it were my parent, my sister, my friend, my spouse and not my son who was unwell? Either which way; we should be celebrating every carer or caring person out there, supporting the less well in our society, because there are millions of us, and ultimately, caring for someone you love is a privilege fraught with sorrow. 

“82% of carers report feeling more stressed since they took on their caring role, with 61% facing depression.”

Isaac is doing OK: His problems with nausea and vomiting are declining; His chest sounds good; His pain better; The scar from his portacath op has healed beautifully - only his neck bothers him, where he can feel the line under the skin, tugging where is dives into the vein towards his heart; He will have his first flush in a couple of weeks, the line will need this every 4-6 weeks to keep it working (to see a video showing a port being accessed click here.); He is busy choosing the subjects he wants to take for his GCSEs, but as his attendance is so poor, his choices are limited (damn CF); But he is regaining the fitness he lost in October (through football and CrossFit) and for now, we are home and thankful. 

Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. x 

Working and Richter.

This week has been one of professional disappointment for me. A few years ago, my ambitions were teeny-tiny micro ambitions..... having happy children with vaguely brushed hair, haribo picked off the car windows, being dressed by ten in the morning, and a house filled with art, music and dancing round the kitchen table was plenty. But as we came out of the sleepless baby years, and my role at work has changed, I started to NEED to work. 

I guess my fear is that without work, my focus would be 24/7 on our battle against CF, and I realise now, that would do Isaac no favours; While his health will always be my top priority, and I will fundraise, and shout loudly for CF and organ donation awareness, for now, our balance in life is much healthier if I have that other string to my bow, to distract and keep me sane. 

That said, it’s not an easy balance. We have spent two of the last six months residents of Addenbrookes Hospital. I sleep there in the week, and try to work from the ward when I can in the day, and make it into the office for meetings I can’t really do by Skype. Still, most of my annual leave is taken up with hospital - and that can feel so unfair for all the kids, as it limits what other time we can have together. 

I’ve also taken two professional qualifications in the last year or so, and I’m studying for a third now. I admit, I wonder why I do this sometimes, especially weeks like this (being turned down for a challenge I would have loved, following an interview I took after a sleepless night on the ward). But I like my work, and I LOVE my colleagues and friends there. 

And, quite simply, I half agree with the adage that money does not buy happiness, but on the other hand, seeing Isaac, Anouk and Rosa playing in a pool in the South of France with our best friends kids a couple of years ago, I have to concede, it kind of does! Plus, who knows what kind of employment Isaac’s health will allow him? We need to build our lives up for his future. 

So, despite my disappointment this week, I will carrying on working for as long as Isaac’s health permits, and while I can, we will pack in as much fun as we can. 

I leave you with some brilliant Gerhard Richter. For a really spooky insight, check out this. Freaked me out slightly!

Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. Thank you x 

This isn't flying, it's falling with style...

On May 5th 2018 I will be jumping out of a plane along with my amazingly supportive and slightly crazy friends and family, Bonny, Jess and Shelley. Luckily I am good with heights, however I do have a mortal fear of rickety old flying machines, and, well, death generally, so this will be no small feat. 

We are doing this to raise funds for the Cystic Fibrosis Trust. Our family and friends have now raised over £55,000 for the CF Trust since Isaac was diagnosed.... such incredible support, we can’t thank everyone enough! 

In 2005 when Isaac was born, he could only be prescribed medications to treat the symptoms of his disease, and sadly, despite dreams of gene therapy, that is still true today. But we are on a brink of a whole new way of treating CF...tackling the underlying cause of the disease, which is all about abnormal movement of salt and water between cells. One drug (Kalydeco) is already available to those few with a CF mutation it will work for, and another (Orkambi, which will treat many more people with CF) is available in other countries, but not yet on NHS England, due to cost (thanks to an overwhelming response to the petition the CF community have been sharing on every social media platform going, we hope this will be debated in parliament very soon). 

Unfortunately, neither of these drugs will work for our boy (he has two class one mutations, which is really crappy) but it fills us with hope for the future; however a huge amount of research needs to happen in order to deliver this kind of treatment and ensure that everyone with CF has access to these groundbreaking small molecule drugs. 

We can personally vouch for just how shitty CF is: 

It means my son has to spend 1-2 hours a day doing treatments, even when he is well; 

It is the reason he has a bacterial chest infection all of the time, and why daily antibiotics only help keep the bugs at bay; 

It is why he has spent two of the last six months in hospital; 

Which means his attendance at school this term has been less than 50%; 

CF is why my daughters worry, lash out and have to cope with us prioritising their brothers health over everything; 

It is the reason he has had two painful operations recently;

....And why that he ended up in intensive care for six awful days; 

It is why he takes dozens of tablets each day, five nebulised treatments, along with rounds of physiotherapy to shift the mucous from his lungs; 

It is why we worry about diabetes, liver disease, deafness, osteoporosis and cancer, all of which can be linked to the disease or its treatments;

CF has resulted in his lack of venous access, after years of blood tests and IV treatments, and is why he now has a permenant IV device in his chest for easier access;

Cystic fucking Fibrosis explains how he was left wheel chair bound, on oxygen 24/7 and unable to even stand without becoming breathless for a time.... 

Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. Thank you x 

Petition, for young lives!

Please, please take one minute to sign & share this petition. It has received more than 10,000 signatures in 24 hours and we need it to reach 100,000.... 60K and counting! 

You could help save the lives of thousands of young people with cystic fibrosis. Thank you.

Making our own sunshine.

Isaac is home from hospital. All is healing well. All is as it should be. A happy video for you here!

Have a great day, and thank you for reading x 

Some of my favourite from Man Ray; 

Operation.

I used to love that game, growing up in the eighties.... we never had it, so it forever remained an elusive and fun thing that we only ever played at family and friends. Ditto my neighbours barbie oven which had lights and actually hummed like an oven. Oh how I lusted over that oven aged six! 

Isaac is now the proud owner of a shiny new portacath in his chest, which will make blood draws and IV antibiotic treatment so much easier. He has been in a fair amount of pain post-op, the incisions are larger than we expected, and he’s had all the usual fun stuff post anaesthetic (throwing up, massively sore throat from the intubation, lips so dry they crack and peel). But it is in, and it is working! He remains in hospital, and his cough is still worrying me, especially as we are coming to the end of two weeks of IVs, the point at which we’d expect his chest to be the best it can be. Hopefully this is just post-anaethetic-cilia-need-to-wake-up-effects. This is an actual thing, I didn’t just make that up. We have lined up samples for the lab, so have the usual wait now for all the test results. But for now, we just want him home. His sisters need us all home. 

Welldone and thank you to all those that will or have been attending NICE meetings around the U.K, campaigning for the right for people with CF to access Orkambi, a life changing drug; 96-week data shows that Orkambi can slow decline in lung function – the main cause of death among people with cystic fibrosis - by 42%. There are 2,834 people in England, 243 people in Scotland, 118 people in Wales and 101 people in Northern Ireland who could benefit from Orkambi. Sadly Isaac is not one of those (due to his rare and quite shitty mutation) but I can completely relate to just how maddeningly painful and frustrating it must be for other parents and adults with CF to know that this drug is there, it’s bottled up, ready to go, and your doctor wants to prescribe it for you..... but can’t. What price can you put on a life? 

Thank you for reading x

Floods, Op’s and home IVs

We are home.... still on IVs, but home for much needed family time for the weekend. I am back into the swing of administering the IV drugs; it’s all aprons, gloves, endless alcohol wipes and checking the measurements and dilutants obsessively, but my confidence grows quickly each time. His chest is  sounding much better (the sound and feel of his lungs is a great measure of wellness, from a crackle to a wheeze, to a vibration or a gurgle). 

Tomorrow we return to hospital for his portacath Op, subsequent recovery, and to hopefully finish off the course of IV antibiotics (they will also use the opportunity under anaesthetic to suction up more sputum from his lungs to test for New Twattish Microbastard), Thursday marks the two week point, the usual length of the course, and unlike last time, I’m confident his lung function will have increased enough to finish on time. 

This admission has been nothing like last time. Still a little way to go, but we are feeling fortunate and pretty damn chipper; We need this operation to go just as well, I’m sure it will. Have a great day x 

My flooded fen dog walk at dusk: 

Sleeping with other people.

As chirpy as we try and be about hospital, there is one thing that rarely gets any easier, and that is sleeping with other people. Because, let’s face it, a thin blue curtain does nothing to change that fact that you are sleeping mere feet from others, and while I enjoy my own pretty hippy and carefree attitude co-sleeping, life on a hospital ward is something else, and we’ve had some mixed experiences... 

The whole light etiquette: come evening, we try always retire early; knowing our night will be interrupted in a hundred different ways, we have to go for quantity rather than quality. But when is it polite to turn off the main lights when you’re sharing? I’m all for bed at 8pm on the ward me (so frickin rock’n’roll!). We once slept next to a family who every night angled their bed lamp so it was actually touching our curtain, facing our direction, giving them a lovely dimmed light, and us, the full beam. I silently wept and tried to knock it away, as if by accident, with an outstretched yawn. 

Space: The children’s ward we frequent is split into a few individual rooms (which we only get if he is contagious, or if there are a number of CF kids on the ward all of whom need to be kept apart), and other rooms with three, four or six beds. The more beds, the less comfortable you will be. Fact. On the six bed ward, I once had a parent push their chair so far up against the curtain dividing us, his chair was touching my back as I laid on my side. We were next to each other for two whole weeks. 

Crying: The worst was the sweet baby that came in for cleft palate surgery, who cried all night; a shrill, gargling, piercing, and hungry cry. I honestly think Isaac had about an hours sleep. I assumed the babe was nil by mouth pre-op, and having been there myself, it wasn’t hard to empathise with the poor mother. But when the dad came in the morning after, I heard him ask the mum, ‘have you tried feeding her?’ And the mum replied ‘no, I thought she was just tired’. I’m telling you.... ALL BLOODY NIGHT, and she stopped as soon as she was fed - I think it’s sometimes possible people see the illness first, and the baby second. If that makes sense. 

Night arrivals: There are the families that come up in the middle of the night from A&E, who have probably have had some kind of BIG LIFE EVENT of sorts, and it is a known fact that people talk around 22% louder during such episodes than they normally do. Kids often come in with parents, sometimes with siblings and grandparents, maybe aunts and uncles too. And all of these worried and loud people are right next to us as we try and sleep. You understand, but sometimes it doesn’t make it much easier when you’re tired. 

Privacy: This week, we had the 14 year old who was on her phone all the time and tried to have her 18 year old boyfriend stay over (the nurses kicked him out). I felt like I knew her by the time she left without hardly talking to her, we’d accidentally overheard stories of snapchat screenshots going viral round school, her social worker, going back into care, her mother calling social services on her father, her sister being in the pub all day, her warning friends to back up her story to the police (really).... how can you not listen when you’re close enough to hear each other roll over in bed? As she kept rolling back in on her wheelchair smelling of fags, I desperately wanted her to go, but I also wanted to give her a big hug. Equally everyone knows exactly what is going on with us, be it an intentional or accidental invasion of privacy, I get it, but sometimes that is hard to deal with (even for me, who writes a blog about this life. Kind of ironic I suppose). 

Environment: Then there is the inevitable snoring; the heat (wards are always so hot); the hospital hum (the noise which I imagine comes from his generators, boilers, air conditioning units? I hope it’s not the incinerator, I don’t like to think about those); the wondrous smells of all varieties; and of course, the forever, incessant beeping of machines. 

Anyway, I could go on and on, but feel bad for moaning. There are positives... occasionally at least. You can meet amazingly interesting families, and make friends even. We are definitely in the regulars club now; We know all the nurses, and the nurses know what Isaac needs: space, more than most, only because we have to bring in so much medical equipment with us (two nebulisers, bi-pap machine, all of our usual drugs) so where possible, they do try and get us a good bed. And while the majority of people we meet here we only ever see that one time, there are others regulars like us. Sadly I can’t meet up with a good friend of mine, whose daughter also has CF. We are often in at the same time, and text each other from our respective beds, but cross infection is even possible from *patient to person to person to patient* (if that makes sense!). So we support each other from afar and wave if we see each other (good luck for today A&G! Much love to you both). 

Today has been a little difficult for Isaac. His port op has been delayed again, and should happen next week now, unless his longline fails sooner (in which case he should get on an emergency list). He had quite a sleepless night worrying about the op, I think mostly because he had two very recent general anaesthetics, and for both, his experience in recovery was rough (initially that is), so he is understandably frustrated for it to be delayed a second time. Then he had his hopes up to go home for a few days, on home IVs, as his lung function today had increased nicely. However the doctors are not quite ready for him to come home, and will review him on a daily basis until they are. That said, things are otherwise going well. 

I, on the otherhand, have come home for a good nights sleep and a cuddle with the girly ones while Dan stays with Isaac. It’s always bittersweet for me though, I feel like I am missing a limb when I’m not there with him (despite the fact that he hit me round the back of the head with a football earlier in the gym. Little shit). Love him x 

The long escape route from hospital....

Chronic illness.

Chronic illness is very hard to explain sometimes. Isaac’s baseline ‘well’ is almost definitely not the same as your ‘well’, but life is no competition on suffering. I honestly don’t mind when people have a grumble about a particularly bad cold they have been suffering with for a while, but people often apologise for doing so. This last couple of weeks I have had a broken or bruised coccyx (I say broken or bruised because I decided not to have the X-ray to check, as either way, the treatment is the same; try not to sit on it, anti-inflammatories and painkillers). And jeez, did I moan! Only the diazepam/tramadol/naproxen cocktail shut me up (mostly because I was an incoherent wreck crawling around on the floor...I’ll stick to the mojitos in future).

When someone expresses concern about a blood test while Isaac has had more needles than hot dinners in his lifetime, I don’t compare their situation to ours. When people have effortless pregnancy after pregnancy, I don’t bemoan the fact that we had to have IVF. Coping with chronic illness in the family does not diminish your empathy for others. For someone with near perfect health, a new health experience can be a very scary thing, whereas for Isaac, we are used to tests and subsequent results on a rolling basis (and some will always bring bad news) and I guess in some ways this desensitises us to some aspects of hospital life. 

This week we met a particularly useless surgeon who proceeded to inform us that Isaac would have his port fitted in the side of his chest, rather than at the front, because it would leave less of a scar and be less visible. Isaac protested that he wanted it at the front because he doesn’t give two hoots about a) the scar or b) the visibility, as it would still be below his T-shirt line, and that for him, accessibility was his priority. The surgeon just really couldn’t get it (he also called him ‘James’ throughout the appointment, which never fills you with confidence). When we explained that depending on what IV drugs Isaac takes, he might be hooked up to drugs for some hours each day, so to pull down his T-shirt, and have the line pop out his neck, leaving his arms free to go wherever, is a lot better than having it on his side where he would need the line to come up, down or out his sleeve. Plus, one day we hope he’ll be independent and able to do his own IVs, this is only possible (I think, or at least it’s a lot easier) if the port is on your front. The surgeon still looked at us, mouth agape, before finally conceding that Isaac was right, and then proceeding to talk us through the surgery; 

Dr Useless; And we make one incision here (pointing to childish drawing he is doing for us). 

Me; Really, Just one incision? 

Dr Useless; Yes, that’s right. 

Me; But don’t you also need an incision in his neck? 

Dr Useless; Oh yes, that’s right. Two incisions. 

Me; But you’re not the one doing the surgery on Isaac, right? 

The flip side of chronic illness is that yet another admission to hospital, when it is expected, even planned, is a very different context to a first or emergency admission. This is our reality, and for the most part, that’s OK. Last night I stayed in with Isaac, and we gossiped and giggled about the people on the ward (I have a lifetime of shocking stories about the families we see on hospital wards, and please know, this is not us snooping, we are in a four bed ward, and last night, this meant a room full of maybe 15 patients, visitors and nurses - only divided by curtains, you can’t help overhear, and all I can say is that last night was like an episode of Jeremy Kyle!). We stayed up too late, we ate chocolate after cleaning our teeth, we overslept. Went to the gym for physio as soon as we woke up and raced each other on the bikes. Then I swapped over with Dan to spend some time with the girls. We shopped, went to a funfair, and I laughed my head off on the dodgems. Then we snuggled up with the dog in front of the fire and watched Dumbo. 

I think sometimes, because we do carry on, we laugh a lot, we throw a lot of parties, and we make the most of every day, and yet we still prioritise Isaac’s health, we can be labelled as (eek!) inspirational. And this is NOT a word I have come up with, people say it to me all the time. One CF blog I read said this: 

“Frankly, many people treat the chronically ill as inspiration porn. So when we express any type of grief, they act as though we’ve rudely interrupted their televised programming for something unscheduled and unwanted”

But before I very publicly fall off any hypothetical pedestal you might put us on, can I tell you that we do moan, we do cry, we do have tantrums, throw weetabix on the wall and slump against the fridge crying. I can certainly tell you that I myself feel anything BUT inspirational when I’m tired and usher the girls up to bed with their iPads because I JUST WANT TO HAVE A GIN IN PEACE. And Isaac has his little paddies too. 

Sorry, this post has no real outline, no conclusion. Things are going well in hospital. Isaac is coughing more, but that is usual for early on IVs. The physios are pushing him hard, which is great. And best of all, we think his port surgery will be bought forward to Tuesday now, so we just need his line to last until then. Depending on his recovery, we hope to get home on home IVs soon after if we can. I guess what I am trying to say, is that if it was your child, you’d be doing the same too (only probably better, or at least with less gin), and that mostly, life is not so bad. It was a completely different ball game last time, when he was so sick, but right now, we’re doing OK. 

Thank you for all the kind wishes x 

Georgia O’Keefe love tonight. 

The year of the chest.

While 2015 and well into 2016 were the years the digestive problems, with repeated admissions for DIOS (distal intestinal obstructive syndrome) and continued problems with nausea and vomiting, 2017 was most definitely the year of the shitty chest. While he has grown the bacterial infection he has in his lungs (Pseudomonas) for many years now, we used to be better able to keep it at bay by just occasional courses of IV antibiotics and a whole heap of oral and nebulised ones, but we are now much more reliant on the toxic IV drugs to battle this bug. 

His surgery to implant a portacath (permenant IV device, in his chest) was scheduled for tomorrow, and we had pre-op today. However the surgery was postponed (Addenbrookes is one of the hospitals in the news today, declared as in the midst of a major incident, as they battle wards full of flu and the noro virus). We now hope to have it scheduled for next week or the week after, so still headed in for the pre-op chat today. Because we were going in anyway, I spoke to our CF nurse and as he is still coughing despite four weeks of cipro, she asked us to pop in for lung function tests. The news was neither surprising nor good. 

The plan over the last few weeks was to hold off IVs until the port was in to avoid the pain and hassle of trying to get a line in again, and as we seemed so close to this date (and so wanted a Christmas at home) the doctors wanted to wait. But today, with him still so symptomatic and knowing the port is postponed (and could be even further, because let’s face it, the NHS is in crisis) we can no longer delay. So armed with only the clothes we came in wearing, we found ourselves back on ward D2. Isaac was pleased as we got one of his favourite beds, overlooking the garden, and despite his venous access being so pants, he already has a longline in - first time! We very much need this one to last until the surgery now, as I can’t believe we’d be so lucky a second time. 

So we are back in a day earlier than we had thought we would be going in, and a frustrating delay for the port, but it’s certainly been better knowing that we were coming in for planned IVs anyway; the bags were already half packed, the time off work was booked, and the girls were prepared for the news (no tears at all today - I can’t tell you how different that is). Isaac is in a much much better place with his health right now than for his last admission - despite the coughing he has a great appetite, he is fit again, happy and rested after a lovely break at home. 

Our hopes are; IVs this weekend, lung function starts to improve, surgery goes ahead.... and then we go home to finish his two weeks of IVs at home, through his shiny new port. 

I will let you know how we get on, but so far, so good, still smiling x 

Pictures from just a few days ago, out on his Christmas present. 

Portacath surgery.

I promised to write about his impending portacath surgery in more detail. Here is a summary of why, what and how a portacath is used; 

Why Portacath? A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy. Drugs used for chemotherapy are often toxic, and can damage skin, muscle tissue, and sometimes veins. They often need to be delivered into large central vein where the drugs are immediately diluted by blood stream and delivered efficiently to the entire body. Cancer patients also require frequent blood tests and scans to monitor their treatments. For patients with difficult veins, it can be used for withdrawing blood for blood tests, as well as diagnostic scans. Using modern techniques, the portacaths we have inserted are highly appreciated by patients, oncology nurses and doctors.

What is a portacath? A portacath consists of a reservoir (the port) and a tube (the catheter). The port is implanted under the skin in the upper chest. It may appear as a bump under the skin in thin patients, but less visible in patients with some subcutaneous fat. The catheter runs in a tunnel under the skin, going over the collarbone and then enters the large vein in the lower neck (the internal jugular vein). Since it is completely internal, swimming and bathing is not a problem. The septum of the port is made of a special self-sealing silicone rubber. It can be punctured up to one thousand times and therefore can be used for many years.

How is a portacath implanted? The procedure is performed under anaesthetic, with the aid of imaging guidance (ultrasound and X-ray) in the angiography suite of radiology department. The actual procedure takes about 30min. An intravenous sedation is given to make the local anaesthetic injection less painful. There will be a skin incision 3cm long on the chest wall for the port pocket and a 5mm nick in the lower neck to enter the vein. Absorbable sutures are used for the chest wound and are buried under the skin. For the small neck wound, sutures are usually not required and the wound is closed with Steristrips (medical sticky tape).

This is all taken from here (includes images) and while this references oncology patients, they are also very commonly used in CF for the same reasons. The end result, in his chest wall (when not accessed) will look something like this (only with less chest hair his case); 

You can watch a video about how a port is then accessed for IVs here (basically, how a needle is stuck in to gain venous access). The needle then remains in for the duration of the antibiotic course (usually two weeks), in that time, he cannot bath (entirely), swim or do contact sports; but once the needle is removed, he can again. The skin just grows over the hole. 

The reason Isaac is having a port fitted is because he now needs more regular IV treatment, and because his venous access is so poor; after years of IV antibiotics for two weeks at a time, blood tests, and other tests, his veins are, well, a bit shit. Don't worry, he has loads of other veins for blood delivery, only the ones we can use for intravenous access are now very limited. A port means an end to repeated attempts for peripharal lines (your average kind of cannula, usually in your hand or arm), long lines (usually in his arms or ankles) or PICC lines (usually in his arms, ankles, groin). Instead we will have a one-fits-all solution in his chest, which is great, but does come with all the usual risks of surgery, especially of infection (especially as this is so close to his heart). 

As with any surgery, you don't exactly look forward to it, but in this case, we know it's the lesser of two evils. 

The children were nestled all snug in their beds, While visions of sugar-plums danced in their heads....

We've had the tummy bug in the Moly house this week, and as with any lurgy, Isaac's chest takes a hit. He is chesty, but the extra antibiotics and physio are doing the trick so far. Here is to Christmas at home! We will be making the most of it. 

For all those spending the holidays in hospital... our hearts are with you. 

Our colourful Christmas meds; 

Our smallest Christmas cracker at home; 

An Icelandic/English Christmas Eve at the Grandparents;

And as the grumpy teen no longer allows many pictures, here is one to remember him by! Our gorgeous boy. 

With much love to all our family and friends x x x 

Bug battles and a hospital New Year.

I rarely want to post without some good news to share; a message of significant worthiness (ha ha you might say!); news of a medical breakthrough; fundraising updates; a petition to support; a good picture to share (OK, so most of the time it is just pictures, I like pictures!); or to bang on about organ donation...yet again.... (thank you so much for reading... I honestly don't know why people do sometimes).... but this post is all a bit BLAH.... Sorry. 

Following recent growths of the New-Twattish-Microbastard (NTM infection) and the Frickin Fungus (aspergillus) in his lungs, latest cultures have been clear, which is really promising, as were the CT results (and who can argue with the doughnut of truth?). This doesn't rule out the scary NTM bugs, but it means we can hope while we wait for further results - cultures for this bug take 6 weeks, and we supply plenty of sputum as requested, so results come in on a rolling basis. A clear result doesn't mean that he has cleared the infection; it just means that the sputum supplied from that particular cough doesn't contain that bug, and lungs are vast. We need a lot more clear results before we can be sure. 

However at clinic today, Isaac's lung function was down, considerably. Not exactly a shock; he's been crackling, coughing and looking pale. Despite being on Cipro (the big guns of oral antibiotics), nebulised antibiotics as usual, double nebulised DNase (which helps break down his sputum) and adhering to his increased physio routine perfectly since coming out of hospital (including his new BiPap, which forces air into his lungs); his pesky pseudomonas infection is having a party in the face of all his efforts - pretty fucking rude if you ask me. 

We took a long dog walk together at the weekend, and he had a surprising change of heart about the portacath, for which he is scheduled surgery for early in January. He is a young teenage boy, and understandably the idea of having a permanent device fitted in his chest wall would be a constant reminder of CF that he just doesn't want. And who would? But the benefits really do far outweigh the arguements against it (his being that he may one day want to pick up rugby again, or boxing, or some other kind of chest poking sport, which are not recommended with a port). But sadly his venous access is so severely limited now (meaning his veins are ruined from years of IV antibiotics and tests) that they will be searching for veins in much more uncomfortable places than his hands, arms and ankles next.... A port will mean that IV drugs sail through in quicker time; getting him on IV's to begin with will be much easier as we will have immediate access every time, rather than waiting for the doctors to insert a long line; and he gets to avoid painful repeated stabbings. 

I'm not exactly sure what I said to change his mind, but I'm glad. I explained that I no more want a lump of metal in his chest than he does, but ultimately, I know it's for the best. The doctors are our experts, and I trust our team. It doesn't stop me wishing it wasn't so though. 

Our hope now is to stay home for Christmas, and as sad as I feel today, I think we will be OK. As we are so close to the port surgery, they want to see if he can hold out until then, avoid the venous access pain, and do two weeks of IVs following the surgery. This will be his third course of IVs in 6 months, which is worrying in itself. The hope for next year is that we can limit this to four lots of planned courses per year (that is 4x two week courses of IV antibiotics, most of which will be in hospital, but some of which we hope I can administer at home) to keep on top of his infections better. 

For now, we continue on the Cipro, hope for good test results, do extra physio, and add in regular ibuprofen to help reduce his inflammatory response, and enjoy Christmas at home, together, before an early New Year back in hospital. 

Have a wonderful Christmas break if you are having one, wherever you are x 

PS- I just read this report. CF parents, let me know what you think too? x 

Fundraising and friends.

It is looking like we will have raised more than £900 at the annual Christmas Raffle we held at my work yesterday (still counting up the pennies, and the company match what we make up to a certain amount per year). We have been doing this for twelve years now, in aid of the CF Trust, since Isaac was diagnosed. It started as a way to fairly share out all the gifts that suppliers sent us at Christmas; booze, chocolates, even Playstations, while making money for charity at the same time. But due to compliance rules these days, we get less and less from suppliers, and instead, more and more of my lovely colleagues put in personal donations, bake cakes, and buy tickets; making them all the more incredible. I honestly could not think of a more heart-warming place to work - I count many of my colleagues as my dearest friends, and the support they give me, our family, and the fundraising we do is nothing short of incredible. I am never quite sure how long I will be able to keep working for (only for as long as Isaac is well enough for me to), so I appreciate everyday, and everyone. 

We also had an unbelievably kind gift from a very old and dear friend this week, for our family personally. I don't cry often, but it's usually huge kindness that brings it out in me - and this completely floored me. We are taking our time to think about how best to spend this on the kids, after such a crappy year, this is a wonderful treat. R and family - thank you so much. We won't forget this, and whatever the kids decide to spend it on, I promise, it will be unforgettable! 

Christmas seems to have come early in Moly World. I hope it has for you too x 

Hospital help.

I've spent a lot of time lately thinking about the time we spend in hospital, which we know will now increase. His planned IV's are every 12 weeks (it will all be approximate, according to how symptomatic he is, and working around real life - but the plan is for four times per year) and while we hope for some of that to be home IVs (where I administer his IV drugs myself here), we need to assume we might be in hospital for the full two weeks each time, as going home is dependant on how he is feeling, the bugs he has, and drugs he needs at that time.  

Therefore we need to plan for at least eight weeks a year on the ward... plus clinic as an outpatient (about 10 times per year), plus tests.... all of which means around a fifth of our year is spent in hospital. The advantage we have now is being able to plan for this. Thanks to amazingly supportive grandparents, aunts and uncles; and it’s worth saying here that our kids have five wonderful grandparents, all of whom help us, mostly with our two daughters or Obie (the most handsome dog in the world) allowing me to focus on Isaac (and work when I can from hospital) and Dan to look after the girls and keep working (as he is self employed, this makes sense).

While we're on the ward, our days are filled with treatments: IV drugs and physiotherapy, maybe 8/9 times a day; visits from Doctors, Dieticians, Psychologists, Play Specialists, Hospital School; meals; much needed rest and downtime. Although it appears that he is in bed much of the time, it's pretty exhausting and overwhelming for him, especially as we get very little sleep. 

On the otherhand, over time we get a little stir crazy and down... and it's times like these where visitors are our saviours! So, if you would like to help (and so many of you do, always, and we thank you so much) here is how to help us best:

Best visiting time in hospital is between 4-8pm, when the physios have gone home and we're most likely to be in our ward, he is getting bored of me, and before we get super tired. Don’t stay too late; we have to go to sleep super early as our sleep is so broken.

Please text us rather than call, it’s lovely to have contact, but due to being on a joint ward, it’s rarely easy to talk. Isaac has his own phone now too, so friends, if you want to text him directly, let me know and I’ll pass on the number. 

There is no need to bring him presents; a far more valued gift is your time. If you can play computer games, chess, shithead or fussball.... you are my hero..... as there is only so many hours a day I can take! 

Please try not to let it show if you find seeing him upsetting. He will, at times, have various tubes coming in and out of his body, and his weight fluctuates hugely (especially when on steroids). He has enough to deal with, without worrying about what other people think (sorry if that sounds harsh). We like positivity in our lives - come in smiling. 

He actually prefers visitors when he gets home; Typically he is continuing on IVs or recovering from them when we get home, and this is the best time to see people, as he has more freedom, he is back in his own environment, and is gaining his energy back. IV antibiotics leave you feeling exhausted. 

Help in entertaining Anouk and Rosa is probably the biggest favour we can ask for. Knowing that they are happy allows us to focus on Isaac and getting him home. And they want and need some happy distractions at these times. 

As positive as l like to be, the separation, the worry, the pain...it affects us all x 

Waiting, birthdays, snow days.

We continue to wait for test results. Some have trickled in and others will take weeks more.... the news we do have is mixed...

• After being told that his lungs in broncoscopy looked like one of the worst our consultant had ever seen.... the preliminary results of his CT are looking, well.... pretty OK- and crucially, no signs of NTM disease. Full report outstanding. 
• His lung function a couple of weeks ago was really promising, but his Pseudo infection is rampant again, so he is back on extra antibiotics. We have to hope these work, otherwise we're looking at IVs again, and if we start IVs before Christmas, this would be the third time in five months - more frequent than he has ever needed them before. 
• His nose post surgery is better everyday.... but his lungs are not. He is coughing more each day. 
• Although now have to contend with the New-Twattish-Microbastard (CF bug-wise; really bad news) it's looking hopeful it is not the really nasty strain; we're looking at two years of treatment to try and eradicate the bug, but feel we got lucky somehow. 
• The surgery to fit his portacath has been scheduled for early January, hopefully before he needs IVs again, which is essential because it's increasingly hard to find compliant veins, and we don't want to go through another two week course of IVs seeking out hiding veins which only collapse ..... Only we have yet to convince him that a port is for the best (I'll blog about ports in more detail soon, but essentially, this is a permenant IV device surgically implanted into his chest wall, meaning he will no longer need other cannulas). 

We've also been having fun in the snow, and celebrating Anouk's birthday. Happy day beautiful! x 

Small medium and large today, including the rarely spotted grumpy teen! 

Viva la vida.

The NTM (New Twattish Microbastard) cultures continues to grow in the lab. First signs hint that it is NOT the really nasty kind (Abscessus) - and by that I mean he is definitely growing another, not quite so mean NTM bacteria, but not ruling out that he may have the nasty one too. Still, it makes us feel hopeful. We are now two weeks into a six week wait for the second lavage (taken when he had his nose surgery) to confirm. We also have the results of the doughnut of truth (CT Scan) to come next week - which will reveal the extent of the damage from his most recent exacerbation, and any NTM disease; since these are in the Tuberculosis family, the lasting effects on the lungs are different from those his Pseudo infection inflicts. We're likely looking at two years of treatment either way, but the strain he has makes a difference to the kind of treatment that is (oral or IV's). 

He needed a cannula for the CT on Friday, and this took a few stabs (he is covered in bruises already). Unfortunately he has less and less viable veins left now - years of IV drugs and tests will do that. We're waiting to see the surgeon about a portacath. Although Isaac is still not keen, we need to start these conversations now and try and win him round. 

He continues to recover from his op, and is now back at school. He's also started twice weekly personal trainer sessions at a Crossfit gym - he has a way to go before he gets over the massive impact his infection caused, but it's just amazing watching him now, doing pull ups on a bar. Just a few weeks ago he was using a wheel chair, on oxygen, and struggling just to get out of bed. He is also finally off the steroids, the side effects of which we will not miss. 

Anouk and Rosa have spent the day starting to make the house look Christmassy (way to soon for a tree for us still) and dancing round the kitchen, and despite the anxiety around Isaac's test results, a cough that he seems to be brewing further, I am feeling confident of a Christmas at home. We know the New Year will bring more hospital stays anyway. 

I saw this at the Frida Kahlo house in Mexico City in August. The house blew me away - a life of pain, but so colourful and vivacious. She was described as 'living dying' after polio and breaking her back in a road accident when she was young. Her paintings often illustrated her pain, her childlessness, and her politics, but still she said, Viva La Vida - Live Life. I fell in love a little.