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. 

Having a ball.

My friends and family mean the world to me. At the weekend we attended a fabulous ball in aid of the CF Trust, raising a whopping £15,000. We ate, we drank, we danced. Thank you to these (and other absent) very special people for always being there to support us, and our fundraising x 

Opt in, Opt out.... Give life.

Last year Wales voted to adopt an Opt-out system for organ donation; this means presumed consent unless you say otherwise in your life time. The family of Kirstie Tancock want to continue her legacy in having this change in law come about in England as well. They appear in a short film here talking about this. The change in Wales is now having a positive effect on the number of life saving organ donations going ahead; Its been known for a while that opt-out legislative systems can dramatically increase rates of consent for donation (the so-called default effect) - the UK is years behind in this. 

Consent rates internationally vary hugely, and I am talking about non-living organ donation here; where organ donation is a possibility from someone who is brain-dead. Germany, an opt-in country (as we are currently in the rest of the UK) have an organ donation consent rate of 12%, whereas in Austria, a country with a very similar culture and economic development but which has an opt-out system, the consent rate is an amazing 99.98%. So I fully support the campaign Kirstie began before her death. 

That said, I don't believe an opt-out system alone brings about the best chances for people waiting for organs, a third of whom die waiting here: Spain has one of the highest rates of donations, and the characteristic that enables the Spanish presumed consent model to be so successful includes the fantastic resourcing of transplant coordinators - this role is so so critically important; trained, empathetic people who can work with the family of the donor towards an outcome where a very sick person can benefit from a life changing transplant, and the family of the deceased can benefit from knowing that they have done so. We need better communication and a shift in public support of organ donation. 

Currently in Italy if the deceased neither allowed nor refused donation while alive, relatives decide on his or her behalf; despite an act that provided for a proper opt-out system, and consent rates are lower -this proves that a ‘soft opt-out’ approach alone isn't always successful. Here in England, even if you carry a donor card, on the day of your death consent must come from your next of kin, regardless of your wishes. 

In the U.K. we have the highest rate of family refusal of organ donation in the Western World. Which is why it’s so important to have the conversation with your loved ones now! 

So yes, opt-out here will invariably help, but this must come with better infrastructure, more funding for transplant coordinators, transplant programmes, and more funding for public awareness. In Spain, the opt-out system came into play in 1979, but it took a further ten years for organ donation rates to significantly increase, when they focused resource on this kind of support and education. 

In some countries, an opt-out system alone actually reduced the number of transplants going ahead. Consider this; Instead of two groups; people who opt in, and those that neither opt in or out. The new system creates three groups; people who opt in, those that neither opted in or out (now presumed consent) and now those who opted out (In Wales this is about 6% of the population). The family of the latter group may have agreed to donate, but now the decision was no longer theirs. 

While the debate goes on, sign up here, but please, also tell your loved ones of your wishes. CF is the third most common reason for lung transplantation,  and has the best survival rates (60% at five years post transplant) - probably because people with CF are used to adhering to a strict treatment regime, which is needed post transplant. 

To learn more about CF and transplant, visit here. When I talk to people about organ donation, they often joke that their organs wouldn't be wanted anyway, but the oldest known organ donor was an amazing 107-year-old Scottish woman, whose corneas were donated after her death in 2016. Even cancer patients can donate corneas, allowing the blind to see. This is amazing science, allowing massively life changing things to happen to very sick people. Have a great day people! x 

Joan Miro. One of my kids favourites. 

Haunting and loss.

This blog is hard for me to read, in all its haunting familiarity. I know I have said before, these last few months have left me feeling a little battered and bruised, but the more I feel like that, the more in awe I am of Isaac; he doesn't sail through these things exactly, but he definitely just gets on with it (with a 'not the best' reply, a smile, and a black sense of humour, which I dig). The thought that these events may haunt or leave him traumatised going into adulthood is incredibly sad. 

Today he is feeling much better. He cooked us dinner, and made a pudding, my budding chef. We are channelling his love of food to good effect. 

CF took the life of another friend last week. I met the lovely K, and her sister (who also has CF) many years ago, through fundraising. They went out of their way to support an event I was putting on, manning the children's craft area. They were brilliant, and I was not (I learnt that event organising is not my thing). My love goes out to Emma, her family, and all of their friends. CF is too cruel x 

Surgery.

It's 3pm in the afternoon, and I'm sat in hospital watching Isaac sleep - he is swollen but beautiful. He also is morphined up to his gorgeous eyeballs following his nasal surgery. What they thought was numerous nasal polyps (really common in CF) blocking his airway both sides, was in fact one small polyp, and three huge cysts, completely blocking his airways/cavity. He has come out bloody, swollen and brave. It will take a couple of weeks or more to calm down - but after that, he should feel much much better; he hasn't been able to breathe through his nose in a year. 

They also did a bronchoalveolar lavage, to collect more sputum from his lungs, to test further for the NTM (henceforth known here as; New Twatish Microbastard). 

I look at him going through all this and realise this is like a full time job - he is only twelve; but just to stay well each day and keep CF at bay includes countless medications, physio, endless nebulisers, IV's, hospital stays, added extras like surgery, intestinal blockages.... but everytime we come in, he does it without complaint, thanking everyone who cares for him. If he feels scared, he never lets anyone (but me) see it. He watches as the needles enter his skin. He knows which are his good veins, and which are now useless from so many lines. Today he looked around the huge theatre, eyes wide, but acting calmly. We don't usually see the inside, as they put him to sleep just outside, but today was different. I hate the way he shakes, like a fit, as the gas puts him to sleep. Today they made it strawberry scented for him. The staff are amazing. 

Hopefully this will just be a flying visit, and he will recover at home (he will miss another 10 days of school, because of infection risk - his attendance this term will likely be under 50%, a worry for another day). In the meantime, we wait nervously for the test results to come in. 

Have some more cool pictures x 

I

The good, the bad, and the... twirling thoughts around my maddened mind.

Clinic was a mixed bag. On one hand, he is so much better now. His chest sounds good, he is still coughing and productive, but he no longer sounds like he is breathing through treacle. He absolutely aced lung function - and for that we are so so glad. He surprised us all.

However, the bronchoscopy results that continue to creep in have revealed that he does have a new bacteria growing in his lungs - along with the PseudomonasA (bastard bacteria) and the Aspergillus (flagitious fungus) that we know already reside in his precious lungs - this bug is known as a Non-TB-Mycobacterium (NTM, a cousin of tuberculosis) - but there are many strains, one being much worse than the others. Until we know for sure which strain it is, there is nothing we can do, crucially (and terrifyingly) some are multi-drug-resistant. All of this information twirls and bounces around my mind and stops me sleeping. 

We are also preparing for surgery on Monday - to remove the Polyps growing in his nose and widen his airways. This should just be day surgery. Isaac will have IV antibiotics throughout, to help prevent his bugs having a little party down there while he is weakened by the general anaesthetic, and they will likely bronch him again while he is under, to hoover out more mucous to test further for the NTM. I'm packing an overnight bag just in case! I don't think he is aware yet quite how rubbish he is going to feel when he wakes up, poor kid - super sore throat and a punch in the nose. 

Have a great weekend guys. Here are some very cool pictures: 

To build a home

Anouk (age 8) wanted to write a post: 

CF splits our family up. It makes me feel sad. My brother has to take lots of medicine and tests. He stays in hospital a lot. I miss my mum and dad, and Isaac when they are gone. Me and my sister don't have CF because my mum and dad decided to put us in a freezer and made lots of eggs and then they picked us. We have to stay with our grandma sometimes when mum and dad are in hospital. My mum does fundraising for cystic fibrosis that helps a lot. They will make a cure. Isaac is a bit annoying sometimes, but I love him. I felt scared when Isaac was very poorly in intensive care. When we visited him he had machines all around him, tubes up his nose, and lines in his arms. But it was still nice to see him. It was hard for our family and especially hard for my mum and dad.It was scary for us when he was in hospital because we didn't know when he was coming out. 

And so Rosa (age 5) had to follow!: 

I hate it when Isaac goes into hospital. And he doesn't like to stay in this long, and it makes him feel bored and sad from home. I hate when he is sick. It feels sad when he's at hospital. I miss the people that look after him and definitely Isaac. We see lots of poorly people in hospital. Some have no legs. But they have cool toys. When Isaac gets home from hospital we get to go on special moments. We went to Center Parcs. It was happy. People that got CF they feel really bad and sad from home. And Isaac has lots of tests and he has cuts, and he throws up in a special bowl. It's fun to see him. We feel sad when we're at home without him. Even more happier when he comes home.

We build a life around our own, exhausting, funny, heartbreaking, loving and cosy reality. CF does not define us. Family does x 

There is a house built out of stone
Wooden floors, walls and window sills
Tables and chairs worn by all of the dust
This is a place where I don't feel alone
This is a place where I feel at home

'Cause, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it's time to leave and turn to dust

Out in the garden where we planted the seeds
There is a tree as old as me
Branches were sewn by the color of green
Ground had arose and passed it's knees

By the cracks of the skin I climbed to the top
I climbed the tree to see the world
When the gusts came around to blow me down
I held on as tightly as you held onto me
I held on as tightly as you held onto me

And, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it's time to leave and turn to dust. 

The cinematic orchestra - to build a home. 

This life.

We've just got home from a weekend away with a very Christmassy feel, full of swimming, feasting, water slides, tree top adventures and pony rides. The kids had a ball, and Isaac was really pretty well, this last week his health has come on in leaps and bounds. They all so deserved this. 

This week we are back at hospital for clinic and the all-telling-lung-function-tests - massively hoping for an improvement on his last results. Next week we are back in for his nasal surgery, which will likely set him back again. But only a little we hope. General anaesthetics are always a risk, and so he will have IV antibiotics throughout the surgery to give him some extra cover. Those nasty bugs like to party given half the chance. 

As close to a nice picture of the grumpy teen as we are allowed these days.... 

For me, this last week has been full of sadness too; The world has lost a funny and charming soul. Another friend is coping with the impending loss of her husband. And news of more earthquakes, the worst yet. Loss seems all around us, and I admit, at times it is hard for me to see the light amid the darkness. 

That said, I'm happy to be back at work, although busy, and trying to make better plans for future hospital admissions. As we now know we will be going in for regular, planned courses of IV antibiotics (therefore spending more time in hospital) we're trying to think of any ideas which will help us provide more stability for the kids, and enable us to work when we can. Work have been really supportive of all of my ideas, for example, allowing me to have a loan phone for admissions (so I can use the data for wifi on my laptop if I can't get to the office - Hospital is fortunately is just a ten minute cycle ride from my office, so my hope is to flit more between the two), and fully flexible working. 

In between all of this, and extra treatments for Isaac, we have been busy having as much fun possible. My little Halloween dudes: 

Have a great day. Be safe x 

Frustrations.

I want to tell you is that Isaac is well, back at school, and loving life; I'd love to tell you that Rosa is settled and behaving again, and her rage and tantrums are a thing of the past; That Anouk is getting all the love and attention she deserves; That I am sleeping well and when I fart, rose petals fall to the ground behind me....

But it's just not true. Recovery is slow; Isaac is vomiting daily, and missing more school. This could be a) cough-til-your sick vomiting, b) CF digestive problem related vomiting, c) side effects from the steroids/anti fungal drugs which he is still on or d) a bit of everything, with a little post-hospital anxiety thrown in for good measure - we just don't know. Plus, we think he has been teased at school about his moon face (known side effect of steroids) which makes me feel mildly, well, murderous. 

Rosa swings from loving me so hard, to hitting me in rage. I am trying to get back into work, which is a welcome distraction to everything (I love my job and colleagues) but my heads not quite there - I want to be there, but my *anxiety still come in waves. Still trying to figure out how the time I have taken off work will affect us (unpaid?) and at the same time planning how we will manage this better in future, as we are facing more regular, planned hospital stays. 

My anxiety stems from seeing Isaac become so sick, so quickly; a glimpse of a future that we hope never happens. 

We are waiting for a date for the CT, while results from the bronchoscopy come in slowly - and will do for some weeks yet. We also have to prepare ourselves for surgery in a couple of weeks; shit, that had better go well.

* Anxiety is an emotion characterized by an unpleasant state of inner turmoil, often accompanied by nervous behavior, such as pacing back and forth, somatic complaints, and rumination.^[1] It is the subjectively unpleasant feelings of dread over anticipated events, such as the feeling of imminent death.^[2] Anxiety is not the same as fear, which is a response to a real or perceived immediate threat,^[3] whereas anxiety is the expectation of future threat.^[3] Anxiety is a feeling of uneasiness and worry.^[4] It is often accompanied by muscular tension,^[3] restlessness, fatigue and problems in concentration. ^<Wikipedia) 

And so today, my world, it smiles.

Today, I returned to work. Not only had my lovely work friends organised a cake sale, to raise funds for the CF Trust, but they had created a 'Get Better Box' for Isaac and all the family - including vouchers (massage for me, money for Isaac, and cinema for the girls) and a huge array of games and goodies.

As well as homemade food deliveries from our friends Gem, Jin, and Lizzie; the other day Ju and Jess sent a whole box of stuff for the kids, gin and a luscious fish pie; Other friends have had us over and spoilt us (love you Fountains); Isaac's school friends and staff have sent chocolates and costa vouchers; We've had cards and messages from people we haven't seen in ages; and people are sharing my blog to help raise CF and organ donation Awareness. 

It's all quite.... overwhelming, in a wonderful way. I held it together at work all day, not a single tear, but hell, they made it hard for me.... Thank you all so much, you crazy, wonderful, amazing people! 

Better still, Isaac continues to recover, and managed a part day at school today, the first time in a month. No more test results yet. We're just trying to enjoy being home together while we can. Big love x 

Normality: noun; the condition of being normal; the state of being usual, typical, or expected.