Forgotten Fears

It seems like such a long time ago that I ever really felt afraid for you, but today I find myself reunited with feelings I hoped would never feature in my life again.  Looking at you, no-one would understand what there could be to worry about – you are a ‘picture of health’ as they say.  Those rosy cheeks and that sparkle in your blue, blue eyes betray what lies beneath.

For the last year, we have taken the news from every cardiology follow-up as fantastic steps towards you being a miracle in the making.  Each appointment showed further reduction in the aneurysms in your heart, and we celebrated every little move towards what we thought was your recovery from this awful disease.  And then, little by little, the reality dawned that the likelihood that your heart was magically repairing itself from the damage that had been done was slim, if near impossible.  My mind is filled with a constant echo of statements and warnings; babies diagnosed under 6-months are at increased risk of coronary stenosis, 75% of children with giant aneurysms will require intervention later in life, an angiogram will show us if there is any sign of stenosis, look out for signs of angina… the list goes on.

Something shifted this weekend following the receipt of the letter from your last Cardiology appointment.  At that appointment the Cardiologist measured your coronaries with an echocardiogram.  I noticed the figures 0.18 at the bottom of the screen – that is 1.8mm.  The cardiologist said “About the same [as last time]” and I remember thinking, “No, that’s smaller still…”  That said, the outcome was still the same, and your Cardiologist continued to urge us to proceed with the advised angiogram.  In the time since that appointment I had some e-mail exchange with a reputable Cardiologist in the Kawasaki world which gave me some comfort, and I have also spoken with the Cardiac Nurses who have agreed to make an appointment for me to meet with the consultant who will perform the angiogram to ensure I am completely comfortable with what you will go through when the time comes.  And then at the end of last week the letter came.  Encouragingly, your Doctor has discussed your case with a Paediatric Cardiologist in London, whose name I immediately recognised as one of the speakers at the KD Symposium in London earlier this year.  I was pleased that your doctor had taken this step, and it restored my faith a little.   Well a lot, really.  The letter also gave a better explanation than I received verbally at your appointment, and I now understand that an angiogram is really the only solution because of your size.  Although I still feel some degree of trepidation about the procedure, I have reconciled myself to the idea that this really is necessary for us to understand how this disease will continue to affect you in your future.

It was niggling me that the measurement was described as ‘the same’ at your appointment, but my memory was telling me something different. So I fished out your medical file (yes, I have a very organised file that is getting pretty thick now!) to have a look through the previous letters.  I was right – the previous appointment recorded a measurement for your left coronary artery (LCA) as 2.7mm.  So rather than being ‘the same’, the artery has actually remodelled by almost another millimetre, which is a reduction of a third of the size that it was just three months prior!  I don’t know if you can work out where my thoughts are going with this, but let me tell you, it has got me really concerned.

My initial concern is obviously the speed of remodelling.  OK, so we don’t know what is causing that – could it be layers of blood clot (thrombus) that is causing a narrowing of the arteries, or scar tissue forming on the artery wall as the aneurysms repair?  Since your KD journey began, I have plotted the measurements on a graph since the beginning (this will come as no surprise to those that know me personally!).  It’s been a bit hit and miss, because not all the measurements are documented in the letters (sometimes we get all three – left, right, and left anterior descending) sometimes only some, sometimes none.  And I haven’t always managed to jot the numbers down from the bottom of the screen during the appointments.  But one measurement that I have been able to capture consistently is that of your LCA, which was the most severely affected by Kawasaki Disease.

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What the graph shows me is that your LCA is now 65% more narrow than it was at it’s worst, and the pattern of remodelling has been as follows:-June (diagnosis) to July 2015             15% reduction

July to August 2015                               32% reduction

August to September 2015                 10% increase (anomaly?)

September to November 2015           6% reduction

November ’15 to May 2016                 13% reduction

May to September 2016                       33% reduction

Now I’m not statistician, but these numbers have got me worrying about the rate of remodelling.  How long it could be before that 1.8mm results in 100% stenosis?  And if your arteries become completely occluded, preventing the blood from flowing through your heart, there is no other outcome but a heart attack.  Is that even possible?!  I can’t even…

So now I’m thinking all sorts – why didn’t the Cardiologist mention this difference at the last appointment? Is she not as worried as me?  She said the measurements were the same, but they clearly are not.  And if you are now on a waiting list for months before the investigation can be carried out, I am worried that you could suffer a heart attack before we get the chance to understand what is going on. I mean, can that happen? What is the likelihood?  It’s possible, but is it probable? 

I’ve left a message with the Cardiac Nurses – I really need to speak to them to air my concerns and get some answers. I feel, whether logical or not, that we are just waiting for your heart to fail.  And what just dawned on me last night as I was over-thinking this whole situation is that we have never considered when the worst could happen.  We were told to look out for signs of angina – the only sign we were made aware of was if you were to suddenly stop playing for example.  But last night as I marvelled at this amazing little girl who sleeps through the night, always has, the thought entered my head; what if it happens when you are asleep…?  I mean, if I were a statistician I would be able to calculate the probability of a heart attack happening at a certain point.  You sleep between 14 and 17 hours per day!  That means that you are asleep for up to 70% of any given day…

So now I have a new fear, and I cannot shake it. It kept me awake last night and brought tears silently streaming as I lay there struggling to get to sleep.  It caused me to jump out of bed on more than one occasion to check the monitor was switched on, and it meant that I woke this morning with that old feeling of dread until I heard the first murmur from your room.  When you were diagnosed with KD and we were told that your heart was significantly damaged by the disease, I feared every day that I would wake to find you taken from us.  I was so afraid of finding you gone that I was frozen to the bed until I heard even just the slightest movement from the baby monitor.  Every bit of me wanted to get out of bed and check you were breathing, but I just couldn’t physically move because the fear kept me pinned down.  How would I know? I mean are there any signs? You often cry out in your sleep, maybe just once, and then you drift back off to sleep.  Is that what it would be like? If you were sleeping, and me and Daddy were fast asleep, would there be anything to hear?

I have read that the signs of heart failure in a child could include the following:-

  • excessive sweating
  • extreme tiredness and fatigue
  • poor feeding
  • rapid heartbeat
  • rapid breathing
  • shortness of breath
  • chest pain
  • a blue tinge to the skin

Would you let us know about any of those if you were sleeping? Would we hear? Would we know you were in trouble?  You think about emergency procedures in the event of a heart attack – call 999, get an ambulance, perform CPR… But if it happened in your sleep and we didn’t know, you could be left for hours before we realised, and by then it would be too late.

I wish I didn’t have such a vivid imagination. My mind plays out these scenes like a movie in my head, and I can’t shake it.  I have ‘seen’ it – the moment I find you gone.  I have ‘felt’ how I didn’t want to live anymore in a world without you in it.  I am angry at the world, angry at this insidious disease that crept up on you and broke your heart.  And I am afraid beyond words of what might be around the corner.  All parents worry about the fate of their children.  Hopefully most see the death of their child as an unlikely threat, and it features just for a nanosecond of each day.  To know that there is a possibility (regardless of the probability) of losing your child is a feeling I cannot describe adequately to anyone who hasn’t experienced something similar.  It’s like standing on the edge of a cliff, a dark and indeterminate cavern beneath, knowing that just one breath of wind could change the course of your life forever.  Sometimes I can barely breathe for fear that the slightest movement could unbalance me.

You have many people rooting for you – hoping, wishing, praying.  Some believe you are going to change the KD history books.  Others say you are a fighter, an inspiration and a miracle.  I’m too superstitious to believe in any of that for fear of jinxing your progress.  There are some that have so much faith in God that they ‘know’ you will be ok.  I worry that if there is a God his plan could be for the world to learn from a tragedy – your tragedy.  I just don’t know anymore, Peanut.  All I know is that right now I find myself out of control yet again at the hands of this disease.  I am still in utter disbelief when I consider the events of the last year, and often think about bundling you in the car and running far, far away from all this.  Pretend it never happened.  But there isn’t just you to think about, and I have responsibilities and relationships to consider.  And sometimes, no matter how hard it is, I just have to accept that I am indeed a grown up.

I don’t want to be a grown up anymore :( 

 

A (rainy) Day in the Life of

When I was working, I often used to think about stay at home mums and wonder what on Earth they did all day.  I imagined it was countless coffee mornings and baby yoga sessions, and although I thought it could be quite a dull existence, I often envied those mums who got to spend all their time with their children.  Now I am one of those mums – well, for a time anyway.  I am not a forever SAHM, but I am on a career break following a year off on maternity leave, and am now 17 months into a 2-year break from my job.  And in my new role I have gained more than enough experience to know exactly what SAHM’s do all day, and it varies from minute to minute and day to day.

Mostly I consider myself lucky. Lucky to have my daughter here to share the time with (see previous blogs tagged Kawasaki Disease if you are not familiar with my daughter’s story), and to be able to share so many precious times with her.  It’s also nice to be able to take the other children to school, and to be here when they come home, cook a meal, do ‘normal’ family stuff.  One of the huge positives for me is that I pretty much always have a clean and tidy house, and I have never been on top of the laundry so much in my entire life to date!  Boring, I know, but I have a child who sleeps for three hours in the day so I have to keep myself occupied (although I will confess, I have been known to spray some polish into the air and watch a movie or two!).

Yesterday was a pretty nothing kind of day.  The weather forecast suggested it would rain  so I had already decided it would be an indoors day (much to my annoyance, given that we spent all last week on house arrest with my youngest whilst she battled chicken pox, hand, foot and mouth, or both!) Oh, joy!

So, here is what this SAHM did all day yesterday…

07:01     Text oldest daughter “What time do you get up?”

07:05     Text received “Now”.  Well that’s that sorted! The parental heaven that is a 12-      year old that can quite easily manage herself in the mornings.

07:10     Screaming of the house alarm! Eldest has remembered to let the dog out, but has forgotten to unset the house alarm before opening the back door.  Again.  For the millionth time since we got the puppy!   Baby stirs, lay as stiff as a board with teeth clenched, hoping for the chance to hit the snooze button!

07:40    Wake middle child (cue “I don’t want to get up!”, “I’m still tired!”, “I hate school!” or any combination of the three).  Manage to cajole him out of bed to get dressed (again to complaints that this isn’t the order he likes to do things in – he prefers to eat breakfast in his pyjamas, aka pants, but I want him organised as soon as possible!).  Go downstairs, feed the dog, make breakfast for the awkward one and prepare packed lunch.

08:00    Wake baby up.  She greets me as always with a huge cheeky smile – the only one of the family who seems to be happy to be awake! But then she did go to sleep 14 hours ago so I guess she’s all done with sleep!  In the interests of being organised, today I get her dressed before breakfast and vow to be extra careful with the Weetabix!

08:30    Leave for the school run.  Although it’s only just under a mile and a half we drive, because quite frankly we would have to be up far too early to get there on foot with my son.  In my defence, I do sometimes leave the car at school and walk home, returning on foot at pick-up time to get some daily exercise, but only on dry days or when I can be bothered!

09:00    Get home from the school run and make a cup of tea.  I made a decision yesterday that Freya needed more stimulation, and vowed to spend at least an hour per day in some kind of valuable developmental pursuit.  Got the painting stuff out and proceeded to paint at the kitchen table (or in Freya’s case, ON the kitchen table!).  Good job this stuff is washable!  She was bored after about 30 minutes – ok, ok, so it was me who was bored! I think she would have painted all day long if I had let her! But she’d managed to paint about 5 masterpieces using mainly her hands and the wrong end of a paintbrush, so I figured that was enough.   Took photographs of said masterpieces and posted on Instagram to show world just how good I am at this mummy stuff (I’ve got to love Social Media for allowing me to share all these perfect, wonderful moments.  Not sure the world is ready for the screaming banshee selfie!)

09:30    Bribe youngest with a biscuit to allow some sofa time and a bit of The Wright Stuff. Email Immunologist to ask for advice regarding the postponement of Freya’s MMR vaccination.

09:40    Check e-mail.  No reply. Eat half a packet of Rich Tea biscuits with a cup of coffee.  I don’t even like Rich Tea biscuits!

10:00    Check e-mail.  No reply. Anyone would think this doctor is busy….

10:20    Google “What to do with a toddler all day long.” Roll eyes at Netmums.

10:30    On first sign of tiredness, make up small bottle of milk (I know it’s a bad habit that I need to stop!) and put Freya in her cot for a nap.

10:42   Check e-mail.  Still no reply.  Consider phoning the hospital but decide to leave it until tomorrow. Very reasonable of me, I thought.

11:00    Through the baby monitor – “Mummyyyyyyyyyy”.  Half an hour isn’t enough for a nap, so I speak into the monitor, “Go to sleep!”.  And she does.  For another two hours!

11:10    Google “What to do all day when your toddler sleeps for hours”.  Limited resources available on this topic.  Eventually give up before I risk finding something I should be doing.

11:30    Settle down on the sofa with the puppy on my lap, and watch daytime TV – namely This Morning (got to love a bit of Phil and Holly) and Loose Women.  Check Facebook (ok, I don’t think this was the first time I did that, but you can make the assumption that I check  it every 5 minutes and save me writing every time down!).

13:00    A boring and uneventful day is broken up by a momentous happening – the postman arrives with mail!! Ooh yay! Excitement! Except for the fact that the mail seems to be a rock in an envelope and makes such a thud that it wakes the baby up.  Damned postman!  And to add insult to injury it is a Jojo Maman Bebe catalogue, sent by a company who clearly have no idea how skint this SAHM is!  

13:05    Discard catalogue in bin, and get baby up.  Change nappy (as with checking FB, please note this isn’t the first, or last, nappy change of the day).

What to make for lunch….

13:10   Decide to make omelette for lunch.  Whatever I make it will end up being a race against time to catch it before it hits the floor and the eagerly awaiting puppy.  I make sure she sees me cutting the cheese (“eeeese”, her favourite) and ham, (“am”, another favourite) in the vain hope that this might make the eating of the finished article more likely.  At the last moment before pouring the mixture into the frying pan I am struck with the notion that Freya may be more likely to eat the omelette if it is presented in a novel way.  Out come the pastry cutters; a star, a circle and a car.  She is sure to eat omelette if it comes in quirky shapes, right? Well, don’t bother trying it at home.  The mixture leaked out from underneath the cutters and by the time I had prized the cooked omelette out from the metal objects I was faced with nothing more than a heap of omelette.  I served up the omelette (“Urgh” <chuck>) with some sticks of red pepper (“Urgh” <chuck>), some cucumber slices (“Urgh” <chuck>),  and four little squares of cheese (“Mmmm eeeeese!”). On the third scream of “DOWN!!!” I took my little angel out of her highchair proud in the knowledge that after all that effort, the darling ate four fingernail-sized pieces of cheese.  Groan!

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14:00    Determined not to be put off by the epic fail of lunch, start to prepare vegetables for batch cooking of spaghetti bolognaise/cottage pie.  Cut vegetables with one leg firmly planted against the drawers to discourage attention-seeking daughter from removing all kitchen utensils and feeding them to the dog.

14:30    Chastise baby for pulling books from the bookcase and tearing yet another cover.  How is it that the bookcase has survived two children, and I now find myself blessed with a destroyer of one of my most prized possessions? Baby looks sorry, so I forgive her.

14:35    Chastise baby for pulling books from the bookcase and tearing yet another cover.  Replace books and repeat 58million times.

15:15    Bundle daughter into car and drive to school to pick up middle child.  He’s had a good day (“100%” – my son provides his evaluation of the school day in terms of percentages).  Remember one of my favourite movies – Rain Man.

15:40    Chatting with a mum outside the school gates ends in tears when Freya’s ‘unkind hands’ scratch the face of the little boy who is trying to be nice.  Make swift exit.  Must send mum a message when I get home to apologise for toddler’s assault.

15:55    “Can I play on Minecraft?” Most uttered sentence in middle child’s vocabulary.

16:00   Text mum to apologise for toddler’s assault.

16:30    Dish up lovingly prepared spaghetti bolognaise.  Wonder how much will end up on the floor. “Not again!” (Son’s affectionate response to being served pasta).  Surprised when youngest wolfs down an entire bowl of pasta and half a dozen pieces of bread.  Remember lunch.  Consider skipping lunch in future…

17:00    Clear away dishes.  Make tea for mother-in-law.  Sit and drink tea safe in the knowledge that there is now a second pair of adult hands in the house! Chastise baby for pulling books from the bookcase and tearing yet another cover….

17:30    Bath baby, pyjamas on, milk.

18:00    Put baby to bed.  Aaaaaand relax.

After that things are pretty easy.  Another hour before middle child is off to bed.  Dinner.  Eldest takes herself off to bed at some point during the evening.  Watch Cold Feet.  Go to bed.

And that’s about it.  In fairness, I try to avoid days like these, but with money fast running out I don’t have many options on rainy days.  Being a SAHM is a constant mix of emotions.  I’m lucky and glad, and lonely and sad all at once.  I would not change the opportunity I have to stay at home with my daughter, and I am lucky that she likes to have a long nap in the daytime, leaving me some free time to do whatever I choose.  Problem is, I get so bored of my own company whilst she is sleeping and it often makes me feel a bit miserable.  Right now, the house is silent but for the hum of the baby monitor beside me;  Freya’s nap was a little late today on account of us making it out of the house this morning for a visit to the local wildlife park.  In about 10 minutes I will have to wake her up to take her on the school run.

Today was a different kind of day, with a lovely (if wet) trip to Yorkshire Wildlife Park for a couple of hours this morning. The weather forecast was wrong though, and we got completely drenched.  Freya seemed freaked out by the rain dripping on her, and as a result I had to carry her around the entire Park! As an annual pass holder, entrance was free – result! Except for the amazing sweet shop on the way out where I spent more than the ticket price on Pick ‘n’ Mix and nougat! Doh!

With Autumn approaching, and Winter just around the corner, I need to have a serious think about how we are going to spend our days.  And I need something to pass the time whilst my daughter sleeps every day.  All suggestions welcome!

Virtual Company (or why I spend so much time on Social Media)

I am often criticised for how much time I spend on Social Media, Facebook mainly.  It’s like it should be something to be embarrassed or ashamed of, and I really ought to “get out more” or “get back to work” because apparently I have “too much time on [my] hands”.  But as I sit here in the second hour of my daughter’s three hour nap, with an empty laundry basket and a clean and tidy house, I can’t help but ask the question, “What else should I be doing?”  Today I’m completely stumped.  I am slowly developing cabin fever after four days at home with two unwell children (one went back to school today, but the other is on house arrest on account of some currently unconfirmed, but most likely contagious spots), and I have literally lost any motivation to get up off my backside and do something other than play 10:10 on my iPhone whilst watching Loose Women.  So I spend a large chunk of the day, whilst my little one is sleeping, with my phone in my hand and my butt firmly planted on the sofa, and that’s when I start to yearn for company and I’ll take whatever kind I can get, even the virtual kind.

You see, I’m a really sociable person.  I thrive in the company of other people (yes, the real-life human kind) and I LOVE to talk.  I have never been that good in my own company; I could never do a sponsored silence.  I’m one of those people who finds it difficult to stay quiet in situations when you really should.  I just about managed it in the Sistine Chapel (well, let’s face it, you’ve got to have some respect in there), but put me in a quiet place for too long and you’ll find me starting to fidget.  I’ve been known to giggle at a funeral (don’t judge me – it’s nerves, not disrespect).  

So what does someone like me do when I’ve got something to say, but there’s no-one here to listen?  Simple.  I tell the virtual world through Social Media.

Take yesterday for example.  My daughter had her phone confiscated at school and I received a call to tell me that it is the school’s policy for an adult to collect it.  I’ll not bore you with all the details, but let’s just say that the ridiculous policy really annoyed me – partly because I was home with two poorly children, partly because it meant my daughter would have to come home from school with no means of contacting me if she was unsafe. I was spitting feathers over the stupidity of the policy and needed to let it out.  Alas, there was no-one to let it out to, but if I didn’t get the chance to vent I would literally drive myself crazy with anger all day long.  When you let stuff like that out, you get the chance to have your feelings validated by others who share your views.  You also get the opportunity to  hear opposing views which provide some balance to your own take on the situation and help to calm things down.  So, in the absence of real-life human friends (not generally, just this week while we are on house arrest, lol!) I took to Facebook.  I immediately felt better after spilling out my rather long rant about the situation, and when the comments started to come in support of my rant, I felt better still.  So where’s the harm in that?  Or would it be preferable that this SAHM just kept her thoughts and feelings to herself in the silence of her own company until eventually drowning in a pit of misery….?

I also share a lot of pictures

Yes, I do.  And I’m sorry if you get bored of seeing pictures of my little girl clogging up your Facebook feed.  I don’t get the chance to share my little girl with many people (see above, on mostly being holed up indoors as she sleeps the day away) and Social Media is my way of sharing her with the world. And when I say ‘world’ I really mean it, because through our experiences with a rare childhood disease diagnosed last year, my daughter has connected us to people from across the globe.  Sharing her pictures has helped us to raise awareness of the disease, educate and support parents going through the same struggle, and inspire huge amounts of money for research, and because of that I will never be ashamed.  I have shared everything from shocking photographs of my daughter when she was sick (not for sympathy or self-gratification, but to show people just how awful the disease can be for a child) to beautifully filtered shots of her sniffing a daisy.  Those pictures show how far she has come, and I am grateful to have her here with us every day.  So whether it be Facebook, Instagram or Twitter, I am going to keep on sharing the photos that make me cry and those that make me smile.   I make no apology for not featuring as many pictures of the other two kids – it isn’t because I love them any less, it’s just that they’re at school all day and when they are around there is very little time for taking pictures!  Warning: you are likely to see as many pictures of the puppy as you do of my little one.

I go through periods of celebrity-hounding

I am not ashamed to admit it! If you follow @freya_story at all you will see that I go through phases of hammering different celebrities with requests to share my tweets aimed at broadening awareness of Kawasaki Disease.  I’ve had some success – Anthony Minghella, Miriam Stoppard, David Bull, Fay Ripley, Chloe Sims – but not even a fraction of the success I hope for.  I am targeted in my approach, choosing to follow people with medical links or with children of their own and might therefore empathise with our situation enough to share.  It’s not about the personal pat on the back, feeling like you have somehow connected with fame, it’s about audience reach.  If I could stand on a mountain with a megaphone to ensure that everyone in the world had heard of the disease, I would.  I don’t want another child to suffer because of ignorance.

I spend a lot of time in Facebook Group discussions

I follow a lot of Facebook groups connected with Freya’s illness.  Through those groups I have learned a lot, gained a lot of support, and been in a position to provide information and support to other parents in our position.  I have developed relationships with people with a common interest, who truly understand the pain my family has felt in the last year. I have built a strong network of support for my daughter – support that has helped me through the experience.  It is a good feeling knowing that there are so many people that care about her and are interested in her journey.

There was a time when I was active in all the groups pretty much 24/7.  It was a blessing and a curse.  My FB newsfeed was constantly streaming with stories about a new diagnosis or a new fear.  For a little while, when I was receiving counselling, I came away from all the groups.  Not because I didn’t care, but because I needed to focus on getting stronger which was difficult when I was constantly surrounded by sadness.  Now I am following those groups again (I never left them, just reduced their appearance in my feed) I feel more able to provide support where I think it is helpful.  I no longer feel the need to put my twopenneth into every post, choosing rather to scan the comments to make sure the questions or concerns have been answered.  If someone else has shared my thoughts, then that’s good enough for me.

I know that my involvement in these groups has helped people, and as long as I can be useful I will continue to be involved.  The balance that I have now is much more healthy, although clearly this week I have had a lot more time on my hands for such pursuits!

I get a lot of messages

Because I reached out to share Freya’s Story, we have become connected to the world of Kawasaki Disease.  I have received messages from many people across the world, from Hong Kong to Spain, Australia, the US and Pakistan.  Mainly mothers who have wanted to share their experiences, send good wishes for Freya, or who just need someone who understands to listen to their fears.  I am one of those people who believes that whilst I have the ability to help, I have the will.  I could not turn my back on someone who could benefit from talking to me, no matter how little I might help in the scheme of things.  And I’ve already told you, I LOVE to talk, so I guess it’s a win-win!

I blog

I don’t write so much these days, and I’m still working out what it is that I want to do  with that going forward.  My blog began as Bluemama – somewhere to share honest, candid experiences about motherhood.  With Freya becoming sick shortly after she was born, the blog very soon became focussed on her.  If you have followed Freya’s Story you will know that it started with a journal that I kept during the 6 weeks that she spent in hospital in the Summer of 2015, and I have continued to post updates, share information and occasionally blog about our experiences with the disease.  Blogs relating to Kawasaki Disease are always tagged as Freya’s Story and are shared on the FS Facebook page (www.facebook.com/freyasstory) and/or Twitter (@freya_story).  Mostly everything else is shared on the Bluemama page, which is the least active of the accounts.  Random stuff, like when I get the urge to write a poem, just stays on here.

I love writing – it’s another way for me to get all the thoughts and feelings out of my head. It’s great when someone shares a post, or is touched enough by it to make a comment, but mostly it just feels good to get it out.

And that’s about it.  Yes, I do spend a lot of time looking at my phone; enough to worry sometimes about how much damage that might be doing to my brain! But it’s rarely in some idle pursuit (with the exception of sleepless nights when I get a bit obsessed with 10:10!)  When the baby’s spots have all cleared up, no doubt I will make it back out into the outside world.  But while she is sleeping from 11am until 2pm every day, and the washing and ironing is all done, and I’m sitting in a clean and tidy house (and even if none of that were true) I am going to wholeheartedly and unapologetically embrace my virtual friends🙂

A Day of Ups and Downs…

…or that time the Cardiologist ruined our day

Dear Freya

What a day we had yesterday! The time had come around for your cardiology follow-up appointment in Leeds.  I can’t believe it has been three months already since the last one! At that appointment, your doctor told us that they want to perform an angiogram to get a closer look at your heart to understand what is causing the rapid remodelling of your coronary arteries.  I bought us three months’ breathing space little Peanut, but it just flew so quick, and here we are again.

Your appointment wasn’t until 15:40pm.  I figured we could sit around at home all day agonising about the impending appointment, or we could make a day of it.  So Daddy dropped us off near the train station, and we hopped on a train to Leeds at around 10am, not before sharing a cinnamon swirl from the coffee shop on the platform.  You were such a good girl on the train.  We managed to get a seat with space for the pram (very unusual! We usually have to resort to standing room only, even if we manage to get into the wheelchair carriage because often ignorant, able bodied people sit in those seats).  It isn’t a long journey to Leeds, so it felt like we were there in no time.  Luckily a nice gentleman helped me to get the pram off the train, and we were on our way!

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I thought we would have a little ‘mooch’ around the shops for a bit, then grab some lunch before your appointment.  I had arranged to meet with a friend – a fellow Kawamum – and her little boy.  You remember Tom – we meet for playdates sometimes.  Well he had an appointment at the hospital just after yours, so we thought it would be nice to catch up.  We went directly to the Trinity Centre – there is a ladies shop there called Mango that I like very much (despite being told by a young girl on holiday once that she found it a “bit mumsy” – ouch!!).  As we were heading towards the lifts, a woman with a clipboard and a gentleman with a video camera approached us.  The lady said that they were filming a TV commercial (I think for the Trinity Centre), that they were looking for certain types of people, and I was exactly what they were looking for.  She asked if I would be interested in leaving my details, and I said “Go on then!”  So she wrote my name, my age and my number on a card and I had to hold it for the cameraman whilst he recorded and took some stills.  The shoot is on the 13th September – I said I would have you with me, and they were happy for you to come too.  So we just wait now, and see.  I really don’t mind which way it goes – it was nice to be stopped and asked, and it was fun saying yes.

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We wandered along to Mango where I had a browse through the clothes – you moaned as soon as you saw what kind of shop it was, so I bribed you with a biscuit.  You were great while I tried on a few things, and I walked out with a bit of a dent in the bank balance (oops! Those savings are not going to last me much longer on this career break!)  From there we headed down to Harvey Nicholls (don’t judge me! It was only because I know they have a MAC counter and I wanted to buy a specific lipstick).  I picked up a few things, and joined the Harvey Nicholls Rewards club – don’t think I’ll be earning many points in there, haha!   All the while, you were chattering away in your pram, shouting “Hiya!” at everyone who passed by (we need to have a word about stranger danger soon).  Outside the sun was shining – that was a turn up for the books, as the forecast had suggested rain all day.

From the shops, we took a walk down to the bar where your cousin works.  She’s just graduated from University this year, and is now out in the big wide world.  She was pleased to see you – it was very quiet in the bar.  We ordered some lunch, and your cousin joined us while we ate.

Shortly after that I got a call from my friend, the Kawamum; she had arrived, so we walked to Millennium Square to meet her.  You and Tom had a lovely time watching the waterfall and running around the square chasing the pigeons.  I chatted to his mum about the latest with you two, and before I knew it your Daddy was on the phone – he had arrived at the hospital, it was time to go.

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When we arrived at the hospital, we were immediately sent for an ECG – that’s normal, don’t worry! We always get that out of the way first.  Problem is you hadn’t had a sleep earlier in the day because you refuse to sleep anywhere but in your cot, so you were a bit grouchy by the time we went in.  The lady tried to put the stickers on you, but you weren’t having any of it.  You were crying, and screaming, and pulling the stickers off.  Another lady came into the room who was really surprised by your reaction, as she has done lots of your ECG’s in the past and you have always been such a good girl.  We managed to calm you down in my arms, and the lady attached the wires to the stickers (not technical terms, I know!), but no sooner had we tried to lay you down again were you crying and screaming and ripping the wires off.  They decided that you were too distraught now to continue; they didn’t want to put you off for life, but also the reading from your heart would not have ben a normal one with you so worked up.  I was worried about us missing something, but they reassured me that the echocardiogram would show up anything we needed to see. I hoped you would be more settled for that.

We went back to the waiting room and you were called in to be weighed and measured.  As soon as you walked into the room you started crying and screaming again.  You have been weighed in there so many times in your little life – it’s just a room with a table, a changing mat and some weighing scales.  But for some reason, yesterday it seemed much more sinister to you, and you were just too tired to take it.  We did managed to get you weighed and measured though, as you were able to stand up on the big girl scales instead of having to lie down on the table.  We went back out to the waiting room where we were told that the cardiologist was running a bit late, so you played for a while until we were called.  A baby was crying in the corner, and you looked ever so concerned and kept saying “Ahhh”.  And in the next breath you were pulling the steering wheel off the push along car and driving it into the wall.  You are a monkey!

Your doctor finally called us in, and we went into her room.  We updated her with your current aspirin dosage and told her that you have been displaying some unusual behaviour.  Specifically, you have started randomly lying down on the floor after some activity and just staying there staring for a while before we give you a nudge and you get up.  That might not sound particularly alarming, but the cardiologist had told us to look out for signs of angina, and when we asked her what they would be, this was the only symptom she could describe for a child as young as you who is not able to verbalise any pain they might be feeling.  We then went on to do the echo.  Because of your reaction to the ECG I had sent Daddy down to the shop to get something that might bribe you to lie still and let the consultant do her work.  He returned with chocolate buttons, which we slipped into your mouth one by one until she was finished!  You need to know that your brother and sister didn’t get chocolate until they were at least 5 years old, so I apologise in advance for any resentment that might build up over the coming years! 

The Cardiologist seemed pretty pleased with what she could see on the echo.  I noticed that the smallest measurement of your coronary arteries was now 1.8mm. The doctor said that it was about the same as last time.  I think they have actually shrunk a little further than before, but we are talking in fractions of mm so I guess it’s neither here nor there.  Once she had finished, there was a pause.  And then she looked at me and said “I want to do the angiogram.” Just like that.  I don’t know what I was expecting really – she had made her point clear at the last appointment, so why did I expect it to change?  Hope, I guess.  I told her that I have recently met with a world leading KD specialist from the US and attended a KD Symposium in London with esteemed professionals from the Kawasaki world.  I mentioned that a number of professionals had advised me that a cardiac catheter angiogram was not the most suitable procedure as it is invasive, and that there are other procedures that would be more appropriate for Freya, namely a CT angiogram.  Our doctor disagrees.  She feels that the resolution from a CT angiogram is not sufficient to show us what she is looking for – evidence of thrombus (layering of clotted blood inside the arteries) or stenosis (build up of scar tissue).  She dismissed some of the advice I have been given by the KD specialists because “they are not Cardiologists”, which is fair enough if not a little short-sighted.

After a few questions, I asked “Do we have a choice?” And her reply came as a shock.  She said that her advice is to perform a cardiac catheter angiogram, that it is the standard protocol for the hospital in relation to the aftercare of KD children, and that if I do not trust her advice then she would have real difficulty in continuing to be responsible for Freya’s care, giving her no option but to refer us to another hospital.  Wow! My way or the highway! And that’s where we are today – sent away with a decision to make.  And it feels like Hobson’s Choice.  Either we go ahead with the advice we have been given, against the advice of professionals who have seen more cases of this disease than our doctor will ever see, or start all over again with an unknown quantity – better the devil you know? Or is the grass greener?  I have no idea what we should do.  All I know is that I have seen this in my nightmares.  I have watched you go to sleep, left you in the hands of a surgeon, and waited.  And I have heard the words, “We are very sorry Mrs McBride, but the catheter caused a spasm in the coronary arteries, triggering a heart attack, and we sadly lost your daughter.”

I know in the scheme of things, this procedure is pretty insignificant to a cardiac unit.  The  little babies in the waiting room with that telltale scar down the centre of their chests is enough to give you some perspective over that.  But you are my baby, and I am scared.    Depending on how the procedure goes, you will be under general anaesthesia for at least an hour.  They will insert a thin tube (catheter) into your groin (most likely entry point, although this can differ) and feed it up into your heart to release contrast dye which will help them to see the insides of your coronary arteries.  That’s a pretty big deal for me and it doesn’t come without risks.

As I write this, I feel sick in my stomach, and my eyes are pooling with tears.  I cannot believe that we are going to have to hand you over to a surgeon again, watch you go to sleep again, and put our trust in strangers to get this right again.  Your last experience was deemed as necessary without alternative (you had a bone marrow aspiration to test your cells for Leukaemia before your diagnosis with Kawasaki Disease).  Although it was traumatic for us, we felt confident that it was necessary.  I don’t know why, but I just can’t seem to shake this gut feeling that this procedure is wrong.  Maybe I am just scared.  Who wouldn’t be.

All I can hope is that you are reading this, and laughing at how silly I was to be so worried.  “Jeez,mum! I’ve had twenty of these things now! I can’t believe you were so stressed that first time around!”  

We need to get a closer look to see what’s going on in there sweetpea. I just wish there was another way.

You can also follow Freya’s Story on Facebook and Twitter:

http://www.facebook.com/freyasstory and @freya_story 

The Paradox of Tolerance (or whether Mummy should ignore the nasty lady)

Today was just like any other Monday.  I look forward to Mondays, unlike most of the (working) population.  That is because I am currently on a career break and after a weekend with all three of my very lovely, but very lively, children, I quite like getting back to being just me and the little one (my 15-month old daughter).  Today was no exception, and to start the week off on the right foot I had arranged to meet a friend for a coffee and a catch up with our most recent family additions (I could have just said babies I guess, but why use one word when you can use half a dozen, eh?!)  We had agreed on 10:30 as a good time to meet, but partly because of my general levels of disorganisation and partly because of little buckles that are almost impossible to fasten and pram straps that eluded me beneath the packet of gummy bear paws my little one was clinging on to for dear life, I arrived ten minutes late.

The café was quiet, with just one other group of ladies sat down, and so I joined my friend and ordered myself a coffee.  I had waited all morning for that coffee, skipping a morning drink or breakfast at home so I might enjoy it all the more.  My little girl was pretty well behaved.  She is walking, and she likes to be on the move all the time, so she did well to sit in her pram and listen to me and my friend chatting away about our latest little dramas.  She babbled to her little friend, played with toys, and munched on a biscuit quite merrily.  My friend’s little one was getting tired, so I suggested we go for a walk and was preparing to leave when my daughter let out a high pitched squeal.  Just the one.  Now, I know that in the past she has earned herself quite the reputation of a screamer, but that was when she had just found her voice, was ready to move but not quite able, and could not express her frustration in any other way.  Nowadays my little girl can communicate much more effectively by pointing, using her albeit limited vocabulary, or the little bits of sign language she has cleverly learned at home, so the screaming doesn’t tend to feature.  It made an appearance today, just the once, but was in fairness loud enough to bring all the dogs from the neighbouring area.

Cue nearby ‘lady’ who demonstrably places her fingers in her ears, snaps her head round towards me with enough force to cause whiplash, screws her face up with anger and hisses loudly “OH FOR GOODNESS SAKE!” 

This is where the paradox of intolerance comes into full force.  This lady is clearly quite intolerant in character.  Intolerant of noise in general perhaps? Or just intolerant of children?  Maybe just intolerant of mothers daring to take a moment away from the kitchen sink to enjoy time with friends.  Perhaps her intolerance only extends to my daughter and her individual squeal.  The question is, should I tolerate her intolerance? Accept that she has an issue with said individual squeal and as much right to articulate her opinion with a rather venomous hiss?  You see, if I choose not to tolerate her intolerance, then in fact I too must accept the label.  It’s an interesting debate.  But whether we call ourselves tolerant or intolerant is kind of immaterial, because today Mummy chose not to ignore the nasty lady.  

Now to set the scene, you need to understand that I am not someone that seeks out confrontation.  I will defend myself and others if it is necessary and right to do so, but I am more likely to let something go than to start a fight.  I am not the girl that gets into rows with friends after one too many Pinot Grigio’s, neither am I the girl that hurls expletives at the person who just cut me up on the motorway.  I can be a little highly strung at times, and yes I admit to getting stressed out with everyday life sometimes, but I am no fishwife. I don’t know why I chose today to get into a public debate with this woman.  I think had she even muttered the same words under her breath I would have forgiven her for struggling with my daughter’s dulcet tone.  But there was something in her face that brought out the fight in me.  It was something bordering on contempt, and it was directed at my child.  

At first I felt shaken and in shock at the blatant manner in which the lady displayed her utter annoyance at the one sound my child had made.  I felt the tears building, and started to collect my things together.  I said aloud something along the lines of, “I cannot believe how rude that was!”  To which the lady responded that it was I who was rude, that I should appreciate that I was not the only person in the cafe and remarked “Why should anyone have to listen to that?!”  I said, through my tears, that I had never before been made to feel that way about being out with my child, to which she mocked, “Oh, don’t be so ridiculous!” and when I said that she had no idea how she had made me feel, she responded with more accusations that it was ridiculous, that I had been in there over an hour (I hadn’t), that I needed to take my child home and that it was obvious she needed to go to sleep!  I told her not to tell me what to do with my child, but she responded to confirm her right to tell me what to do with “I have been a mother!”.  One of her friends began to try and interject, tried to tell her she was wrong, but she continued to berate me for daring to have a child in the café for what she considered to be over an hour – not that it is of any consequence, but I arrived at 10:40, spent 5 minutes in this awful debate, went to the shop next door, walked to my friends’ and arrived at her house at 11:30 so I can’t have been in there for any longer than 30 minutes –  and that she did not see why she should have to be made to listen to my child‘s noise.  As I left, which I did because I just felt like running, I turned and said (rather churlishly), “I’m going home now, and when I get there I shall research just how long is considered socially acceptable for a mother to be allowed out in public with her baby.”

Shortly after I left, one of the friends of this ‘lady’ approached me outside (where I was sobbing with both sadness and anger).  She too had decided to leave, and although I felt bad that the ripples had been felt by others in the group, I was grateful that she made a stand and showed she had the grace that her friend is lacking.

To the lady who ruined my day;

I could call you names, my god I really want to! They’d be good ones too, but I’ll leave the name calling to the readers of this blog; I’m sure they’ll have a few choice words.  No, I won’t throw insults, but what I will say is this;

I commend you for whatever status you have achieved in life that has given you the right to choose who is allowed to be in your presence, even when in a public place.  That those around you should behave entirely as you expect them to, and that they should be the ones to leave when they don’t meet up to your expectations.  I personally live with the view that if you can’t take the heat, you should stay out of the kitchen.

I am envious of your perceived perfection.  Personally, I have learned to accept my own failings, to admit when I am wrong and to apologise when I can see somebody is hurt.  I guess empathy is something that cannot be learned.

You said you were a mother.  You may well have a daughter my age; I hope you treat her with more compassion. Do you have grandchildren? If you don’t, then I am sorry that you haven’t yet been granted that blessing.  If you do, I hope that you have the ability to love those dearest to you as much as you cannot tolerate those that are strangers.  I am truly sorry for whatever it was that froze your heart so hard that you could watch a mother cry in front of her child and feel no remorse.

Last year, my child stared Death in the face and although he let her be, he is always in the shadows.  There was a time we wondered if we would ever get to hear our daughter’s voice.  Today every sound she makes (yes, even that one) is like sweet music to us.  Seeing the bitter annoyance in your face today was difficult to bear.  I am sorry that displaying your intolerance and contempt was more important to you than a mother’s heart.

I am not sure what annoyed you most; the noise my child made or the fact that I allowed her to make it. Either way you judged me and my baby girl from one interaction, and I am really sorry that you have not had the pleasure of meeting us both under more amicable circumstances.  My daughter is the single most remarkable human being I know and I am pretty decent too.  I will devote most of my time with her teaching her to be graceful and kind always, to be tolerant of others, and to expect to be taken to task if she chooses to ignore that guidance.

Today I left.  I was bruised, ashamed, sad an in utter disbelief.  I hope that if nothing else, you have learned that there are consequences for bad behaviour, no matter what age you are.  Today I made a promise to myself and to my daughter; we will never be silenced or made to feel unwelcome for living.  We will celebrate being alive with every sound we possess; laughter, squeals, giggles and chatter! And we will never leave again.

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Everything changes

I have just returned home from handing back all my equipment to my employer as I embark on this new chapter in my life.  Funny how strange it felt handing back a laptop and a mobile phone that have only been locked away in the garage for the last year anyway.  I guess it felt somewhat symbolic of the final step towards (temporary) detachment from my career.  And just being there in the restaurant, drinking coffee like I used to every morning when I was there, felt quite surreal.  More so, because I had you by my side, and a rice cake in my hand instead of a notepad.  I was very aware, having just finished a year of maternity leave, that under normal circumstances I would have been there alone.  I would have been the one rushing off to that conference call, or heading off to a meeting.  I have no regrets, however. Non, je ne regrette rien.   I consider myself incredibly lucky to have the chance to take some additional time to concentrate on your immediate needs, and to regain some of the time we lost last year.  With your brother and sister I would have missed so much of what I get to see every day with you sweetheart.  Watching you develop and grow is a source of constant amazement for me, and I don’t think I will ever tire of spending time with you.

The effects of the last year were not just felt by me.  I’m sure they were felt by you, but I have no idea how because you can’t tell me yet.  I hope that you don’t remember any of it. That all you remember is how we used to go on the train for days out, or for coffee and cake and to the park.  I won’t ever forget that the backdrop for all of those things was an imposing hospital looming behind us.  But hopefully you will just remember feeding the ducks in that nice park, and you won’t have noticed the tears in my eyes that came because I was saddened by the memories that the park evoked.  One day we will be able to go to Weston Park and sit on a bench and let the warm sunlight wash over us as though it were sent right from Heaven.  We will lie on a blanket and make pictures in the clouds, feed the birds and the ducks and watch the fish in their shady hiding place under the little bridge.  But we will always make our place on the other side of that park so as to spare the mums who, like me last year, watched other families enjoying the summer through the windows of a hospital cubicle.  The nurses thought they were helping me by moving me to a room with a view. The brick wall which was our previous view had been quite oppressive, but no more so than watching mums play with their babies in the shade of the trees.

Back then I thought I did a pretty good job of protecting your brother and sister.  We told them that you had a cold but needed the nurses to help get you better because you were too young for Calpol.  It was a white lie. Quite a big one, but white nevertheless.  And you did test positive for Rhinovirus in that first week, so it seemed like a plausible excuse.  We also kept your siblings from the hospital.  They visited you on your last day at the local hospital (after a week), and then maybe once or twice when we moved to the Children’s Hospital.  We didn’t tell them when you were moved to Leeds, so they didn’t see us when I was in my darkest place.  What I didn’t know was that our attempts to protect them probably made their anxiety worse.  I underestimated Eliza.  She has told me since  that she was very worried that I would be coming home without her baby sister.  She wasn’t stupid; she knew something must be pretty wrong and that a common cold wouldn’t need her mum and sister to be away from them for as long as we were.  So she actually worried more, because she knew it had to be bad for us to want to hide it from her.  And Fin? Well he went off the rails a bit. His behaviour at school hit an all time low, and the effects of last year have only just begun to wear off with a huge amount of support from the school.  He was the baby of the family before you came along, you see.  He was excited about getting a baby sister (although I do think he might have secretly been hoping for a brother to play Minecraft with!), but suddenly not being the baby anymore is quite a lot for any child to get used to.  And then just 7 weeks after we brought you home, just as he was probably getting used to you being around, he lost you and me for a while.  6 weeks.  That’s a long time in a 5-year old’s life.  Because we played down your illness so much, he couldn’t understand why his Mum would leave him.  He thought that I had chosen you over him, and his little head wasn’t quite ready to work that one out.  His self-esteem took a huge knock, and he became very insecure for a while.  No need to feel any guilt about that though, not you or I.  I made the decision to protect them for all the right reasons and I wasn’t ready to tell them that they might lose their little sister.  They didn’t need that worry.  And by the time you read this, you will have seen that none of this had a lasting effect on them; they probably won’t even remember it when you’re old enough to be reading this.

I am not the same person that I was before I had you.  I might even go as far as saying that you are lucky that this happened to you.  You have had the very best of me this last year, and I dare say  that you will continue to get the best of me for as long as we are both here.  I have not taken a single moment with you for granted, and because of that I think I am more patient with you than I might have been with the others. I am most definitely more intuitive about your needs. Perhaps some of  that is due to age (I was 40 when I had you), or experience with having done it twice before.  But I think most of it is the incredible bond that we have developed by spending so much time together since you came into the world.  Because I am scared of you getting very poorly again (I’ll tell you one day about chicken pox and the medication that you take), I have kept you away from large groups of children in the main.  I don’t take you to baby and toddler groups or play areas where the risk of infection is a constant worry for me.  I don’t wrap you up in cotton wool either – rather than avoid all situations, I tend to weigh up the situation based on my anxieties and I guess you could call it damage limitation, rather than complete avoidance.  That will become easier towards the end of this year (2016) when you have received the MMR, Chicken Pox and Flu vaccines.  Until then, we will stay together in our little bubble where we see just the right amount of people to allow you to build relationships with other children, but not enough for me to worry about you becoming sick.  I know I cannot protect you from everything, but I have to protect you from what I see as a risk, no matter how small that risk might be.  I cannot bear the thought of seeing you that sick again, Peanut.

My social circle is a little smaller than it used to be too.  There are lots of reasons for that. I’ve become very immersed in a Kawabubble over the last year and I don’t have an awful lot of time and energy for much else.  Most of my attention is on you, and getting you through the next challenges that the effects of KD will throw at us.  A lot of my attention has turned to our little family; this experience has made my family much more important to me than I think I allowed it to be before.  It’s also very difficult for me to spend time with people who cannot relate to our situation.  I don’t want constant sympathy, but I want compassion and understanding.  People that think that everything is ok now because I wear a big smile, and you look so amazing, don’t know me very well.  They don’t know how much I still struggle to come to terms with what has happened to you, and what the impact of the disease will have on your future.  70% of children in your situation will have to have invasive treatment later in life – a heart bypass, or a stent perhaps.  100% of children who have suffered coronary aneurysms as a result of KD will suffer myocarditis (inflammation of the heart muscle) which causes degeneration or death of heart muscle cells.  I don’t know how to compute the possibility that my child may show symptoms of myocardial infarction (a heart attack).  Just doesn’t seem real.  Later this year, whether it be through cardiac catheter angiogram or CT angiogram, we should get a closer look at the cause of the remodelling of your coronaries to better understand what the future may hold.  Right now I have to take the cues from your outward appearance and development, and you look mighty fine to me.  It’s very confusing though.  I’m still not sure if there is any chance that you could have complications today, tomorrow, next week.  I guess we have to take each day as it comes.

I don’t want people to think that I am a victim in all of this.  That I don’t want to let go of it.  In fairness, I can’t let go.  Partly because you are still affected by the disease and will be for many years to come. Partly because I feel I have gained a purpose; I can help make things better for other sufferers of the disease, whether it be through raising awareness to help speed up diagnosis, or by providing useful information to other parents going through this.  Kawasaki Disease is now a very big part of my life, of our lives, and it isn’t likely to go away.  Perhaps over time it will become a smaller part of life for all of us, but I don’t think I will ever stop talking about it to anyone who will listen (and a few who don’t!).  It’s too important for that.  I am in contact with parents and grandparents who have seen this illness first hand, some who have suffered the worst consequence of all.  For them, I will always do what I can to help change the future of Kawasaki Disease.

Having a child diagnosed with a rare, or little known, disease is life-changing for parent and child.  And when there is no known cause you never stop asking yourself ‘Why?’.  Why did this happen to you? I hope we find out one day.  I believe the specialists are getting closer – it’s just that research costs money and KD research is severely underfunded.  They believe they have identified the combination of genes that make a child with KD more susceptible to the disease.  And they are pretty certain that they are looking for an infectious/toxic agent that completes the perfect KD storm.  I desire two things; that we can gain a greater understanding of your condition so we might have a better handle on what might be around the corner, and that the mystery of Kawasaki Disease is unravelled in our lifetime so we might gain some closure.  Solving that mystery will also result in a test for the disease so that children might be diagnosed more quickly, and better treatments that further improve the possible outcomes for children with the disease.

My whole perspective on life has changed.  Things I was afraid of before no longer occupy any space in my mind.  I no longer sweat the small stuff.  I have a lot more compassion for others – through our journey I have come into contact with so many parents who have suffered challenges with their children, KD or otherwise.  Before this, I was ignorant to all that – it was happening to someone else and that didn’t matter to me.  Now it does.  The only fear I have now is of losing you, or losing any of the people that I love dearly.  I will not allow people to hurt me anymore, because nothing can come close to the pain I have felt over the last year with you.  None of that matters.  Yes, everything has changed. Our lives are different than they would have been if KD hadn’t crept in.  But it’s not all bad. It’s different, but not bad.

Sometimes I am scared, often I am sad.  I worry a lot about the future for our little family.  But above all that, you will grow up knowing that you are loved and cherished more than you could ever fathom.  You are a special little girl who will achieve great things one day, and I will be there by your side with every step you take towards greatness.

I love you, Peanut. 

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The World keeps Turning

What’s in a date? According to the dictionary, a date is “the day of the month or year as specified by a number.” It’s that simple.  And yet dates mean so much to so many people.  Every day of every year marks something significant in somebody’s life; a birth, a death, a wedding, a break-up, the anniversary of good and bad events that have occurred in a lifetime.

For us, today brings mixed emotions.  It would have been almost impossible not to face today with some sadness at the memories of this day last year when we watched our 7-week old daughter slip away from us with the fear that we may not ever get her back.  It is the day she became critically ill, and marks the beginning of our journey with Kawasaki Disease; Freya’s Story.   It feels somewhat surreal to be sat here today, putting the washing on, clearing up the aftermath of the children’s lunch, normal everyday things that a parent has to get on with.  A year ago today our lives were changed forever.  Changed in so many ways, some bad some good.  How did last year change me for the worse? Well, for one it altered my perspective on this thing we call life.  We all believe we have the right to live our lives how we choose, and rarely stop to consider the consequences of the actions that we take.  Being faced with the possibility that your child might actually die turns your entire belief system on it’s head.  I had never considered my own mortality before then – why would you? You just coast through this life taking it for granted that it is yours for as long as you want it.  But there are much stronger forces at work than any of us are able to prepare ourselves for, or protect ourselves against.  People get sick.  Kids get sick.  This world is full of illnesses and diseases that affect everyone else, and we read stories about them in the News or on Social Media, and think “poor them”, but we rarely stop to consider that the trials we see other people facing from a distance may land themselves on our own doorsteps one day.

I had never felt so much anxiety about the brevity and uncertainty of life before the events of last year.  Now I find myself living a confused life, where on the one hand I wish to grasp it with everything I have whilst I have it – make memories, move mountains – and on the other hand I face it with a fear of the unknown, and a desire to stop time so that we might be able to let go of that fear, just for one day.  Wherever I walk I see beauty in everything, magnified like I’m seeing through the wondrous eyes of a child, but out of the corner of my eye I can always see a shadow lurking and I imagine that the Grim Reaper is sharing every moment with us.  I am reminded of that movie, Final Destination; you can’t cheat death, can you?

But, the 31st May is just a date.  It doesn’t really matter what the date was, Freya got sick.  It doesn’t matter what date we got our diagnosis, Freya had Kawasaki Disease.  It doesn’t matter what date they told us her heart was damaged, Freya’s heart suffered.  Even so, it is hard not to see these dates as milestones, those first hurdles you have to get over after any loss.  And I know I should be grateful that we didn’t have to suffer true loss, but this is still part of a grieving process, and I do grieve for the loss of that perfectly healthy, normal little girl that I was holding in my arms on the 30th May 2015 and all of the 50 days before it.  Some would say I am ungrateful, that I should get over it already.  I don’t blame them if they haven’t been through something like this.  And it isn’t like I don’t want to let it go.  Of course I do – that’s why I see a counsellor every week to help me with the trauma of the last year (as well as a few other troublesome things).  If anyone thinks that I want to be stuck in this perpetual limbo between sadness and joy, that I get any gratification from feeling tears prick at my eyes every time my youngest daughter shows me just how special she is, is mistaken.  I want to be able to move forward, forget the last year, make plans for the wonderful future that I promised myself for my family.  But KD doesn’t let you do that.  It doesn’t just leave, like a cold, or a sore throat; KD leaves permanent scars, physically and metaphorically.

I will allow myself to feel what I feel on these dates, these first milestones.  The day of her diagnosis (12th June) is likely to bring up a lot of the same emotions.  Hopefully I will be better prepared and can plan to do something that will change the memory of that day.  I had hoped to do something today that would give me a new memory of the 31st May, but the awful weather and the restrictions I place upon Freya’s indoor activities (I don’t want her in an indoor play area, during half term, in chicken pox season!) put a stop to that notion. So instead I have tried to distract myself with the children and the chores.  But I sat for a moment and watched the raindrops run down the window, an image that my eyes immediately chose to mimic, and it has left me feeling wretched.  Out there new memories are being made and new anniversaries created and the world just keeps on turning.  And I keep breathing in and out, and whispering to my heart, “It will get better one day.”

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Stealing Joy

A year ago, on this very Saturday (though it was the 30th May), we had our last day of ‘normal’.  My parents had visited from Kent to see their new granddaughter.  Freya was 7 weeks old and we went on our first family day out since Freya was born, to a local farm.  The sun was shining; it was a glorious day that told us that summer was on the horizon.  The unexpected baby we had thought would ruin everything was proving to be our best ‘mishap’ to date. We were smugly happy with our perfect little life. We watched our older children play in the sunshine, whilst their baby sister slept in her pram, and it was like we had our own little slice of heaven right there.

That evening my husband and I went out for dinner with my parents, and my mother-in-law sat home with the children.  It was a pleasant evening, and when we returned home there was nothing to report, other than the fact that Freya hadn’t wanted all of her bedtime bottle.  It was unusual, but not exactly a serious situation; perhaps she was too tired, too full, or maybe there were some teeth on the way.

The next morning Freya would wake for her morning feed, around 6am.  Except she was so snuffly and bunged up that she just couldn’t take the bottle and gave up pretty quickly.  I was concerned, because she had gone for so long without a feed through the night (I remember celebrating our first proper night’s sleep), but I put it down to the fact that her nose was just too blocked up to let her feed.  At around 9am, I made another bottle and tried again, but just as before she couldn’t manage to take the feed, and fell asleep in my arms from the effort.  “She’ll feed when she’s hungry,” I told myself, and put her down in her bouncy chair.  A couple of hours passed, and I began to get quite fretful that she hadn’t fed since the previous day, so I decided to wake her and try again.   It was about 11am.  When I went to get her out of the chair, I noticed how hot she felt and so I took her temperature with a digital thermometer.  38.3F.  She had a fever.  I remained calm, I mean kids do get sick, and she has an older brother and sister who come into contact with all kinds of germs at school.  She had been snuffly for a couple of days; she had probably picked up a bit of a cold.  So I sent my husband to Mothercare to buy a medicine dispensing dummy (if you haven’t seen these, they are fantastic for getting medicine into a little baby).  Meanwhile I hunted out the Calpol. From 2 months.  That’s what it says on the front of the box.  Many would have given the medicine; I mean, she was only a week away from 2 months, what harm could it do? But for some reason, I felt like I couldn’t take that chance.  Unsure what to do, I called the out of hours GP service (it was a Sunday, remember).

The doctor called us back pretty quickly, and asked me to explain what symptoms Freya had.  She wasn’t feeding.  She was sleepy (but she was a newborn baby, and sleep was pretty much all she did).  She had a fever.  And come to think of it, her little tummy was moving up and down quite a bit – she was working hard at breathing.  The doctor said we should take her to A&E, as it was unusual for such a young baby to have a fever for no reason.  And that is what we did.

I’m guessing it was around 3pm in the afternoon by the time we were seen at the local hospital.   I don’t remember what was said by the nurse/doctor that checked Freya over.  I remember telling them that I had tested positive for Group B Strep during the pregnancy, and that although I was treated with IV antibiotics during labour, it was pretty tight timing wise.  I was on high alert for late onset GBS infection in Freya, and I knew that if she had contracted GBS during labour, there was a chance that she could develop meningitis.  They did too.  So they sent us up to the children’s observation unit with a view to keeping her in overnight for observation.

That part is all a bit of a blur too.  I remember sitting in the waiting area, Freya, burning up, lying across my knee.  She was laid on some paper towels whilst my husband and I attempted to catch a wee in a kidney dish. We went into a small room, and a doctor came to check her over.  I can’t remember what he said, or why he felt she should be admitted to the Children’s Ward.  I don’t remember when they put the IV antibiotics in.  I just remember that’s what happened.  We were admitted to a private room, and my husband went home to our older kids.  I sat in a chair in the corner of the room with Freya sleeping in my arms.  She was connected by the IV to a machine that dispensed the medicine, and every time I moved the machine would set off alarming, and the nurses would come in.  I think I stayed there until the medicine had all been delivered to Freya’s tiny, hot little body, and then I decided we both needed to get some proper sleep.  By this time, it was quite late.  It may even have been the early hours of the morning.  The nurses came in every hour to complete their observations, and then I put Freya in the cot so she might be cooler, and I might manage some sleep in the chair.

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As I laid her down, I noticed that all familiar smell – she had a dirty nappy.  “The poor thing just needs to sleep, I’ll not disturb her” I told myself,  and I went back to my chair in the corner.  I’m not sure how long I sat there trying to get to sleep before my conscience got the better of me and I decided that I could not leave her in a dirty nappy. Disturb her or not, I needed to change her.  And it was as I lifted her vest that I noticed a pin-prick rash over her torso that I could just make out in the dim light.  I think it was about 5am, because it was starting to get light outside and I could hear the birds singing outside of our window.  Were my eyes playing tricks on me in the half light?  I was so tired.  I turned on the light and went to get a better look, but still in the fluorescent lights I couldn’t work out what I was seeing.  I walked over to the window and opened the curtains, and in that light I could see that this wasn’t an illusion.  Freya was covered in a rash.  I called the nurse who came to have a look, and we both spent so much time scrutinising that rash that I can’t remember to this day if it blanched under a glass or not.  The nurse called the on duty doctor, and by the time he arrived (which wasn’t long at all) the rash had spread down Freya’s legs and across her arms.

It was in that moment, watching the doctor silently complete his review of my baby, that I noticed the atmosphere change.  They called a consultant who joined the doctor in his silent inspection. It was very calm, but the air felt thick. I thought Freya was sleeping.  In fact she was unresponsive.  I remember hearing words like “shutting down”, and the doctors started to wheel Freya in her cot into another room.  It was the High Dependency Unit (HDU).  They delivered fluid boluses to Freya by stealth.  At 6am I called my husband “Gavin, I think you need to come quick.”

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If you’ve followed Freya’s Story, you will know what happened next.  You’ll know that she became stable, but did not get any better for the next week, despite numerous antibiotics.  Her fever would not come down with antipyretics, and when her fever spiked (above 40 at times), so her heart rate would soar, and her oxygen levels would plummet.  She was very sick, yet it would take 13 days, lots of medication and countless tests before a diagnosis of atypical Kawasaki Disease would be reached.  Three hospitals would be responsible for her care during a six week incarceration (!) which began on the 31st May 2015.

I want to allow myself to believe all the motivational cliches about things happening for a reason, about how far we have come, about how lucky we are to have Freya here in our lives and how we should count our blessings.  But today that all feels like bullshit.  Today I find myself in mourning for normal.  I want to go back to that day at Cannon Hall Farm, where everything was blissful and beautiful and picture-book perfect, and somehow re-write history.  Today marks the anniversary of the last day we knew what normal was.  I wish that day were Groundhog Day and we could live it over and over and over so that the 31st May would never come.

I don’t want to wallow in the misery of the last year, believe me.  I want to be thankful for what we have, and cherish every moment.  I want to believe that this happened to us for a reason, that we will all be better people for it, that I will look back on all this one day and laugh at how wrapped up I was.  I will allow that to come, I’m sure (and the counsellor will give me a good kick up the arse if I don’t!), but for now I am allowing myself some wallow-time.  I have every right to feel sorrow, and to mourn the loss of the life I planned to have.  I have every right to feel angry that Kawasaki Disease came into my daughter’s life and robbed her of her health so soon after she arrived in this world.  I have every right to feel angry that the world keeps turning, and that people are moving on even though I seem to be stuck in this perpetual Kawahell.  Today, I hate Kawasaki Disease.  It broke my baby’s heart, and it broke mine too.

Most of all, I hate that this disease took away some of the joy that I ought to feel from moments like this…

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The Gift that Keeps on Giving…

“Mum, remember when you thought you might not get to see me grow up? Bet you feel silly now?!”

They say that you shouldn’t wish for your children to grow up, that you should will them to slow down because in the blink of an eye your once tiny baby is all big and independent and doing things you never thought possible.  Well, in a way Peanut that is true.  But as bad as it may sound, there’s a huge part of me wanting you to hurry up! Hurry up and talk, hurry up and walk, hurry up and grow big and strong so that I can be sure to have had the chance to see it all in case it is taken away from me.  I’m scared.  Scared that I won’t get the chance to know you like I should. Scared that Kawasaki Disease has not finished with you just yet.

Today we took you to the hospital for your cardiology follow-up appointment.  You were last seen three months ago, where the cardiologist remarked that the speed of which your coronary arteries have been remodelling is concerning, and they would like to carry out an angiogram to take a closer look.  I knew she was referring to possible stenosis; that the reduction in the internal diameter of your coronaries might not be healthy, and is more likely to be the result of a build up of scar tissue or layered blood clots that have effected  the change.  But I have read that stenosis can take decades to cause any ill effects, and as such I felt it would be prudent to give you more time.  More time to grow, so that less invasive procedures might tell them what they want to know.  Apparently an MRI or CT scan isn’t as effective in giving a true picture in such a young child, and an angiogram is the only option that will show them what is really going on in that little heart of yours.  I asked the opinion of 3 experts, all of whom concurred with my view that there would be no harm in waiting, perhaps even up to a year, and carrying out a less invasive procedure.  I put that question to your cardiologist, but she seemed pretty keen on pushing forward and continued to voice a preference for carrying out an angiogram a year post-diagnosis; June.

I decided to wait until your next appointment to understand more fully why the consultant was so eager to press on.  That appointment was today.

We arrived at the hospital just in time for your appointment, and were sent straight down the corridor for an ECG.  It took the cardiographer 20 minutes to get a reading from your heart because you were wriggling so much! We had to bribe you with ‘sweets’ (little fruit things that we call sweets because they’re as close as we will let you get to confectionary at your young age!) to get you to sit still for long enough! You’re not as easy a patient as you were last year, this time pulling off the electrodes and yanking on the wires, but he got there in the end!  Nothing was said about the result, and I am guessing that means that, as usual, the ECG showed normal heart function.  Next it was time to weigh and measure you (you weigh 8.46kg and are 74cm in height), and then you were called into the examination room.

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It wasn’t your cardiologist that called us in; it was a registrar.  She introduced herself and asked if we had any concerns since the last appointment.  We had none.  She then asked us to take you over to the bed so she could perform an echocardiogram, and I asked if we were going to see your doctor today.  She said that we would, and that she was just with another patient.  I guess they were helping each other out so they might all finish the day at a reasonable time.

Surprisingly, you laid quite still for the echo.  Okay, so you had to be given a probe of your own because you do like to take matters into your own hands, but she got there (with the help of a bottle of milk!).  She didn’t say much, but as usual I clocked the numbers appearing on the bottom of the screen and was able to catch that your LCA (left coronary artery – the one that has caused the biggest worry on this journey so far) measured 2.8mm.  Was that bigger than the last time? I seem to remember it being closer to 2mm, but what’s a fraction of a mm between friends, eh?  Your consultant then entered the room, and continued the appointment with the registrar present.

She looked at the screen, and remarked that your RCA (right coronary artery) looked almost normal.  She seemed happy with function and blood flow.  It seemed that she was about to suggest a routine follow-up appointment and gave the impression that it would be a longer period next time, but the registrar mentioned that an angiogram was mentioned at the last appointment. Ah yes, remarked the consultant. I reminded her that she was considering the procedure because she was concerned about the extensive remodelling that your arteries have undergone in such a short space of time.  Ah yes, she remarked, and commented that at worst, the diameter had measured 8mm.  I corrected her.  Unless I missed something along the way, the largest measurement was 5.2mm.  Whilst small in comparison to some children affected by this disease, they were more than 5 times normal size and in a baby as young as you were was considered significant and cause for serious concern.

I told the consultant that I had a few questions, and pulled out my notebook (I know! I do like to make notes!)  The first question I asked was why she felt it so important to carry out a risky, invasive procedure now? What benefit could it have? What was her thought process, and what were her concerns?  I had thought that she might concede with a “perhaps we ought to wait” kind of statement.  But instead she told me that she thinks it is highly likely that the remodelling has come about as a result of stenosis – anything other than that would be nothing short of a miracle.  I asked if there wasn’t a chance that the remodelling has come about as a result of the aggressive treatment you received to stop the disease in it’s tracks (you received steroids and a dose of Infliximab when two doses of IVIG proved ineffective).  She agreed that was possible, but didn’t seem convinced.  An MRI/CT would be effective in providing a better picture of aneurysms, but in a child as young as you they would not be as effective in showing stenosis.  I asked what would be gained by doing it now? Stenosis can take decades to develop before the arteries might close enough to prevent blood flow.  And if the angiogram did show evidence of stenosis, how would that change the treatment plan? And then she used words that I had not considered would be used in your lifetime. Stent.  Bypass surgery.

I guess I knew what her concerns were before I asked them.  I mean, she isn’t likely to put you through an unnecessary procedure, is she! I told her that I would prefer to wait, but that if she felt that waiting would put you at risk I would trust her judgement.  She said that she would really like to get a look, and it dawned on me that you are quite the case of interest.  One of the youngest cases to be handled, aggressively treated, showing almost too-good-to-be-true recovery.  Yes, of course they would like to get a look.  I said I appreciated the medical interest in understanding what has been happening with your heart, but that you are not a specimen, you are my baby.  She reluctantly agreed to see you again in three months, and noted that whilst there was a great deal to be learned from you, that she would not consider the procedure for medical knowledge alone.   She agreed to discuss your case with at the next MDT meeting (multi-disciplinary team) with a view to negotiating with me further then.  She has already discussed your case with the surgeon, and they too believe it would be prudent to do an angiogram sooner rather than later.  That said, she still agreed to give us another 3 months (which will end up being more if the waiting list is as long as I expect), on the strict proviso that if we see any evidence of angina we are to contact her.

Let me take a moment to tell you about the symptoms of angina;

  • Chest pain or discomfort (not sure how you will tell me about that!)
  • Pain in your arms, neck, shoulder or back accompanying chest pain (ditto!)
  • Nausea (won’t generally know that one until you actually throw up!)
  • Fatigue (hmm, should I be concerned that you sleep through the night?)
  • Shortness of breath (you don’t get above a fast crawl yet, and I’ve not seen you panting!)
  • Sweating (nope)
  • Dizziness (again, how would I know?)

So apparently the only way I might be able to tell if you are suffering with angina would be if you are playing one minute, and then go quiet, and maybe glaze over for a moment.  This could be interesting:/

It would seem we are not yet out of the woods, my darling.  Just when I thought that there could be a future where KD becomes nothing but a distant memory, here it is threatening to place a dark cloud over the years to come.  The only thing I can hold onto is hope, but that is so hard when I feel like I am fighting a losing battle with this disease.  I have no control over it, none.  It came, it messed you up real bad, and it just won’t leave us alone.  I know there is a chance that they could do the angiogram and discover that you are indeed the miracle I had started to believe in.  But I also fear the worst.  And I know that there are far more complicated procedures happening to very sick babies, with huge success, every single minute of every single day.  But they are not happening to my baby.  And I so want to bury my head in the sand like an ostrich and pretend that this isn’t our life, that this isn’t your life.  Today for the very first time I saw ahead of me just how complicated your life might be, and it has made me incredibly sad.

And because with this disease the hits just seem to keep on coming, I returned home to a voicemail from your GP.  We were given the green light to crack on with catching you up on the routine immunisations, and also later given the go ahead to give you the MMR vaccine.  It was unclear, however, what timing/order the Immunologist felt these should be given in.  You’ve had the 8 and 12 week immunisations now, and I was hoping that we might be able to intersperse them with the MMR, Chicken Pox and Flu vaccines rather than wait any longer than necessary.  This family needs a holiday far, far away from here.

Sadly, the advice was more disappointing than I had anticipated.  The instruction has been to wait until after the final routine vaccinations have been given (around June).  Because you are a unique case, they are not comfortable in progressing to the remaining vaccines until 3 months after that.  So at best, you will get the MMR in September.  No mention has been made of the Chicken Pox or Flu vaccines, but I can only guess they will want to wait longer for those too.  I just wanted us to do some normal stuff, Freya.  Mix with other kids, in places where normal kids go.  Jump on a plane to somewhere warm where we can forget all about this for a time.  I am sick of being restricted by my fear, but I cannot knowingly expose you to illnesses that have the ability to take more from you than KD already has.  I’m talking about Reye’s.  And yes, I know it’s rare, and it hasn’t yet been linked to low doses of aspirin, but it’s a risk I cannot bring myself to take.  What were the odds of you getting KD at 7 weeks old?? Exactly.

I’m sorry, my tone is getting quite unpleasant isn’t it? And I am sorry for burdening you with this worry.  Almost a year ago I asked a God I don’t believe in to prove the doctors wrong.  If he’s listening, this is his chance to show me what he can do.  I can only hope that if you are reading this, it means that you have already proven yourself to be the miracle that we all hope you will be.  I don’t want to live in a world without you in it.

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A Family Affair

Yesterday it was the annual UK National Kawasaki Syndrome Support Group (KSSG) Family Day; an event put on by the founders of the Group to provide the opportunity for families to come together to share the one thing that we all have in common; our lives have been touched (more like whacked) by Kawasaki Disease.

Freya and I, and my eldest daughter Eliza, travelled down to Coventry to attend the event; our first since Freya’s diagnosis.  When the last event took place, Freya was just 22 days old and we were blissfully unaware of what would unfold a few weeks after that.  At that point, we hadn’t even heard of the disease with the bizarre name that, whilst considered rare, is the leading cause of acquired heart disease in children in the developed world.  And why would I have needed to know about it anyway? That kind of stuff didn’t happen to us; it happened to other people.  It happened to the people that were at that family day whilst I sat at home gazing into the eyes of my beautiful, healthy, newborn baby.  Wasn’t I lucky…

Who knew that one day, a little over a year after Freya was born, I would be attending an event with families affected by this little known disease.

Freya was diagnosed on Friday 12th June 2015.  She was 63 days old.  On a Friday 9 weeks prior, Freya was born in our local hospital.  At 7 weeks, she developed symptoms of meningitis and went into septic shock.  13 days later an echocardiogram would secure a diagnosis of atypical Kawasaki Disease, after 2-weeks of drugs, tests and invasive procedures failed to provide any answers.  Once we got the diagnosis for Freya – after the initial “Oh thank God it’s that! Never heard of that so it can’t be that bad!” – we took to the internet, and the mystery of Kawasaki Disease began to unravel, along with an understanding of the severity of the disease and it’s impact on the affected child.  Even when they told us that Freya’s coronary arteries (the ones that supply blood to and from the heart) were severely dilated, I still didn’t appreciate the long term effect that this would have.  I thought it was a side effect of the disease, that they would give her medicine, and that it would all go back to normal in a few days once the meds had their chance to work…

Luckily, this is true for the majority of children.  Approximately 75% of children diagnosed with Kawasaki Disease will manage to escape any coronary involvement (although evidence is suggesting that these children do not escape all potential lasting effects from this disease).  With fast treatment, the risk of prolonged damage to the heart is reduced from 25% of cases to around 6%.  Freya received the treatment, but the damage to her heart continued to worsen.  A second dose of the treatment didn’t stop the inflammation caused by the disease either, and so she was prescribed an infusion of a product called Infliximab made from the antibodies of mice that seemed to do the trick.  Combined with the other treatment – the previously administered IVIG doses, high dose aspirin and intravenous steroids – the disease appeared to be stopped in its tracks, and it was time to focus on maintaining her condition.  The rest has been documented in my blog posts along the way, and to cut a long story short, suffice it to say that Freya’s coronaries have started to remodel to within normal range.  She continues to take aspirin daily for it’s anti-platelet effects, and she will undergo a procedure later (possibly June this year) to ascertain the cause of the remodelling (healthy or otherwise).  But back to the main point of this blog post today…

The Family Day

I don’t know how many families attended, but the room was buzzing with the chatter of the families who did attend from the moment I arrived.  I was greeted by one of the founders of the Group, Sue, who came and gave me a big hug and couldn’t wait to get a cuddle from Freya – they had met some months before and I joked that Sue was like a ‘baby whisperer’ as I hadn’t seen Freya quite so happy to have a cuddle before!

I took my eldest daughter too (my middle child, Finlay, decided that his friend’s laser birthday party was too good an opportunity to miss so he stated at home!)  Looking around the room, I saw faces that were familiar from the profile pictures that you see popping up in the Support Group Facebook pages from time to time.  I’m not going to name individuals because I don’t have their permission to do so, but it was lovely to chat to people who I’ve communicated with on different KSSG Facebook threads, as well as meet new people too.  Some of the families had been to previous family days, for others it was there first time like me.  Talking to the parents around the room, you got a real sense that this is something that sticks with you for a long time.  Diagnosis dates ranged from months ago to years ago.  I spoke to one gentleman who had to face this disease with his child 15 years ago.  That’s before the internet had become as useful and saturated with information as it is now (and that’s saying something, because even now there is a dearth of useful information about the disease).  We all shared our stories, all different but with some similarities.  It felt good not to know that we are not alone.

As well as the informal chatter amongst parents, and the new friendships being formed amongst the children, some useful information was shared in relation to genetic research, and some developments about future projects to change the face of Kawasaki Disease in our country (also not for me to share here, but I am sure things will begin to unfold soon).  The day seemed to whizz by in a flash.

The people who have been supported by the KSSG will have joined the Group at varying stages of their journey with Kawasaki Disease.  Some have been members for years, others recently joined, like me.  And everyone’s circumstances are different; some will have needed a lot of support from the Group, for others just the knowledge that there is someone there if they need them is enough.  Those that have been dealing with KD for a number of years will have seen the group evolve over the last 20 years, will perhaps have seen new developments in the world of KD.  For people like me, joining less than a year ago, much of those developments will already have happened before our time, and so we only know what we know now.  And I’m sure there is so much more available to us now than there has been in previous years, but I think one thing that all of us in the Kawasaki family agree on is that there is still so much more that needs to be done to put Kawasaki Disease on the radar of medical professionals and ordinary people like you and me.  There is most definitely an appetite for change, and there are plenty of people who are willing to support that change too.  I imagine most, if not all of us, left yesterday feeling pretty optimistic about the future of the disease.

One thing that was noted was that looking around the room, you could not tell who was a sufferer and who wasn’t.  Eliza (my eldest) spent a lot of the day chatting with a couple of lads around her age.  I believe both boys have suffered with Kawasaki Disease and deal with the after effects of that illness today, but Eliza didn’t know it.  They didn’t talk about it; they talked about ‘normal’ stuff – music and school and what they like to get up to in their spare time.  Children with multiple giant coronary aneurysms ran around that Rugby Club alongside children that had never had a day’s illness in their lives.  These kids are remarkable.  They face regular medical check-ups, uncertainty about what lies ahead, some have had to stop doing things that they loved to do before all of this happened to them.  And yet you wouldn’t know it to look at them; they’re made of strong stuff.

And Freya? Well, she crawled around happy as a pig in muck all day! And she was clearly inspired by the other children, as today she decided that she would take her first unaided steps and prove that she too was made of the same strong stuff as those other kids who share something in common with our little girl.  Not Kawasaki Disease.  That’s a given.  They share the fact that they are extraordinary, in more ways than one.

Thank you to the KSSG for putting on the event, and to those that helped them to pull it all together.  I didn’t take many pictures during the day as I was too busy talking (there’s a shock, lol!), so here is one of my daughter Eliza with the face paint that she did not want to take off!

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