freyasstory

Ten Things I Hate About You

Posted on by Bluemama

Before we were introduced, I hadn’t really had any real drama in my life. The biggest thing I had to worry about was what we were going to have for tea, or whether I’d overindulged too much to fit into that dress at the weekend. And then you came along, and everything changed. Everything. And even when we met, i didn’t appreciate the impact you would have on my life, and everyone in it. Because what at first seemed like something that would have an effect on just one of my family, very soon demonstrated that it’s effects were more far-reaching than the immediate victim. Your tentacles reached across to touch all of my dear little family, and slithered into every part of my life. And whilst I try hard not to forget the good that came from meeting you, I refuse to accept that you gave those gifts to me. You did not effect those positive changes – those changes came from the strength that I managed to produce in spite of you, not because of you. And so let me tell you, Kawasaki Disease, all the things I hate about you.

I hate that you stole perfect from me. Because that is what you did. You stole the most perfect joy I had ever felt in my life up to the point that my daughter was born. When I look back now to those blissful weeks with my newborn baby, they are over-shadowed by the unseen threat of you. When I look at the few photographs I have of those precious weeks, I can recall the pure contentment that I felt whilst I drank in every inch of my perfect little girl. But there’s something else now when I look back as I find myself searching for signs of your appearance; how long had you been lurking, waiting to make your presence felt? Days? Weeks? Not months, as you made your entrance when Freya was just 7 weeks old, and took my perfect from me before I had even had the chance to accept that this was my life. I hate you for that.

I hate you for the damage that you caused, to my little girls heart and my own. Your physical attack on my daughters body caused damage that has since repaired to spite you, though we will never know what lies around the corner as you sneer at us from afar. The effects of the emotional and psychological onslaught that you raged upon me went far deeper than any physical impact you created. Far deeper and perhaps more permanent still. Anxiety is one of the gifts you bestowed upon me, and sadly you declined to accept returns.

I hate that you took me away from my family, particularly my son. I hate that your presence resulted in my absence and caused a fissure in relationships that, theee years on, we are still fighting to mend. I hate that you created mistrust in me, from those who trusted me the most, because my attempts to protect them from what you were doing to our little Freya were seen as dishonest and insincere. Because of you my children learned that sometimes parents lie. And you can sugar coat it as a white lie if you want to, but to a boy of 5 who is just adjusting to not being the most important one any more, a lie is a lie. You have no idea how much damage that has done to a vulnerable little boy who trusted his mother the most in the whole wide world. For that, I will always hate you.

I hate that you made me afraid. Afraid of life, afraid of death. Your ego will tell you that you taught me not to take life for granted, and maybe there is some merit in that. But you took away my innocent enjoyment of a life and replaced it with a life where I am constantly looking over my shoulder, wondering when time may run out for me or any member of my family. You can tell yourself that the fear of losing them has made me love them more, and that might be a little true, but mostly that fear has made me edgy and anxious and sad, and those feelings threaten any chance I had at savouring every uncertain second that we have on this Earth. I hate that you gave me that.

I hate that you show up, mess up and leave. The lucky ones manage to avoid any long term damage you try to cause, but there are still so many who are permanently impacted by your arrival. Less lucky ones might face an uncertain future with broken hearts, but at least they get a life.

But worse than that, you are too often allowed to take a life too young to be taken, and for that I hate you. I hate that we don’t know who you are, what you are, where you come from, or how to get rid of you. You are not welcome, and yet you show up anyway. The lives that you rudely interrupt are forever changed by you, but you don’t change. You just move onto your next victim, sending another family into turmoil and uncertainty and fear. I hate that we haven’t stopped you yet.

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

Posted on by Bluemama

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…

Posted on by Bluemama

…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 

Everything changes

Posted on by Bluemama

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

Posted on by Bluemama

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

Posted on by Bluemama

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…

Posted on by Bluemama

“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

Posted on by Bluemama

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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Memories of another you

Posted on by Bluemama

The other day I awoke to a Facebook memory; a picture of you from the same day a year ago.  You were 4 days old, we were home, and you were in your bouncy chair staring at me.  At first I smiled at the memory; that little face full of wonder at a new world that you could barely see through eyes so new.  But then, like a lengthening shadow, sadness crept in.

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Those days we had with you were so few before Kawasaki Disease pushed its way into our lives and stole you from us.  The you we knew. The you I gave birth to.  The you that wasn’t broken.  I don’t think I will ever learn how to come to terms with what this disease did to you. You were born healthy, and perfect and pure.  For 7 weeks we got to know each other at home, barely going out, because I wanted to be sure I gave myself the chance to drink you in.  We cuddled on the sofa for hours, and I fed you from my breast because I wanted you to have the best start in this world.  I know now how important those moments were, and I am thankful that I cherished you and didn’t feel any pressure to share you with the outside.  It’s like I knew.

But I didn’t know.  I had no idea that things would change for you, for us, overnight.  You were so perfect, so well.  We had no concerns at all about your development or your health.  You were nothing short of perfection, and I was smitten from the moment I looked down at you from my position on that labour bed.

I guess these memories are going to act as triggers for a while.  Seven weeks of memories of the you we had will be replaced by memories of the worst days of my life.  At least I came away from Facebook for a while just before you became sick; that I can be thankful for.  But then, I don’t need Facebook memories to remind me of those days; those days are forever etched on my mind.  I can’t accept the cruelty of it all.  To have struggled so much with the concept of finding myself pregnant again but come through it having battled some old demons and actually looking forward to this new adventure, only to see it come crashing down around my feet was cruel indeed.  We didn’t deserve this.  You didn’t.

I try to tell myself that I should be thankful you are here with us.  Things could have been very different.  In that first week in the hospital I was convinced I would be going home without you, you were so sick.  And when they told us that your little heart was damaged I prepared myself for the worst.  The psychologist told me that what I was experiencing was anticipatory grief; I had been presented with the possibility that you might be taken from us, and my mind had already begun to process that notion.  I could see a certain photograph of you on an easel at the top of a church aisle; that photograph haunts me still, and was the catalyst for my thoughts and feelings on those eyes of yours.  I told myself that if I accepted that this disease would kill you, that I might not take you for granted for the time that you are here.  I guess, even though it’s a little morbid, it’s not a bad way of thinking about it.  I mean, if the worst is that you have a life full of wonder until you are 90 then we won’t have lost anything will we? It’s a good rule to live by, and there are hundreds of cliches I could quote about living life to the full that would fit right in here. We were lucky that your heart began to show signs of improvement, and that we haven’t had to live with that feeling forever – others do.

Using the word ‘lucky’ to describe you makes me flinch, and the bully in my head says “Watch it! You’re not out of the woods yet! Don’t be counting those chickens already…!”

I hate Kawasaki Disease.  I hate it for stealing my memories and turning them into reasons to be sad and full of regret.  I hate that I can’t look at a picture of my tiny baby without feeling sorrow for the short time we had before our lives became filled with fear and drama.  I hate  that I can’t hold another baby without feeling like I’ve missed out on so much.  I held you for seven weeks, and it would be weeks before I could properly hold you again.  I could have held you, but your temperature soared relentlessly for a fortnight and I was scared that I would make you even hotter than you already were.  And I hated the tubes and the wires and the needles; the slightest movement would set the monitors off screaming and the nurses running.  I hated the look in your eyes; you were too young to be afraid.  I wish I knew how you felt when you were lying there in that cot with a vacant stare.

I hate it for making me look at the world through different eyes.  I am wary of the world now.  I know first hand that it has the power to take away everything that you love and I  approach every day with caution, even when I try to find joy.  Sometimes I think I have seen something out of the corner of my eye.  It’s like I see Death waiting in the shadows.  Kawasaki Disease sucks.

75% of children who have this disease will walk away without any heart complications.  They are the lucky ones, but that doesn’t take away the terror of the experience for the child or the parent.  But why did you have to be one of the 25%? Why couldn’t it have just left your tiny heart alone? Could it have been prevented? The doctors ruled out their suspicion that it could be KD on day 9, and yet it was lurking and continued to do it’s damage whilst their backs were turned.  4 days later it became clear that it had been Kawasaki Disease all along. I wonder how the doctors felt when the echo showed them that awful truth…

None of that matters now, I guess.  It’s done isn’t it, and there is nothing we can do to change it.  I have to learn to accept that we live in a world where uncertainty is the only thing that is certain.  Death and taxes.  This world is full of beauty, but it is also home to a lot of hurt.  And as if there wasn’t already enough sadness to deal with in this life, there are people who see fit to cause others pain.  Why do people do that? It is beyond me.

Anyway, enough of this morose talk.  What ever will you think of your mother when you read this stuff?!  It’s hard though Peanut, it really is.  The emotions I have to deal with every time I look at you are a bit too big for me sometimes; sadness, regret, guilt, anger, fear…love.  I just need to get myself back on track with our plans to turn this whole sorry mess into something positive.  You’ve raised a lot of money – £7,000 in just one month of fundraising for one event!  And you’ve even appeared on ITV News (http://www.itv.com/news/calendar/2016-04-13/mothers-plea-for-early-diagnosis-of-rare-kawasaki-disease/).  We will do what we can together to raise awareness of the disease, so that the next time a child presents the symptoms, their parent might just ask the question, “You don’t think it could be Kawasaki Disease do you?”

 

What a Difference a Day Makes

Posted on by Bluemama

We did it Freya! We did what we set out to do, and marked your very first milestone with an event to remember.  I hope when you read this, you will forgive me and Daddy for sacrificing your 1st Birthday for Kawasaki Disease Research, and we hope that you will look  back and feel proud of the legacy that we created in your name.  Your first birthday was important to us in more ways than you could ever imagine.  It has been exactly 10 months today since you received a diagnosis of Kawasaki Disease when an echocardiogram (heart scan) showed us the damage to your heart.  Back then I was so afraid for you that I couldn’t see a future that spanned days, let alone months.  Celebrating your 1st birthday never occurred to me – I was focussing on what was happening right there and then and it didn’t look good sweetheart, it really didn’t.  I don’t think I gave up on you, but I did start to allow myself to believe that we might lose you to this disease because of the damage that it did to your heart.

On the 25th January 2016 I sent out an invite to an event on Facebook; Freya’s 1st Birthday Fundraiser for Kawasaki Disease Research.  It would be a birthday party with a twist. First of all, you have very few friends (to protect you from some nasty childhood bugs until you have been immunised against them, we’ve lived in quite a closed circle for the last year).  Instead I had to find you some friends, and so I invited all of my Facebook friends that have children, and a few without.  I intended to have a number of stalls at the party that would provide an opportunity for us to raise some funds for research into the disease, but also needed to make sure that it was a great party for you, and that everyone would enjoy it.  And we wanted to do a raffle too, so I set about contacting local (and not so local) businesses to ask if they would donate a raffle prize to support us.  Some didn’t reply, a few were unable to help, but lots of people were happy to provide some brilliant things for your raffle, and we ended up with a list of 82 amazing prizes with an iPad Air donated by Daddy’s work as the top prize!  I was overwhelmed by the support for the cause, and interest in the raffle was soon peaked.

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We hit a small stumbling block when a friend informed us that we had to obtain a license in order to sell raffle tickets before the event, but I leapt into action right away and made the application to the Local Authority who (with a little help from the Mayoress’ office) turned the application around quickly and our license was granted.  It delayed the process by about 4 weeks, but the license was received on my birthday, 26th February.  We then had to have special tickets printed, and we were very lucky that Hayselden Volkswagen, Doncaster, stepped up to offer the printing as their donation to our cause.  We received the raffle tickets in the middle of March – we had one month to sell as many as we could, and we needed to sell enough to do justice to the value of the prizes we had received.

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We needed to make sure the party was something for everyone to enjoy, so we engaged a local children’s entertainment business, Bumblezzz, to do balloon modelling, face painting, a magic show and party dances.  The husband and wife entertainers sadly lost a daughter to cancer, so it felt like they were the right people to use for your party; people who could empathise with our situation.

Your nanny offered to run a jewellery stall where children could make a bracelet to take home as a keepsake from your special day.  She also made some things to represent Kawasaki Disease awareness, including little crystal ‘Kawa-angels’ and sun-catchers in orange and red.  Her stall was a huge success and she raised over £120 on the day.

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People from the local area, and other people that we know, donated lots of things for a tombola.  We even had bottles of champagne, so it was a very posh one! We had so many things that we did one for the children, and one for the adults.  Both tables were absolutely full of things, and almost everything had gone in the first hour of the party!  Your cousins, Tegan and Amber and their friends took charge of the adult tombola, and our friend Louise and her daughter Izzy manned the kiddies one.  In total the tombola tables made over £250, which is amazing!

Some of our friends made cakes to sell at your party.  Jo and Lisa (and their family) made some beautiful cakes and scones.  The stars of the show were Linda and Tracey who made absolutely loads of beautiful things, and made the cake stall look fit for a princess!  They made over £165 selling the things that they donated, and I even got to try a scone with some jam and cream.

The local nursery donated a bear, but he didn’t have a name so the children needed to try and guess it.  He was eventually named “Harley” and raised nearly £40 towards our total.  Our friends Alison and Jo manned the stalls with a little help (well a lot actually) from Jake, who added another £20 to the total with the Guess the Sweets in the Jar competition.  Bonbon Delights donated their Sweet Cart laden with sweets which they sold, making over £20 to add to the total raised at your event too.

Your Granny, Auntie Catherine and Vicky did a sterling job in the kitchen making tea and coffee and soft drinks for everyone, and your Auntie Hayley sold over £230 worth of raffle tickets.  We even had an impromptu visit from an Air Ambulance medic who taught the children to perform CPR using his dummies; that was fantastic!

I’m not sure how many people came to your party, but it was very busy!  Nearly 100 people accepted the invite on Facebook, and they brought family and friends and their children too.  Your Granny and Auntie Nicola bought you a car for your present, which you loved zooming around in, and you even got to meet Queen Elsa (Millie’s Magical Parties) who came along for free to support the event.

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We had an awareness table where I shared a photo story of your journey from the day you were born up to now.  We asked people not to buy you birthday cards, but a lot did anyway and we have a dining room table covered with them!  But we did ask people to write a wish or a message on a paper heart which I will be putting into a scrap book for you with memories of the event.

Mummy’s work (Capita) held a bake sale at work where they raised over £185, and the local wine bar, Otto, sold cupcakes on Rare Disease Day, making a massive £120 in one day! They presented us with the cheque on Monday, and you even got a birthday cake from them to mark the occasion.

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I am overwhelmed by the love and support that we felt on Sunday.  It was one of the most special days I have had with you since you were born, and certainly since everything changed when KD entered our lives.  I cannot think of a better way to turn something so terrible into something good, and the awareness and money we raised at the event will hopefully go a long way to helping the researchers to uncover the mystery of this disease, even if we can’t change anything for you.

All of these things, along with the direct donations made by people who have been touched by your story (not including the huge £75,000 donation received by COSMIC in your honour), add up to a total of over £6500! Because everything we raised is being matched by the Macklin Foundation in America, that is worth £13,000 to the research effort.  And if we can be cheeky enough to add the donation from ‘a cool Italian Dad who lives in Hong Kong, you alone have inspired a total donation worth over £163,000 to research.  I am bursting with pride.  You have achieved more in your little life than most achieve in a lifetime, and I will be eternally in awe of your ability to touch hearts and to give Kawasaki Disease a voice that has been silent long enough.

Together we can move mountains.