Questions I should have asked…

Over the past two years, I have used my writing and my desire to make a difference to raise awareness of this little known illness called Kawasaki Disease.  It all started with a journal that I was given whilst my daughter was in the hospital, a journal whose pages I would fill with thoughts and feelings every night whilst I lay there on a camp bed by my daughter’s side, a journal that would come home from the hospital 50,000 words richer.

Since I began sharing Freya’s Story, I have received many compliments about my writing, or my dedication to the cause. I’ve sometimes been called an inspiration!  And whilst I enjoy those compliments very much, the words and comments leave a bitter-sweet taste because they are compliments I would rather not have been in a position to receive.  At times I feel like a fraud, particularly when people say that without my perseverance, Freya might not have been here today.  Those comments make me feel like a fraud, because in the beginning, in that first week of Freya’s illness, I did nothing.  Nothing.

Freya had just passed the 7-week milestone when she became sick.  Up to that point we had spent some pretty uneventful days at home, where I lapped up the new arrival.  It is no secret to those of you who have read my blog from the beginning, from before Freya was born, that I was not particularly happy when I discovered I was pregnant.  With two children, aged 11 and 6, I already had the family I wanted.  I was approaching 40, and had just obtained my biggest promotion at work.  I couldn’t believe that I had gotten myself into such a mess, and in all honesty the pregnancy severely affected my mental health for some time.  And then over time my feelings settled, and I began to look forward to the arrival of our little girl.  It felt somehow that she was going to change things dramatically, that she was going to change me.  Boy, did I get that right!  I will never forget the moment that I held her for the first time – I wanted to  hold her so tight that I was frightened that I would squash her.  I remember asking the midwife over and over “Am I hurting her? Am I hurting her?” and they laughed and said of course I wasn’t! I had been there twice before, but this was different. Like somehow the journey I had been on through the pregnancy made her arrival so much more poignant.  She was a gift; a gift that I had failed to acknowledge for much of the time that she was growing inside of me, but my love for her once she arrived was more than strong enough to make up for that.  I was smitten.

IMG_4938

As I’ve already mentioned, those early weeks went by pretty uneventfully.  I had to remain in hospital with Freya for a few days after the birth as I had tested positive for Group B Strep during the pregnancy and had to receive intravenous antibiotics during labour to prevent the infection from being transferred to the baby.  Getting those antibiotics in time was a huge source of anxiety for me.  Throughout the pregnancy I had been plagued with thoughts that my baby would not arrive, and when I discovered that I was GBS+ and learned of the associated risks to my baby, I felt I had met her killer.  But once she was here, and we had the all clear to go home, all of those worries disappeared. Having learned the hard way from rushing to be supermum with the other two kids, this time I spent most days laid on the sofa with Freya in my arms, developing a bond like I have never known.  I watched movies as she slept on my chest, and I can remember only the sweet joy I felt from being in her company, just us two.  The first real adventure we went on was a trip to Cannon Hall Farm, a local visitor attraction.  That was on Saturday 30th May; Freya became sick the next day*

*The cause of Kawasaki Disease is still unknown, despite 50 years of research.  There is no evidence that I am aware of, of any connection between Freya’s illness and our visit to the farm, and I wholly believe that the timing was purely coincidental.  That said it took us a long time to return there, mainly because of the pain of the memories of it being our last day with our healthy baby girl.

Freya’s illness initially manifested itself with a loss of appetite.  She awoke in the early hours of the Sunday morning, but she seemed to have a cold and was struggling to take her milk with her nose so snuffly.  I tried for a while, but she just fell asleep with the exertion so I let her sleep until she next awoke.  It was after the refusal of the next feed, that I became concerned; not because I thought she was ill, but because I was worried about her not feeding.  That’s when I noticed her temperature.  It was my intention to give her Paracetamol, but when I saw the bottle said ‘from two months’ the goody-two-shoes in me wouldn’t let me give it to her without seeking medical advice.  So it wasn’t instinct that made me call the doctor – it was my conformity to rules!  Nevertheless, the call was an important one to make and the out of hours doctor said that I should take her to A&E as it was unusual for a baby of her age to have a fever without an underlying reason.  That’s when I remembered the GBS – my worst fears were becoming a reality and the word ‘meningitis’ seeped into my subconscious.

At the hospital, they checked Freya over and could see that she was working pretty hard to breathe (you could see her little tummy moving up and down instead of her chest), and the fever was soaring.  I remember telling them about the positive GBS result, and that she had been born within such a short time of the antibiotics being administered.  We went up to the children’s observation unit with her where we held her practically naked body as she slept in our arms.  I remember having to obtain a wee sample, which involves catching a wee in a kidney dish – no mean feat with a tiny baby, and we celebrated when we managed it!  What happened next is a bit of a blur, but I think because of her symptoms, and my warnings about the GBS, plus the standard protocol to treat a feverish infant for meningitis as a precaution, they decided to admit her to a ward and give her intravenous antibiotics and antipyretics.

I know I have told you all that already in previous blogs, but I’m telling it here to illustrate the point  that this wasn’t because of my instincts.  We were here because of the instincts of the medical professionals that this tiny baby was just too precious to send home.  

If you’ve read my blogs you will also know that after the medication had been administered I laid Freya down in the hospital cot and tried to get some rest in the chair in the corner of the room.  You might recall that as I laid her down, I could smell that she had dirtied her nappy, and you’ll remember that I chose to ignore it, to allow my exhausted baby to sleep without disturbing her again.  You’ll also know that I hadn’t sat back down in the chair for any more than a few minutes before I decided I could not let her sleep in a dirty nappy, and rose from my seat to change her.  She would sleep better if she was clean.  Was it instinct that got me out of that chair?  No, I don’t think so.  I think it was common decency and a conscience.  Whatever it was, it was the single most important decision that was made, because as I changed her nappy I noticed that her body was covered in a rash.  I hadn’t noticed that Freya was unresponsive when I changed her nappy.  She was sleeping, but I was pretty adept at changing nappies without waking the baby – I was like a ninja!  I can’t remember if she felt different. I called the nurse, the nurse called the doctor, and from that moment I was introduced to a whole spectrum of feelings that I will never forget and never want to endure again.  I can’t remember much at all, except the way the atmosphere in that room changed when the doctor and also by then a consultant, uttered the words “shutting down” and started to wheel my baby out of the room.

Two years on I can still see myself standing in that corridor in utter shock.  It was like something from a TV hospital drama.  It wasn’t real.  I called my husband to tell him he needed to come to the hospital.  I think it was around 6am.  I had this sinking feeling that my baby was dying right there in that room, and I remember how alone I felt. I walked slowly into the high dependency unit where they were working on my tiny little girl, pumping her with fluid boluses to resuscitate her.  I stood at the foot of the cot, my hands gripped around the bars, and just watched in silence as the doctors calmly gave orders to the nurses to hand them this, and pass them that.  It was how I imagine an out-of-body experience to feel.  Even now, I have to wipe away the tears at that memory.

Clearly they managed to stabilise Freya, but she was incredibly sick.  They continued to keep meningitis at the top of the list, particularly as she had gone into septic shock.  A number of different antibiotics were being delivered to her tiny veins through cannula sites in every place they could get one.  We would remain in the HDU for 3 days, where Freya was considered stable but no better. The temperatures continued to soar, she was tachycardic (elevated heart rate), and she was being fed through a nasal NG tube.  On the Wednesday (day 4) she was considered stable enough to move back onto the ward.  All I remember about those days was how quickly I settled into a routine of getting up and showering in our en suite cubicle, before Freya would wake.  I would try and sleep when she did, but I was too distraught to harbour much sleep.  I chatted with the nurses as they came and went, and it felt like we had been there for weeks.  I ate when family brought me food, but I rarely left the room.  Sometimes at night, my best friend would come with reinforcements and entice me out for a break and some food.  It was during those meals that I aired my fears to my friend; what if she dies?

11990695_885606198200165_4269304241309190643_n

Freya’s CRP levels (the markers in her blood that show infection/inflammation) were dropping slightly day by day.  When she went in her CRP was over 340 (normal is under 7).  I took the downward trend as a good sign, but hadn’t considered that even as it was dropping it was worryingly high.  To give you some context, Freya wasn’t released until her CRP dropped below 7, which would be 6 weeks after she was admitted.  I don’t know what I thought was happening.  I think I believed that she had meningitis, and that she was on the right medication to treat her for that.  She needed a lumbar puncture to be sure, but was too sick to undergo the procedure until the Friday (day 6).  They took blood samples every single day, but none of them grew any cultures.  Around the middle of the week, a nurse came in and said “You know they’ve found it don’t you?! They’ve found rhinovirus!”  I remember feeling so silly! I had taken my daughter to the hospital with a cold!  I think I must have been in shock, because I actually believed they would say “Mrs McBride, Freya has a cold, you can take her home!”  Even with the heart monitor constantly alarming as her heart rate soared, even as her temperature continued to spike, even when she was unable to feed on her own, with cannulae in her ankles, her wrists, her head! Even when she stared at me vacantly from that cot, and I yearned for cuddles that I couldn’t give for fear of dislodging the wires and tubes.  What was going through my head? It was like I really believed they would just switch all that off and let me take her home.  And yet, deep down I knew that something wasn’t right.  I still had an overwhelming fear that she was going to die.  But I’ve been told all my life that I am a neghead, a catastrophic thinker, so I batted that away as irrational and ignored my instincts, even though the doctor’s faces betrayed their fear.  I remember remarking to the consultant that Freya had rhinovirus, hoping that he would confirm how stupid I had been to worry.  But his response was “Yes she does, but rhinovirus doesn’t make a baby this sick.” I think that’s when I finally allowed myself to believe what my gut was telling me; that Freya was gravely ill.

The lumbar puncture would come back negative.  Elevated white blood cells gave them reason to believe she may well have had meningitis, but that the medication had already begun to work, but the test was inconclusive.  I remember how scared I was when they told me to hold her after the procedure.  They said I had to keep her flat – I was petrified that I would make a move that could cause her a serious injury.  Every test she endured during that week she had me by her side.  All but the lumbar puncture.  For that, the nurses asked me to stay away, and to be there for the cuddles afterward.  I took myself far away from the treatment room, but I knew my baby’s cries when I heard them, as they bent her tiny body into the position necessary to carry out the test.  That would be the first of the three lumbar punctures they carried out, but the other two were done under general anaesthetic in theatre so again I wasn’t present.

It was on day 7 that I told my husband how afraid I was that the doctors weren’t telling me something.  I said I could see the concern in their faces, eyes that betrayed their calm words.  It was then that I asked my husband to meet with the consultant.  He had to do it, as I needed him to ask them a question that I couldn’t bear to hear the answer to. I needed to know if they thought there was a possibility that she could die.  That is when she told my husband that on a scale of 1-10, with 11 being dead, Freya had been a 10.  My instincts had been right, and I just didn’t have the faith to believe in them. The following day, Freya would be transferred to the specialist children’s hospital as the local hospital had exhausted its investigative scope.  I do recall the consultant saying that if it were his child, and they had been sick for 8 days without diagnosis, he would be demanding answers.  He said that the children’s hospital would be able to scan Freya’s brain, and do an echocardiogram on her heart.  Still no alarm bells rang for me – belts and braces, I thought.

It is worth stating that in that first week, the only notable symptoms were a fever that would not abate with the usual antipyretics (Paracetamol/Ibuprofen), and a rash.  Freya’s lips were very red, sore and cracked, but this considered a symptom of dehydration with her being tube fed.  I had commented that her ankles and wrists looked swollen, but it was attributed to cannula damage, particularly as the cannulas were constantly having to be replaced due to failure.  The staff did not give me any cause for concern, and I didn’t therefore consider that all of these were possible symptoms of some strange disease.  Why would I? I mean that kind of stuff happens to other people doesn’t it!

It was in that first week that I should have asked Dr Google’s advice.  The fact that I didn’t  will haunt me forever.  Do you know what the top result is if I put this question in my search engine…

Question:  “My baby has a fever, a rash and cracked lips.”

Answer: Kawasaki Disease – Symptoms – NHS

I didn’t ask Dr Google though, and I have no idea why not.  Trust?  Complacency? Ignorance? Perhaps all three, and other reasons too.  I simply had no reason, or point of reference, to lead me to believe that I would need to look it up myself! We were in the hospital, surrounded by doctors and nurses with many years training and experience.  You don’t ask Dr Google, you sit back and watch and wait and let the professionals do their job.  You are in the right place, and they will make your child better. That’s how it works.  Perhaps I had the instinct, but didn’t know what to do with it?  Not once did the thought enter my head that my child could have something seriously wrong with them that the doctors were missing.  Not once.  I’ve literally driven myself crazy for two years asking myself why I didn’t see it.  Why I didn’t ask the right questions.  I’ll never get that answer, and will have to live with the consequences of that.

Perhaps if I’d read about this weird thing called Kawasaki Disease, I’d have associated the lips and the swollen extremities as symptoms and made them see?  Perhaps when the consultant mentioned a heart scan, the penny would have dropped and I would have asked him, “Do you think she has Kawasaki Disease?”  Perhaps if I had, they would have talked to me about it, and we would have agreed that she met the brief, and not for just an incomplete case as was finally diagnosed on day 13 of her illness.  No, she had all the symptoms they needed for a complete diagnosis.  My old boss once described me as being like “a terrier after the postman.”  When I get a bee in my bonnet, I rarely let it drop.  Had the KD seed been planted, I know I would have done so much research in those twilight hours when I dared not go to sleep that I would have made the connection.  I know that when they did an echo on day 9 that showed no damage that I would have told them that didn’t mean she didn’t have it! 75% of children with KD don’t sustain any heart damage, and you can’t use a clear echo to rule the disease out!  I know when the new rash appeared, that I would have recognised it from pictures I would have seen plastered all over the internet! There’s no mistaking it.  I might even have known that young infants are more likely to suffer large and giant coronary aneurysms, that they are more likely to be resistant to standard treatment (IVIG) and that they are more likely to get a severe case of the disease that results in a dangerously low platelet count (thrombocytopenia), not the usually high platelet count that is characteristic of Kawasaki Disease.  Had they decided to be open with me about their fears or suspicions, had they told me that KD was the prime suspect, I would have made them give her the treatment and not allowed them to rule it out. Which is what they did. They ruled it out on day 9, and she went through further tests including an MRI and a bone marrow aspiration in theatre, both of which failed to give them an alternative.  I wonder how it felt to see her coronary aneurysms when they showed up on an echo on day 13….

Now that sounds like I am blaming the hospitals.  Maybe I am? I don’t know.  I do know that it wasn’t negligence on their part.  They worked so hard to find the answers, and were thrown off the scent by this insidious disease.  I know how important it was to them that Freya get well again.  They know I was angry, in fact they told me how upset they were that I was angry with them because they felt that they did everything they could.  I won’t lie.  I will always feel angry that they were looking for it and still allowed themselves to be misled.  Could they have known more about the disease?  Enough to give them the conviction to go with a diagnosis regardless of that first echo?  I know they had to make certain decisions, and that the treatment for KD could have proven catastrophic had it had turned out to be Leukaemia as they had also suspected.  And no amount of blame will change where we are.  What I am thankful to them for is how they treated the illness once the diagnosis was confirmed.  Their aggressive treatment of the disease and their over-cautious approach to monitoring from that moment was fundamental to her recovery, and I truly believe that their actions from that point saved her life.  I will always question the decisions made by both hospitals leading up to Freya’s diagnosis, perhaps because it would feel easier if I had someone to blame, but their actions afterward more than make up for any misjudgement.

Perhaps it’s one of the reasons why I can never forget those early days in the hospital?  Perhaps it’s the main reason why I do what I do to raise awareness of the disease?  I cannot bear the thought of another parent feeling the regret that I do over questions I should have asked…

Whatever the reason, I know that I will always wonder if I could have helped my daughter get an earlier diagnosis and more timely treatment.  I will always wonder if I could have stopped her heart from breaking.  I can’t change what happened to her, but perhaps I can swallow some of that guilt and grief if I can change it for someone else.  So know the symptoms! Let our story show you how important it is to advocate for your child.  Ask questions – direct ones!  What do you think could be wrong with my child? Make them tell you what they are thinking!  And when you get some idea, and you think your child is displaying symptoms that give you even the remotest possibility of this disease, then ask them this…

“Tell me why it ISN’T Kawasaki Disease!”

It could be the most important question you ever ask.

 

 

If you would like to follow Freya’s progress, you can like and follow her story on Facebook (www.facebook.com/freyastory), Twitter (@freya_story) and Instagram (@freyas_story).  

For more information about Kawasaki Disease, please visit the NHS Choices website: www.nhs.uk/conditions/kawasaki-disease/pages/symptoms.aspx

If you know of anyone who is dealing with this disease and would like support, they can contact the UK Support Group through their website www.kssg.org.uk, or visit the KD Foundation (US) www.kdfoundation.org

To donate to Kawasaki Disease Research, please visit my fundraising page: www.virginmoneygiving.com/joannemcbride – all funds raised go directly to the COSMIC Kawasaki Disease Research Fund, registered charity number 1043697)

You can also visit the UK Foundation for Kawasaki Disease, Societi, to see the work they are doing to change the face of this disease: www.societi.org.uk

Advertisements

Unlucky for some?

Two years ago, on this day, you and I shared something that forever changed us.  It was the day that both our hearts were broken.  Yours by a disease I had never heard of, and mine by the knowledge that your life would never be the same. 

It was Friday 12th June, you were 9 weeks old that day and you had been sick for 13 days.  Despite a cocktail of antipyretics and antibiotics, the fever continued to rage through your tiny body, and each temperature spike would see your heart rate soar to frightening heights.  The settings on the heart monitor had to be set far outside of normal levels or we would never have had any rest from it’s alarm, and the nurses maintained a close eye on you during those first two weeks.  By that time, you had undergone countless blood tests, two lumbar punctures, ultrasounds, x-rays, an MRI and a bone marrow aspiration.  Just a couple of days before this day your haemoglobin levels dropped dangerously low and you had to receive a blood transfusion.  That’s when I promised I would start giving blood as soon as we got out of there; a promise I have kept ever since.  I remember watching the blood travelling through those tubes incredulous that this was happening to us, to you.  I think I must have spent those first two weeks in a state of shock, it seemed so surreal.  How could you be so sick? 

It was after they gave you the blood transfusion that they came to talk to me about a bone marrow aspiration.  They didn’t need to tell me what they were looking for – there’s only one reason they wanted to get at your cells.  After the longest 3 hours of my life, where I was convinced that you were not going to wake up, they called to tell us we could come and collect you from theatre recovery.  Watching you go to sleep from the general anaesthetic was one of the hardest things I had ever had to do, and I hoped with all my heart that I would never have to see that again.  I cannot even begin to explain the relief when I saw you awake again.

The bone marrow test showed that your cells were healthy, and we celebrated that fact.  And yet that meant that you were really sick, and still nobody knew why.

That afternoon, on the 12th day, a Rheumatologist was asked to come and take a look at a rash that had appeared on your limbs.  He said that it was highly likely that you had an infection, and that there was a strong chance that you would get better and we would leave the hospital without any diagnosis; one of those unexplained things that we would eventually forget.  But.  But, he said, we ought to send you for another echocardiogram on your heart just to be sure.  Be sure of what? I didn’t ask.  Why didn’t I ask? I’ll always wonder about that.  In case you picked up on the word ‘another’, yes you are right.  You had already had a check on your heart earlier that week, on day 9, and it showed you had a murmur but nothing to be concerned about.  That echo was to throw them off the scent that the Rheumatologist had picked back up.

And so the day came.  The 12th June.  Day 13.  Unlucky for some.  

I took you with a nurse for your echocardiogram.  You’d had one before and there was nothing to worry about, so I just assumed this one would be the same.  Except it wasn’t.  And nothing has been the same since.  

That echocardiogram showed dilation of your coronary arteries, over five times their normal size.  Coronary aneurysms don’t happen to children.  Not unless they have Kawasaki Disease.  And there it was, on the 13th day of your illness, we finally had a diagnosis.  What a relief! That meant they could treat you, and you would get better, and we would go home and forget all about the worst two weeks of our lives.  Except then I had no idea that the damage wasn’t temporary.  Yes, they could treat the disease, but they could not reverse the damage that it had done to your heart.  We had to face the fact that one of, if not the most important organ in your body, was broken.

You were given a dose of intravenous immunoglobulin (IVIG), which is a blood product made from the antibodies from thousands of human blood donations, high dose aspirin, and methylprednisolone (intravenous steroids).  All the antibiotics were stopped – Kawasaki Disease is not an infection, but a vasculitis which causes inflammation through all the arteries in the body, with a penchant for little hearts.  The Children’s Hospital has every paediatric medical discipline under it’s roof, with the exception of Cardiology, and so they contacted a ‘nearby’ hospital with a paediatric Cardiology unit to ask for advice.  We were told that they had shared your results and that the Cardiac Unit was “not excited.” Apparently that was good news.  It meant that, whilst your heart was affected by the disease, it was not considered worrying enough to require more specialist care, and the children’s hospital continued to monitor your situation.  You had been so sick, and you were so young, that they didn’t take any chances, and you were sent for follow up echoes on Saturday and Sunday morning; no change.  No change is good.  And on Monday morning, you were sent for another.  Except this time, the nearby Cardiologists had reason to become “excited” and preparations were made for your ambulance transfer to the Cardiac High Dependency Unit, 36 miles away – but not before you had received a 2nd dose of IVIG to attempt what the first dose had failed to do.  Within 3 days of your diagnosis, your coronary arteries had dilated further and we would hear the word ‘aneurysms’ for the first time.

I’ve written many times about what happened next, and I hate to bring it all up again sweetheart.  It’s just that, despite my very best attempts to live ‘in the moment’, I must have left the door to this memory slightly ajar.  I didn’t mean to let it in, but it seeped through the cracks and it’s been like watching a scary movie through parted fingers all day.  No matter how hard I’ve tried, I just can’t help but relive those moments.  Today I feel all that pain, all over again.  I drove to Sheffield this evening on an errand, and felt the tears rolling down my cheeks.  I have never seen as many flashing blue lights on the motorway as I did tonight, jeering at me, forcing me to remember, and fleetingly I wondered how easy it might be to make that pain go away.  But then I remembered that you are still here, and it isn’t 2015 anymore.

And I guess as I sit here tapping away at the keyboard, I have to ask myself whether the number 13 really was unlucky for you.  Because despite the fact that your heart will never be the same again, I have to remind myself that the improvement we have seen has indeed proved them wrong.  In fact, I would go as far as saying that for you, 13 was very lucky indeed.  The decision that your doctors made on that day was one of the decisions that saved your life, I am certain of it.  I cannot even begin to imagine how differently things would have turned out had they not carried out that echo.  And I can be angry and sad for the rest of our days that they didn’t catch it earlier, but that won’t make the pain go away.

Today I will allow myself to feel the grief of loss for your perfect heart again, but tomorrow I shall remind myself of how full my heart is for loving you.  I cannot remain sad, when I am so incredibly lucky to have you here.

I love you Peanut.

image3

 

Best before 31st May…

Two years.  Don’t they go by in a blink.  It is hard to believe that two whole years have passed since that day in May 2015 that we will never forget.  Harder to believe that we are living a life more ‘normal’ than we ever could have imagined possible back then.  Back then it felt as though the bottom had fallen out of my world, and I was shrouded by a blackness that I thought would envelop me for ever. Today, it’s mostly sunny with a tiny chance of rain.  Today life is about as normal as it is ever going to get.  The last two years have been two of the most extraordinary of my entire life.  And you, my dearest Freya, my little “Peanut”, were the single most extraordinary thing of all.  Meeting you was like walking into the sun, and in spite of everything you went through, we went through, the clouds were never allowed to cast too large a shadow because your light burned through them like a flame through silk.

The past few weeks have allowed a melancholy feeling to settle around my shoulders like a familiar, almost comfortable wrap; two hands that placed themselves upon my shoulders, whilst a low voice whispered, “Remember me?”  It was a rhetorical question, of course I remember her.  She is sorrow, and fear, and dread, and grief.  I didn’t consciously awaken her, but the date was drawing near and I guess my subconscious had figured it out before I did.  I had been cleaning out the kitchen cupboards, like you do every now and again when you realise the dust is beginning to settle on the shelves!  I emptied the bottom shelf of one of the cupboards – that’s where we keep all the everyday medicines.  It’s where we keep your medicine, in a little pink sandwich box with Barbie on the lid.  I take that box out of that cupboard every single day to prepare your aspirin. Yet on this day, when I placed the box back in the cupboard I realised that it had gone back in a different way to normal.  I realised because there staring back at me, was the hospital label – we had used that box to store your medicines when you were in the Children’s Hospital.  And there I was, right back in that cubicle behind the nurse’s station, and you were by my side, in your cot, all wires and bandages and looking like someone else’s baby.  Your Auntie popped in just at that moment and for a while I was somewhere else.  When she snapped me out of it, tears came out of nowhere and I shrugged it off as ‘a moment’. What it was, was a flashback.  The first I have had since I was successfully treated for PTSD last year.  Luckily it was short-lived, and I was nothing more than a little shaken afterwards.  I’ve not had one since, though the sound of that musical seahorse going off the other day threatened to bring another.  Instead I considered how the fact that you were playing with it was a good sign that you do not remember like I do.  That is indeed a blessing.

Anyway, enough of that miserable talk! I haven’t written to you in so long, and I have so much to tell you! I want to show you how far we’ve come in the last two years, and let you know how remarkable your life has been so far.  On the 28th May last year, I wrote a blog which I gave the rather despondent title of “Stealing Joy”.  You see, that is how I felt back then.  Kawasaki Disease had come into our lives and stolen everything that was meant to be joyful away from us.  Here is some of what I wrote:

“I want to allow myself to believe all the motivational clichés 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 mourning for normal…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…”

And what I want to tell you now, sweetheart, is that it did come.  Normal came.  And with it came joy.

April 2016 marked the end of my maternity leave, but I wasn’t ready to return to work for many reasons.  For one, there were still issues with your immunity, and the risks connected to you being exposed to chicken pox were too great for me to consider placing you in any kind of childcare.  Heart-wise things were pretty unstable, with lots of unknowns, and much deliberation about whether we should allow the hospital to plough ahead with a procedure that I would prefer to avoid.  At that time the uncertainty filled me with dread and I was struggling to deal with what life had thrown at us.  I was about to receive treatment for PTSD (post-traumatic stress disorder), I had hit a very low point in my life where I felt let down by many people in it, and life itself.  I felt very alone, except for you.  You were the only one who could make me smile.  At that time I was sliding down walls in hospital corridors when an anxiety attack took hold, or crying alone in the early hours of the morning because there was nobody to share my grief or fear with.  When my employer agreed to allow me to take a career break to get back the time we lost, it was like I had been given a new beginning.  I was paired with the most amazing counsellor who helped me deal with what happened to you, and then some. And I began to believe in life again.

Don’t get me wrong, I don’t think I will ever stop being afraid of what lies around the corner.  And I am more afraid of death now than I ever was before.  I think about it a lot, almost daily.  Not in a macabre way, just a reminder that tomorrow isn’t promised.  Sometimes I feel deep sadness at the thought that I might not get to meet your children, my grandchildren.  I just have to try to stay young, so I might get that chance.  I feel a dreadful sorrow when I think about my own mortality.  I am so afraid to leave here, leave this place and my family.  I cannot bear the thought of being parted from it.  But then I guess it is our fear of death that keeps us alive.  If there is one thing I learned from my counselling it is this – that no amount of worrying about the future is going to change it.  I have learned to live in the moment (mostly).  Sometimes the resolve dissolves and I find myself fearful, especially as the seasons change and we head towards the Autumn, and the angiogram that I have such an issue with.   But mostly, we live in the now.  And since I went back to work full-time in April this year, there really isn’t much time to think any further forward than that!

When I was approaching my return to work, I became very sad.  The thought of not spending every day with you made my heart-break.  I wasn’t worried for you – I knew you would adapt and that it was time for you to experience new things and to make new friends.  I was worried for me though.  I honestly did not know how I was going to get through it.  We ended the two-year break with a fantastic holiday in Mexico.  We were finally able to fly, having managed to get you caught up on all the routine vaccinations you missed because you were so young when you got sick.  I had some contemplative moments on that holiday – each day that passed took me another day closer to leaving you. But I told myself that rather than think of what I was losing, I should think of what I have gained.  I was given the gift of time; another year to spend with you before I had to return to a ‘normal’ I never thought we would see.   A year to fill with a joy capable of erasing a year of misery.  And I have to tell you, that despite everything, these last two years with you have been extraordinary, because of who you are, and what you have achieved, and what you have done for me.  I am a better person because of you.

And you? Well, what about you?! Let me tell you what you have seen in this last year.  You’ve seen animals and sea-life, you’ve swam in pools and an ocean.  You’ve visited the home of a literary great, and learned where your name came from, my Freya Ellis Belle.  You have made firm friends.  You’ve danced and bounced, and you know your good toes from your naughty toes (thank you Mrs Riley!).  You have inspired a donation of £75,000 from a stranger across the other side of the world, and raised £8,000 from your 1st birthday party.  You’ve sat upon the knee of world leading Kawasaki Disease specialist, Professor Jane Burns.  You’ve been to Christmas markets, and Summer Fayres. You were awarded special recognition for Triumph Over Adversity at the Doncaster Free Press Awards. You have raised awareness of this disease, with tens of thousands of people having seen your face.  Last month over 5,000 people viewed a video of you on Facebook, raising even more awareness.  You have been in Newspapers and on ITV News.  You inspired me to give blood, and register for stem cell donation.  And you inspired me to run so that just this weekend I raised nearly £3,000 running 10km in the Great Manchester Run!  You, or Kawasaki Disease, or a combination of the two have made me stronger, wiser, more compassionate, kinder, more alive than I ever was before, and for that I am thankful.

On the train home from Manchester this weekend, I opened my finisher’s pack to have a look at what was inside.  My runner’s medal, a sick bag (I’ll tell you about that one day), some leaflets, a bar of chocolate.  I look at the wrapper to see what kind of chocolate it was and my eye was drawn to the best before date:

Best before 31st May.  

Perhaps you were best before then.  You were best in terms of being undamaged, your little heart was in tact and you were perfect.  But actually, you are so much bigger than the 7 weeks before you became sick.  You are more than Kawasaki Disease, more than a broken heart.  And I am more than a mum.  I am your mum, and that makes me a very lucky woman indeed.  I became my best after you.

image1 (1)

 

Return to Cannon Hall Farm

Dear Freya

I must admit the title of this blog post made me smile a little!  Sounds like one of those old stories I read when I was a child, usually involving four or five intrepid children and a dog off on some treacherous adventure.  Today was not quite so dramatic as any of those stories, but it was an adventure for us nonetheless, and I must start by saying thank you for making today wonderful, when it might have been otherwise.

Today we visited a local visitor attraction, Cannon Hall Farm.  It is about a 45-minute drive from home, in Barnsley, South Yorkshire, and is home to lots of animals that you can get close to. At this time of year, in the Spring, the farm gives birth to new life in the form of tiny piglets and little lambs and if you are lucky with the timing you can get to hold a guinea pig and stroke a fluffy rabbit too.  We arrived just after 11am, and you were excited about seeing the ‘aminals’ as soon as we got out of the car.  I’ve visited many times over the years, but this was the first time you were seeing it with your eyes, and it was magical.  I love seeing life through a child’s eyes.  Everything is new and wondrous and those big blue eyes sparkled with excitement at every new thing that you encountered.

We paid our £5 entry – there’s a special offer on at the moment and you were free anyway, so it was most definitely good value for money!  We bought a bag of animal feed too, so you could interact with the animals.  We were presented with stickers to wear to show that we had paid our way, but even though I confidently placed mine on my coat, you were reluctant to allow me to do the same with yours.  See, you have developed this fear of stickers, presumably a mixture of ECG memories and the steady flow of sticker offerings at every medical appointment, but whatever it is those stickers cause you to recoil, and back away like I have some kind of venomous creature in my hands.  I managed to convince you within about half an hour that you had to wear your sticker if you wanted to feed the animals – you may only be 22 months old, but you are  bright as a button and you were really keen to send the food down those chutes.  I took the small victory, and punched the air in my mind.

You were mesmerised by the Meerkats and ran up and down the enclosure as they chased you from the other side of the glass.  Seems they sensed your fun and wanted to join in.  And then we went on to the breeding barns, led by a very eager you running off ahead, giggling “What’s in there?!” as you ran. You adored the pigs and their piglets, and toddled excitedly from barn to barn shouting “Bye bye!” to the animals as we left them.  You weren’t too keen on the tractor cleaning out one of the stalls, but we moved on quickly enough for you to forget about the monstrous roar of it’s engine as it shovelled away all the muck and straw.  You gambled on the blue ferret to win the race, but sadly it had no intention of leaving its starting block and lay there curled up in the warm Spring sunshine, along with green and yellow, while red took the title with ease.  We walked past the birds on our way to the sheep enclosure, where you delighted in the sounds of the lambs, remarkably like new born babies crying for their mummies, until one of the ewes decided to utter a deep, groaning “baaaa” and you ran screaming “Help me, help me mummy” until I scooped you up and headed back towards the centre of the farm!  As we passed the birds again on the way back, I saw the network of tunnels in the children’s play area out of the corner of my eye.  Silly really, that it was the sight of those tunnels that drew an inward gasp and brought a tear to my eye, but I quickly brushed the thought away as we headed back to see the meerkats again – they would bring back the smile in an instant.

We had pretty much exhausted your attention span, and the use of your little legs, by around 1pm so we popped into the restaurant for some lunch.  I ordered a sandwich and chips for us to share and we took a seat in the corner where I could pen you in at the end of a row of benches!  You like to wander, and I needed you to stay put and eat some dinner.  On the table next to us were an elderly ‘couple’ (I could tell by their conversation that they were not married, and later found out that they were both widowed friends).  Both the lady and the gentleman were showing an interest in you.  I mean, at risk of sounding sycophantic, you do draw attention to yourself. Those huge ocean blue eyes, and your little curls, along with this way that you carry yourself that defies your 22-months on this Earth, seem to gather interest everywhere we go.  You are quite simply captivating.  I don’t know what it is that you have, but I guess although it sounds like far too mature a word to use to describe you, I would say that what you have is charisma.  Oodles and oodles of charisma.  Whilst I am most definitely your number one fan, you seem to be gathering a following wherever you go.

Anyway, to get back to the point of our ‘adventure’.  After a number of musings and comments from the couple next to me, the gentleman remarked at how clever you are – he had been observing you when you were let down from the table and noticed how considered every move you made was.  He said you seemed to be well aware of everything and everyone around you, and he said “She’ll go far that one.” He said you seem ‘lively’ and I laughed and said “Oh yes! She keeps me on my toes!” and the lady replied, “Yes, but better to have them like that,  than in hospital poorly.”  I could have brushed over that comment, but instead I remarked that you had indeed had your fair share of that, and of course this sparked some interest in your situation.  “In fact, the last time we were here was the day before she became sick.”

And there it was; the reason for our visit.  We have not been back to Cannon Hall Farm since that day before our lives were changed forever.  Saturday 30th May 2015; you were 7 weeks old and it was our first outing as a family.  I don’t know why we haven’t returned to visit the farm really.  There is absolutely no suggestion that your illness was linked to the farm, and whilst the cause is unknown so it could never be completely ruled out, it is more likely to be just a coincidence and bad timing.  I think I just didn’t want to undo the memory of that perfect moment in our history.  I mentioned earlier that the sight of those tunnels was the only thing that triggered an emotional response (though I had been working hard to suppress the emotions I could feel crushing my chest all the morning).  I guess it’s because we spent a while there whilst your brother and sister got themselves lost in the maze of tunnels.  I think I fed you as we sat on a bench and watched the children playing in the early Summer sunshine, and congratulated myself on this perfect life we had created.  And up to that moment, Peanut, it really had been perfect.  You were perfect.

That day in 2015 at Cannon Hall Farm marked the end of perfect for us, or so it seemed.  It feels so unfair that things changed so early on in your life, before we had a chance to make any more perfect memories.  I guess I’ve wanted to preserve the memory of that day, hold on to the precious moment that is captured in sepia images in my mind.  It has been a huge flag on a timeline, marking the change from perfection to imperfection, and giving me something to grieve, to pine for.  But do you want to know something, Freya? What I realised today is that there was really no need for me to hold that moment on a pedestal as something to be quite so treasured.  Because, with the exception of 6 long weeks in a hospital cubicle and all the trauma of 2015, every single moment with you is something to be treasured.  Yes, I felt sadness wash over me when I remembered how carefree and wonderful our lives seemed on that day at the farm, but when I sat and thought about it I realised that without what happened to you, without Kawasaki Disease and it’s gifts (yes, you detect sarcasm) then we wouldn’t have experienced the wonder of today.  Without Kawasaki Disease, I would have returned to work after a year on maternity leave, and our moments would have been reduced to the same precious hours on weekends that your siblings were lucky to grab in between the mountains of washing and ironing.  Because of Kawasaki Disease, you now have a broken heart and an uncertain future.  But because of Kawasaki Disease, I now have a heart that is capable of feeling more than it ever had before.  It showed me a glimpse of what it might feel to lose someone I loved, and made sure that I will never take you, or anyone else I love, for granted.

Of course, I wish that we had never been introduced to this insidious disease.  I wish that you hadn’t been so little and therefore susceptible to the very worst that the disease had to offer.  I wish we didn’t have to face a future with hope, but no guarantees.  Our lives would have been so different without it, but I am not sure if our lives would have been better.  Is that wrong? I don’t know.  I just know that what happened to you in 2015 created an opportunity for me to be a better version of the me I had once been.

Today, as I saw the wave of sadness cross that lady’s eyes when I told her that you had a damaged heart, it struck me at how terribly unfortunate your circumstances must seem to someone on the outside, even if, as the lady said, “You wouldn’t know to look at her!”  But to us, this is just our normal.  Today I realised that what we have is not an altered you or a changed you.  The you we had for 7 weeks at the start of your life with us was wonderful, but it was not a patch on what was yet to come.  You have given us 22 months of extraordinary, and I cannot even begin to put into words how grateful I am to you for today, and all the days just like it, both in our past and in our future.

Whatever it is that radiates from within your little body, it takes my breath away and  I love you with all my heart.

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!

IMG_5240