freyasstory

Someone Else’s Story

Posted on by Bluemama

If ever there was a story that reinforces the need to raise awareness of Kawasaki Disease, then it is the one I will be sharing with you tonight in a blog that is very different to my usual writing; today I am giving you someone else’s words.

This is Max’s story, shared on Social Media today by his mother, Maryann, a woman with more strength than I could ever hope for.  Like me, Maryann is committed to sharing Max’s story to raise awareness to help prevent future misdiagnosis, and to pay something forward; to make our children’s suffering at the hands of KD worthwhile.  Unlike me, Maryann’s journey ended with unimaginable heartbreak.  She has given me permission to share her post here in my blog, and I have therefore copied without edit for you to read, just as I did when I awoke to the post this morning.

Today’s blog is written in support of all the children who have suffered with this devastating illness.  It is written in memory of the Mighty Max Rocklin.

“I am only doing a condensed version of what happened last summer.  June 22, 2014 Max complained of his belly hurting around his belly button. The next day he complained of having a pain on the right side lower abdomen and started running a fever. I called his doctor and she wasn’t in. So I gave him Ibuprofen and watched him. Tuesday morning he woke up with his left hand drawn up and his face felt numb. So I took him to the first emergency room. They said he has appendicitis. They couldn’t handle that there. So he was transported by ambulance to another local hospital. They did an ultrasound of his belly. His illium, small intestines and colon was inflamed. So the surgeon there said Max needed to go to a children’s hospital. They couldn’t transport him until the next morning. So he was admitted to the hospital. They wanted to do a ct scan with conarast. So that was done. He still was running fever and hurting.
Wednesday morning Max was transported, by ambulance, to a hospital 4-5 hours from our house. The ambulance started smoking on our way there. So they had to pull off the highway. The airconditioner stopped working. They had a small fan to blow on Max. They decided to throw on the lights and sirens and speed there. We got to the hospital and saw 2 doctors. One was certain he had Crohns disease. (Max NEVER had diarrhea) They wanted to do an endoscopy and colonoscopy. So he had to drink these huge cups of myrilax. He couldn’t drink them. So they said they would have to put an NG tube down his nose into his stomach. My mom went for a walk at that time. I stayed with Max. They didn’t sedate him. I had to watch my sweet boy scream, “Help me momma!” over and over again. When they were done. I tried to comfort him. He said, “No don’t touch me.” He was upset because I couldn’t help him. That totally broke my heart. He had wires everywhere. He started having diarrhea from the myrilax. So I had to carry him to the bathroom because he was so weak. I would undo all of his wires, pick him up, carry him and pull the iv pole with us into the bathroom. I would have to sit in front of him so he could lean on me. He would hold on tight and pat my back. God I miss that sooooo much!
The doctor continued to say he had Crohns because now he had diarrhea. Um, he didn’t have it until they gave him myrilax!!! He was also tested and it came back that he had C Diff. A contagious virus that comes from dirty hospitals! So we were quarantined to the room. I had to bleach everything in the room if we touched it. Mom and I could leave the room as long as we had gloves and a gown on. This was for almost an entire week. I think it was Thursday that they did  the endoscopy and colonoscopy. Nothing showed Crohns! By this time Max had bright red eyes, a rash from head to toe, red spots under the skin on his palms and feet, feet, legs and abdomen swollen, his feet were peeling, his fingers were peeling and his pinky nail was coming off.I argued with so many doctors, interns, nurses, etc. NO ONE would listen to me! They always had an aswer to why these things were happening. His white blood count was through the roof!!! He had chest pain several times. They would just give him more morophine.
He was on Iv’s, morophine, vancomyacin, ibuprofen, benadryl, etc. By July 3, 2014 they said he could go home because his white blood count was down. So after 9 days in the hospital they were sending him home with antibiotics.My thinking was his blood work looks better so let’s take him home. Sometimes people get better at home. On July 4 Max got his bunny we promised him in the hospital. He was still so sick. So he slept with us. He lost 7 lbs in the hospital so he looked so sick. I started him on pediasure and fed him whatever he wanted. He started looking so much better.
July 12 he wanted to play outside for a few minutes. So we said ok because he was doing so much better. About 15 later he came in with chest pain. It didn’t get better so we took him to the emergency room. They said he needed an echocardiogram but couldn’t do it because he was a child!! The doctor said it was probably just indigestion from the prednisone. But the same doctor wrote the word Kawasaki across the top of the dicharge papers. We were sent home. I called the dr 4-5 hours away. She said to give him tums. He started feeling better. The next day he was going down hill. So back to the ER. The doctor said we had to get Max back to the hospital 4-5 hours away. So we waited for several hours for transport. We got the same ambulance with no air. We got to the hosptal at 1:00 am. So Max and I got in his room and we laid down. July 14 he had an echocardiogram. I thought there would be nothing. But the cardiologist had this horrible look on his face. He told me that Max had 4 aneurysms in his heart.1 normal size, 2 medium and 1 was the biggest they had ever seen in a child. He also had a blood clot to the main artery of his heart. The room spun, my chest was pounding, I kept thinking, “NO you are wrong!” I didn’t let Max see me upset. The cardiologist said, “Max has Kawasaki Disease.” What? I had never in my life heard of something like this. Why wasn’t my son diagnosed sooner? So 22 days after he started getting sick he was finally diagnosed. I called my mom, dad and husband to get to the hospital. The doctor was talking with a specialist in San Diego. They wanted to transport him in a private medical jet to San Diego. But they couldn’t because of the blood clot in his heart. He was put in ICU.  So they gave him coumadin to try to break it up. So the coumadin caused Max to have 4 hour nose bleeds. So iv #4 was put in to give him blood. His veins were so weird that the pic team had a hard time getting a vein. He would scream and cry when they would just flush them. He had 2 iv’s in each arm. I would have him look into momma’s eye and count with me. It would calm him down.
Tuesday July 15 Max got really scared. He said he saw glitter all over the room. All over Stephen and I. We figured that it was angels visiting him. At this point I still didn’t have it in my head that my baby could die. He kept having nose bleeds. But he was a little better. He wouldn’t eat or drink much.
Wednesday July 16 he wanted Chick Fil A. So my dad and Stephen went to get him some. He took just a couple bites. He played on his ipad and listened to music. Stephen and I wanted to take a shower. So we wentback to my parents hotel while they stayed with Max. I had a horrible feeling. I told Stephen we had to hurry.We saw Dunkin Donuts on the way back so we got him 6 donuts! He was asleep when we got back. My dad said he had a nose bleed the entire time we were gone. My parents went back to their hotel. Stephen went to lay down so he could sleep while I stayed up with Max. The ICU nurse came in and said Max needed some meds. So I first took some pictures of him sleeping because he was so stinkin cute. Then I woke him up. He took his medicine. I sat him up in the bed and told him I had a surprise for him. I put the donut box on his lap. He smiled the prettiest smile ever!! He took a bite and said, “How many can I have?” I told him all of thim if he wanted. About half way through his first donut (he still had a bite in his mouth) he looked up at me and said, “I’m tired momma.” I said, “I know baby. It’s ok. I love you.” He layed back and went into a severe seizure. I yelled for help. I watched my precious boy ball up. I watched his eyes roll in the back of his head. I watched him twitching around. I saw him take his last breath. The nurses started cpr right away. I called my mom yelling, “He’s gone. My baby is gone!!” Stephen woke up to the yelling. The icu room filled up quickly. They made a line between us and Max so they could take turns doing cpr. I could still see my baby. I watched them intubate him and his loose toothe fell out. I don’t remember parts of that moment. I was told that I prayed so loud they could hear me throughout icu and the waiting room. I begged God to perform a miracle! I begged God to take me instead! I begged and begged to give me my baby! I prayed for everyone who was touching my son to see a miracle in all of this. I remember bartering with God. I remember hearing the doctor shout out orders to everyone. A surgeon came in and said they needed to do open heart surgery. I signed the paper and thought they would take him to the OR. No….they did it right in the ICU room with us there. They tried to make a wall between us and him but I saw what they were doing to my baby. At 11:55 pm a lady came over and said the machine was breathing for him. “There is nothing else we can do.” So Stephen told them to stop. I sat there in complete shock. It felt like a horrible nightmare. They cleaned Max up and wrapped him in a white sheet. They handed him to my dad and my dad handed him to me. He was so warm. How could he be gone? I felt his chest….no heart beat. I tried moving him thinking he would wake up. He didn’t. I could see his beautiful blue eyes. I rubbed my hands through his hair, counted the freckles on his face, felt his nose, eyes, lips cheeks, ears, hands, fingers, arms, feet, toes legs and whatever I could. I held him until he was ice cold. Then Stephen got to hold him. I saw that Max’s face was dirty so, like all mothers do, I licked my finger and cleaned his face. We had to go. So my dad took Max and placed him back on the table. I kissed him so many times. I didn’t know how to leave without my son. I am a VERY protective mom! I wanted to stay with him and make sure he was being treated good. But I had to leave the hospital without my baby boy. I didn’t know how long it would be until I saw him again. We had a 5 hour ride home.
I had to call Stevie to tell him his baby brother died. Call Red Cross to get Stevie a flight home. Stevie had to get a loan to fly home. Red Cross doesn’t pay for them any more. I slept the rest of the way home. When we got home we had to tell Nick and Corey. I hate that my boys had to go through all of that pain!!!
Maxwell Joseph Rocklin passed away on July 16, 2014 just 5 days before his 8th birthday.
Max was the funniest, cutest, smartest, toughest, loving, caring, giving, beautiful and handsome little Super Hero. He may have been littlle but he is MIGHTY!
His funeral was the day before his birthday. I wanted it to be a child’s funeral. So in the plants and flowers were Super heros.There were balloons. Some friends made super hero posters with Max’s pictures all over them. They also made superhero pins. We wore super hero tshirts. The night of his viewing a dear friend and his son dressed up at super heros. The day of his funeral my cousin’s husband dressed up as a super hero. The funeral home was packed full. I had several dear friends sing for Max. Rev Christ Turner did an amazing job also. I was in such a daze. I don’t remember the faces of everyone there. I just wanted to be with Max. I wanted to constantly rub my hands through his hair, kiss him, and tried to hug him. I knew those were the last moments I would ever see my baby boy on this Earth again!
Since Max’s passing we have recieved so much love and support. I can’t name everyone and everything they have done. Literally there is hundreds of people that have been here for our family! Max is loved by so many! He made me so proud of him. The selfish part of me wants him back no matter what. But if Max had lived he would not have been able to be a regular little boy. He couldn’t over exert himself, had to wear shoes even in the house, one little cut he could have bled to death (From the coumadin), he would have to stay away from anyone who was sick. I forgot to add that Max had several heart attacks while in the hospital and at home. He would just say his chest hurt. They never did an xray or anything the first week he was in the hospital. Max has saved so many lives since he has gone to Heaven. I prayed for a miracle and for Max to be healed. This was not the miracle or healing I wanted. But it is what God knew Max needed. Believe me that is hard to say. I love Max so much that I am thankful he is no longer in pain. But I want to hold my sweet boy. I want to hug him. I want to be his mommy. I always will be. But not the way I want to.”
I would like to thank Maryann for allowing me to share her incredibly sad story.  My heart has known the pain that this disease can cause, but my heart will heal with every breath that my daughter takes.  There will never be enough words to express my sadness that Kawasaki Disease took her son from this world, or any of the other children who lost their battle.  What I do know is that stories like these will serve to ensure that I do not allow myself to take one second of this life with our daughter (and her siblings) for granted.
And every month, on the 16th, I will try to remember to pay it forward for Mighty Max.
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Top Left: Maryann created a banner bearing the names of all of our children, with the top spot proudly bearing her son’s name Top Right: You can make out Freya’s name on the banner Bottom: Max lost his battle with Kawasaki Disease on the 16th July 2014. On the 16th of every month his family ask that you take a moment to pay it forward – do something nice to brighten someone’s day, in honour of the Mighty Max

Flashbacks and Intrusive Memories

Posted on by Bluemama

As we move further away from the traumatic experience we had with Freya during the acute phase of her illness, it seems that I become more and more affected by what we went through.  If you’ve been reading my blog you will know that I recently received a loose diagnosis of PTSD, and am about to embark on treatment for that.  I was given a choice in relation to the treatment that I wanted, based on which element of my current state of mind that I wanted to tackle.  I can have talking therapy to help me get out all of my thoughts and feelings, or I can have specific behavioural therapy and EMDR to deal with the flashbacks.  I still don’t think I really know what route I want to take; I think I’d like to have the opportunity to do both.  We will have to see about that at my next appointment, I guess.

I’ve had a week or so of feeling pretty positive about life in general, getting to grips with the Christmas shopping and starting to look forward to the festive season, but at around 4am this morning, my happiness was rudely interrupted by memories of darker days.  But what is a flashback?  And what makes it more than just a bad memory or an intrusive thought?  I experience all three of those things, and I’m starting to recognise the difference.

Freya awoke at around 3am this morning, which is unusual for her as she usually sleeps through without a whimper until about 7:30am.  Some would say we are lucky it is unusual – the problem with that though, is that I’m just not prepared for it and don’t really know what to do when it happens.  Do we ignore, and hope she goes back off to sleep?  Should I change her nappy? Feed her? Take her into our bed?  I chose to change her nappy, and cuddle up with her in my bed in the hope that she would fall back to sleep.  After about an hour of convincing herself that 3am was the new playtime, Freya yawned! I seized the moment, and placed her back in her sleeping bag in her cot, which is still by the side of my bed (I haven’t quite reached the point where I am ready to put her in her own room).  Despite it being an unearthly hour, I switched on the butterfly that casts stars across the ceiling, and squeezed the tummy of the seahorse that would hopefully sing her to sleep.

And then it happened.

Lying there in the dark, with the outline of her cot just visible in the moonlight and that seahorse playing all too familiar lullabies, I was engulfed by a wave of nausea, and I felt the wetness of tears rolling down the side of my face before I had time to realise that I was crying.  My throat closed up, and I felt that my breath was caught somewhere in between my stomach and my lungs, and I thought I might actually be sick.  Suddenly, I wasn’t in my room anymore.  I was in a hospital cubicle. Cold under the hospital-issue blankets, I pulled them up under my chin and shivered.  Freya was wearing just a nappy and she was so, so hot.  She lay in a nest of blankets made both to make her feel secure, and to stop her from sliding down the cot which was raised at one end.  She hadn’t needed anything to soothe her at home; all she needed was me.  In here it felt like she needed something of her own that she could become familiar with, and so I had instructed her Daddy to buy the pink seahorse on the way to visit at the hospital one morning, and at every nap time and bedtime it’s little tummy would get a squeeze and soothing melodies mixed with sounds of the sea would pour out as it glowed reassuringly in the darkness.

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She’s gasping for air, but she won’t open her mouth. She looks like she is drowning.  Open your mouth sweetie, open your mouth.  I panic, jump up, hit the red button, a nurse appears.  A face mask is fitted, attached to a saline nebuliser to help clear Freya’s nasal passages, and she settles down.

I don’t want to wake up.  I don’t want to wake up because I am convinced I am going to see her there, looking at me with a faraway stare, lost and frightened and too sick to smile. I don’t want to wake up, because I know it won’t be long before they come to take more blood and she will cry until they’ve squeezed enough to fill 4 vials out of her little heel.  I don’t want to wake up because today I will be too scared to pick her up in case I upset the cannula in her  head, or her wrists, or her feet.  I don’t want to wake up because we will be alone and scared.

I wake up.  She’s crying.  That’s unusual for Freya; we are usually woken by beaming smiles and sounds resembling a bright “Hiya!” from her cot. I open one eye, she sees me.  She smiles.  She is snug in her sleeping bag, pink from the warmth and she looks at me with sparkling eyes.  Eyes that say, “We’re home mummy, we’re okay.”

How do I feel?

Posted on by Bluemama

“So, what brings you to us today?”

There it is, the dreaded question.  The question that you know is going to be the first one they ask, so you rehearse it over and over while you’re sat in the waiting room.  The question that, when it actually comes out of the mouth of a psychotherapist, is most often met with a blank silence, and lots of tears.  It’s a funny question to ask I think (funny odd, not funny haha). I mean, where on earth do you start?  The relief of actually being in front of someone who is not only qualified to ask these questions, but might actually know how to help you deal with the answers, has always resulted in me falling apart right in front of them.  The same can be said of this morning.

I felt sick to my stomach this morning, and a couple of times I thought I might actually run.  But then they called my name, so I had to see it through.  These things can go many ways; a lot depends on who the person on the other side of the door is.  I’ve been known to go for help (yes, I’ve been here before, well kind of – I’ll explain later), and clam up the moment they’ve opened their mouth. “Yes, I’m fine.  In fact, I’m not really sure why I’m here.  I’ve been feeling much better lately…”  Mostly they are the kinds of people that are experienced in getting people to talk, and are warm and welcoming, and I spill the beans before my backside has even met the chair.

Today was like that.  I was introduced to a trainee psychotherapist who would be responsible for carrying out my assessment.  i did feel immediately at ease with both her and the psychotherapist present and was able to articulate how I felt to a degree.  I answered that question, after a pause and a moment to catch my breath and stem the tears, that I was struggling to come to terms with a situation that I found myself in.  I explained that I felt an incredible sense of sadness that our child was struck by this devastating illness, after just seven weeks of normal.  I explained that I felt afraid that I loved Freya too much, and that every time I felt positive about the prognosis I was overwhelmed by the fear that the rug could be pulled out from under my feet.  I explained that I felt angry at the world for not understanding how much this has impacted on our lives, and that I had considered taking myself and my daughter far enough away from all of this to convince me that it never happened.

After a considerable length of time where I switched between a mother unable to speak through the tears as I recounted some of the experiences that you will have read about if you follow this blog or the Facebook page, to a sensible, level-headed woman who could describe the illness and its effects with the knowledge of a medical professional, a conclusion was reached. I am not depressed.  I knew that.  I have suffered with depression in many forms in the last 11 years, and I knew that what I was feeling was not the same.  It’s one of the reasons why I have struggled on alone for so long; I didn’t have an appropriate label for what I was experiencing.  I don’t display the classic symptoms of someone with depression.  I enjoy my life and know that I have a lot to live for.  I don’t avoid people or situations, in fact I look forward to human interaction and an opportunity to escape, let my hair down, mingle with my peers.  I took part in a hen party this weekend, which I thoroughly enjoyed (apart from the bit where I cried myself to sleep looking at a picture of my precious Peanut).  Some of the old familiar thoughts have been creeping in; I text her ages ago, why hasn’t she responded? She has probably had enough of me/isn’t interested/doesn’t care/doesn’t want to be friends with me anymore.  But I’ve managed to ‘have a word with myself’ and been rewarded by a late response and an explanation that allayed my fears, and reaffirmed my common sense.  I get up every morning, shower, make myself look presentable (cue the school mums saying “Seriously! She thinks that is presentable!!”), I have my nails done, I buy nice clothes. I am still interested in my outward appearance, and take care of myself.

However, I experience anxiety like I have never known before.  Full blown panic attacks where I feel like I am being strangled, and my body wants to sink into a puddle on the floor.  Real, deep sadness that takes my breath away.  Intrusive thoughts that threaten every moment of happiness that I dare myself to have.  Confusion, anger, hatred, irritation.  I shout at my husband and the kids like an old fish wife at times; I have no patience.  I want to lock myself in a room for a week, or more, and shout, kick, scream, punch some walls; let the emotion of the last 6 months escape from me in one tremendous fight against myself and the world.

See, I’ve written my blog.  Every time I have feelings I need to share, I take to my Mac and write.  I don’t think about it, my words are not considered.  I sit and write whatever my fingers choose to type, and Prosecco-fuelled as I am now, it just comes out, unconsidered, but raw and real.  I thought it would help, that writing would be therapy.  It has a little, but not a lot.  I feel like the words have to be spoken, aloud, to someone who hasn’t shared this journey with me, to someone who hasn’t had their own journey to contend with, to someone who doesn’t have an opinion on what I should think or feel.  To someone who doesn’t wonder what all the fuss is about (you know who you are!).  And I do not want the rest of my life or hers to be defined by the bastard that is Kawasaki Disease.  It has already taken enough from us.  And right now, Freya doesn’t notice that there are tears behind every smile, but it won’t be long before she does notice.  “Why are you sad, Mummy?” These are not words I ever want to hear come from that sweet little mouth.  But they will, if I don’t take control.  And I don’t want Freya to grow up scared of this world she lives in, scared of her own strength, frightened to fall or take chances.  I want her to live, and love life.  How can she do that if I put her to bed every night afraid that she won’t wake up the next morning?

The psychotherapist admitted that the low intensity treatment they offer is not what I need.  It is likely that I am suffering from post-traumatic stress disorder (PTSD) and am being referred for appropriate treatment.  I have a number of choices ahead of me.  I need to choose the treatment that will benefit me and my family the most.  I can be treated for PTSD with cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR), which are standard treatments.  Or I can have talking therapy that will allow me to say aloud all the things I have kept inside of me for these past few months.  Both would benefit me.  I think the most important thing for me to deal with right now are the symptoms of PTSD.  I need to rid myself of the anxiety, and be able to walk into our local hospital without it having a physical and debilitating effect on me.  I need to get some sleep; stop staying up until 3am to limit the number of hours that I am not alert to Freya or aware of her nearness.  And I need to erase the flashbacks, because those are the most distressing of all.  I have lived through these things once, re-living them every day against my will is making me unwell.  I will never forget some of those moments, nor do I want to; those moments are what will ensure I never take a moment with Freya for granted.  But I don’t want to see them played out in my mind like a DVD on a loop every day of my life.  Those memories are stopping me from moving on, and from seeing the beauty of life that is in front of me.  And I want to move on more than anything.

Forever changed…?

Posted on by Bluemama

I often find myself wondering if we could cheat this thing, Peanut.  You know, change the past by putting some distance between you and the place where all of this happened.  Get in the car and drive, just drive, as far away from here as we can get on a tank of diesel.  Far away enough to escape the darkness that threatens to steal the sunshine from our lives.  

 These past few days I have been taunted by intrusive thoughts.  I have a ‘friend’ called Ant* who used to hang around a lot, whispering negative thoughts in my ear whenever I tried to look on the bright side.  It seems these days she’s been inviting a whole bunch of pals round to join in, and they fill every space in thought that I have. Last night, as I laid you down to sleep, I was hit by a thought; “What if this is the last time I put you to bed?”  I don’t even know where it came from, I mean I don’t feel like you are in the danger zone anymore. Do I? To be honest, I don’t really know what I know anymore.  Before the appointment in Doncaster last week, I had reached a point where I felt things were stable, and that we were out of the woods.  Having to relive it all again to a new Doctor has knocked me sideways, and I feel confused and unsure and alone again.

These days my mind is never quiet.  I have to keep myself busy just to drown out the noise.  Today as we drove home from the Children’s Hospital my mind started to wander and I thought about how much I love you.  It’s crazy just how much, sweetheart.  It’s not even healthy.  I mean, of course loving you is a good thing, but when every thought of how much I love you is met with a thought about how devastated I would be if anything were to happen to you… God, I wish I could just love you without the fear.

As that last thought entered my head, I actually shouted aloud to the cloudless grey sky, “DON’T YOU DARE DO IT, DON’T YOU DARE!”  I’m not even sure if I know who I was daring.  God I guess.  I was challenging him, without any clue how I was going to punish him if he chose to ignore my threat.  What could I do?  What power do I have to protect you?  I just wish someone could tell me that things are going to work out, that you will recover completely and this nightmare will become a distant memory.  I don’t want to feel sad every time I think about what you might sound like when you talk, or when you will crawl, or what you will be when you grow up.  I want to be able to think about your future without being checked by the voice in my head that warns me not to tempt fate.

I was jolted out of my thoughts by the beeping of a car horn.  To the impatient lady at the wheel of the Mini behind me: We don’t care much about your beeping horn.  How nice to live in a world that you feel you can rush through.  I personally have no desire to rush through this life.  This precious life.  So beep away, lady, and know that you will not move me today or any other day. Nor shall you induce me to hurry for your convenience, for right now I am sharing the air in my Vauxhall Astra with the most precious thing I have in my life.

There is a quote that does the rounds from time to time about being kind to others, because you never know what troubles people are dealing with.  I will try to remember that, and be more tolerant of others.  Mini lady achieved a whole car’s advantage on me.  Was it worth it to steal a precious moment?

I feel like I am in purgatory.  Stuck in hellish flashbacks of the worst time of our lives, but without the Utopian promise of a life no longer touched by Kawasaki Disease.  I’m not sure how much sadness I can take.  I had you sweet and perfect and just as I made you, for seven weeks.  Seven weeks.  Now tears are streaming down my cheeks as I silently scream, “WHY?!!”  Why, Peanut? Why you? Why us?  Why did they have to ruin everything?  I am afraid that I will never be the same again.

On Friday I will have my first counselling session to try to help me come to terms with what has passed, and what might be in our future.  I have so much I need to say, out loud.  I’m frightened that once I open the floodgates to the emotions inside me, that I will not be able to close them back up.  And I’ll only have an hour.

*reference earlier blogs – ANT = Automatic Negative Thoughts.  “Ant” is the personification of my negative thoughts and feelings

A new perspective

Posted on by Bluemama

These last few months have been some of the toughest I have ever had to face, and I have experienced a whole plethora of emotions from sadness to anger, and every feeling in between.  I have even experienced grief, which was a particularly hard thing for me to deal with as it has been well over 20 years since I lost someone dear to me.  And I know that Freya is still here, very much alive, but I grieved in anticipation of the possibility of loss, and I grieve still for the loss of her healthy heart.

Kawasaki Disease doesn’t rule my life quite as much as it has done over the last few months.  I still dedicate a lot of time and effort to making sure Freya is receiving the best possible care, but mainly to satisfy myself that I understand the care she is getting because that’s the way I am.  I’ve never been one to accept something just because someone tells me that’s how it is.  I like to be fully informed, and I like to question the ins and outs until I am comfortable that information and decisions are accurate because I know that people don’t always get it right.  Not even me, haha! No, Kawasaki Disease has started to take a back seat to normality as we get on with being a family again.

One of the things that has niggled me the most is the notion that the hospitals took too long to diagnose Freya’s condition.  I have at times been angry and judgemental about the fact that they were unable to reach a diagnosis within the ‘safe’ window, and that it was too late by the time they worked it out.  After our stay in Leeds, where I had the worst day of my life (reference Freya’s Story (11)), I returned to Sheffield Children’s Hospital angry and bitter.  I felt that Freya’s doctors had failed to prepare me for what was about to unfold, and accused them of sending me to Leeds like a lamb to the slaughter.  I had not imagined that my worst fears were about to become a reality; up to that point I believed that my negative thinking was going to prove unfounded.  Both the Rheumatology Consultant and the Immunologist came to see me when they heard that I had questions, and I asked them pointedly “Thirteen days?! Why did it take you so long?”  I remember thinking that I could read the hurt in their eyes, and could see that they were genuinely upset that I had questioned them.  I do believe that they worked incredibly hard to do the best they could for Freya, and that they were almost as saddened by the outcome as I was when the echocardiogram confirmed that she had indeed been fighting KD.

It is easy when you are in a particularly black moment to want to hit out at those around you, and I very quickly forgot what I had seen from them in the days that Freya was in their care. Looking back now, it was really no time at all.  Sheffield reached a diagnosis within 5 days of receiving Freya onto the ward, and during those 5 days I could see that they worked tirelessly to try to fathom out what was making my baby so sick.  And they were brilliant at keeping me informed. I had not expected to see the Consultants very often during our stay, but there wasn’t a day that passed (well, weekends maybe) that we didn’t see one or more of them, sometimes more than once.  The Immunology Consultant was one of the most warm women I have had the pleasure to meet, and I always felt that Freya had touched her heart in some way.  She would come and sit next to me on the fold away bed, sometimes holding my hand when she had to discuss something difficult,  like the bone marrow procedure.  The Rheumatology Consultant and the SHO that we often saw would come into our cubicle and talk us through their thought processes and plans, and I always felt that it was a collaborative process.

Amidst all the researching and fighting of the past 4 months, I have always felt that there was still a reason to be thankful.  I have to remember that I took Freya to A&E at the very first sign of a temperature; she had no other symptoms of KD and would continue to hide those from the doctors for a number of days.  It seemed like a long time in comparison to other KD stories, but most of those didn’t take their child to the hospital on day 1.  There was so much luck involved in Freya’s story – had she been a week older, I would have begun to treat her fever with paracetamol at home instead of taking her to the hospital.  Had she developed a fever one day later, on the Monday, I would have taken her to my GP and probably would have been sent home with “just a virus”.  Had the Immunologist not asked for an opinion from Rheumatology, Freya would never have had that second echo.  Had Freya not developed that angry rash on day 11, the Rheumatologist would never have been called.  It’s like the doctor said, in the end “Freya showed [them] the way.”

Last week, at Freya’s follow-up appointment in Sheffield, I thanked the doctor for everything they did for her.  I said that whilst I would probably always wonder if there was anything they could have done to diagnose her sooner and whether her heart would have suffered if they had, I had nothing but gratitude for them for the way they aggressively treated the condition once they reached a conclusion.  They were as relentless as the disease itself, and had entered a battle that they were determined to win.  And they did win.  Because even though Freya has suffered complications with an unknown longevity, they stopped Kawasaki Disease in its tracks when it was intent on causing further damage.  I know that they did more than was necessary, carrying out daily echocardiograms even though the likelihood of a day-to-day change was small.   They often said that they thought some of what they were doing was “overkill”, but I know they did that because they wanted a positive outcome for Freya.

It has taken me a long time to stop trying to find a door to place my blame at.  That blame landed well and truly at my own front door in the beginning, and there is still part of me that wishes I could have made her strong enough to have avoided this disease.  I often feel like I failed her in that respect.  I don’t feel the need to blame so much anymore, and whilst it has been a slow process I do believe I have found my peace with this situation sooner than most.  Don’t get me wrong, I still believe there is more to be done to make the diagnosis of Kawasaki Disease more successful.  I still think it is a travesty that this disease can have such a huge impact on a child, and yet parents and medical professionals alike are unaware of its existence.  I still think that it is appalling that mums like me have to spend so much time and energy reading documents that may as well be written in Swahili, and trying to separate the wheat from the chaff of internet searches.  Let’s face it, mums have plenty of other things to be getting on with.  But, I do feel that I have a stronger appreciation of the medical profession and as a result I understand why our children are so difficult to diagnose.  So what brought about this catharsis?  It was in fact a letter that was delivered to me via Ed Miliband MP, whom I wrote to airing my frustrations as a parent of a child with this rare disease.

When I received the letter yesterday, I was anxious to pour over its contents.  On first reading, however, I was angered and frustrated.  He had written to the Secretary of State for Health (Jeremy Hunt) asking for his response to my concerns, and enclosed a copy of the response he received.  It appeared to be, on the face of it, a justification of my perceived failings of the NHS, “…challenge for GPs..”, “…6000 rare diseases..”, “…not possible to be an expert in all of them..” In all honesty, when I read the letter yesterday I was all fired up to write a pretty curt reply.  And then I remembered something that an old manager once told me; if you are angry, don’t respond, sleep on it and respond later.  So I read the letter again a few hours later and it was like some of the clouds that occupy my mind began to disperse.

What the Rt Hon Jeremy Hunt MP was actually saying was that we have to appreciate that with over 6000 rare diseases to consider, and particularly with Kawasaki Disease affecting only around 8 in 100,000 children each year, it is unreasonable to expect every GP to immediately diagnose a child presenting symptoms.  You think that doctors are trained to handle every medical eventuality, but it is like anything in life – no-one knows everything about everything.  Why, even in my field I would say that customer service advisors cannot be expected to answer every customer query that reaches their ear.  All we can do is equip them with the tools to provide the best possible solution.  Sure, there will be common questions that arise that even the worst advisor could answer with their eyes closed, but for every 100 simple questions that come along, there will always be one, a little more obscure, that needs closer attention, perhaps even a second opinion.  Why couldn’t I apply the same common sense to the medical profession?  I guess because they are dealing in life and death, so you expect more from them to know everything.  But how many times have you been to the doctor when they’ve had to use Google, or refer to a medical handbook?  Doctors are incredibly clever people; they are not geniuses with greater memory capacity than you or I.

The MP went on to provide information about the steps that have been taken to support medical practitioners in the diagnosis of rare diseases.  One of the resources he drew my attention to is a number of videos that have been produced by Health Education England, “in collaboration with the Department of Health, rare disease charities, patient groups and clinicians”.  One of the videos is called “Rare Disease: The GP’s Role” and has helped to give me some grounding in this whole thing (you can view it at https://www.genomicseducation.hee.nhs.uk/resources/videos).  The NHS appreciate the challenges surrounding the diagnosis and treatment of rare diseases, like Kawasaki’s.  Yes, more needs to be done to inject funds into research projects, but who am I to say that Kawasaki Disease needs more attention than the other 5999 rare diseases in the mix?  I know I run the risk of sparking political debate about government spending and the like, but I don’t claim to understand that in any detail, and I am sure that the solution isn’t quite as easy as we all might think.  And if being a Doctor was easy, we could all be one, couldn’t we?  I already feel like I’ve qualified with a degree in KD!

The videos that I watched with interest discuss genomics, a discipline in medicine concerned with DNA mapping (in simple terms!) There are currently 11 genomic medicine centres in the UK who are part of the 100,000 Genomes Project whose role it is to participate in “sequencing 100000 DNA codes of patients, leading to better, earlier diagnosis and personalised care, for cancer, rare diseases and infectious diseases” (https://www.genomicsengland.co.uk).  I was pleased to see Imperial College London on that list, and proud that my family has played our part in the study to understand the genetic determinants of Kawasaki Disease.  I was pleased to hear, in the letter, that “The Rare Diseases Advisory Group…is considering a proposed way forward on an approach to earlier diagnosis, which will be developed with the medical Royal Colleges.”  So, work is being undertaken behind the scenes to try to deal with this disease more effectively, and a Professor leading one of these research projects in London recently told me himself that they were about to publish a paper which proposes a diagnostic test for Kawasaki Disease.

As well as this, the MP went on to tell me about the NICE Guidelines that are in place for the treatment of children presenting persistent fevers (“Feverish illness in children: Assessment and initial management in children younger than 5 years”) which “provides advice in relation to the diagnosis of Kawasaki Disease, including details of the main symptoms…”  This information can be found on the website https://www.nice.org.uk.  I followed the flowcharts on the website and it was like watching Freya’s journey played out in a diagram! The doctors weren’t pissing in the wind (pardon the expression), guessing, or coming up with miraculous discoveries.  They were following an NHS guideline for diagnosis and treatment, and by a process of elimination were finally able to reach a diagnosis for my daughter.  Given the red herrings that Freya threw at them along the way, I am not surprised at all by the route they took, and I have a new appreciation for the process that they had to go through.  Perhaps this is common sense, and you are all saying “Well, what did you expect?!” But you know, I really didn’t expect anything other than to take my child to the hospital, for them to look at her, tell me what was wrong, treat her and send her home.  Well.  100% better. And not broken.

So what has changed for  me?  I no longer feel the need to blame anyone for what Freya went through, or for her current condition.   I feel that my respect for the medical profession in general has been restored; they can’t know everything, especially about a disease that many have probably not seen before.  I feel like I have reached a better understanding of the process that all the medical staff went through to diagnose my child.  Don’t get me wrong, there were a few ‘blips’ along the way, and I have no doubt that there will have been something that could have been done differently somewhere, but I don’t think I believe that a different course of action would have changed anything for us anymore.  Freya would still have Kawasaki Disease, she would still have received treatment and sadly because of the nature of the disease she was one of those children who was unfortunate enough to suffer heart involvement.

And what remains the same?  My determination to raise awareness of Kawasaki Disease.  My wish to see increased funding for research into the disease, whether from the NHS or public fundraising.  My commitment to use whatever spare time I have to produce information about the disease where I think it will help other parents in my position.  My passion to research and share what I can, and my appetite to challenge our Doctors to answer the unanswered questions that parents have about the disease and related issues.

I never thought I would use the word ‘lucky’ to describe our experience, but do you know what? We are lucky.  Because so many other stories have not panned out the way ours did.  Yes, Freya was critically ill, and yes she has a heart condition that will continue to worry us for an undeterminable amount of time.  I will continue to suffer anxiety when Freya screams out in her sleep like she did at 6am this morning and my first thought was is this it? And I will always wish that Kawasaki’s could have passed Freya by.  But right now, a mum is holding her child’s hand as they are put to sleep for heart surgery.  A GP is sending a child home because all they have is a virus.  A child is being pumped full of drugs that are not going to work, and will allow the disease to hide a little longer.  Right now, somewhere in the world, a parent is grieving the loss of their child to Kawasaki Disease.

 

Our broken hearts

Posted on by Bluemama

My dearest Freya

I haven’t written to you in a while, your journey has been continued through my blog and I mostly write to whoever is out there reading your story.  But today I found myself missing my imagined conversations with you and felt compelled to write.

I spend most of every day with you, my darling, and every day my love for you grows more and more.  You are an inspiration to me, and you leave me awestruck.  I cannot look at you without marvelling at how far you have come in such a short time.  On Saturday you will be 6 months old.  Just 6 months! It is hard to comprehend what you have been through, and I have to pinch myself to believe that you are still here.  And you are still here, despite this nasty disease’s best attempts to reach a less favourable outcome.  But despite the fact that you are doing so incredibly well, I cannot help the anxiety I feel for the eternity of fog that lies before us.

I read stories about KD all the time.  Every day I see comments from parents of children who have suffered, or are still suffering at the hands of this disease.  I feel the fear in their words.  Sometimes, like today, there will be a post from a parent who wants to share the news that their child, so many years after KD, has had a clear echo, or is surviving against the odds and sticking two fingers up at Kawasaki Disease.  Those stories are great, but they also act as a reminder that this never really leaves you.  There are daily posts from parents airing their concerns about the perceived after-effects of KD; behavioural problems, anxiety, joint-pain to mention just a few.  Reading those comments, I wonder what will become of you?  I don’t know if it is a blessing or a curse that you are so young?  I will never know how KD shaped your personality because you didn’t have one before it got you.  What I do know, is that it feels like I will have such a long time to wait to see the real long-term effects of the disease on your body and mind. I can be thankful that you shouldn’t feel any anxiety as a result of your illness. You have no idea how close you came to leaving us; you have already forgotten what KD did to you.  I don’t think I will ever forget.

I want to though.  I want to be able to live our lives without that dark cloud looming above our heads, threatening rain.  I want to be able to flick the switch that will stop the last few months playing over and over in my mind like a DVD on repeat.  I want to look at you and see your sweet, beautiful face looking back at me, not the lost little face that is etched in my memory.  I want to muse about the future without the niggling doubt that there might not be one.  And that’s not because I think you are going to die, because I know that you are doing really well sweetheart.  It’s just that I dare not say it out loud in case I jinx it and set in motion a whole new twist of fate.  It’s true that there is nothing certain about life, but mostly people go through life taking it for granted that it will last forever, or at least for a very long time.  Of course, a life can be taken at any time, and it wasn’t in anyone’s plan for this disease to take you when it had its strongest chance.  I had never thought about death as a real possibility before.  Now I think about it all the time.

I know it will get better.  I know that every day we move further away from the diagnosis is a day closer to healing.  And I am sure when you have had your next follow-up appointments in November I will gain some more comfort for our journey.  It seems like such a long time to wait, and I wish there were a way I could see right through your little chest into that heart of yours.  That’s the cruellest  thing about this disease.  On the outside you look like any other baby; happy and healthy, with little rolls of fat on those chubby thighs of yours, and a rosy flush to your cheeks. You can do everything you should be able to; you can roll over onto your front (mostly when I’m not watching, cheeky lady), and you chatter away all the time (this has most recently developed into a high-pitched scream whenever I am not paying you any attention!)  But in there, something is happening.  Probably good things, maybe nothing, but something.  It is completely out of my control, and is a constant threat and source of anxiety for me.

One day we will sit and chat about all of this, and you will laugh and tell me how silly I was to worry (don’t tempt fate, don’t tempt fate).  Oh sweetheart, I am sorry for writing in such a negative way.  I ought to be telling you how strong you are, and how great your life is going to be.

I went to see my doctor today.  You came too.  I was hoping you would stay asleep so I could keep you in the car seat with the rain cover on, acting like some kind of immunity bubble.  I hated that you were there with me, in that place full of germs, but I felt that if I took you with me maybe the doctor would fall in love with you and advocate for you as much as I do.  I want them to agree to prescribe your aspirin so that I don’t have to keep facing the battle at the end of every packet.  I felt like if they saw you, there would be a more personal connection and they might fight harder.  The doctor appeared unmoved.  I told the Doctor that I believe I may be suffering from post-traumatic stress disorder, and that as time goes on I am noticing some of the signs of  an old ‘friend’ that I thought I’d managed to banish from my life.  He asked what I had in mind, and suggested antidepressants.  I’ve declined that for now, and asked to be referred for talking therapy.

I have so much hurt inside that I could lock myself in a padded room and just scream until there is nothing left.  I am not what most people would describe as depressed (but then, how many people get that right anyway?!)  I function pretty normally.  I get up in the morning, shower and make myself presentable (in my humble opinion!)  I change you, dress you and feed you, and I run around after your brother to make sure he is ready on time for the school run.  I smile and chat to the other mums in the playground, and I genuinely enjoy seeing other people.  I don’t cry all the time, but I cry a lot.  It used to be that I just cried when I thought about all of this.  Now I cry over a lot of other things too; like things I see or hear on the news.  Yesterday, an 11-year-old boy in America shot an 8-year-old girl dead.  That made me cry.  I’ve started chewing my fingers again.  That’s a sign of anxiety for me.  And I’m angry and sad, and irritable and irrational all at the same time, which is exhausting.

It’s like my insides are all tied up in knots, and I feel like I am constantly holding my breath.  I thought that writing about all of this would make it all better; that in some way it would be like self-help.  It hasn’t worked out quite how I planned.  I text my kawabuddy pretty much every day, and that makes me feel better because I know she understands how this feels.  And yesterday we went to Nottingham to meet a lady who founded the Kawasaki Support Group here in the UK, and she still remembers how this felt for her 20 years ago.  I think everyone else probably thinks I should just get over it and move on; that you are better now.  You are here.  I know I should too, but this disease is full of surprises and it’s like I am waiting for its next move.

The fact is that somewhere in between the 31st May and the 12th June my heart broke.  I can’t say when the damage actually happened, perhaps around the same time that it happened to yours.  What I do know is that, like yours, it is slowly repairing.  But it remains broken.  I have sought help to heal it, but accept that it may never heal completely and there will always be some small part that Kawasaki’s killed; the part that believed that I could protect you from anything.

I loved you from the very second you were born into arms that shook with fear that they might hold you too tight.  I love you more today than I did yesterday, and I shall love you even more tomorrow.  Your smile will help to mend our broken hearts.

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Are we ok?

Posted on by Bluemama

Two of the most common questions I get asked these days are, “Are you ok?” and “Is Freya ok now?”  I’m not sure I know how to answer either of those things, so usually the first question gets a, “Yeah, I’m good thanks.” and the second receives a “Erm, yeah, kind of” response because I’m genuinely not sure what I should say.

Let me try to address the second question.  Is Freya ok?  She is clinically well.  She has no symptoms of any illness, no inflammation, no fevers, no rashes and no pain (as far as I know; she’s too little to tell me).  She feeds well, is growing nicely and has taken to weaning like someone who has just come off a diet.  She rarely cries, and when she does complain it is usually to tell us that she has a dirty nappy, is hungry or tired.  She goes to bed between 5pm and 6pm every evening without exception, and does not make a murmur until she wakes around 7am the following morning.  And when she wakes, she will lay in her cot looking around and cooing to herself quite happily until we greet her with the customary “Good Morning!” and are met with the brightest of smiles which only disappears when she is devouring her bottle!  During her waking hours, she is happy to lie on the floor or on her play mat, or sit in her chair, where she will play until she’s tired or hungry.  If she gets tired she might whimper a little but often falls asleep right where she is playing.  She has a smile for everyone, and she makes it possible for me to smile despite all of our recent troubles.

That said, she has a heart condition as a result of her illness.  Kawasaki Disease is a vasculitis; a response in the body which causes inflammation of every blood vessel, with a particular penchant for the heart.  The coronary arteries supply blood to the heart muscle.  These arteries will become involved in 25% of Kawasaki cases.  Treatment within a 10-day window significantly reduces that risk to around 6%, but for those of you that have followed our story you will know that Freya wasn’t diagnosed until day 13 of her illness and her heart suffered.  There are 3 main arteries that supply the heart; the left coronary artery (LCA), the right coronary artery (RCA) and the left anterior descending (LAD).  At the time of her diagnosis, all 3 of Freya’s coronary arteries had dilated (expanded) to over 5 times the normal size for a baby her age.   The risks associated with that are rupture, (where the artery wall gives out through weakness as a result of the expansion), and thrombosis (where the blood is allowed to clot within this new expanse).  At Freya’s age it was considered inoperable; a graft of the vein in the ankle is taken to replace the coronary arteries, but in an infant the success rate is poor.  Plus, as the baby grows they run the risk of outgrowing the new arteries, resulting in further coronary complications.  All they can do is administer the treatment (in Freya’s case, 2 doses of intravenous immunoglobulin, high dose aspirin, steroids and a single dose of intravenous Infliximab) to stop the inflammation in its tracks, and then regularly monitor the arteries to ensure there  is no further growth.  And hope.  Once that is under control, a child will usually be prescribed with a blood-thinning (anti-platelet) dose of aspirin and, in some cases, an anti-clotting (anticoagulant) agent like Warfarin.  Both of those, in slightly different ways, work to keep the blood flowing through the arteries, and to stop the blood from clotting.  Thrombosis would result in a heart attack.

Freya has shown remarkable progress, receiving a few “Wow!”‘s along the way, and even a message from Professor Jane Burns (a KD specialist in the States) saying “I expect she is safe and fixing the problem on her own. Well done, Freya!”  The arteries are now only 3 times the size that they should be, and we hope that they will continue to regress to normal size over the coming months/years, or that Freya will grow into them as she grows.  There is a risk as the arteries start to repair themselves, that the scar tissue causes stenosis; a narrowing of the arteries.  This can be treated with surgery in later life (you may have heard of a stent), but if stenosis occurs it can severely affect the function of the heart and is potentially fatal.  We do not yet understand if this is a risk for Freya, nor do we know what the long-term impact this disease will have on her, due to the absence of long-term studies.

And then we have the question of her immunity.  Her immune system was temporarily suppressed by certain medication, such as the steroids and Infliximab.  However, the immunoglobulin contains antibodies from thousands of blood donations and should cover Freya from most routine illnesses (and a few more weird and wonderful ones) for around 11 months from receiving it.  She has had no routine immunisations, and the advice (well, the most reliable advice anyway) that I have received is that she can have the killed vaccines approximately 3 months post-treatment (for Freya that is the 8th October), and any live ones once the IVIG is out of her system (approximately 11 months after treatment; June 2016 in Freya’s case).  For patients taking regular aspirin, there is a risk of developing Reyes’ Syndrome if the patient comes into contact with Chicken Pox or Influenza.  Although the risk of developing Reyes’ is rare, and is more often associated with patients on high doses of aspirin, it is a very nasty illness which affects the brain and can be fatal.  As a result, it has been recommended that Freya be given the Chicken Pox and Flu vaccines, but that she would have to stop taking aspirin for a period of time surrounding the immunisation being administered. That is probably my biggest cause for concern at the moment; how the hell do I protect her from Chicken Pox and Flu until next Summer?

Is she ok? Yeah, I guess she is.  She is not considered to be in immediate danger (from a cardiology perspective).  She will continue to take her daily dose of aspirin, probably for life, and will be monitored into adulthood.  You really wouldn’t know that there was any problem with her heart at all to look at her – she really is a wonderful baby.  But Kawasaki Disease is full of surprises and unknowns and shades of grey, so we just have to take each wonderful day at a time and hope.

Am I ok?  That depends on when you ask me, I guess! Or the circumstances in which I am asked.  I’m not sure that everyone that asks really wants to hear more than a “Yeah, I’m good thanks!” with that Invisalign smile that I’ve perfected over the years. But do you know what, I really am ok.  Ok isn’t brilliant, is it?  Ok isn’t absobloodylutely fabulous. Ok is just ok.  Not good, not bad.  Maybe up, maybe down.  Some people will worry that I may be suffering from depression, particularly since I have some history.  This isn’t that.  I get up every morning with a spring in my step.  I get a shower, make myself presentable to face the world.  I do the school runs, I iron, cook and clean; I function on a day-to-day basis just like any other mum would.  I spend most of my day playing and chatting with Freya (I mean who wouldn’t want to do that?  You’ve seen her, right?!)  We go out when we are organised, we stay home when we’re not.  Apart from staying away from playgroups and nurseries, we are not inhibited in any way.

With the avoidance of the aforementioned child-filled establishments comes a sense of loneliness.  I love spending time with Freya, but my world is mostly just me and her.  We rattle around here and there while I try to make the best of the hours we have together, but I miss having other people to talk to.  I’m an incredibly sociable person, I thrive in a group, and I stumble when I am left alone for too long with my thoughts.  That’s why I try to get out and about, rather than staying indoors where I have too much time to think.  I don’t know how best to describe how I feel.  I feel kind of numb, like every moment I spend out there in the world with Freya is surreal, like I can’t quite believe we are doing normal everyday things where other normal people go to do normal everyday things.  Maybe that is just it.  Maybe this is normal, but that it seems that Freya’s illness has been part of our lives forever so I don’t remember what normal really is.  And then I’m scared to let ‘normal’ in, because what if I forget?  What if I start to take things for granted? What if Kawabloodysaki’s comes up behind us and shouts “Boo!” just when we are least expecting it?

A friend recently suggested I might need some help to get through this.  At the time, I dismissed the concern.  I knew it wasn’t normal to cry as much as I did (still do), or to feel the anxiety that I had (still have), but there wasn’t anything normal about this situation either was there?  So I plodded along, dealing with it in my own way with a watchful eye out for signs that this was becoming something bigger than I could handle.  With each day, and with every bit of good news we receive about Freya, I expected the pain to start to dwindle.  If anything, it has grown.  It’s like now that we are out of the worst, and the adrenalin that kept me going for all those weeks has stopped coursing through my veins, things have finally started to sink in.  What do I feel the most?  Anger, sadness and disbelief.  I am angry that Kawasaki Disease chose my daughter.  I am sad that Kawasaki Disease stole some of what should have been the best of times with my new baby girl.  And I still feel utter disbelief that this happened to us.

I have an appointment with my GP on Wednesday 7th October at 9:30am.  It’s time to get some help.

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The Reality of Kawasaki Disease

Posted on by Bluemama

When the phone rang at around 9:30pm last night and my mother-in-law was on the end of the line telling me to tune into ITV because an episode of Doc Martin was showing a case of Kawasaki Disease, my stomach did a little somersault.  A prime-time TV programme mentioning KD? I could hardly believe it. I switched over a little too late so set the programme to record on ITV+1.  As more and more comments and messages came into the various Kawasaki support group pages on Social Media sites, including Freya’s Story, the adrenalin was pumping.  You could almost feel a collective buzz as parents of children who have suffered at the hands of Kawasaki’s from all over the UK tuned in to witness KD getting a voice.

I couldn’t help but feel a sense of pride in being part of this campaign for raised awareness.  I cannot claim credit for the inclusion in this TV programme, or the coverage in The Daily Mirror last week, but I would like to think that somewhere along the way there will be a link with Freya’s Story and the small bit I have done to help raise Kawasaki’s profile.  I can claim credit of over 300 signatures on the Kawasaki Support Group UK petition (change.org/kawasaki), and I know that a lot of the 500+ people who now follow Freya’s Story on Facebook and Twitter will not have heard about Kawasaki Disease before;

“This evenings episode of Doc Martin includes a case of Kawasaki disease, wouldn’t have known what it was without this page and good coverage to help raise awareness.” (Posted by Facebook user on http://www.facebook.co/freyasstory)

“I saw the Mirror, I have read nearly all of Freya’s story, I have cried for you and smiled at the lovely pictures. It’s amazing though what you have done, I knew you were strong and raising the awareness is fantastic.” (Friend, and follower of Freya’s Story on Facebook)

But I’m not doing this for praise or thanks.  I’m doing it because I don’t want another parent to have to go through what we did, what so many parents have, because of a lack of knowledge and understanding of this disease.

So, what did I really think of last night’s episode of ITV’s Doc Martin?  Initially, I was excited and amazed that Kawasaki Disease had even managed to make in into the public eye in such a dramatic way.  One of the nation’s most prolific TV channels mentioning something much of the country has never even heard about! Fantastic!  And then I watched it.

What were the positives?  Well, you get to understand the symptoms of the disease.  The little girl has a temperature, a red tongue and a rash on her body.  They allude to the fact that she may have peeling skin on her hands when a little boy remonstrates about having to hold the sick child’s hand on a school outing.  The child eventually collapses, and the show’s ‘hero’ appears.  After one look at the child, he makes a rather pompous statement, which went something like “this child hasn’t been eating sweets, she has Kawasaki Disease”.  And just like that, after seconds of seeing the child, he makes his diagnosis and drives the child at high-speed (she may die within 30 minutes apparently) to get her the treatment she needs to avoid the risks of a coronary artery aneurysm.  Amazingly the medication is waiting for them on arrival at the hospital and the child receives the treatment.  In terms of the programme, this whole thing took 3 minutes.  Remarkable.

So why the long face? It didn’t take long for the celebratory feelings to wear off once I let what I had just watched sink in.  Part of me still wants to believe that no matter how the issue was covered, any coverage is good for raising awareness of a disease that most haven’t heard about.  But (you could see that but coming couldn’t you!) it was scripted in such a glib and blasé manner that I wouldn’t be surprised if the message was lost on most viewers.  I suspect many won’t even remember the name of it today, let alone the symptoms.  And if they did remember it, I do not believe that anyone who hasn’t experienced KD first hand will have one iota of an idea about how serious, or how scary this disease is.

I know that the ITV would argue that Doc Martin is a medical comedy drama series; it does not profess to deliver messages in a serious manner (that can be left for the likes of Panorama and Casualty who gave KD some airtime about 20 years ago, in the mid-90’s).  We can be grateful that such a rare disease has even made it on the ITV radar, I guess.  But when you’ve watched your child battle with this disease, you can’t help but be left with a sour taste in your mouth after watching the episode.  In fairness to the programme, however, I am not a regular viewer so am unfamiliar with the usual format and scripting, and I know that they are likely to come under attack from victims of all manner of illnesses that they cover; they’re never going to please everyone.

If you watched the programme, and you think that Kawasaki Disease is a funny sounding illness, maybe even fictitious, then please know that it is very real, and is the leading cause of acquired heart disease in children.  If you think that it is easy to diagnose on first look at a few symptoms, please know that is not the case and often the symptoms come and go, disappearing just when you needed them to be seen.  In fact in many cases, not all the symptoms are present.  If you agree with Doc Martin’s assessment of the child’s parent being negligent by not noticing the signs, then please know that most medical professionals in our country have never heard of Kawasaki Disease, and many mis-diagnose the illness, sometimes with catastrophic results.  If you think that the treatment is readily available, please know that intravenous immunoglobulin is in short supply, and it is expensive.  It’s a product derived from human blood; we’ve probably all seen the marketing campaigns from various blood donation schemes recently – there is not a bottomless pit full of blood that we can all tap into at any time.  And if you think that all cases of Kawasaki Disease have a happy ending, you’ve just got to be a part of the support groups on social media sites to know that isn’t the case.  There are children currently fighting for their lives, and many that have lost their fight altogether.

I am disappointed in the programme, not only for its flippant handling of the illness, and think they could have done more to make it clear that this is a sinister disease that needs some real focus.  Many programmes include messages in the credits to support people who may have been a victim to the contents of an episode.  I think the ITV could have at the very least put up a public message about Kawasaki Disease, making it clear that this is very real, and even just supplying a link to NHS Choices for further information.

In order to reach a diagnosis, I had to watch a 7-week old Freya battle constant temperatures above 39 degrees for over 2 weeks.  Her heart rate was dangerously high.  She was resuscitated in a high dependency unit after her body started to shut down.  She had cannulae in every site possible in her tiny body, delivering a cocktail of various potent antibiotics, ibuprofen and paracetamol, and she was being fed through a tube.   She had blood taken every day for a period of 6 weeks, sometimes twice a day.  She had an MRI scan, ultrasounds, x-rays, ECG’s and echocardiograms.  She had 2 lumbar punctures, one under general anaesthetic which they performed at the same time as performing a bone marrow aspiration to test for Leukaemia.  She received a blood transfusion when her haemoglobin levels dropped dangerously low.  And she has received intravenous immunoglobulin – a product that is derived from thousands of blood donors – as well as a drug that shuts off the protein that is instrumental in the body’s fight against cancerous cells.  She is not even 6 months old yet.

Sounds shocking to read it all like that, doesn’t it? See all the tests that she underwent, just to try and work out what this illness was.  Kawasaki Disease threatened to take her life.  If the Rheumatology Consultant that came so see her on Day 12 of her illness had not suggested performing another echo “just as a precaution” the damage to her heart would have remained undetected, and her coronary arteries would have continued to dilate further and further until perhaps they wouldn’t have been able to stretch any more.  That means rupture.  Rupture means sudden, unavoidable, unpreventable death.

Now think about what you just read about Freya, and imagine now that her case is not the worst by far.  Yes she had a severe presentation of the disease, and her life was in very grave danger.  But as I type there are parents fighting against doctors won’t entertain a KD diagnosis, parents whose precious children have been in hospital for weeks struggling to fight off the disease, parents who still co-sleep with their children for fear of losing them, and worst of all there are parents sitting at home wondering how they will ever recover from the death of their child.

I cry every day.  I cry when I hold Freya in my arms and am overwhelmed with how much I love her.  I cry because I can’t shake the images in my head of how close we came to losing her.  I cry when I see other people happy, without a care in the world and no appreciation of just how lucky they are.  I cry because I am still heartbroken that this happened to my baby girl, before we had even had a chance to get to know her properly as Freya, just Freya.  I cry because I am so scared about the future.  I cry because I daren’t take Freya to baby groups for fear of her contracting chicken pox or the flu (as they can develop into another rare and potentially fatal disease, Reyes’ Syndrome) and I cry from guilt that she is missing out on a massive part of her development as a result.  When I visit the children’s ward at the local hospital where this all started, I have panic attacks.  Even this week, when I thought I’d be ok and felt no anxiety approaching the hospital, I was suddenly struck by uncontrollable sobs, and I couldn’t breathe.  I cry because I am grieving for the loss of my child’s health – she was perfect when she was born; Kawasaki stole that from me far too soon.  I cry because I feel the pain of every parent who is going through this, or something similar.  And I cry with frustration that more isn’t being done to improve the advice and support that is currently being offered by the medical profession.  Chances are I cry a lot because I sleep for less than 4 hours a night; not because I have a young baby – she sleeps through the night – but because I am permanently researching the illness or related issues, or communicating with parents and doctors on the other side of the world.  I cry because I am devastated, because I am sad, because I am frightened, because I am exhausted, because I am frustrated.  I cry because I cannot forget the journey we have been on, and am haunted by the playback of the last few months, which is constantly on repeat.

Sunny with a chance of rain

Posted on by Bluemama

Today I took my daughter to Haworth, home of the Brontë sisters. I have always been a fan of classic literature, with Austen and the Brontë’s being right up there with my favourite writers. In fact all of my children are named because of my love of literature; Eliza (as in Bennett, Pride and Prejudice),  Finlay Austen (as in Jane) and now Freya Ellis Belle (for those of you that don’t know, Emily Brontë, author of one of the worlds most renowned classics Wuthering Heights, wrote under the name of Ellis Bell for a time).  Of course I was indulging myself with this trip, but I thought that while I am on a quest to make special memories with Freya, memories that will wipe out the ones I have so far, what better place to start than in the place that my inspiration called her home. It was going to be a wonderful day out, and Freya would surprisingly love it too; she was going to share my love of literature as a result of this early exposure. Oh how we kid ourselves!

In reality, the day didn’t start very well.  Having taken a look at the Brontë Parsonage Museum website last night I became aware that the quaint old village of Haworth wasn’t really built for my ultra-modern pram (or anything with wheels for that matter).  The streets are cobbled, and the house itself has a steep staircase that renders it impossible to manoeuvre with any kind of vehicle. I needed a baby carrier and would have to try and get one before I set off on our road trip.

After I dropped my son off at school this morning, I drove to our local Mothercare.  There were about 8 different types of baby carrier on the shelf and I set about making an informed and practical decision (otherwise known as picking the nicest colour). My eye was drawn to a sling type carrier in a fetching lilac.  Having asked if I could try them on, I removed it from the box and tried it on. Hmm. I have no idea how a baby is meant to be carried in one of those things. I even took Freya out of the pram for a dummy run but daren’t let go of her once I had her in it. The member of staff didn’t seem to know much about how it should fit so I decided to give it a miss. Bored of being in her pram, and now particularly peed off that I’d taken her out and put her back in again, Freya started whinging. And then crying. And then screaming.  I knew she was not in need of anything – she had not long had breakfast, and had a clean nappy on – so I continued to look at the other brands and styles on the shelf.

Now, I’ve never been very good with noise, particularly when I’m feeling a little anxious. And the more noise Freya made, the more anxious I became. I took another carrier out of the box but it looked like you would need a degree in engineering to work out how to get it on. I struggled for a bit, but the more I tried to read the instructions, the more Freya cried and my anxiety grew. I had such high hopes for our day and these minutes in Mothercare were minutes I couldn’t afford to lose with a 90 minute drive ahead of us. By the time a member of staff came to assist, I was in tears on the floor of the shop with open boxes around me, trying to make sense of the instructions.  The lady was really sweet, and did her best to help me into the one I had chosen. Freya was still screeching.  I was so embarrassed by my little meltdown that I just said I’d take it. I asked her to box it back up and take it to the counter while I took Freya to the baby room to change her and feed her. Cue stupid moment number 2 when I had to come out 2 minutes later having realised that I had left all our paraphernalia in the car not expecting to be in the shop for as long as I was.

Drama aside though, I don’t know how you are supposed to safely put a baby in a baby carrier by yourself, and I’m glad I didn’t just pick one up and walk out of the shop without trying it out first.

By 10:30 we were finally on our way, and although a little shaken by my emotional outburst in the baby shop, I began to look forward again to our little trip. I’d picked a nice day for it and the sun shining as we left.  As we got closer to Haworth though, the heavens opened, and I couldn’t help but smile at how fitting the weather was as I drove over the Yorkshire Moors, picturing Cathy and Heathcliff running for the shelter of a tree.

The sat nav kindly sent me around the block a couple of times before I found the car park, but I found it and I got easily parked. I decided to get the pram out of the boot as I had an idea that the village wasn’t far and I’d get the chance to scope it out with the pram and come back to the car if I needed to. The Tourist Information office advised me to ditch the pram, even offering to let me leave it in their shop. I took it back to the car, got Freya into the carrier with surprising ease and walked back into the village.

I’ve been feeling quite tearful and overwhelmed by things these days, and today was no exception. I had tears in my eyes as I walked through the village, chatting to Freya held close against my chest. We arrived at the Parsonage Museum (which has its own car park, doh!)  and went inside. The man on the door was lovely and chatted to us before we had a chance to move on. He thought that it was lovely that we had named Freya after Emily, and that I had taken her there specifically to make some memories.  I walked slowly and thoughtfully around the house, taking everything in. I was particularly taken by the artefacts, especially the portable writing desks belonging to Charlotte and Emily with all their trinkets. Makes you feel closer to them somehow, which is strange because they died so long ago. One of the curators came over to speak to Freya and remarked that she was about the same age that Anne Brontë was when the family moved to Haworth, and said how nice it was to hear a baby in the house.  She pointed to a room across the hall, labelled ‘Charlotte’s Room’ and said that Anne would have probably had that room when she was brought there and that it might be a nice place for me to look with Freya. It was in fact the room in which Charlotte Brontë passed away, and I felt an incredible sense of sadness as I stood looking at a painting of her above the fireplace. I stood there for while, Freya stared too. And as I rocked from side to side taking the picture in, Freya drifted off to sleep.

IMG_0826I finished off the tour, and bought a few things in the gift shop including a copy of Wuthering  Heights which I planned to write an inscription in for Freya. I don’t know why my heart felt so heavy as we left. Moments like these with Freya are more special to me than any other moments in my life. I know that might sound bad because I have a husband and two other children; they are special to me too. But time with them tends to be moments of madness, of getting ready for school, of bedtime routines. I have become quite accustomed to just being with Freya. We are like two halves of a whole who are only truly content when we are linked together in some tender moment. She stares, so intently sometimes that I wonder if she can see into my soul. And I’m reminded of an earlier post, “cleansing the soul” that I wrote before all this, before KD.

I am hoping that the dark cloud that follows us whenever we are trying to make new memories is something temporary, a symbol reminding me of the trauma we have been through together. Perhaps when I’ve started to get some support with how I’m feeling that grey cloud will start to dissipate and we will be allowed to have sunny days without the threat of rain.

A quest for peace

Posted on by Bluemama

Today I accepted that I might need some support to move on from this thing. I don’t mean forget, I mean how could I ever forget what we’ve been through? And I would never want to shut KD out of my life completely, because I feel like I can be of use somehow in raising awareness of this elusive disease.  But I do need to work out how to process it all.

I have spent the last 3 months or so immersed in the world of Kawasaki Disease; at least the world that I can access through medical journals and the Internet, tirelessly reading, learning and challenging. And that’s all great, but it only serves to distract me from the fact that I am still a mother, and I’m a mother with a fracture in my heart.

I am surviving on very little sleep. I stay up until the early hours of the morning, sometimes researching, other times just thinking. And thinking. And thinking.  I stare at photographs of Freya and I feel grief, and then I feel guilt because she’s still here isn’t she. I’m not sure how long it takes for sleep to take me when I finally do go to bed, it feels like I am laid awake all night. I hear every sound that Freya makes, from the familiar sound of her breathing or when she does that little grunt under her breath, to all the unfamiliar sounds that strike fear into my very soul; what was that? Did something happen??  And then there’s the silence, when I lie awake holding my breath, waiting for her to make a sound, any sound, to reassure me that she’s still ok. For those seconds I lie frozen, wanting to reach across and touch her to be sure, but too afraid. It’s irrational I know. The risks she faced at the beginning of this journey are no longer a source of constant worry. I know every new mum experiences degrees  of worry about losing their child. I don’t have the monopoly on those fears. But I feel sick with anxiety from the thought of losing her.  Thoughts are not facts, Joanne.

I think on the whole I have handled this thing pretty well. In all honesty I’m surprised I haven’t cracked up completely. I think there must be a strength inside all of us that we never find out until we are faced with something big.  But you can’t be strong always. I thought that by writing my blog I would exorcise a few ghosts, but it doesn’t seem to be working as I had expected.  Maybe because the blog doesn’t answer me, so my words are left hanging in the air like a dense fog.

Most days I’m good. I’m not a neurotic parent, watching over Freya 24/7.  I don’t put her up in her room for naps like I did with my other children, allowing her to fall asleep on her playmat when she’s tired herself out. To be fair, though, she’s so content she can be playing one minute and sleeping the next. But I do take her up to bed in the evening, and she sleeps in her cot in our room from 6pm until 7am the following morning, later if I let her.  Of course either me or my husband tiptoe upstairs at regular intervals throughout the evening, but that’s normal. I get on with the housework, or I hang up the rubber gloves and play; depends how clingy Freya is feeling at the time. We get out and about, I enjoy little trips out with her.  We went to York on the train the other day to see my niece who has just started at University there. I am my most content when I’m mooching about, pushing my little Peanut in her pram. But every now and again, more frequently these days, I am aware of a dark shadow following me around and I am transported back in time to those weeks in the hospital. Every day I relive a part of our journey and the tears fall silently down my cheeks, sometimes completely unprompted, other times triggered by a tender moment with Freya, a conversation, something on TV.  Tonight I watched a programme where a 3-month old baby was put to sleep for surgery, and the tears appeared within a nano-second. It’s still so raw.

I thought I could handle it alone. Of course I was going to be feeling like I do after this ordeal. But I thought that every appointment that brought good news would take the pain away. But it doesn’t and I so want to celebrate Freya’s triumphs over Kawasaki Disease.  I need to package the last few months up into an easily accessible box and store it away in the corner of my mind where the unpleasant boyfriends and school bullies live. But right now I’m on a ride that I can’t get off. I have to find some peace with KD; need to accept that no amount of hating this disease and the uncertainty and lack of concrete information that goes with it is going to change the fact that it bulldozed its way into our perfect little life and left its mark on my precious girl.

Kawasaki and I are not friends, nor will we ever be. All I can hope is that over the coming weeks, with whatever avenue I choose to help me get out of this kawahell, I can focus more and more on a bright future than on the dark and dismal past of the last few months. Here’s to a day when I might look at Freya without being haunted by memories I wish I could forget.