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A Letter to Parents of Kawasaki Disease Heart Warriors

Dear Parent of a Kawasaki Disease Heart Warrior,

I know how you feel.  I know how scary this all is.

Maybe you have just received the news that your little (or maybe not so little) one has coronary aneurysms, because of Kawasaki disease.  What does that even mean!?  Is your child going to live with this condition for the rest of his life?  Is your child going to live to see his next birthday?

Panic may have set in, but hopefully you have calmed yourself enough to listen carefully as you receive the first set of many medical instructions that will follow.  You may be told that your child needs to start taking blood thinners right away, otherwise he may develop a clot in one of his aneurysms.  A clot in his heart?!  That can't be good.  Perhaps no one mentions the word "heart attack," but later on you may realize that this is actually what the doctor is saying without actually saying it.  Fast forward many years and your child's cardiologist may still continue to use…
Recent posts

I lie every day -- and I'm not sorry

Back in April, held a writing contest based on the theme, Truth or Lies: What I've Never Said Before.   This was my 600 word submission:

I lie to my son every day.  I teach my sons that lying is wrong, but I don’t tell them that sometimes we need to finesse the truth and be selective with the details we share.  I know it’s all the same, which makes me a hypocrite -- but I’m not sorry.

For the past four years, I have told my son that his heart is special.  So special that he needs to receive blood thinning injections twice daily, along with various other medications.  So special that he needs to visit SickKids monthly for blood tests and every three months, so the doctors can check his heart.  I don’t tell him that the coronary arteries that supply blood to his heart muscles have giant aneurysms, as a result of him having Kawasaki disease at the age of three.

Once a year, I tell Isaiah that he needs to go for his “special sleep” at the hospital.  He handles it like …

What it Means to be a "KD Parent"

In the past I have often referred to our "new normal" -- the way in which we now live our lives, since Isaiah was diagnosed with coronary aneurysms.  Over time, this "new normal" has just become our normal.  Isaiah's scheduled medications are a daily reminder of his condition and Kawasaki disease seems to be ever present in my mind, but its effects have slowly faded to the background and just become part of the fabric of our lives.  I am often asked, "How is Isaiah doing?" and find myself automatically answering with a standard, "Great.  Everything is stable."  I do not feel it necessary to go into detail about Isaiah's latest test results or the health effects we deal with as a result of his multiple blood thinning medications.  In fact, I have become so effective at "glazing over" these details and get caught up in dealing with the chaos of every day life, that sometimes I actually forget what we are truly living with....unt…

Why everyone needs to know about Kawasaki disease

January 26th, 2015 marks the 5th annual Kawasaki Disease Awareness Day.  I know many parents of KD survivors (myself included) and survivors themselves who are KD advocates and raise awareness on a daily basis.  I am sure there are people that wonder why we are so passionate about this cause, and given that it is considered rare, why it is such a big deal.  These are the reasons why everyone needs to know about Kawasaki disease:
1. It is often misdiagnosed.  Many of the symptoms associated with Kawasaki disease are also associated with numerous other childhood illnesses, making it difficult for doctors to determine the true cause of the symptoms.  To complicate matters even further, the symptoms may not show up at the same time (as in Isaiah's case) or many of the symptoms may not show up at all (incomplete KD).  Currently, there is no diagnostic test for Kawasaki disease.  It is typically diagnosed using a combination of clinical features, blood work (looking for elevated levels …

The truth about Isaiah

It has been three years since Isaiah first had Kawasaki disease and I have told his story more times than I can remember.  His Kawasaki disease story has been told to friends, to family, to acquaintances and to people I have just met and it has been told in various forms: detailed, long version, short, clinical version and many variations in between.  As hard as I try to make the details clear, I think many people still do not fully understand Isaiah's condition.  In an effort to clear up any misconceptions, I have put together this list of FAQs to reveal the truth about Isaiah.

Does Isaiah still have Kawasaki disease?
No.  Kawasaki disease is a self-limited form of vasculitis.  According to Dr. Jane Burns, a KD specialist (as posted by the Kawasaki Disease Foundation): "The inflammation and host immune response is intense but short-lived. Recovery from the acute illness is complete and symptoms and signs resolve completely."  Isaiah had Kawasaki disease twice, but both …

The bypass

This post is long overdue.  To be honest, I was not sure if I was ever going to write it.  I have avoided it until now, because I did not want to think about the anxious days leading up to Isaiah's bypass, the difficult days after his surgery or the excruciatingly painful day of the actual operation.  These were the darkest days of my life.

In most of my posts I attempt to weave in a theme or drive home a main point, but this time I will not even attempt to do so.  I simply want to share part of my family's experience with you.  I am sure there will be many details that have been forgotten due to the chaos of those days and others that have been blocked out by my heart and mind.  Please forgive any errors I may make with regards to medical details or terminology.  Keeping all that straight can be a challenge even on the best of days.

Friday, April 5th, 2013 - Devastating news Isaiah finally went in for his cardiac catheterization on the Friday. He was unable to have it done t…

No such thing as too much information

Since Isaiah's Kawasaki disease journey began, there have been many things I have learned. One lesson that has become a reoccurring theme lately is when it comes to your health, or that of a loved one, there is no such thing as having too much information.

Cardiac MRI Isaiah had a cardiac MRI done in mid March to further investigate his heart function.  Although he has an echocardiogram done every 3 months, it is my understanding that he will require a more complete diagnostic test at least once a year. Last year he had two cardiac catheterizations done, but our cardiologist decided on a cardiac MRI this year, as it would be able to give us an equally good understanding of the status of Isaiah's heart.  I was thrilled by this news, as the MRI is non-invasive, which would mean no incision to worry about and virtually no recovery time, except from the effects of the anesthetic.

The results of the MRI confirmed what the cardiologists had suspected from last year's cardiac ca…