Isaiah's Kawasaki Disease Journey

This pandemic has been hard on everyone.  Even people who are self-proclaimed homebodies and introverts are feeling the strain.  I get it.  Where I live, we have done a fairly good job of flattening the curve and things are slowly starting to reopen.  Life has by no means gone back to normal, but people are anxious to return to parts of their lives that they have missed over these past few months.  Nothing is better than seeing your friends and family in person, instead of a video version of them on a screen.  Getting to sip a drink on a patio or play a round of golf — summer fun that we are all deserving of.  In-person social interaction and a taste of life before the pandemic are all good for our spirits and mental well-being. However, for our family, the decision to resume any of our pre-COVID activities will be weighed extremely carefully.  My 11 year old son has acquired heart disease due to coronary aneurysms he developed as a result ...

At the very start of this global pandemic (if fact before it was even declared an actual pandemic), I know that many Kawasaki disease parents were already beginning to panic.  As news out of China and then Europe started to ramp up about a novel coronavirus, KD parents were hotly discussing it in the online support groups and raising their concerns with their doctors. Reports that those with underlying health conditions may have a more severe case of the coronavirus left many KD parents uneasy and then reports that COVID-19 may be causing cardiac damage made all KD parents take pause.  Things then went from bad to worse when news from the UK surfaced about an inflammatory illness that was emerging in children, which was likened to Kawasaki disease.  At this point it was all out pandemonium in the online Kawasaki disease parent and patient community. I know that Kawasaki disease experts and organizations have done their best to provide reassurance and comfort bas...

To Whom It May Concern, Hello old high school acquaintance on Facebook, who usually scrolls past me on their newsfeed.     Greetings to the mom from school who knows my son has a medical condition, but is too afraid to ask me about it.   Dear second cousin Judith, whose mom told her that my son was really sick, “but thank God he’s okay now.”   To my neighbour up the street, to the kindergarten teacher at the school, to the mom sitting beside me at the doctor’s office and to the dad sitting beside me at swimming lessons. This letter is written to anyone that has a child in their life that they care about.    You may have heard of something called Kawasaki disease…but probably not.   Contrary to the name, it has nothing to do with motorcycles.   In short, Kawasaki disease (KD) is the leading cause of acquired heart disease in children in developed countries.   You may be thinking, “Acquired heart disease in children?   What d...

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 cardiolo...

Back in April, YummyMummyClub.ca 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 ...

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....unti...