Isaiah's Kawasaki Disease Journey

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 ...

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, bloo...

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 Frida...

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon. I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week. Symptoms Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab ...