Sharing our story to raise awareness of Kawasaki's disease

On October 19th, 2011 my 2 year old son, Isaiah, was diagnosed with Kawasaki disease. Life has not been the same since. I want to share his story to help raise awareness of this disease. We were fortunate that Isaiah was diagnosed and treated for his illness. However, Isaiah developed multiple aneurysms in his coronary arteries as a result of Kawasaki disease. At the age of four, Isaiah underwent double bypass surgery. If left undiagnosed, this disease can result in death.

If I can help even one child by telling our story, then I will have done right by my son. He is such a brave, strong boy and I know that when he grows older he will be glad that I shared his story.

Thursday, June 9, 2016

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 a champ and enjoys choosing the flavour for the sleep mask and laughs at me when I put on the “marshmallow suit” to take him into the cath lab.  I don’t tell him that I am scared to death of what could happen while he is in there, or what results the doctors will share with me when the tests are complete.
I tell my son that the scar that runs down his chest is from the special sleep he had when he stayed in the hospital for many days.  He does not recall much about that time, except receiving the “wow” bead for his bravery necklace, because he was such a good patient while they pulled the drainage tubes out of his chest. I don’t tell him that we allowed the doctors to open up his chest and stop his heart, so they could perform a 10-hour long, double coronary artery bypass operation when he was four years old. 
I tell Isaiah that he is still too young to go downhill skiing with his dad and older brother, so he and I will do cross-country skiing instead.  I praise his amazing spiral throw, but suggest playing tennis instead of taking up football.  I don’t tell him that since he is on multiple blood thinners, he is not supposed to be playing contact sports or engaging in activities that could result in a head or internal injury, as these could be fatal.
Isaiah is older and smarter now.  He is starting to notice the inconsistencies in my stories.  Recently, he asked me why he needs to take all his medications. I responded that they help his heart work better.  He then astutely asked, “Why would my heart need help if it’s special?”  I know that one day the lies, omissions and manipulation of the truth will have to stop.  One day, he will need to know the details of how Kawasaki disease turned the healthy heart he was born with, into one that is constantly at risk of forming blood clots and areas of calcification that could result in a heart attack.  But today is not that day.  I am confident that Isaiah is strong enough to handle the truth when it is revealed, but for now I choose to bend the facts and discreetly steer his choices in order to avoid using words like “can’t” and “shouldn’t.”  I want my son to feel that he is capable of doing all that he wants to achieve.  I do not want his acquired heart disease to define him.  So, I lie to my son every day -- and I’m not sorry. 
When I first became a parent to an extremely fussy and colicky baby, I quickly realized that despite what the baby books, written by so-called experts, say and despite the well-meaning advice from older relatives who have been parents many times over, families need to do what is best for them, their children and their current situation.  Our decision to "lie" is what we have determined is right for our son at this moment in time.  I know there will be many people who disagree with the approach we have taken with Isaiah and would argue he needs to be more aware of his condition, so that he can "deal with it" and be cognizant of the dangers he is faced with.  What people need to remember is that Isaiah is seven. Seven years young.  He is going to run and jump and trip and fall, no matter how many times you tell him to be careful.  Because that's what seven year olds do.  Why would I burden him with thoughts of internal bleeding and the possibility of his heart stopping?  These are not things a seven year needs to worry about every day, especially when his parents already do enough worrying for him.  Although, this is Isaiah's reality, he will deal with it when we feel he is ready.  In the meantime, we have equipped the adults around him, who are in charge of his care, with the necessary information to cope with issues that may arise.  We do as much as possible to keep Isaiah safe and healthy.

This is not to say that Isaiah is completely oblivious to his condition and the care he requires.  He is the first to remind me when the clock has passed 8:30 and I have not administered his injection.  He is quick to point out when I have erroneously given him one of his evening pills in the morning.  Isaiah knows to tell us if he has any pains in his chest area and can rate his pain on a scale from one to ten.  He is self aware without knowing the details of why he needs to be, and for now, that's fine by me.

It is actually quite ironic.  I try to raise Kawasaki disease awareness as much as possible, am a proud member of Kawasaki Disease Canada, and Isaiah has heard the term "Kawasaki disease" countless times, but yet he still does not know that this disease changed his life forever.  But does it really matter right now?  Isaiah does not remember what his life was like before KD and detailing for him the illness that gave him his "special heart" will not change his reality.  For now, he is happy to be a "regular" seven year old, but with a heart that requires a little extra attention.  He is happy just to be Isaiah.  So for now, I will continue to "lie," because why would I want to mess with that?

Isaiah checking out the model heart at one of his heart clinic visits.
[Side note: ran a great Kawasaki disease article in recognition of Kawasaki Disease Awareness Day in January 2016.  Isaiah was mentioned, along with the children of two of my fellow Kawasaki Disease Canada board members. You can read the article here. ]

Wednesday, January 20, 2016

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....until I receive a jolting reminder.

These past few months the reminders have come in different forms.

Back in September I received a message from a KD mom that I had become friends with online.  Her son, Benjamin, is the same age as Isaiah and also has multiple giant aneurysms.  Bren-Ann messaged me to let me know that Benjamin had recently suffered a heart attack, which caused significant damage to his left ventricle. Due to the new damage and his existing giant aneurysms, the doctors were now considering him as a candidate for a heart transplant.  I was devastated by this news.  Benjamin had just gone through open heart surgery in January to replace his aortic valve, which was damaged due to inflammation from Kawasaki disease.  How much more could this sweet boy and his family endure?  Benjamin recently travelled all the way from Calgary to Toronto to have a cardiac cath done at SickKids Hospital.  We are hopeful that the doctors there will be able to find an alternative course of action.

In November, I received some unsettling news from my very first "KD parent friend."  Pauline's son was diagnosed at 18 months old and had developed multiple giant aneurysms.  He underwent bypass surgery at 14 years old, but still had a giant aneurysm which did not require intervention at the time and had remained stable for years....until now.  Michael, now 21 years old, was having a cardiac cath performed and the results appeared to show multiple clots in his aneurysm.  I was distraught for his family -- the day they had been dreading had finally come along, but I was also saddened for Isaiah.  The fact that Michael's aneurysm had stayed stable for so long was a source of comfort to me.  It gave me hope, that contrary to what medical history would dictate, perhaps Isaiah's aneurysms would remain stable for a long time and he would never require additional surgical intervention.  With this news I quickly came crashing back to reality.  Fortunately, it turned out what the doctors thought were clots, were actually shadows caused by the dye swirling around in Michael's giant aneurysm.  I was so relieved for Michael and his family when I heard the good news.  Michael continues to be an inspiration to us, not only medically, but also because of the strength, spirit and determination he has exhibited throughout the years. He has been actively involved with the Kawasaki disease research team at SickKids, where he was a patient for many years, and is currently studying to be a nurse in the cardiac ward.

Two days after receiving Michael's news, Isaiah woke up in the middle of the night with a nosebleed. Nightly nosebleeds are a somewhat regular occurrence, since he is on so many blood thinning medications.  However, this nosebleed went on for quite awhile and eventually Isaiah began to complain that his stomach was hurting him.  I took him to the bathroom, but before we could make it to the toilet, he vomited on the bathroom floor.  There was a large pool of dark red blood on the white bathroom tile.  This was not the first time Isaiah had vomited blood after a nosebleed, as the blood tends to the drip down his throat and not just out his nose.  However, seeing all of that blood caused me to worry about internal bleeding.  Perhaps Isaiah had gotten hurt at school and sustained an internal injury that I wasn't aware of.  I quickly asked him if he had hurt himself at school or if anyone had hit him or run into him.  All "no's."  I checked his abdomen for any signs of bruising, but didn't see any.  In the end, it turned out that it was just a nosebleed that had resulted in Isaiah swallowing a great deal of blood.

Blood Isaiah vomited after his nosebleed.

These "reminders" have reinforced to me what it actually means to be a "KD parent."  It means remembering to give your child their medication on time every day and trying really hard not to panic the one time you forget.  It means always remembering to order your child's medications when they are running low and making sure you always have extra on hand. It means ensuring your child has a level done when they are supposed to and trying not to worry too much in between levels whether or not they are on target. It means being ready to deal with nosebleeds at any given time, day or night.  It means staying calm even if your child vomits blood or has blood dripping out of his eyes during a nosebleed.  It means having a Band-Aid (or two or ten) in your purse at all times.  It means having your heart skip a beat every time you see your child's school's phone number come up on call display and then being relieved to hear that they are just letting you know that he is in the office with a nosebleed.  It means panicking when your child complains of any type of pain in their torso and having them point to the exact area, to ensure it is not in the area of their heart.  It means excessively worrying every time your child has a fever and constantly checking for rashes, in case it is a rare second (or third) occurrence of Kawasaki disease.  It means finding random bruises on your child's body daily and worrying that one day a stranger will call child services on you.  It means steering your child away from sports like hockey and football and encouraging them to pursue swimming or tennis.  It means holding your breath when your child climbs up the jungle gym at the park and resisting the urge to climb up right behind him, because "he's a big boy now."  It means making sure your child tells you (or the teacher) if he bumps his head, even by accident, and making sure he knows he won't be in trouble, "no matter what."  It means putting a helmet, knee and elbow pads on your child when he is learning to ride his bike, but really wanting to surround him in bubble wrap instead. It means giving your child the freedom to grow and spread their wings, but all the while really wishing they would stay little so you could keep them close and protect them forever.

More than all these, being a KD parent means living with uncertainty.  The reality is that we never know exactly what is going on inside our child's body.  Despite the frequent echos, ECGs, MRIs, CT scans, stress tests and angiograms, we cannot see everything that is happening at all times. We worry between each test and worry even more the day of these tests, wondering what the results will be today.  As much as we try to prepare ourselves for whatever comes, we never really are.  We find tremendous comfort in other KD parents and the stories they share, but we know that every child is different, so their story may not become our story.

But above all, being a KD parent means having hope and trust.  We trust in our children's doctors and hope they provide our children with the best care possible. We hope the future brings new medical developments that will improve our children's quality of life or maybe even one day save their lives.  We hope our children's bodies find a way to heal themselves or ways to cope with the devastation that Kawasaki disease has left behind.  We put trust in the greater powers that be (whichever you believe in) and hope they will watch over our children.  We put trust in our children, that they will continue to be strong and persevere through all that is to come.  We hope that we can be as strong as our children, because we know they need us to be.  Pauline and Bren-Ann showed so much strength and composure when I communicated with them during their recent ordeals.  I am sure that inside they were "freaking out" and wanted to cry and scream, but they didn't.  Instead, they dealt with things moment by moment, put trust in the experts around them and received the strength they needed from their children. Because that's what KD parents do.

I leave you with something Bren-Ann wrote to me that stayed with me and felt like it encapsulated with it means to be a KD parent:  "So we go home and carry on. He returns to school and we try to be grateful for each day..."

Thursday, January 22, 2015

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 of certain components) and echocardiography.  Unfortunately, many children are misdiagnosed and sent home before these tests can even be run.  

(For more information on why KD is so commonly misdiagnosed, including links to the supporting scientific articles, please visit this great blog post by a fellow KD mom:

2. There is a highly effective treatment, but there is a small window of opportunity for it to be effective.  Although it has not been determined what causes Kawasaki disease, the good news is that a highly effective treatment is available.  Treatment with intravenous immunoglobulin (IVIG) typically "relieves acute inflammation and has been shown to reduce the rate of coronary aneurysms from greater than 25% in untreated patients to 1-5% in treated patients. Maximal benefits are seen when IVIG is given within the first 10 days of the illness." (According to Medscape.)  This means that if a child is diagnosed in a timely manner and administered IVIG within the first 10 days of having KD, their chances of developing coronary complications is greatly reduced.  Kawasaki disease can resolve on its own, without IVIG treatment, but the risk of the child developing coronary aneurysms is greater.  This means that timely diagnosis is very important!

3. It can cause permanent heart damage.  Kawasaki disease causes inflammation in small to medium-sized arteries, but the inflammation is most pronounced in the coronary arteries.  The coronary arteries are the arteries that supply blood to your heart muscles, so that it can contract and pump blood throughout your body.  In most cases, the inflammation in the arteries resolves over time, as the child recovers from KD.  However, in some cases the inflammation can cause permanent coronary aneurysms, which are areas where the artery wall balloons or bulges out.  This ballooning of the artery causes the blood to swirl in those areas and increases the risk of formation of blood clots.  If a blood clot develops it can result in blockage of the artery and a heart attack.  Children that develop permanent aneurysms face a lifetime of blood thinning medications (with the associated activity restrictions), frequent medical exams, invasive testing, the always looming possibility of surgical intervention and constant uncertainty about their health. Tragically, I know of children that have passed away as a result of the aneurysms caused by Kawasaki disease, because they were never diagnosed or diagnosed too late.

The bottom line is that KD can result in serious heart damage and even death, but thankfully a treatment does exist to reduce the risks of this happening. However, the correct diagnosis needs to be made before this treatment can be given.  In order to receive the correct diagnosis, you need to know the symptoms.

The common symptoms of Kawasaki disease are:

Fever that lasts for five or more days
Rash, often worse in the groin area
Red bloodshot eyes, without drainage or crusting
Bright red, swollen, cracked lips, "strawberry" tongue, which appears with shiny bright red spots after the top coating sloughs off
Swollen hands and feet and redness of the palms and soles of the feet
Swollen lymph nodes in the neck

It is important to remember that all of these symptoms may not be present or may not be present at the same time.  If you child has a prolonged fever and two or more of these symptoms, be sure to ask your doctor if it could be Kawasaki disease.

Many little hearts can be saved by simply educating yourself and others about Kawasaki disease.  Kawasaki disease is highly treatable and just knowing the symptoms and voicing your concerns could save your child from living with acquired heart disease for the rest of their life. By sharing this information with others you may even save a child's life.  In this case, knowledge really is power.

Tuesday, October 21, 2014

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 times he recovered from it and it is not an ongoing illness that he is living with.

If he no longer has Kawasaki disease, why does he still have issues with his heart?
Isaiah's condition is referred to as acquired heart disease. While Kawasaki disease and its symptoms may be temporary, it can result in lifelong damage.  Kawasaki disease causes inflammation of the blood vessels throughout the body, including the coronary arteries, which supply blood to the muscles of the heart. Due to this  temporary inflammation, Isaiah's coronary arteries developed permanent aneurysms, which are areas where the artery wall balloons or bulges out.  This ballooning of the artery causes the blood to swirl in those areas and increases the risk of formation of blood clots.  If a blood clot develops it can result in blockage of the artery and a heart attack.  Isaiah takes multiple blood thinning medications to reduce his risk of developing a blood clot. Even with these medications, one of Isaiah's arteries still developed a clot and is no longer delivering blood to his heart.  Fortunately, some arteries referred to as collateral arteries, have developed to compensate for the blockage.  Past tests also indicate that some of Isaiah's heart muscle cells have died due to the lack of blood caused by the clot, which has resulted in reduced heart function.

[Here is the link to a video the Kawasaki Disease Foundation created that clearly explains the effects of KD on the heart:]

Is this something he will grow out of?
Unfortunately, this is not likely.  Some children have been known to "grow into" their aneurysms as they become older, but Isaiah's aneurysms are classified as "giant" and this is an unlikely possibility for him.  Scar tissue can develop which would fill in some the space of the aneurysm, but the blood vessel will never be completely normal.  However, in some cases scar tissue will continue to form and can result in a narrowing of the vessel, which poses a risk as it may also cause a blockage.  Isaiah's arteries have already developed this scarring, which resulted in a blockage of 90% in one artery and prompted his double bypass surgery last year.

Can Isaiah do the same physical activities as other kids his age?
Despite his multiple aneurysms, one completely clotted artery and narrowing in his other arteries, Isaiah continues to have fairly good heart function.  He is able to run, swim, dance, jump and do any other cardiovascular activity that may raise his heart rate.  Fortunately, his heart is able to handle the stress of these activities.  In fact, our cardiologist constantly encourages Isaiah to get lots of exercise and stay active in order to keep his heart healthy and encourage further growth of his collateral arteries.  The real issue lies not with his heart function, but with his anticoagulation (blood thinning) therapy.  As the name implies, blood thinning medications cause blood to be thinner and reduces the blood's ability to clot.  While this is important in preventing a clot from forming in Isaiah's coronary arteries, it can be dangerous in cases of accidental injury.  Any head or internal injury can be potentially fatal, as Isaiah would be at greater risk of bleeding in his brain and organs.  This means that Isaiah should not be playing any contact sports, such as hockey or football, or participating in activities with a high risk of head or internal injuries, such as downhill skiing.  So far, these restrictions have not been an issue and we try to let Isaiah just be a "regular kid" as much as possible and he has the bruises to prove it!

Since he had his double bypass, does that mean everything is fine now?
I would love to say that the answer to this is "yes," but sadly that would not be completely true.  Since his bypass in April 2013, Isaiah's health has been excellent.  His echocardiograms have shown good heart function and this recent cardiac catheterization and MRI showed no changes since last year.  All in all, this is fantastic news, but we have learned over the last three years that the heart is unpredictable.  Our hope is that Isaiah's heart function continues to be good and that no new issues arise for a long, long time.  However, we know that there is always the possibility of a clot developing, or narrowing to occur because of additional scar tissue or even the possibility of his bypass graft closing off.  We do not know what the future holds for Isaiah's health or if he will require additional surgical intervention one day.  What we do know, is that right now he is a happy child who wants to experience all that life has to offer and approaches each day with enthusiasm.  So perhaps the true answer is that right now everything is fine after all.

Wednesday, November 13, 2013

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 the day before due to a sudden and intense headache.  When the cath was over, one of the cardiologists we know came to speak to us about the results.  I cannot clearly recall much of the conversation that followed.  The doctor explained that Isaiah's left marginal artery had developed significant narrowings due to scarring within the artery.  Arteries damaged by the inflammation caused by Kawasaki disease heal from the inside out.  The artery walls develop scar tissue, but if too much scar tissue develops it may result in narrowing of the arteries, referred to as stenosis.  Based on the results, he suspected that Isaiah would need to have bypass surgery to compensate for this narrowing.  Isaiah's right coronary artery was already blocked due to a clot, so if we did not do the bypass his heart would essentially be working with only one major artery.   The doctor explained that the team would meet on Monday to discuss Isaiah's case further before making a decision, but he had decided to admit Isaiah, as he would be taking him off of his ASA and Plavix in preparation for the possible bypass.  Isaiah would have to stay at SickKids over the weekend on a constant heparin infusion.

We were in disbelief.  We knew the day might come when Isaiah would require bypass surgery, but we never thought it would be that day. I was feeling a range of emotions: fear, anger, despair, sadness.  I felt them all, but they were wrapped up in a fog.  I have heard people speak of out of body experiences and I am sure that afternoon I experienced something similar.  I felt as if this was not happening to my family and that I was merely watching someone else have to deal with it.  I quickly tried to snap out of it.  I needed to be strong for Isaiah and the rest of the family.  We had already been through so much and we could surely get through this, but it was going to be the hardest challenge yet.  That afternoon was the first time I openly cried at the hospital since Isaiah was originally diagnosed with aneurysms.  I feared that my resolve to remain perpetually optimistic was going to be put to the test.

Saturday, April 6th, 2013 and Sunday, April 7th, 2013 - The weekend of waiting

The weekend we spent at SickKids was surreal.  Isaiah was not at all phased by having to stay at the hospital and did not question us regarding it.  Instead, as always, he went with the flow.  He thoroughly enjoyed having the Wii set up at his bedside around the clock, built towers taller than he was with daddy in the playroom and even engaged in some very spirited games of bowling with one of the hospital volunteers.  Isaiah's boisterousness was sharply contrasted by many of the recovering cardiac patients who shared our ward and I kept wondering how could this bundle of energy really require bypass surgery?  The constant heparin drip and ECG monitor that needed to be attached to Isaiah at ALL times, as well as the visits from family and friends that required us to explain the situation over and over, were strong reminders of how serious this really was.  While I knew it was highly unlikely, I wished and prayed that the team would meet on Monday and realize that Isaiah's status was not as precarious as they had originally thought and that a bypass would not be necessary at this time.
Isaiah hanging out in the hallway of our floor.
His ECG monitor could not transmit any further than here,
so we were not allowed to leave the floor.

Bowling with a telemetry pack and IV line is no easy feat.

Caught eating bacon in the cardiac ward.
Once in awhile is okay, right doctor?

Monday, April 8th, 2013 - Bypass confirmed

Isaiah's primary cardiology team came to see us early on Monday morning.  I could tell from the looks on their faces that the news was not good. The team had in fact decided that the best course of action for Isaiah was to perform double bypass surgery.  Isaiah's cardiologist explained that the surgeon would be using the internal thoracic artery (also known as the internal mammary artery) to bypass two portions of Isaiah's LMA.  The plan was to have the surgery done the very next day.  Everything was moving at such an alarming pace.  We worried that the emphasis we had placed on Isaiah's complaints of chest pains had pushed the doctors to make a rash decision.  A four year old can not be expected to accurately describe the pain he is experiencing.  However, we were reassured that this decision was made taking everything into account: the physical evidence from the cardiac cath and the MRI, as well as Isaiah's symptoms.  We asked numerous questions and received answers for all of them, but it was still hard for us to accept that this is what needed to be done.  Did we really have any other choice?  I recently read an article in which the author, who happens to be a doctor herself,  likens these decisions to allowing the medical system to guide your child across a glass bridge.  She writes: "The medical system beckons, “It’s safe. We’ll guide your child across the glass bridge.” But your emotions, your life experience, your gut, and your eyes can only see the sheer drop." This is exactly how it felt. We knew that the doctors were making the best decision possible for Isaiah and were so fortunate that the team was made up of renowned pediatric cardiologists and surgeons, arguably the best in Canada, if not the world.  However, even with all of these great medical minds, as a parent you are taking a leap of faith.  You are entrusting your child, your most precious gift, to a group of doctors and relying on them to do everything humanly possible to "make him all better," but unfortunately, nothing in medicine (or life) is guaranteed.

The child life specialist came to see Isaiah, gave him a little doll and showed him the drainage tubes and attached drainage bulbs that he would have when he woke up from his "special sleep."  We did not talk to Isaiah in detail about how this special sleep would be any different than previous special sleeps that he had had.  He has always been the perfect patient and we did not want to change that by scaring him or making him anxious.  Late that evening, the surgeon came to speak to Mike personally.  I was not at the hospital at the time, so I only received the information second hand.  The surgery was estimated to take approximately 5 to 6 hours and would be "on-pump," meaning the beating of Isaiah's heart would be stopped and a heart-lung bypass machine would take over for the heart and lungs, allowing circulation of blood throughout the rest of the body.  The thought of Isaiah's heart being stopped engulfed us in trepidation in of itself, but we also worried about possible long-term cognitive effects from the cardiopulmonary bypass machine. But again, we had to do what needed to be done and take that leap of faith, entrusting the doctors and the wonders of modern medical technology to take care of our son.

Tuesday, April 9th, 2013 - Bypass day

Mike had stayed with Isaiah overnight, so I headed down to the hospital early in the morning.  When I went to his inpatient room it was empty.  I hurried down to the second floor to catch up with them and luckily got there just before they entered the pre-surgical area.  For whatever reason, Isaiah was being distant from me and wouldn't give me a hug.  I was heartbroken.  It was as if I needed him to support me, instead of me supporting him.  I knew he was tired and did not grasp the seriousness of the situation, but it was still hard for me to accept that he would not provide me with the affection I so desperately needed at that moment.  The anesthesiologist came to examine Isaiah and talk to us.  Before I knew it, they were ready to take him away.  For all of Isaiah's other procedures I had always been allowed to carry him into the procedure room and stay with him until he drifted off peacefully, like the perfect patient, under the spell of the magical bubblegum-scented  anesthetic.  This time was different.  I did not even ask if I could accompany him and no one offered.  They just began to wheel him away.  As we waved goodbye, he looked confused and I remember hearing him say "What?" and then seeing the nurse speak to him with a smile on her face, in an attempt to distract him.  Then the doors closed and I could not see or hear him anymore.  There were thoughts running through my head at that moment that I did not dare to speak or acknowledge at the time, for fear that it would make them come true.  I wondered, what if that was the last time I would see my little boy alive?  What if he never hugged me again?  What if he started to cry because he did not know what was going on and mommy had not stayed with him until he fell asleep?  And what if that was his last memory?  As the tears stream down my face as I type this, I wonder how I was able to push all those thoughts away on that Tuesday morning.  I knew that I had to stay strong and not show any cracks.  Once you allow a moment of weakness it is hard to regain composure.  I could not allow my mind to race with all these negative thoughts or I would never been able to catch it.

Isaiah putting on his brave face before his surgery.

We were told to return to the waiting area after approximately 5 hours.  Mike and I had breakfast with his brother and sister-in-law and later met up with some of his other sisters.  All the while, we tried to make polite conversation and discuss matters other than Isaiah's surgery.  I knew it was on all of our minds, but we did not discuss it.  Most of the waiting was spent in silence.  When the 5 hour mark came and went we grew more anxious.  We knew that the 5 to 6 hours stated was an approximation, but every additional minute was another minute of terrifying uncertainty.  Six hours turned to 7 hours and our worry turned into panic.  The kind ladies at the volunteer desk put a call into the surgery reception, but they were unable to provide us with any information and could only relay a message to the surgical team, who would provide us with an update when they were able.  At this point I did not know what to think.  Was no news good news?  Surely if something had gone terribly wrong they would have told us something?  Or had something gone very wrong and were they now desperately trying to fix it?  The waiting was excruciating and I felt as if I had not exhaled in hours.  We received word around 4 pm that he was now off of the bypass machine, but they still had to stitch him up etc. We were told at 5 pm that the surgery was complete, but the surgeon did not come out to speak to us until 6 pm.

The surgeon brought us into a private room to update us on the operation.  First he assured us that Isaiah was fine and that his heart was functioning well.  We were so relieved, but our moment of joy was short-lived.  He then went on to tell us that the surgery had not gone as well as planned. The upper graft "did not take" and he believed that it was already closed off.  The second graft appeared to be working, but the flow was not very good.  Isaiah's arteries were too small and the damage from the Kawasaki disease made them difficult to work with, even with the microsurgery team involved. They kept starting over and trying again and again, resulting in the surgery being much longer than estimated.  Eventually, they had to stop.  The surgeon kept repeating that Isaiah's heart was still functioning well and that he was thankful for that.

We were devastated.  Leading up to the surgery and the entire time I was waiting and worrying, it never once occurred to me that the bypass may not be a success.  I worried about something catastrophic happening and that scared me to death, but I believed that it if that did not happen, then everything would be perfect.  I viewed it as all or nothing.  In my mind there was no in between.   After receiving this news the whirlwind of emotions started up yet again.  Anger. Why did this have to happen?  Isaiah was the sweetest kid in the world, but yet he could not catch a break.  It was always bad news, followed by bad news.  Why was God doing this to him?  Worry.  It was possible that the failed grafts could potentially make things worse by causing a blockage.  The bottom line was that Isaiah was no better off then he was before the surgery.  His level of risk was high enough that the doctors recommended that his bypass be done quickly and after almost 10 hours in the OR his level of risk remained the same.  Guilt.  We had sent our son across that glass bridge and he had made it to the other side, but he never arrived at his destination.  We were the ones that allowed the doctors to open up our son and perform major surgery on his heart. We were the ones that signed the papers.  We were the ones that made this decision on Isaiah's behalf.  We were the ones that put him through this for nothing.  We were the ones that would have to live with the guilt if Isaiah suffered adverse effects from the unsuccessful open heart surgery.

We were anxious to see Isaiah and were finally able to go into the Cardiac Critical Care Unit (CCCU) at 8 pm.  Twelve hours had passed since we had last seen our dear boy. The bypass was arranged so quickly, so we did not have a pre-op appointment and while I knew that Isaiah would have his chest drainage tubes I did not know what else to expect.  I was not prepared for what I saw.  My heart ached when I walked into the room and saw Isaiah lying on that hospital bed.  He had a breathing tube in his throat, a nasogastric tube in his nose, two chest drainage tubes, pacing wires, a PICC line in his neck, ECG wires and IV lines seemingly attached to every limb.  They had tied his arms down by his wrists so that he would not pull at the breathing tube or the tube in his nose.  He looked so tiny, helpless and fragile lying there, wearing a diaper for the first time since being potty trained.  This was one of the saddest moments of my life.  Although he was on a heavy dose of morphine and was unable to speak because of the breathing tube, when we spoke to him, he was able to understand and respond.  We told him that he was so brave and he slowly nodded his head.  A single tear ran down his cheek.  I didn't know if he was sad or scared or in pain or all of those things.  It took every ounce of strength I had left to hold back my own tears.  Isaiah needed to know that everything was okay, so that was not the time for tears from mommy.  As much as I would like to remove that image from my memory it is permanently embedded and every time I think of it, my heart breaks all over again.  My only comfort is that Isaiah does not recall those moments post surgery very well and hopefully over time he will forget them completely, even if I never will.

Wednesday, April 10th, 2013

Isaiah spent three nights and two days in CCCU. Those days were filled with ups and downs.  Isaiah was extubated (had his breathing tube removed) the morning after the surgery and was able to drink water and eat a rainbow of freezies. He was in a lot of discomfort and was not very alert or responsive.  His lack of responsiveness worried us and we prayed that the extended time he had spent on the bypass machine had not caused any long-term cognitive damage and that his listlessness was merely due to the morphine he was on.  We did manage to get a smile out of him and were told that if he did well that night he would be able to eat something in the morning. That evening, before he fell asleep, he asked me about maple syrup and waffles, in that order.  It seemed my boy was slowly returning to normal.
We managed to get a smile out of Isaiah the day after his surgery.

Thursday, April 11th, 2013

Two days after the surgery, Isaiah did not have the best of days. They have taken him off of the IV morphine and he experienced chest discomfort and also some nausea, stomach pain and vomiting. This made it impossible to enjoy his much anticipated pancakes and maple syrup.  However, he did have his nasogastric tube and one chest drainage tube removed. The removal of the drainage tube was extremely painful, but in usual Isaiah-fashion, he was very brave through it all. We were able to prop him in a chair, so that he could sit up for a little.  He finally managed to eat some dinner later in the day. 

Isaiah sitting in a chair for the first time after his bypass surgery.
That evening I saw a group of friends and family grieving uncontrollably outside the ICU, after what I assume to be news that a child they love had passed away or was critically ill. It was so heartbreaking and a strong reminder of how fragile life is. I later posted the following to Isaiah's Facebook page: "Please hug those you love extra tightly today. I know I did."

Friday, April 12th, 2013

Friday was a much better day for Isaiah. He was moved out of the CCCU and up to the regular cardiology ward.  He had his last drain tube removed, as well as the PICC line in his neck and pacing wires. It was painful for him, but he handled it like a true warrior, as always. He was more alert and was able to eat some solid foods. I even snuck in some McDonald's fries for him -- don't tell his cardiologist. He still complained his tummy hurt and was very tentative to move around, but he was definitely taking some positive steps towards recovery. 

While Isaiah was watching TV that day, something made him smile for the first time in a long time. Seeing this brought tears to our eyes. It felt so good to see him happy.  When things are going well in life, there are many things we take for granted. It's only when times are tough that we truly realize how important these things are in our lives. Seeing your child smile is one of those things. When your child is unable to smile, there is nothing in the world you would not give up to see them smile again.  Isaiah was recovering from a long bypass surgery and everyone was doing everything they could to make him feel better, yet he turned around and made us feel better. We needed to see that smile. It gave us hope and made all the bad things seem distant. Even though we knew he had a tough road ahead, that smile made that moment better. 

Isaiah with one his amazing nurses from CCCU
after she wheeled him up to the regular heart ward.
That night Isaiah was sharing a step-down room with other patients.  There was a young boy, about 10 years old, in the bed beside him who was scheduled for a heart transplant the next day.  I have no idea what was wrong with his heart or how long he had been waiting for a new heart, but I do know that he showed such overwhelming bravery and courage.  He was so excited for morning to come and to begin a new chapter in his life.  I never stop being amazed by children faced with adversity.  They find a way to cope and persevere beyond adults' expectations.

Saturday, April 13, 2013

We spent most of Saturday trying to get Isaiah to walk.  Moving around was painful for him due to the soreness of his chest, but it was an important step of his recovery.  When he finally took a few steps without holding my hand I was so proud.  It reminded me of when he was learning to walk during his toddler years. It was so hard seeing him in pain and and watching him struggle with simple day-to-day movements.  The thought that he may have been going through all of that for nothing made it that much more difficult to watch. 

Sunday, April 14, 2013

Just five short days after undergoing his 10 hour bypass surgery, Isaiah was given the okay to go home.  The young body is an amazing thing. While Isaiah was still weak and certainly had a lot of healing to do, he had come a long way from the limp, helpless little boy I had seen laying in the bed in the CCCU.  I had mixed emotions about Isaiah's return home.  Of course I was happy that he would be back home and our family would be reunited.  However, as far as anyone knew he was returning home at the same level of risk that he had prior to his surgery.  He had an echo done a couple of days after the surgery, which showed that his heart function was the same as it was pre-op.  While this could be seen as positive news, it did not provide much comfort.  The doctors had moved with alarming swiftness to perform the bypass, yet he was being sent home no better off than prior to this urgent surgery.  We learned later that part of the reason he was scheduled for surgery so quickly, may have been that he was already an in-patient, which allows the process to be expedited more quickly than if he had gone home and returned at another time.  However, this did little to ease our worry.  We were told that we would have to wait and see how things evolved over time.
Glad to be home!  Isaiah surrounding by many of his thoughtful get well cards and gifts. 
I was so happy when Isaiah was finally able to leave the hospital, but we left behind many children that will be at SickKids for a long, long time and some indefinitely.  I met one mother whose child had been there since she was four months old and was now just over a year.  She is not expected to go home until she receives a heart transplant. Chances are this beautiful little girl will spend many more birthdays at SickKids, but her mother, who is far away from supportive family and friends, still manages to be friendly and upbeat. People are often amazed by how I have handled Isaiah's situation, but it is moms like these that are the amazing ones.

Recovery and check up

Isaiah recovered remarkably quickly and was back to his old self in no time.  In June he had a cardiac catheterization (angiogram) and cardiac MRI done to assess his heart's blood flow and function, and to see how the graft was doing. The angiogram showed that one of the grafts is working, but the other graft was "lost," as suspected. The flow in the remaining graft is low, because the artery used is quite small, but we still considered this to be positive news. The hope moving forward is that the artery continues to grow and strengthen, allowing greater blood flow.   The MRI results were essentially the same as prior to his bypass surgery. While no change is usually considered to be good news, this means that the bypass did not make things any better (or any worse) and has not had much influence on his stability or prognosis. We are told that this is a situation in which time will tell. In the words of Isaiah's cardiologist: "In the face of uncertainty there is always hope."  And hope is what we hold onto.  We hope that the graft strengthens and that the blood flow improves.  We hope that his left anterior descending artery does not continue to narrow.  We hope he continues to develop lots of collateral arteries to help supply blood to his heart. 

A word of thanks

I would be remiss if I did not take time in this post to extend a heartfelt thank you to all those that helped us through the very difficult days surrounding Isaiah's surgery.  Thanks to all of you for your messages, prayers, thoughts, words of encouragement and good vibes you sent our way. We appreciated every single one of them.  I was overwhelmed by the support we received from our "online family."  

A huge thanks to Isaiah's school community. The students and staff were amazingly supportive and went above and beyond to make us feel loved and cared for. The gifts, meals, cards, prayers and the letter you wrote to the Pope were appreciated more than you know. We are grateful for all that you have done and continue to do for our family.  I can't imagine sending Isaiah to school anywhere else. You are truly more than just a school community, you are our family.

Unending thanks to our friends and family, who provided us with immeasurable love and support.  We would never have been able to keep it together without all of you.  We are fortunate to have each of you in our lives and please know that even amid all of the chaos of those days, we still noticed and appreciated every gesture, every comforting word and every act of kindness.

Lastly, tremendous thanks to the staff at SickKids.  Thank you to all the doctors who did everything in their power to help Isaiah. Thank you to the amazing nurses who took such wonderful care of Isaiah.  They all work tirelessly, but with smiles on their faces, which is a testament to how much they genuinely care about their patients.  Thanks to Isaiah's cardiologist and nurse practitioner.  Thank you for making yourselves so accessible to us and for always being so supportive. Thank you for showing us that the world of medicine does not need to be cold and sterile.  Thank you for caring for Isaiah and not just his heart.

The future

Isaiah had an echo done in September and his heart function remains relatively good and at a stable level.  He will have another echo in December and will likely have another cath and MRI done in March. In the meantime, we are happily watching him grow up and do all the things that little boys his age should be doing.  He recently turned five and has developed a new love of the Power Rangers.  As I watch him show off his Power Ranger moves and fling himself on the couch, those dark days of his bypass seem like a lifetime ago.  None of us know what the future will hold, but we must choose not to live in fear, but instead make most of the present, because as they say, it is a gift.

Friday, April 26, 2013

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 cath: 10 to 20 percent of Isaiah's heart has been damaged due to myocardial infarction (lack of blood).  In addition, the MRI revealed that there is low blood flow to other parts of his heart. Our cardiologist explained that a cardiac cath would need to be done to determine if there are any new clots or narrowings since last year and also check on the development of the collateral arteries that were visible in the last angiogram. Apparently, cardiac MRIs are useful for checking heart function and structure, but are not the best choice for viewing narrowing of the arteries. While our cardiologist decided he needed to gather more information, I realized that I needed to do a better job at educating myself about the medical tests (along with their limitations) and procedures that Isaiah was undergoing. 

Chest pains

We were fortunate enough to get an earlier appointment for Isaiah's cardiac cath due to a cancellation.    When Isaiah began to complain of a pain in his chest six days before the cath, we realized how fortunate we really were.  He did not exhibit any other heart-related symptoms and continued to be very active without any shortness of breath or increased pain. We thought the pain could be due to indigestion or a muscle strain, but it was very hard not to focus on the heart given what we know about Isaiah's condition. He continued to mention the chest pain intermittently, but when asked always answered "yes, it's still hurting" and continued to rate it a 5 on a scale of 1 to 10.  We described different types of pain to him in an attempt to get him to identify which type it was, but it is very difficult for a four year old to differentiate between a stabbing pain and a crushing pain.  To quote Isaiah: "it just hurts." At this point the cardiac cath could not come soon enough. We needed to find out what was really going on and if his chest pains were indeed heart-related. 

Unexpected CT scan

We woke Isaiah up at 6am on a Thursday in order to make it down to the hospital for 7am.  He went through the usual prep of being weighed, measured and having his blood pressure and temperature taken. He had settled into his hospital bed with a video game as we waited for the doctors to come talk to us prior to the procedure. He mentioned that his head was hurting him and suddenly started crying. The pain seemed to worsen.  He was inconsolable and was writhing and rubbing his feet together. Isaiah has a high tolerance for pain, which he has demonstrated many times since the start of this journey, so we were quite concerned. We thought it may be a headache due to the lack of sleep and the fasting. Given Isaiah's history of Kawaski disease and his blood thinning regime the doctors did not take this sudden headache lightly. It was possible that it could be due to bleeding in the brain, either from an aneurysm that had developed during his KD episodes, as inflammation can occur in arteries throughout the body, or from a bump on the head which bled due to his many blood thinning medications. The cardiology team did not feel comfortable moving ahead with the cath until the issue of his headache was sorted out. Neurology came to examine him and decided to send him for a CT scan to investigate further -- more information gathering. During this time we were in a holding pattern with regards to his medications and eating and drinking. The doctors could not give orders to start his heparin line (blood thinner) until after the CT scan. If there was in fact bleeding in his brain, giving Isaiah the heparin would be dangerous. The entire time we were worrying that clots could be forming, as Isaiah had not received his usual shot of enoxaparin (blood thinner) that morning. The CT scan did not show any bleeding or abnormalities in his brain. Neurology came to examine him again and confirmed that there were no issues with his brain. Isaiah's heparin line was finally turned on.  This information gathering exercise allowed the doctors to rule out what was not causing Isaiah's sudden headache, but did not give any definite answers as to what was causing it.  I have come to realize that this is a common practice in the medical world and in life.  Sometimes the best and only course of action is to rule out possibilities in order to get closer to finding the true answer.

Finally, the cardiac cath

The doctors decided to keep Isaiah overnight "for observation" and promised to squeeze him into the schedule for his cardiac cath the following day.  Isaiah finally went in for his cardiac cath close to 1 pm on the Friday.  While we hated that he had to go through yet another procedure, we were anxious for the doctors to get a clearer picture of the status of his arteries.  Little did we know what new information would be discovered and where it would lead us.  When Isaiah's cath was completed, one of the cardiologists came to speak to us regarding the results.  He revealed that a portion of Isaiah's left coronary artery (left marginal artery) had become quite blocked due to scarring as the aneurysms healed.  We knew from last year's cardiac cath that the distal portion of his right coronary artery had a blockage due to a clot, but this issue with his left artery was completely new.  The doctor explained to us that the team would need to discuss Isaiah's case further on Monday, but his initial thoughts were that a bypass would need to be done on his left coronary artery in order to get more blood flowing.  Otherwise, Isaiah's heart would essentially be getting blood from one main coronary artery (circumflex) and whatever collateral arteries exist.  This was definitely not the news we were hoping to receive.

Being in the know

Clearly, it is best that doctors have as much physical and measurable information as possible in order to make the best possible decisions about their patients' health.  Only so much can be garnered from anecdotal information, especially when your young patient is still learning to process what they are feeling and also how to communicate those feelings. I would never discount what a child is feeling or saying they feel, or what a parent observes or feels, but results from diagnostic testing is irreplaceable.  I think the challenge for doctors is knowing what are the correct tests that need to be done and what level of testing is appropriate.  We were relieved that the neurologists took Isaiah's headache seriously, given his medical history and ordered the CT scan,  but they were sure to mention that if he were not a KD kid on blood thinners and walked into the ER with the same headache, they would more than likely release him without any testing.  While we felt sorry for Isaiah as he had to undergo yet another test and another round of anesthetic, we were still glad they intentionally "over-reacted," as they put it.  Given Isaiah's complex medical condition, we need every decision made by his doctors be as informed as possible.  Sometimes the value of physical information outweighs temporary discomfort and safety risks (such as radiation exposure), but it is a balance.  Another KD mom I spoke to struggles with the same issue concerning her very active daughter, who is also on multiple blood thinners due to her aneurysms. She has already had to have one CT scan done on her daughter due to a hard fall where she hit her head, but worries about the risk of repeated radiation exposure, should her daughter require more CT scans in the future.  It is a definitely a challenge to figure out if the risk of taking steps to "knowing" are better than just "not knowing."

The responsibility of seeking out information does not fall on the medical professionals alone.  As parents it is our job to arm ourselves with as much information as possible when it comes to our children's health.  It means paying attention to symptoms and documenting them.  It means doing research prior to visits to the doctor.  It means asking questions and then asking more questions.  While I see huge value in online research, I do realize that looking up something on WebMD does not a doctor make.  However, it is important to go to your doctor with valid research and be able to have an intelligent dialogue with them and be able to ask the right questions to get the answers you are looking for.  My husband continually tells me not to be afraid to ask questions and reminds me that while Isaiah's medical team is great, Isaiah is only one of many patients that they see every week.  It is our job to know his medical information inside and out, because the doctors just do not have the time or capacity to do so.

After every visit to the hospital, I realize that there are still many things I need to research and understand better.  Whether it be a diagnostic test, procedure, measurement, medication or medical term.  My hope is that understanding these things will allow me to be a better advocate for my child and also provide me with some peace of mind.  I can't tell you how many times I wished I was able to read an echocardiogram image, just so I would be able to know the results of Isaiah's echos as they happen.  I sometimes wonder if it is too late for me to get trained as an ultrasound technician or go to med school.  My general bio university degree just isn't cutting it anymore.

It is ironic that this far into Isaiah's journey I am doing the same thing that parents of children who are suffering from yet-to-be diagnosed Kawasaki disease are doing: looking for answers.  Some of you reading this right now may have even ended up here because you are trying to figure out if your child has Kawasaki disease.  I have heard too many stories of parents whose children were not diagnosed with Kawasaki disease in time, because doctors repeatedly told them it was "just a virus." My advice to you is: do your research, record the symptoms, voice your opinions to the doctors, ask questions, if you don't get answers, ask more questions, always follow your intuition, remind yourself that you know your child better than anyone and repeat as necessary.  Don't stop until your child has received the care they need.  I know that we will never stop.

Monday, March 25, 2013

A real life hero

Since Isaiah's was first hospitalized in October 2011, I have continually been amazed and grateful for all of the care and support we have received.  This support has come from close family and friends, but also acquaintances and many new "friends" I have made online whose children have also faced the challenges of having Kawasaki disease. Last summer I received an unexpected, but completely touching message from a friend of mine from university.  We had not seen each other in many years and were only in contact via the graces of Facebook, but his message was very heartwarming.

Here is what it said:
Hey Carin! 
I hope you're having a good summer. 
I wanted to run something by you. As you probably know, I recently signed up to do my first full Ironman next year at Lake Placid, NY. A lot of people ask me why I put myself through all the hours of training to complete these races and I often tell them that it's because I can when, for whatever reason, so many can't. I had a marathon coach once tell our group that each race you run should be a celebration of your life and your fitness and to never take that for granted. That message has always stuck with me. I truly feel blessed and extremely fortunate that I'm able to run these races. 
With that in mind, I'd like to do something special for my first Ironman by dedicating it to those who just aren't able to go out and swim, bike or run. I've been reading your blog about Isaiah's journey and have been really inspired by his amazing courage. I know running a 13 hour race is nothing compared to what he's been able to get through, but I would like to do the Ironman for kids like Isaiah who can't, in the hopes that one day they can. So, if it's okay with you, I would like to use my Ironman race as a way to raise awareness about KD and raise some funds for KD research and support. Let me know what you think. 
All best wishes,
Needless to say, I was extremely touched.  I had not seen or talked to my friend in so many years, but yet he wanted to do something special in Isaiah's honour to raise awareness of Kawasaki disease. How amazing.

Here is my response:
Hi Mike, 
I was so deeply touched by your message that I have to admit I was teary eyed after reading it. I have not seen you in so many years (too many!) and you have never even met Isaiah, but yet you want to dedicate your very first Ironman challenge to him (and kids like him) and help raise awareness and funds for Kawasaki disease research. That amazes me and moves me beyond words. I think I made a joke in a previous FB post that you were my hero, but now you truly are. 
I think that this would be so wonderful, but I do want to clarify that Isaiah, along with many KD survivors, is actually able to run, swim and bike. Coincidentally, those are some of the few sports that he will be able to take part in. His heart itself is still healthy and able to handle physical activity. However, because he is on blood thinners (and will likely be on them for life) he can not play any contact sports in which he may sustain any head or abdominal injuries. That being said, I am not sure if Isaiah's case is true to the meaning of your dedication. However, I am sure there are other more advanced cases in which KD survivors suffer damage to their actual heart muscles and are unable to do any extreme physical activity. I would totally understand if you decided to redirect the focus of your Ironman dedication. I really want you to be true to the message you want to convey and what is in your heart. I am honoured and grateful that you even thought of Isaiah and KD. 
Another coincidence that I thought might be worth mentioning is that Isaiah's cardiologist also did an Ironman a few years ago to raise funds for KD research. It seems to be a good fit, as these kids are facing their own challenges -- their own Ironman if you will, and it is also important for them to get lots of exercise to keep their hearts healthy, as it will play a huge role in their health when they become adults. 
Thanks again for thinking of Isaiah. Regardless of what you decide, I will always remember this touching gesture. We will be rooting for you no matter what. 
BTW, do you mind if I use your message as part of a future blog post? I think it would make an inspiring post. 
I hope you are enjoying the summer and really hope to see you soon. 
Take care,
 Mike decided that he still wanted to dedicate his race to Isaiah and KD:
That's awesome that Isaiah can swim, bike, and run! I must have misread your blog post. I thought all sports were out for him. Maybe one day he can do a 'kids of steel' race -- Simon Whitfield started out doing these when he was a kid! 
I'm still more than happy to do this race for Isaiah and other kids with KD. I think there are a whole host of messages that I want to convey that mesh quite well with this cause. Beyond doing this race for those who can't, I'm hoping that I can inspire others to get active and celebrate their health. And, if this inspires survivors of KD to get into triathlons who need to stay 'heart healthy', then even better! And, while I would never dare compare a triathlon to fighting a disease, both require a tremendous amount of courage and toughness to get through. Most of all, you need a strong heart - both figuratively and literally - to keep going!
Mike is absolutely right.  All of the KD kids I know and read about are all strong and very brave.

I always say that Isaiah is my hero, but my friend Mike is a very close second.  I am truly touched by his gesture and also by his dedication.  From what I understand, preparing for an Ironman race is a complete lifestyle change.  It requires an insane amount of training and preparation, both physically and mentally. I find this type of dedication very inspiring.  I am sure that when Isaiah is older he will be inspired too and hopefully be motivated to stay active and maybe take on a similar challenge.

Thank you, Mike. You are a true inspiration, both as an athlete and a human being.  I will be forever thankful to you for bringing awareness to Kawasaki disease and dedicating your efforts to my little guy.  Good luck with your training. We will be cheering for you.

Mike in action at the Ironman 70.3 Pocono Mountains race last year.

[Just a note: Looking back at my message to Mike, I realize that I had made an error.  Isaiah does in fact have damage to his heart muscles.  His recent MRI has confirmed what the doctors had assumed based on his cardiac cath last April: approximately 10% to 20% of his heart muscle has been damaged.  I won't get into the details here (that's for another post) but thankfully, his overall heart function is still good so he can still do his running and jumping.  I am not sure if a "kids of steel" race is in his future or even authorized by his cardiology team, but at least he can still catch his friends at tag, shoot a basketball like it's nobody's business and kick my sorry butt at Kinect tennis.]