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 ever 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. If left undiagnosed, this disease can result in death.

If I can help even one child by sharing 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.

Saturday, July 21, 2012

No news is good news

It's been quite awhile since my last post.  There seemed to be nothing new to report regarding Isaiah's health, or perhaps I was just avoiding composing a post, as it would force me to think about Isaiah's heart problems.  In between check ups I find myself almost forgetting how serious his medical problems are.  We have fallen into so much of a routine of administering his shots and his oral medications, that they no longer serve as strong reminders of his situation.  However, as the date for his echocardiogram check up came closer and closer, I found myself thinking about Isaiah's aneurysms more and more and my anxiety level steadily increased.  A few days before his echo, I was watching a KD-related video online and ended up in tears.  The little boy in the video had suffered from KD, but despite a large delay in receiving treatment, he was fortunate enough not to end up with any long term effects.  Photos of the boy brought me back to the awful days of Isaiah's hospitalization and a feeling of despair washed over me. Why did Isaiah fall into the small percentage of KD survivors that end up with aneurysms?  It was the first time, in a long time that I cried over Isaiah's condition.

On Wednesday we headed down to SickKids for Isaiah's check-up and clinic visit.  He is so used to going there now that he calls it "my hospital."  He even makes a game of guessing what level we are going to park on.  As always, the time during the echo was full of anxiety.  Mike and I stared at the screen, trying to make sense of the images and measurements without really knowing what any of them meant.  When the sonographer finished her report, we had to wait while she had the cardiologist sign off on it.  She was gone for quite awhile and we worried that there was something wrong.  She eventually returned and told us that we could go to our next appointment. The wait between the echo and our actual clinic visit with Isaiah's nurse practitioner was an excruciatingly painful one.  It is difficult to balance preparing for the worst and hoping for the best.

As it turns out the echo, blood work and ECG were all good.  His heart function is fine and the echo did not indicate any clots or changes in size of any visible aneurysms.  Although we are always hopeful for some improvement in the size (ie. lessening) of Isaiah's aneurysms, at this point we are happy with no change at all. Yay!  Perhaps Isaiah's condition has stabilized for now.  While we continue to hope and pray for improvements in Isaiah's health, we will always be grateful for the wonderful life that he is living now and will use these cherished moments, as a source of strength to overcome any challenges that may lie ahead.

Isaiah doing some post-echo gaming.

10 comments:

  1. I had a little girl, that I had for daycare. She was I think about 7 when she was diagnosed with Kawasaki and had an aneurysm. She is now mid 20's and doing very well.

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    1. Thanks for your comment. It is always great to hear stories of KD survivors that have gone on to live healthy, normal lives in spite of the aneurysms they developed as a result of Kawasaki disease.

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  2. At 5 months old, my son had 5-week high fever at 104 degree and twice meningitis before doctors diagnosed him with KD with 4 giant aneurysms. He also had a heart attack right after the 1st angiogram. He was sent home as a terminal. We were told our baby would probably not able to live past his 1st birthday. However, if he was lucky enough to live till two, doctor would register him for heart and kidney transplants. By the way, my son's left coronary artery was totally blocked off and right coronary was an giant aneurysm. Anyway, he got better on his own without any operation or transplants. Before his 2nd birthday, all his aneurysms disappeared, the blockage was clear and no scar tissue left on heart from the heart attack according to his 2nd angiogram. Heart is strong and blood vessels are back to normal size with pumping action. He is now a healthy typical 15 years old teenager. He does all extreme sports like downhill mountain biking, snowboarding and hockey. His brain seems fine too as he'd got a scholarship at Grade 7 and is always in Science and Math. In conclusion, please don't give up. With all your love, your boy would get better like mine. Take care!

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    1. Thank you so much for your post. Your son's story is a remarkable and uplifting one. I appreciate you taking the time to share it with me. It gives me hope for the future. I wish your son continued good health.

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  3. Hi Carin,
    Thank you so much for sharing yours and your family's story. It is great to hear that your boy is doing well, despite having some complications. You seem very strong and courageous, and I'm happy to read that you are able to return to "normal" life, despite these challenges. our 2.5 yr old son also had KD back in May of this year, and he is still experiencing some of the symptoms (red eyes, fatigue, sore/swollen joints in his knees) but for the most part he is well, and his first 3 echos came back clear. I know how exhausting it can be to worry and think about your kid's health and all of the potential problems and complications. I also believe that most of it is "manageable," especially when you know what is wrong, what to look out for, and you have a plan for regular check ups and "maintenance".
    I wanted to ask a favor of you. I am trying to help spread the word about an upcoming KD Symposium for parents and survivors that will be held in the Bay Area, California. Its the first ever of its kind in our area, and we want other parents to know about it. Would you be able to post about it on your blog to help us get the word out? I'm sure many KD parents end up at your site, and even though we are in different parts of the world, it will help.

    Link to Info from the US KD Foundation Website:
    http://kdfoundation.org/

    Link to the Registration form for the event, also on the KD Foundation Website:
    http://kdfoundation.org/index.php/component/chronoforms/?tmpl=component&chronoform=KDSymposiumSanJoseAug2012

    Facebook Invite/Info Link:
    https://www.facebook.com/events/319692428118220/

    Organizer Contact:
    Contact info: Vanessa Gutierrez
    kawasakidisease2007@yahoo.com

    Kate Davila
    katedavila@yahoo.com

    thanks in advance for your help!!
    Heidi Collins
    heidilars2@gmail.com

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    1. Hi Heidi,

      I hope that your son's condition improves over time. I have read posts from other parents that say it can take awhile for the symptoms to completely disappear. Isaiah still experiences joint pain every once in awhile.

      As requested, I have posted the information about the symposium. I would be interested in hearing about any new insights that may be revealed during the symposium, so please keep me posted.

      Thanks,
      Carin

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  4. Hi Carin,
    My son is currently going through what Isaiah went through. We're fortunately located in San Diego, CA which happens to be home to one of the top three KD researchers in the world. Her name is Jane Burns. I wish I had known about her sooner... Anyhow...I'm sitting in the hospital and thought I'd google KD blogs since I started one just a few days ago to keep family and friends updated on Jet's progress. It's very theraputic to read some of your posts because I'm experiencing some of the same emotions. Thanks so much for sharing. P.S. Dr. Burns is doing a genetic research study...if you're interested I can give you details.
    Thanks again,
    Tiffany

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    1. Hi Tiffany,

      Thanks for your comment. I am glad to hear that my blog has been helpful to you. Since, KD is considered relatively rare it is always comforting to be in contact with other parents that have been through similar experiences.

      Your son is in great hands. I have come across Dr. Burns' name many times while doing research online.

      I visited your blog and noticed that Jet is quite young (and very cute, by the way), which bodes well for him. I have read many stories of younger babies that have had KD and have had aneurysms that fully resolve themselves. The growing young body of a baby can be an amazing thing.

      Hang in there. You and your family will get through this.

      Please send along the research study info. I would like to help with KD research and awareness in any way that I can.

      Take care,
      Carin

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  5. Hey Carin,
    I'm not totally blog savvy. Do you want me to post the research study info as a comment on your blog? Is there a way to attach something? I can email...I do know how to do that :)
    Let me know,
    Tiffany

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  6. Hi Tiffany,

    Sorry for the delayed response. You can certainly post the info as a comment, unless you think it is too long. If you post it here, other families would be able to view the information as well.

    Thanks,
    Carin

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