#RareDiseaseDay – Who Knew?

Today is #RareDiseaseDay. Who knew? I do now. In case you’re keeping count we have 2 in our immediate family #LongQT2 and #SynovialSarcoma. The medical field has only been aware of Long QT2 (a heart condition that causes sudden death – Sabrinna​, Gavin and I have it) for about 50 years. Want to know more about it? Go here.
You’ve been learning a little about Synovial Sarcoma from me and maybe you’ve done a little bit of your own research. It’s often over looked because it accounts for less than 1% of all adult cancers, so when it’s diagnosed the doctors’ really have very little experience in dealing with it and most treatments are trial and error and the prognosis is therefore, very grim. THAT’S NOT GOOD ENOUGH. Here are 2 great sites for learning more about Synovial Sarcoma, or soft tissue sarcoma. http://lillypad.lilly.com/entry.php?e=6169

I spend most of my days wracking my brain trying to figure out how to make our situation count. Right now I’ll blog, (www.confessionsfromthecancerhouse.com), tweet (@gpartyof6) insta (@gpartyof6) and use any other method of social media I can get my hands on until something happens.  I don’t know what that something is, but I’ll know when IT happens.

If you continue to follow me on any of the above social media outlets you will know more about both of these diseases that have impacted our lives. I hope that you join me in sharing the information and just talking more about #SADS or Sudden Arrhythmic Death Syndrome or #SynovialSarcoma.

I think it’s really important for those fighting these diseases that we don’t ignore that they are happening.  I am guilty of that myself, for myself.  I learned of my own LongQT2 in the midst of our Trent’s initial diagnosis as we were trying to track down a genetic culprit for Sabrinna’s diagnosis.  I haven’t really shared it with anybody for many reasons, one of which being that the last thing that I have wanted to do is put my own issues in the forefront, afraid of minimizing that gravity of what anyone else in my home is experiencing.  Then I realized that by not bringing attention to my own LQT2 I am also minimizing the importance of my own health, the importance of the health and experiences of my children and the importance of the health and experiences of anyone else who has been diagnosed with a SADS disease.  And frankly, I haven’t come to terms with my own diagnosis.  Even though I know better, frankly, I feel like I don’t have time for it.  I have too much to do.  I know, I know.  “You’ve got to take care of yourself!” – but remember, these are my confessions.

As far as Trent is concerned, it’s seems like people who are close to him are having a hard time coming to terms with his cancer.  And believe me, it is his.  It’s not all of who he is, not by a freaking long shot, but he lives it. He wakes up with it everyday and goes to sleep with it – or at least tries to – every night.  And when its not acknowledged, or you’ve pushed it away, put it on the shelf or locked it away in some weird cancer-closet you’ve inadvertently done the same thing to him.  While I’m sure he doesn’t want to spend hours on end talking about his cancer woes, cancer has profoundly affected his life and when you ignore “the canca” you ignore him.  And I know that’s not what you want.

In any case, as always, thank you for reading/listening.  When you read this it makes me feel a lot less alone and when you share it, my hope is that it makes someone else feel a lot less alone.  So, if you like what’s happening here, like it, comment, share it, talk about it, reblog it, tweet it, and do whatever else there is to do with it.  We just never know how we might help someone else.


Jeremiah 29:11,


PS – Before typing this post script this blog was 666 words long.  You know what I have to say to that?  Not today, Satan.


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