Tuesday, September 10, 2013

Another Rare Tumor?

I'm not really sure how to begin this blog post, because I am still processing our long day at the eye clinic.  Lots of long words were thrown at me, and I literally had one of the many doctors we saw write what he had told me down on a piece of paper.

What is it with doctors and their messy, short-hand scribbling?

I couldn't read the writing, so the nurse was awesome and re-wrote it--Thank Goodness!

There is an abbreviated term for what the doctors are thinking Braden is dealing with.  CHRRPE (gosh, even the abbreviation is long.)

Combined Harmatoma of the Retina and the Retinal Pigment Epithelium.  *Whew*

Basically this is a "rare" (yay for us...NOT) type of lesion or tumor of the macula. (The back part of the eye that is responsible for central vision)

We were told that Braden would need eye checks every six weeks, to monitor his vision, because once vision problems happen, it can very quickly take his vision and can very possibly turn into cancer.

It was a lot to take in...But we were thankful and comforted by these very attentive doctors...who told me, that this type of condition is often missed by general eye exams.

For Braden, he has this way of "checking-out", when things get complicated or overwhelming, which - in this case, is a blessing.  All he was worried about, was that it was 2pm, and he hadn't had lunch yet.

We stopped at McDonald's before heading home, and I let him choose ANYTHING from the menu.....A #2- "large-sized".....which he gratefully inhaled.  

Where has the time gone, where Happy Meals were all he wanted?



  1. I hate this. Just another blow! Praying for your Braden (my son's name is spelled Brayden) and you!!!

  2. I looked up the tumor your son has and it is much more common in NF2 not NF1. Also you said a while back your daughter has hearing nerve tumor also an NF2 symptoms. Was your family tested genetically for either type of NF? A man on inspire.com NF group who had NF2 said in a post about a year ago that he was misdiagnosed with NF1 and turned out to have NF2. I tried to get a genetic test for myself and the gentcist refused to test me and I was falsely led to believe that I was genetically tested for NF at the clinical trial at UCLA no test and no drug just a placebo. Anyway prayers for your family it is harder to lose your vision as a teen I lost my left eye vision due to NF as a young child.