Wednesday, August 1, 2012


Neurofibromatosis type 1, we first heard about this condition (I refuse to call it a disease!!) was when Rhen was just a few months old.  I had noticed a birthmark on his backside...then, over the course of the next couple of weeks I noticed smaller birthmarks popping up all over his front and back, so I called the doctor.  She set us up to see a genetics doctor, who at the time said all that she noticed was the cafe au lait spots (birthmarks) and he needed a few more other symptoms before she'd write that on his medical records.  I came home and hit the web running, boy...I shouldn't have done that, talk about information overload...but I would rather have knowledge than not, so I kept reading.  I was scared from that moment on, but I refused to let it eat away at me, besides, the genetics doc had said that some people go their whole lives and have nothing but the spots show up...I so hoped that would be the last time I heard that word.

Well, as Rhen got to walking around we noticed that his little left leg had no muscle tone on the calf, so I was calling the doctor again.  This time she sent us to Easter Seals.  Dr. Kitts sent us to have an EMG of the nerves done (talk about super rough to have to watch your child go through *sigh*)...this is when we were sent to Morgantown, his blood pressure was so high it's a wonder he didn't have a stroke or heart attack.  We stayed there for ten days where they ran all sorts of tests, then decided to send us back to Children's Columbus for more was August 2nd (I'll never forget that day) that we were told that NF1 would now be on his medical, it began...our journey into the unknown! 

Some of the markers for NF1 are, of course, the cafe au lait spots, enlarged head (which I've never really thought Rhen had, but it's on his medical records as well), optic gliomas behind the eyes (which Rhen has, it has remained stable since found back in 2005), fibromas could pop up anywhere on the nerves, inside or outside...and so many more things that can be associated with the condition...the skin gets itchy, scoliosis, bones that bow...again, so many things.  I have learned to not think about what all can pop up, but to deal with what does when it does.  That's hard, and I sure don't have it perfected (and probably never will), but I do try!!

After getting Rhen's high blood pressure under control with medicine, I was so hoping and praying that that would be it!!  (Again, a mom can dream, right?)  Things stayed pretty sane for awhile, although as he was growing and getting older we could notice his left leg bowing more and more.  Then came the brain tumor in 2009, an Astrocytoma, again associated with NF (or so the surgeon told us at Rhen's first chemo treatment on September 2nd of 2009.  Rhen, for lack of any other way to describe it, sailed through chemo...while it kicked my butt for awhile and made me lose my hair, Rhen just kept on ticking and never shed a hair one.  (That was fine by me, I have always thought that he would have been so upset if he'd lost his, who knows.)

Now, we are waiting to see what John Hopkins can find out about the biopsy of the knot on the side of that left leg that was done last week.  *sigh*  I've always felt that Rhen was sent to do great things...I still think this, and I know he will...he's taught me so much already!!  Like I said earlier, I like knowledge!!  ;-) 

Until next time...Peace, <3 and ~HUGS~


  1. <3 love reading your blog love you guys!!

  2. Ok it is Vicki. I hit anonymous as I had no clue what else to hit! lol. I am loving you are blogging Tam. I have a private place where I can and it helps so very much to vent and even more to organize my thoughts. What's more it is an invaluable tool for referencing dates and such. You are a very strong woman and an excellent Mom. Even tho, please keep in mind if you need help just give a shout out. I hate when people just consider someone so strong they can handle anything. No such animal exists. Got you all in our hearts.

  3. I think his head looks perfectly normal. I know I have a big head. It's like twice the size of all the people in my family photos!