Monday, August 6, 2012

Smile through the fear

So, if you're a friend of mine of facebook, then you now that I still don't know a thing about Rhenner's tumor on his leg...except that it is some kind of rare bone tumor.  This chills me...the fear of the not knowing is so hard not to think about...yet I try...not well, but I do try! 

If you are local, then you know that the county fair starts I happen to know two little munckins that are urber excited about this??  Why, yes I most certainly do!  It's been a constant question at the house today, 'Mom, what time is it?  Is it time to go to the fair yet?'  Normally I'm all geared up for it too...this year not so much really...oh, I want the kids to have fun, but the stress of Rhen doing something to his leg, even the slightest little twist could play havoc on a bone that is already weak and suffering from whatever that tumor consists of!  But, I will smile through my fear because in my heart of hearts I believe that if something was meant to happen, then it would regardless of where we were at and what we were doing!  So, at the advice of Dr. Paul, Rhen will wear his boot cast to try to help keep that little leg of his from doing the unthinkable!  He's not super happy about this, but he knows it has to be done, so we'll do it with the same gusto that we've done everything else with...and our smiles, of course.

I have often been asked how I do what I do when it comes to everything that our family has been through...I so wish I had an answer, THE answer, but I do not.  We can be falling apart inside, but we don't show that to too's all our smiling that keeps us glued together!  So, when you see our smiles, it doesn't mean that we aren't worried to death about one thing or the other, it's just our way of handling a situation that we have no control over...we smile through the fear!

I hope to take tons of pictures of those two little munckins that can't wait to get to the fair...and, yes, I will share the smiles...these ones will be of pure, youthful innocence!! 

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

P.S.  Here's those two muchkins from last year...*S* 

Friday, August 3, 2012

Small Town Proud

I LOVE our small town!!  There, I said it!!  There have been times in my life where all I could think about was getting out of here!  [So glad I never let those voices win!!]  ;-)  Small towns give off a strength that I don't think one could ever find in a city.  That's just my opinion, so don't get all riled up on me.  *S*

My heart goes out to another family in our small town...all of our prayers are with them as this battle just keeps rearing it's ugly head.  I've seen so much outpouring of love for them, from not only people from our small town, but everywhere!  But it all started from our small town, as one person shared their story, and another person shared it!  The pay it forward factor here just makes my heart swell!!  We've been on the receiving end of this gesture, and still continue to be (THANK YOU!), and I can not speak for this family...only ours, when I say there are no words that can convey the appreciation one feels!  The Blessing, if you will, of knowing that so many people care! 

Cancer SUCKS, period!!  There is no pretty way to say it, and until there is a cure for all types, Prayers will be lifted!!  So please, lift those up that you know need it, and even those that don't...remember, we are all facing one trial or another.

I do have to share this one last thing, then I'm gonna call it a night (the past few days of waking up with the stomach in knots hasn't been very nice to my energy level)...Rhen overheard me on the phone today talking to Miss Carla (the lady who makes the infusion room of WVU Children's run so smooth!!) about an upcoming MRI that she mistakenly scheduled for this month (Dr. Paul had told him not until December when we had seen him back in early June), he informed me that if it was this month, he wasn't going.  I had to think quick on my feet here, because he was very adamant about this (I can't say as I blame him, the kid is MRI'ed out right now!) so I asked him if he thought that Dr. Paul would ever put him through something that he didn't think needed to be done?  He thought for a few seconds and then answered me with a soft, muffled 'No mom'.  I told him he wouldn't, and I know this in my heart!  Rhen then threw his arms around me, kissed my cheek, and said, 'Allright mom, if Dr. Paul says it has to be done, then I'll do it.  I won't like it, but I'll do it.'  Have I said lately how much I LOVE this kid!!!???!!

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

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~