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~

Tuesday, July 31, 2012

Waiting Game

So, gonna give a brief update on Mr. Rhenner's biopsy and then two little munchkins need baths before bed.  *S*

I have talked to Dr. Paul the last two nights, briefly.  As of right now we have no definite answers about anything, only that the results are leaning towards a very rare bone tumor.  Dr. Paul, Dr. Lindsay and the pathologist have all put their heads together and decided to send a sample off to John Hopkins.  We will hopefully know something sometime Monday, August 6th...Dr. Paul said if I had not heard from him before Monday afternoon, to give him a call!  (Have I mentioned how much we LOVE Dr. Paul???  He's absolutely awesome!!)

So, this waiting game that has haunted me most of the summer continues...until then, I will let my boy be just that, a boy (for the most part, his little leg makes me put the whammies on certain things, but he totally understands).  I stress and worry when the kids are asleep, for that hour or so before I make myself go to bed...while they are awake, I'll enjoy being distracted by their little fights and fits of giggles...we will dance and sing like no one is watching...that's just how we roll!  *S*

So, until the next post...Peace, <3 and ~HUGS~

Monday, July 30, 2012


Well, here I am...a blogger!  ;-)  I'm so not sure what to blog, but if you know me, you know I'll think of something!  :-)  I've thought about this for a long time, just never really took the time to try to figure it out, so I hope you bear with me as I learn as I go. 

To bring those who may not know about my family, let me give you a brief (yeah right) rundown.  I'm a stay-at-home momma with two adorable children, 8 year old Rhen Scot and 5 year old Raina Skye.  I've been married for quite a few years to a pretty good sport (hey, he's put up with quite a lot and still keeps coming home everyday after work).

To attempt to be brief, back in 2009 I was diagnosed with breast cancer...a few days after having my first chemo treatment (after having a biopsy, and then opting for a mastectomy) our family found out that Rhen had a brain tumor.  It was located in such a place that if a biopsy would have been performed, we probably would have lost him.  (This so wasn't an option for us, hey, we tried 13 years to become parents!)  What are the odds, a mother and son both going through chemo at the same time?  I never have looked into that, but the odds seem slim to none to me. 

Anywho, we are fighters, in every sense of the word.  I just knew in my heart of hearts that the man upstairs didn't make me wait 13 years for nothing.  Rhen and I were going to be inspirations for each other!!  That is exactly what we were...picture this, sitting on the couch beside your 6 year old, having a conversation about whether or not you were going to continue with your chemo treatments or stop!!  Yep, we did that, I had a really bad episode during the second dose of my second drug and told myself that I was done!  Rhen brought me back to my senses (as soon as I said I was done, after he was questioning me about my track marks from all of the blown veins, I knew it hit him...I could see the wheels turning in his little head...I asked him what he thought I should do, and Bless that little man, he told me not to quit!) and I finished my 8 treatments without a second thought!!  We never let it get us down, you get up every morning, put a smile on your face and do what you have to do!!  That became our mantra!!  (Yes, there was times I broke down, who wouldn't, but I never let him or his sister see it!!)

So, here we sit at a crossroads again.  Rhen fractured his leg in May of this year, and as the swelling went down we noticed a knot that wasn't leaving on the inside of his little left leg.  (This leg has no muscle tone in the calf to begin with, and we've noticed that as he has grown, the leg was bowing more and more...blame that on the NF1, which I'll explain more about if any interest is shown.  *S*)  After two trips to Pittsburgh, I opted to find a doctor at WVU Children's (with the help of Dr. Paul, Rhen's oncologist).  Rhen had a biopsy done there the 24th of July...we are currently waiting on the results. 

I'm not a hateful person, but I can truely say that I HATE NF!!  So, with that being said, and me promising to be brief, if there is enough interest, I'll keep the blog going, not only as a momma's way to vent, but to keep everyone up to date on this wild, crazy and scary journey of ours. 

Follow the blog, share my blog...give me your thoughts about what I should blog about.  Basically, help me help you help me!!!  *L*  (Overlook my sense of humor at times, it can be out there in left field a ways.) 

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