Thursday, April 4, 2013

VICTORY?? For me, yes...I'll count this as one...

Wow!  It sure has been awhile...Sorry, this little thing called life just totally got me sidetracked.  ;-)  I honestly wouldn't want it any other way though!!

I just got done doing the happy dance!!  To spare you all the sight of said dance, I just thought I'd blog about it instead.  (Luckily the kids weren't home to video me or you'd see it anyway!  *L*)  As I just said, the kids are with daddy, so I thought I'd go soak and spend some me time in a bubble was very relaxing, thank you!  Now, just the quiet bubble bath might be reason enough for a happy dance when you're a mom, but mine was for a totally different reason all together...

Fair warning here, most that know me well, know that I have a warped sense of humor about a lot of is one of the things that has helped me make it through various events in my life...with that being's my VICTORY story...

Ever since having my right breast removed, along with various lymph nodes taken at the same time, I have this weird, sunken hole in my arm pit...I'm not ashamed to admit that there has been many, many times that Shan has been called from the comfort of his couch perch to help me out when I'm shaving (which I'm sure is just the highlight of his days!!) but FINALLY, after almost four years, tonight, no TONIGHT, I figured out how to shave my own pit again!!!!  Crazy, huh???  But seriously, I was over the moon about this!!  I have learned that there are so many things to adjust to after cancer, and a lot of them are never discussed in any of those little pamphlets that they send you home with...this being one of them!!  So, with that being said...I did my happy dance...decided to blog about I'm going to whip me up a caramel mocha and enjoy my VICTORY!  ;-)

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

Tuesday, January 1, 2013

2012 Year In Review Part 2

Are you still with me after the first six months???  If you are, THANK YOU!  Onward we tread...

July is still somewhat of a blur...was I headed to Pittsburgh, Marietta, Wheeling????  I had to constantly look at my calendar to make sure I was headed in the right direction when I pulled out of the driveway!!  Raina was healing nicely, but we still had nothing definite on Rhen's little leg!!  I was starting to let that mommy worrywart syndrome kick in!!  I wanted answers and Pittsburgh just wasn't giving them to me!  So, I called in some back up!!  I got them to get the ball rolling for a visit to a new ortho doctor over in Morgantown...ball took off!!!  We had an appointment set up immediately and the very next day after that appointment, we were right back over there for a biopsy!  That's the kind of service a momma wants for her matter how old they are, or what is going on!!! 

August always brings excitement and dread to the two kids that reside here!  *L*  The excitement stems from the fair and the dread comes the Monday after the fair ends...SCHOOL!  *S*  It's always a countdown to the fair at this house once school is out in May/June!  I must say, I remember those times myself, when you just couldn't wait for the fair to get here so you could ride the rides and see your friends that you hadn't seen since school let out!  Ahhh, memories!!  ;-)  School gets the kids back into the swing of a schedule, and we start to settle into it and wait for the colder weather so we can bundle up inside and have some good old fashioned family fun!  Bring on the board games and the Wii!!  Just sayin'!!  At least we found out the biopsy results for Rhenner this month too...after a long time of only hearing, 'I'm sorry, we are still waiting ourselves for them to be read.'  We will keep an eye on that leg even more so than what we did before...he's not out of the woods with it by no means, but out enough that we can breath and wait for that next bridge when it pops up!!

Ahhh, September!  Let the colds, fevers and whatnot's start anew!  I kid you not, not even two weeks into school and already one of my two is home sick taking meds!  Raina caught it first!!  I was so hoping to avoid such things this year, but it looks like it's going to be the same old, same old at this house...I do know I'm not the only one with this happening to, but just let me wallow in a touch of self pity for a few minutes!  ;-)  All-right, there, I feel better!!  Toward the end of the month, while both munchkins were feeling all right, we went and got their flu shots!!  Hopefully, that stays away from this house!!  Wow, I can't believe this year has flown by so quickly...and that I hope I haven't bored you to tears catching little snippits of our lives!  ;-)

October!!!???!!!!  Didn't this crazy year just start??  Oh well, guess who turned 6 this month??!! Yep, that's right, Raina Skye!!  I honestly thought I just brought her home from the hospital yesterday!!  Boy, when you are told that they grow up fast, please believe it...cause they do!!!  I've been busy volunteering at the school with only a few little appointments thrown in for good measure for Rhenner and Raina.  Something else awesome happened this month...Raina lost her first tooth!!  Talk about excited, she sure was!!  They looked forward to the end of the month and Halloween!!  Rhen was a SWAT guy this year and Raina was FrankieStine from Monster High!  They had a blast going into Sistersville and watching their costume parade and then hitting the streets of Middlebourne the following week!!  It was a good year for the trick or was unclear if it would be, they had called for a snow storm for the night that it was supposed to be in town, but luckily it went a different direction and the kids got to trick or treat!!!

November it is!!  Rhenner is growing up so fast!!!  He turned 9 this month!!  He didn't want much of a fuss...just one of his buddies to come over and stay all night on the weekend before his birthday and then a small family gathering for his birthday on the 13th!!!  Have I mentioned how much I love this kid and his little sister????  *S*  They have definitely made my life complete!!!  Rhenner had his class play this month as well, and daddy and I helped work on it and build things for it and the girls that work down at the the flower shop painted buildings for it!!  It ROCKED, and I'm so not just saying that because we worked on it!!  The kids put their hearts and souls into this play!!  Kudos to the third grade teachers as well for picking such an inspiring, entertaining play for the kids to perform!!  The holidays are upon us now and with Thanksgiving under our belts, it's time to start making plans and decorating for the big man's arrival in December...Santa, that is...didn't want anyone to get that confused with that whole end of the world thing people are talking about!  ;-) 

Hey, you know what??  We are almost done with this...well, I mean I am, I don't have no mouse in my pocket!  ;-) 

December!!  Another month I love, yet have issues with!!  I love the holiday's the days leading up to it that just bite for me...not the shopping, oh no, I love shopping!!!  December has turned into the month that Rhen now has his yearly MRI in...I honestly can't get into the Christmas spirit until after this MRI is done and we have the results!  This year it was on December 3rd...we went over to Morgantown on the 2nd to attend a bowling party that the oncology department threw for the patients and their families...Rhenner had a BLAST!!  Raina did too!!  Heck, it was nice to have the distraction from what was coming the next day.  We stayed overnight and went to the hospital first thing the morning of the 3rd!!  We have learned over the years to not lose it completely while he's back in the machine, but dang, those minutes feel like HOURS!!  He opted to get his loopy medicine through an iv this year...normally he has to drink something, and he always gets sick, we got through the iv needle stick like a PRO!!  (Let me tell ya, this Rhen kid is AMAZING!!)  He woke up a lot quicker by doing this as well...Dr. Paul personally came out to the waiting room to get us and give us the news!!  No tumor, everything looks GOOD!!!!  Praise God and Merry Christmas!!!!  Time to kick start that holiday spirit!!  ;-) 
The end of the year saw both my kids battling some sort of nasty crud...Raina's turned out to be strep throat this time, the poor girl has been tested time after time, and this time it was positive!  No school for either of them for days on end...Raina did manage to go back for the last two days before break...Rhenner, nope...I just can't send them when they don't feel good!!

Well, so there ya have it...2012 in a nutshell...I say BRING ON 2013!!!  I have no idea what it holds in store for our little family, but we'll take it as it comes...we've learned to roll that way!!!  HAPPY NEW YEAR blog land!!!  I promise to be a better blogger this year...hope you all will continue to follow me and share my crazy, wild journey with others!!! 

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

2012 Year in Review Part 1

Wow!  Have I been absent or what?  *S*  Sorry about that, it always seems like I never have enough hours in the day to get done what I want.  (Notice I said want to do there, not what needs done...geeze, I'd be super busy if I did what I needed to do!  *L*)

Anywho, I thought I'd take ya'all back on a quick little journey through our 2012...I'll try to make those 12 months fly by...but you all should know me by now!  ;-) 

January is always conflicting for me...I love the new beginning it brings, but it makes me sad too.  It also marks another year without my mom...I miss that lady so, so much!  It's normally always cold, which means a lot of indoor time spent with the munchkins, which can be super fun...they have their sibling moments too, but I hear that's normal.  Januay 2012 was just that...January.  It was a quiet month, which we aren't really used to, but it felt nice not to have to run somewhere every week!  The kids helped their daddy turn another year older last January...we don't make a big fuss out of the day, but we do center our activities and menu around his favorite things...that's just how we roll at this house!  *L*

February just rolled around in no know, again it was a fairly quiet month...outside of those nasty viruses floating around, in January both kids had something going on with these old bugs and in February poor Rhenner got something again.  (These two are going to turn into some form of antibiotic before it's all said and done!)  We found ways to keep ourselves entertained throughout the cold, dreary, sick filled days though, we played games, made up songs...anything to pass the time away.  Plus, there is always Valentine's Day this month...oh how the kids look forward to this little holiday!!  Yes, I save every card they get from their classmates, and they go into a scrapbook for them at the end of the year!!  I'm just crafty like that!!  *LOL*  (Speaking of which, I need to get caught up on those....YIKES!!)

March is usually a busy month, but a good busy, ya know what I mean?  Weather is trying to get better and new life is poppin' up from the flowers and trees...yep, it's a good month.  We stay busy this month helping some of the closest people to us celebrate their special days...I won't list each one, I didn't do that for January and February, and I don't want to cause dissention among the months!!  ;-)  (I know I'm crazy...stick around, you'll figure it out too!!)  Again, I'm not complaining in the least, but it feels so weird not to have to go to an appointment every week!!  This could spoil us, let me tell ya!!  How could I forget St. Patrick's Day??  The kids LOVE, LOVE, LOVE this little holiday as well!!  There is this little leprechaun that pays a visit to our house every year...his name is Louie, in case you were wondering...and leaves gold wrapped candy all over the place...he's quite the messy little guy!!  The kids think it's a hoot, and hey, as long as they are happy...this momma is too!!!! 

Oh my, are we at April already??  Are you bored yet??  *S*  The nasties left us alone in April, thank Heavens!  We spent the month helping some more special people celebrate their day and oh, don't let me forget Easter!!  (Are you noticing a trend here??)  The kids had a blast at their Pap Charlie and MiMim Brenda's Easter Egg Hunt!  I remember some pretty special Easter Egg hunts myself from my youth (hey, I'm NOT that old!!  *LOL*)  and these memories will last with the kids forever!!  I often wish that life wasn't so fast paced, then people would have time to visit family and friends more often!  *sigh*  Such is life I suppose!

Ahhh, May!!  One of the busiest months of my year...and I wouldn't have it any other way!!  With the kids being in school now, their little functions can keep me busy (that and my own ability to not say NO...just kidding!) I am constantly doing something that is school related.  This month saw both of them at different schools with different end of the year fun days, the kids so look forward to these days every year, and I'm glad the school is able to let them have these days for fun!!!  I absolutely love volunteering at these schools!!!  It makes me happy to help out and I love the fact that, not only my kids' friends, but other kids in different grades than mine, know me!  They smile and speak to me outside of school, and it's an awesome feeling, to know that if even for a split second you made someones day!  I wouldn't trade the craziness of it (sometimes) for anything in the world! 
The end of May started the rollercoaster ride of the summer for us.  Rhenner and his little leg...after not complaining and playing and jumping around on it for almost 2 weeks, we find out it's fractured in 3 places.  This kids is SUPER AMAZING!!  Here we go...strap on your seatbelts, it's about to get bumpy!!

June didn't slow down for us either, with trying to figure out how the 3 fractures happened with Rhenner, Raina must have thought she was getting enough attention!  (Not really, it was truly an accident...we just teased her and her brother both about trying to keep up with the inside family joke, don't hang me for my sense of humor!  *S*)  The first day of summer and Raina was finally getting to go over to a friends house...I don't even think they were 15 minutes into the playdate when I got the phone call...Talk about a long trip to Sistersville Hospital, I was trying to get there as fast as I could, yet taking it slow as not to jar Baby Diva's arm too much.  Anyone have some extra Prozac laying around at this point??  Momma is trying not to lose it here!  ;-)  She had emergency surgery the next morning and was casted up and good to go!  We were still working on Rhen's dx though, in Pittsburgh...I will not go that direction again for such a thing...'nuff said about that! 

So, there are the first six months of 2012 in a nutshell...I will do the last 6 here shortly, for now, I have a little girl who is saying something about being hungry.  Better go take care of that!  Until the next post...

Peace, <3 and ~HUGS~

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~