Monday, July 21, 2014


I couldn't sleep.  I was so excited.  My-First-EVER-Summer-Camp-Experience!  I tossed and turned -- Imagining what A WHOLE WEEK AWAY would be like!

I had just moved back in with my dad, after a LONG and nasty custody battle....And this sort of took my mind off what was happening....In reality, I barely thought of my mom after that.  I was 10 years old, and very confused about what was happening.  Maybe, that was the whole reason for sending me....

My husband called this....Going TO SOMETHING....To get AWAY from something....And I thought this was a perfect explanation.

I was getting away from courts, who demanded I be removed from my mother's custody immediately.  I was getting away from those first awkward moments of my dad's new wife...Who, while I was gone at camp, set up my room and bought me some new toys....since everything I had, was left with my mom.

The 'Outside' world didn't exist while I was gone.  I lived a life of MAGIC.  If only for a week.....


Now....It's MY kids' turn.  We have been blessed with a couple different Summer camps....All who accept children facing challenges, medically.  

Braden and Rachel attended camp at Round Up River Ranch....A beautiful place, that rests in Southwestern Colorado.....It's the most beautiful place.  I was lucky enough to have volunteered there a couple years ago.

Zip Lines, Rock walls, canoeing, fishing...and the most comfortable beds I have ever slept in!

This week, Bailey, Braden and Rachel are at a camp through the Children's Tumor Foundation....A camp for kids specifically with Neurofibromatosis.

A whole week jammed full of super awesome activities....A week where there are no doctor appointments, MRI's, blood draws....and....they can meet kids who have the same medical condition they do.

Every kid needs a break.  Every kid needs to experience a world that is outside of their own family.....A break from school, chores and video games.  A chance to LET GO and meet people....A chance to GROW UP and develop skills on their own.

And....Every parent....Also needs to learn to LET GO....and allow their children to experience a place where they are able to develop social skills that create confidence and a stronger sense of who they are.

A place to learn to THRIVE!

Thank you to Round Up River Ranch and Children's Tumor Foundation from the bottom of my heart...For giving my children the chance to experience the MAGIC of Summer Camp!


Saturday, July 19, 2014

LaLaLa....I Can't Hear You!

"Talk Bailey.  TALK.  That's why we are here...." But she wouldn't.  Or couldn't....And no amount of nudging or prompting was going to work.


Bailey is 18 now....So, technically I didn't even need to be in the room today. almost every way....Bailey is not 18.  She still needs me there.  Asking questions and advocating for her needs.

I'm not sure if it's a coping mechanism...Or just the way Bailey is wired.  She RARELY speaks when we are at the hospital....Even when doctors TRY to engage her, she often just "unplugs" and drifts off to....somewhere.  But, get her in the car afterwards....and she's back.

I never shame her for this...Because this is who she is and trying to force or move her into being more "normal" would be a futile effort anyway.

Life with Aspergers is complicated.  Life with Neurofibromatosis AND Aspergers, even more so.

Is it the learning disability that is making it so the Aspergers is more noticeable....?  Probably so.  At least in OUR CASE.

Call it an inability to cope....Lack of understanding....Or a combination....Bailey definitely knows about her medical issues...But as you can see from a very dusty blog of hers (BLOG)....She doesn't like to talk about it....or write.

While it may frustrate me - That my daughter, whose mother could talk all day about the drama of our very busy life...I get it.  If I were Bailey....I'd probably want to UNPLUG too.  The drama and seriousness takes MY breath away....I can't imagine what it would be like being 18, dealing with all that Bailey has on her plate.

If you ask Bailey if she's HAPPY.....She will smile and tell you "Duh...Of Course!"

So ... I guess THAT'S what matters!


Wednesday, July 9, 2014

We got to the hospital EARLY....I was still wiping the sleep out of my eyes during our drive.  A drive our family has made hundreds of times.   I'm amazed at how comfortable Bailey and I are....This trip used to bring so much anxiety....But now...It's no big deal.  Even when it SHOULD be.

Although we have gotten "STABLE" results from our 'every-three-month' MRI's and don't visit the 7th floor oncology doctors NEAR as much...We still have a lot issues.  Pain being our #1 concern.

Bailey's back is....Well, to put it bluntly, a mess.

2 years of chemotherapy has wreaked havoc on Bailey's bones....causing so many issues, that we leave our doctors with no real answers....No "fix".

Physical Therapy---6 different types of pain medications---Pain Patches---More therapy 

Finally, we were able to talk our doctor into doing something.....Steroid injections.  Not a permanent fix....But at least it was SOMETHING.

It's weird....Bailey is 18 years old now....All of the questions are being directed at her.  The questions that I am so used to answering....And letting go is hard for me.  She looks over at me - unsure - and still needing me - this brings me comfort...but, I know that she NEEDS to do some of this on her own now.

When our pain management doctor goes over our history...She asks us why Bailey's tumors haven't been considered for surgery....Bailey tells the Dr..."Surgery would kill me...and I kind of like living..."  

As she goes back for her injections....I find myself feeling so grateful for my brave girl.  Faced with so many complications and uncertainties....She pushes on.  She doesn't complain or feel sorry for herself.

After the procedure....We got a surprise -- The grand opening of Seacrest Studios in the hospital brought a flurry of famous people....Ryan Seacrest was the only person I really "knew"....The others ....I had to google when I got home.

Bailey begged to go meet these people....All I WANTED to do was get the heck out of the hospital....
Another lesson, taught by my daughter....This day wasn't about ME....

Lady Antebellum 

"Lexi" from Ant Farm

'Earth to Echo' Stars

Bailey is an amazing person.  She takes life on like no one I have ever known...even when she has every reason to just 'give up'....She goes beyond THRIVING with NF.....

Wednesday, July 2, 2014

You Know It's Summer Vacation When......

Yeah....It's been over a MONTH since my last post.  I only SORT OF feel bad about that. *smile* Quiet blogs mean the writer is out doing other things....

The last month has been KRAZY busy....The transition from the school year to Summer always has me hoping things will slow down...But I should know by now, that it never happens.


Medically....Things are stable.  Tumors - Vision - Hearing all have stayed relatively quiet for the last year.  I am extremely grateful for this -

Bailey was referred out for some steroid injections for her back.  These has proven to be MAGIC!  While Bailey still has upper back pain....the steroids have pretty much taken care of the lower back pain.

We will continue with physical therapy in hopes to get the upper back muscles stronger.

We have had STABLE MRI results for a YEAR now.  The Acoustic Neuroma and Astrocytoma both have not changed at all....And this moved us into a place where we only have to scan every 6 months now. :)

Braden has also gotten the "all clear" from scans of the new tumor that was detected last Fall.  And as long as his vision stays stable....We will just monitor symptoms as they come! 

Braden got invited - along with Rachel to Round Up River Ranch...A camp here in Colorado that serves children from all over the place.  It was an awesome week of fishing, canoeing, Rock wall climbing and zip lining!  

Speaking of Rachel....Other than therapy for Sensory issues....Rachel has managed to stay away from the hospital. (knock-on-wood)

Riley finished 7th grade with all A's and B's...And has been babysitting like crazy!  The freedom of having her own money is awesome and is teaching her how to save and what to make "important".  

Riker is getting ready to become a brown/green belt in karate...and finished 3rd grade with straight A's!!  He is in all advanced classes and continues to thrive at his new school!!

Brooklyn has had a big Summer so far.  We have called it "The Summer of facing Fears!"  She is now jumping off the diving board, like a pro.....Last year, this was a big deal.  :)

We also said GOOD-BYE to training wheels!  

It's amazing how fast time goes....And how quickly kids grow up!