A Rare Disorder?

I have done a lot of reading (especially lately) and seen articles that refer to Neurofibromatosis as a "Rare Disease"....But...In the SAME article, state that NF is THE MOST COMMON disorder/disease that affects humans....Soo....What is right?

As I researched, I was able to find THIS description of what "Rare Disease" means:

 

Sounds accurate, when it comes to NF, doesn't it?

When I explain NF to friends or any interested person...I have NEVER once told them that I have a rare disorder called NF....My explanations typically start out with how COMMON NF is...

1 out of 2500 births!

While it IS true -- That NF carries a very HIGH LEVEL of complex symptoms....Maybe, if we took away the "easy out" excuse that NF is rare...and began talking about how common it actually is...Will get more people talking and learning about it...Just Maybe?

THRIVE ON!

Excuses Excuses!

My FIRST thought, when I was asked to join a kickboxing class was that my tumors were too noticeable...What if I get out there, and someone says something about my bumpy...sweaty body...?

Ya...What if?

See?  I am continually being reminded what THRIVING with NF is all about....

Life is filled with very real excuses...It's YOUR choice if those excuses stop you from doing something, or give you a reason to try harder!

THRIVE ON!!!

I sat there....Biting my nails, looking down at my phone...Playing my hundredth game of Candy Crush (trying to look "busy"...)

My mind was a mess....I kept wondering why on Earth I was so nervous.  I mean we've had close to 30 MRI's, over the last 3 yrs...So why was TODAY any different?

I'm not sure.

I had this feeling of dread.  Bailey has been on her "Chemo -Break" for 3 months....And I guess I was SURE we were going to get bad news.  I didn't want to talk myself into it....But I was definitely preparing myself to hear those words, no parent of a child with brain tumors wants to hear.


GROWTH.


After the MRI...We headed upstairs to talk about the results.   We were sent back downstairs to give the Drs time to read the MRI...This did NOT calm my nerves...or Bailey's.

We got some lunch and visited with another NF mom, who works with the NF clinic and CTF...What a GREAT distraction this was.....*Thanks Jane*

During lunch, Bailey prayed the sweetest, most heart-breaking prayer I've ever heard...."Dear God....Please take away my brain tumors."

Ouch.

At our appointment, we met up with Molly...(I just love her.  She listens.  Sympathizes. and Follows through)
We were told how "Awesome" Bailey's labs were and how good Bailey looks (always lead with the good stuff.....I know this trick)

On to the tumors....JUST TELL US, my mind screams!!

While there was slight growth....Molly tells us this is still considered STABLE.  But my mind focuses on that frustrating little word....Growth.  Confused....Growth -- But Stable???

We'll take it.

This is where THRIVING comes in.  Sometimes the answers are unclear...Sometimes the answers just plain stink....But we are living proof, that switching your attitude has EVERYTHING to do with your outcome!

THRIVE ON!

When To Worry...

It's the night before 'The BIG Day'....And I am texting my daughter, who is laying in bed scared.  I've gone to her, tried to quiet her fears....And even tucked her in.  (She's 17 years old...and still won't fall asleep until I have given hugs and kisses....and I will hang onto this, for as long as I can)

I'm worried too.  Our 3 month break from a 2 year long chemo treatment plan has my mind buzzing  louder than the MRI machine that Bailey will experience tomorrow. 

"What if the tumors have grown?"   "What if there are NEW tumors?"  "What if....."

God....There are sometimes that I get so ticked off at this NF!  It feels like every 3 months we play a game of Russian Roulette....And so far...We've been lucky....If you want to call 2 brain tumors....One of which could turn deadly....Lucky.

I worry all the time.

Thrive-Worry-Thrive-Worry

Not quite the balancing act that keeps one very positive.

This type of worry, though really brings life into perspective....At least it does for me.  This type of worry has me focusing on the ABUNDANT GOOD that surrounds me...Brain tumors and all.

There is so much bad in the world.

BUT...

Man....There is so much more GOOD.

Tomorrow will come....And then Tomorrow will fade into our memory  ---

Good News? -- Bad News?

Only God knows-

THRIVE ON!

Video Blog

Brain Tumors!

May is not only Neurofibromatosis Awareness Month...It is also Brain Tumor Awareness Month...And LUCKY US....We have BOTH!  (sarcasm intended)

Tumors can happen to anyone.  But tumors with NF are - unfortunately, a BIG part of life.

The tumors you see above affect my oldest daughter.  The top picture shows an Astrocytoma.  A benign - slow growing tumor that is in a very dangerous spot. 

Bailey began chemotherapy, just a few days after this tumor was discovered.  The news blew me away.  The MRI we had, was for the Acoustic Neuroma...and the last thing I thought we would hear, was that we had a NEW tumor to worry about.

Bailey went through TWO Years of chemo, to try an shrink, or at least maintain these tumors....

and although Bailey has been considered "stable" for the last 6 months...Both tumors are larger, than when we began treatment.

We have decided to take a break from chemo...and give Bailey's body some time to recover....

Next Week...We get to check in on these tumors, with our 'every-3month-MRI'

For Now...We live for TODAY.  Hope for TOMORROW 

and as always....

THRIVE ON!

May is Neurofibromatosis Awareness Month

When you google Neurofibromatosis...Literally thousands of web pages come up, giving you mounds of information...Sometimes....This information is good...Sometimes this stuff leaves me feeling depressed, angry and scared.

THRIVING WITH NEUROFIBROMATOSIS is not about sugar coating the information...It's about learning how to deal with everything in a positive and productive way.

Three of my kids have NF...To varying degrees.

Bailey

2 Brain tumors

Moderate Scolosis and Kyphosis

Headaches/dizziness

Hearing loss

Learning Challenges

Aspergers

Cafe au Laits + Freckling

Neurofibromas

Depression

Bailey is currently still on a break from chemotherapy.  She completed TWO LONG years of chemo, and while her brain tumors have remained "stable" for the last 6 months...They are both, still larger than they were, when we began treatment.

Bailey gets Hearing tests and MRI's every 3 months.

Braden

Left Side Optic Glioma

Moderate Scoloisis

Cafe Au Laits +Freckling

Autism

Learning Challenges

Braden has MRI's every 6 months, to monitor the optic glioma.  His vision has remained 20/20.  

Rachel

Growths in her brain

Vision Issues

Cafe au Laits + Freckling

Sensory Integration

Bi-Polar

Learning Challenges

Moderate Scoliosis

Rachel visits the Ophthalmology Dr. every 6 months.  She has had significant declines in her vision and the drs relate this to "under developed optic nerves".  She receives OT/PT and gets MRI's once a year. 

NF can easily overwhelm our family...So we live by the "one day at a time" rule.

"When I think of what THRIVING means...I think of being strong and setting a good example"

-Bailey Age 17