Hey Kristi...Where Ya Been?

I know I know.  It's been FOREVER since I have posted a blog.  The holidays....Work....Kids home for almost 3 weeks....My life has been just a WEEEE bit chaotic. Forgive me.

Medically were are in a bit of a lull.  A very good thing, especially with brain tumors!  But, our doctors are taking a very 'hands off' approach, which kind of makes me crazy.  They are supposed to know what they are doing....And trusting this type of treatment goes against EVERYTHING I believe in.  I want a FIX.  I want a CURE.  And I want it NOW!

MRI's every 3 months...And just believing that God has got us in His hands, is the best I can do.

Tumors are scary.  Trying to explain what's happening in our family, to someone who doesn't know the world of Neurofibromatosis is really hard.  

I say "tumor"....they think "cancer" (and yes, I know sometimes with NF, that's exactly what it means)  But generally speaking, NFers have tumors, that aren't cancerous...And that's hard for the average person to understand.

And NF isn't something you can talk casually about.  It's complicated.  Especially for me, living with it, and trying to explain it, while also remaining positive.  I usually get that deer-in-the-headlights type look...As if saying...."YOU HAVE A BRAIN TUMOR AND YOU'RE STILL WORKING...?"

Yes. Yes I do.  

I also have THREE children with various types of brain tumors.

This is OUR life.  This is OUR normal.

Speaking of work.  I got a promotion.  It's a good thing....That has forced me to stretch far outside my comfort zone....Something EVERYONE should do from time to time.  But it has also left me kinda...sorta missing my life BEFORE this job.  

I spend 9-11 hours away from my family....And I truly miss them.  For 2 yrs now, I've handed off all of the 'mommy duties' to my hubby...And he has done a fabulous job...But I long for THAT craziness.  My heart will ALWAYS be a stay-at-home mommy...And I hope that life will fall into making that happen for us again.

One of my New Years Goals is to become passionate about writing again....And eventually get my books out from the cobwebs, and published.  Managing my time, is not something I am very good at...When I'm working, there is -0- time for writing...When I'm home, I am exhausted from working...And when I have a day off...I just want to soak up every second of that time, with things not related to work or the constant medical demands.

Don't worry though....We are STILL THRIVING.  

Thriving Takes Action

As a human being, it's easy to focus on the negative things in life.  I mean let's face it, life is HARD! And sometimes, life is unfair.

I didn't grow up as an overly optimistic person.  In fact, there are times when I think I am hard-wired to be a frustrated- angry woman....Just like my mother.  (There are even times, when I actually think, that way of life would be easier)

I have to work HARD....REALLY HARD sometimes to push out all of the negative - toxic feelings I have.

I got this e-mail from a father, who is having a very difficult time accepting the diagnosis of NF for his 3 yr old son.  He's angry (I understand) And he can't see the good in anything right now.  His words "I feel hopeless".

I feel this way too.  I sink into despair.  The amount of guilt I feel sometimes, when it comes to NF is unbearable.

But then what...What do I do with all those emotions?  Where do they go?

Those emotions - ALL OF THEM - are inside of me.  They are real.

But they transform into the energy I need to push myself forward, instead of allowing them to swallow me into a pit I cannot get out of.

HOW?  It's a very deliberate effort.  I recognize what it feels like....And what it looks like when life's "Stuff" starts to take its toll....And I know that everyone around can feel and see it too.  So...I make a choice.

It's like that saying-
"Whenever you do a thing, act as if all the world were watching". Thomas Jefferson

Positive thinking engages ALL me.  It puts ME in the drivers seat.  Puts ME in control of MY life.  And when other people notice - and recognize my efforts, it just makes the NEXT time I am facing a difficult situation, a little easier.

"THRIVING Takes ACTION-  When you CHOOSE to TAKE ACTION...Instead of letting life act upon YOU....That's when you THRIVE!" - Kristi Hopkins

THRIVE ON

The Challenge of Being Challenged

I remember my first roller coaster. I was 8. I stood before the GINORMOUS set of tracks, that twisted and turned....And even went in a loopy loop. As I stood in line, with my older brothers, who were SO excited -- I silently prayed that something would happen to get me out of this....

Maybe I wouldn't be tall enough....

Maybe I could pretend to be sick....

Even today, I build in a THOUSAND excuses for just about about everything I do. Don't do. It's AMAZING....The amount of excuses I come up with. Now these are legit....Excusable excuses, and get me out of doing anything I don't really want to do....So I'm not really hurting anyone.

Or am I...?

Have you ever done anything that makes you scared...? But you do it anyway...? Like some unknown force is drawing you to the other side of that scary thing...?

We get comfortable in our lives...At least I do....And the MOMENT I am challenged in any way....I want to fall apart. To withdraw. To run. (In the opposite direction!)

This is true with everything in my life.

Exercise - Speaking - Church - Marriage - Kids (I could go on and on)

I don't like to be challenged....Or taken out of my comfort zone.

Heck, just putting myself out there online is sometimes a challenge. (And I have this computer screen to hide behind)

Challenge is difficult. It's MEANT to be. It's meant to steer you in a direction that makes you grow...And learn....And even sometimes fail (which is where the learning comes in)

When it was our turn to get in the roller coaster car....My brothers sandwiched me, and pushed me forward! I WASN'T READY!! I NEEDED MORE TIME! I WAS SCARED!

I was SURE I was going to fall out......I was sure that the roller coaster was going to get stuck....And that I would need to be rescued.

We sat down in the car...I was belted in....And AWAY WE WENT.

I remember shutting my eyes and screaming. Hanging onto the bar in front of me for dear life! I remember my brother telling me and he wouldn't let me fall out.....He put his arm around me..."See...? I've got you."

But halfway through our ride....BOTH of my brothers hands were in the air.....And I was left with just a belt and a bar to protect me!

I screamed louder and LOUDER....

And before I knew it....The ride was over.

As my belt was released...I opened my eyes...Looked around.....I was okay. I survived.

"Let's GO AGAIN!!" I squealed.

We went on that roller coaster 7 TIMES!

There's nothing wrong with being scared of the challenge – as long as you're willing to feel the fear, and do it anyway. It's all part of Thriving. With NF, with anything.

I may be afraid, but hey, BRING IT!

Thrive ON!

Teenage Life with Neurofibromatosis

Life is hard.  Being a teenager is awkward and filled with hormones and emotions that run wildly rampant...Often sending teens into feeling depressed, angry...even, in some cases suicidal.

When I was 14 years old, I attempted suicide.  I fumbled through my parents bathroom drawers and found a package of Nyquil Liquid Gels.  There were 6 pills left.  I was SURE this would do the job...So I desperately popped the pills out of the foil, into my hands and swallowed them all as I stared at my reflection in the mirror.  I didn't think.  I didn't care.  I was desperate.  And I just wanted my pain to stop!

"No wonder they call me names!"  "I don't blame them for hating me..."  "I hate you Kristi!"

My symptoms of Neurofibromatosis were so mild back then (relatively)....But enough that the other kids KNEW I was different.  I KNEW I was different....But since doctors told me and my parents that I DIDN'T have NF....No one knew WHY I wasn't fitting in...Or why I just couldn't be "normal"!

There were no answers back then as to why I couldn't keep up in school.  Why I wasn't understanding the material being taught....Or why my body, was "freckly" and "dirty looking".

Today...We are raising 6 children.  THREE of whom happen to be FULL-BLOWN teenagers!

Two of those teenagers also have Neurofibromatosis....And life is definitely different for them.

There are no set of rules for ANY teenager, let alone ones who face the challenges that come with having a complicated/progressive disorder like Neurofibromatosis-- But there are things that I have learned along the way, that have helped.

First, and most importantly....Let your teenager in on what is happening!  KNOWING what they have, whether it's Neurofibromatosis, or any number of life-long heath issues is the key in to helping OTHERS understand, and more likely to accept them, which will in turn, help your teen accept themselves.

It wasn't my parents fault that NF wasn't diagnosed earlier (I was 34 years old and pregnant with my 6th child, when I was 'officially' diagnosed)  Nor was it their fault that I was horribly bullied...But they did miss vital clues, that could have saved me from a lot of the physical and emotional pain I was experiencing...

When it comes to my children's health.  ALL OF THEM....Even my 7 year old, who has been diagnosed with VITILIGO -a skin condition in which there is a loss of brown color (pigment) from areas of skin, resulting in irregular white patches that feel like normal skin...KNOWS what is going on with their health.

While my now 18 year old daughter was diagnosed with a brain tumor, that required IMMEDIATE surgical action, to put in a port, for chemotherapy...There were no secrets, and no sugar coating things.  SHE KNEW every-single-action, we as parents were taking....and SHE had input, and opportunity to express how she felt about what was happening to her.

If only...I had felt safe enough to TALK to someone, when I was kicked...and spit on....When girls in my gym class poked and made fun of my birth marks, and "bumpy skin"....How different would my teachers have treated me, if they understood that I had a learning disorder...and wasn't just "LAZY and INATTENTIVE"....?

Pay attention to your teenager!  Stay involved with the school and your child's teachers!  ASK THEM QUESTIONS about how they are feeling.....

Growing and changing into young adults is difficult all by itself....But when you add all the things that come with having Neurofibromatosis (tumors, birth marks, freckling, deformities, amputations, learning challenges, emotional issues, social problems....Not to mention - a higher-than-normal amount of doctor visits....)  Things can get a little rough for your teen....And being able to be open and honest with them about what they are feeling is SO IMPORTANT....Remember- that it's not just YOU going through this...It's THEM too!

Let your teen FEEL what they FEEL.  Try not to make them feel like they should just deal with it ...without being able to get emotional.  Allow them get be Angry...Sad...Whatever....And give them ways to cope....I know there have been countless days, where my daughter Bailey has become very upset with having NF.  Life is "UNFAIR"...She HATES what her body is doing....And feels hopeless and confused....

VALIDATE YOUR CHILD!!!!  Let them know you are there for them!!  Those feelings are part of the coping process!

Joining a support group, FOR TEENS going through the same thing HELPS BIG TIME!  At first, my daughter was resistant to the idea of talking to "strangers" about what is happening...But - over time - this has been HUGE in helping her through some pretty tough stuff!

WWW.CTF.ORG has been AMAZING!  Bailey has gone to camp a few years in a row, and connected with kids her own age, that also have NF....Building those relationships has been a very important part in helping her know that she isn't the only one going through this.

Also...As a parent...YOU should have a way to process what is going on as well.  It's tough being a parent, watching your child go through a diagnosis -- It's confusing, heartbreaking and emotionally exhausting!  

You may feel GUILTY---ANGRY---CONFUSED

(I know I have felt ALL of these feelings)

YOUR FEELINGS ARE VALID TOO!!!

You, as a parent have a responsibility to guide and lead your child - and help them become the best they can be...But they can't do that, if YOU aren't the best YOU can be.

YOU...have to go through the process of accepting this, just like your child does....So learning ALL you can about whatever the diagnosis is...is extremely important!

While doing this, I know personally, that it can be overwhelming and scary...But - TRY - to keep things in perspective.  Not everything you learn about the diagnosis will necessarily happen to your child....GOOGLE is not the best way to learn...And always shows you the worst-case-scenarios of images and stories...So, getting your information from OTHER parents and families is the best way to learn...Not only ABOUT the condition...but also how to handle what is happening.

***Don't be afraid on 'what ifs'!  Ask questions!....And get involved! -  Find out if there are support groups...Or fundraising organizations for your particular diagnosis....Taking an ACTIVE ROLE will help not only YOU....It will also show your child that THEY TOO can not only accept what is happening....BUT they will also THRIVE!

THRIVE ON!!

The Home Stretch

The contest for the Atkins All-Star ends today....It's silly, I found myself refreshing the vote page over and over....Just HOPING that this would be a slam dunk.  That I would have thousands of people voting and I would sail across the finish line--Trophy in hand....

My husband is competing in a contest too.

He....RIGHT NOW is a half a world away, taking part in THE WORLD CHAMPIONSHIP of PUBLIC SPEAKING....

And...From him I have learned a very valuable lesson. (I listen honey...Even when you think I don't)

Is it THE "TROPHY" that matters?  Or is it the message that is being delivered?

My story has many UPS and DOWNS.  It has kinks and bumps(literally) And I am far FAR from perfect.  But this "voting process"...and the messages and comments I have received from the people voting for me has been so eye opening.

So what if I don't win the ULTIMATE GRAND PRIZE.....!?  Sure donating to CTF would be AWESOME....But I know that I put myself out there...Did the very best I could...And I have shown people that taking back control is possible...EVEN when the odds are stacked against you.

This journey has shown me that my story has touched people....And IF I don't win this contest....I am NOT DONE making my mark on this world!

THRIVE ON!!!

And Vote! 

VOTE HERE

Run Forrest RUN!

"Run Forrest RUN!"

I WAS running.  In fact this was my 2nd attempt to run a 1/2 mile.  I was determined to beat my previous time and was on course!  I was focused.  My feet hitting the ground in a steady, pounding pace.  

My daughter was by my side, encouraging me to "keep going"....and my husband was in the car playing a Bonnie Tyler song that was about fighting for what you want.

I was half-way through my run, when I heard some people behind the fence yell and laugh at me...."Run Forrest RUN!"  And just like THAT, I was deflated.  That FAT - TORTURED 8th grade me, who I thought I had let go of was back.

My pace slowed and my body just gave up. 

I was crushed and angry!  WHY!?  Why would I AGAIN allow people on the OUTSIDE affect all the changes I have working so hard on, on my INSIDE.  The person I have been becoming has taken so much work....I have had to shut so many doors, with those demons inside that have hurt and controlled me.

It made me realize, that I still have a LONG way to go.  100 pounds GONE from my body, but, In a lot of ways, that tortured 8th grade girl still lives inside me.  Aching and longing to be healed.

When I got home, still huffing and puffing from my run...The defeat I felt was overwhelming.  One stupid comment from someone -And there I was crying, like I did everyday during my walks home from junior high.

All these changes I have been making, that were transforming my body, I realized were doing NOTHING to my insides.  I have been working so hard - I have been so focused on being an overweight woman, and I thought the outside changes, would automatically change me inside....I was wrong.  Very Wrong.

Even writing this blog post, shows me that I continue to be a work in progress.  Everyday, every hour, every minute- I am working on myself.

Forrest Gump RAN.  He RAN and RAN and broke free from his braces.  BRACES that held him back!  And once he was free....He was STRONGER and BETTER!

So....Go ahead and YELL at me.  I am learning that those mean - nasty comments, will only continue to make me stronger.

THRIVE ON!

  

Thrive Thrive Thrive

Thrive Thrive Thrive

As I write this, Bailey is laying in the other room undergoing yet another MRI - this time focused on her back.  

A few months ago, we discovered that Bailey has Degenerative Disk Disease.  "The back of a 70 yr old" our doctor told us, half joking. 

After months of failed attempts of physical therapy, it is clear that something MORE needs to be done.  But what?  We have been told there is no surgical "cure" for DDD.  Therapy has seemed fairly useless, and medications consist of narcotics, which I really don't want my 16 yr old to rely on.

Several Xrays later...We have learned that Bailey has several stress fractures, a few rotated disks and possibly the beginnings of Osteoporosis.  This...To go along with 2 inoperable brain tumors...And possibly a failing liver.

Me? I am sitting here thinking of ways to stay positive.  To focus on all the good that surrounds us.  There is SO much good.  I see the smile that seems permanently cemented on Bailey's face...No matter how much she is facing.

Finding the good is not easy to do in light of the news of Sandy Hook Elementary. I've spent the weekend crying over the many lives that have been forever changed by that senseless act.

Sometimes I let myself get a little too wrapped up in events like this-  I allow tragic events like the one on Friday....Or the trial for Casey Anthony affect me in really negative ways.   I wish I could rescue every little child in the world.  But then I hear the buzz/kachunk of the MRI, and wish I could just save my own.

"Thrive, Thrive, Thrive." 

I admit, it sounds silly. Pollyanna, perhaps. But when I close my eyes and silently chant this simple word over and over.  I feel better.  This word...Has become very important to me and my family....Especially when things aren't going the way we would like them to - which seems to be nearly every day lately.

People have told me "Sure, it's "easy" to THRIVE when things are okay with you and your family - you should try living MY life."  And yes, when the MRI reports are "stable", and the side affects of chemo are at a minimum, it IS easier.

 We haven't seen those days in months.

 Today I feel like I'm stuck in the middle of the ocean - trying to swim for shore, but with each stroke towards home, I'm slammed backwards by one wave after another - constantly pulling me back into the ocean.

I'm Exhausted.

Thriving doesn't always mean spending life with a smile on my face. That doesn't equal Thriving. Often it equals lying. Thriving isn't even knowing you'll make it to the shore. Thriving is CHOOSING to keep swimming, to stay above water anyway you can. It can mean resting and floating for awhile. It means never choosing to just sink and drown yourself in sorrows, pain and fear.

I work to be a lighthouse in the world for NF, and a life preserver, or at least a piece of driftwood, for my family to hold onto as we go through this current pain. Perhaps, if enough of us band together, we can build a boat - and even if we never hit shore, we can party together through life.

Just keep Thriving. 

More PT....More PAIN!

We were told 5 weeks ago, when we started PT, that there was nothing the therapist could do, to help Bailey.  And she was right.  So not only do we have to meet with the Neurosurgeon, to address a growing Acoustic Neuroma....We now have to go back to Orthopedics to see what...if anything can be done for Bailey's back issues.  Click HERE if you would like to read more about these issues.

We tried.  We gave PT a fair shot...

Still Thriving 

Happy Halloween?

I always look forward to this time of year.  The changing of seasons brings me to a place where I feel good.  Hopeful even.

Halloween has always been a favorite of mine...Knocking on door after door....And being given FREE candy?  Who wouldn't like this?!

As a kid, my older brothers were responsible for making sure I I didn't get lost on Halloween night... And we'd stay out for HOURS.  Our pillow cases stuffed full of candy, by the time we returned home...Where we would then dump our stash all over the living room floor and play the trading game.

M&M's for Snickers bars....Tootsie rolls for Milk Ways....

We didn't worry about strangers....And in our childhood world, life was pretty safe.  It's not that there weren't bad people, who did bad things...Because everyone knew those people were out there...But in our minds, we were untouchable.

I have become fairly invested in the story of Jessica Ridgeway.  The 10 year old girl who was snatched while she walked to school.  She was murdered....Then dismembered and tossed away like garbage.  Jessica's story hit our community hard....and continues to.

She could have been ANYONE'S child.

This senseless act has made such an impact on the community that this Halloween was different than any other I have ever experienced.

I KNEW that we were going to the do "traditional" door-to-door thing...To me....Life will always have bad in it.  It's not like I walk around completely ignorant.  But I refuse to allow all that bad, stop me from living life.

Last night, my kids and I walked our neighborhood and I felt so sad as I looked around at the empty streets, and darkened doorsteps.

The handful of houses that DID have their lights on, acted surprised when my children excitedly ran up and knocked on their doors!  So surprised, that MOST gave out handfuls of candy. (which of course, my kids accepted with no problem)

Is it that people don't want to move on?  No disrespect meant at all....But LIFE has to CONTINUE!  If it doesn't....What a waste!  I refuse to live my life in fear that something tragic will happen....I refuse to teach my kids to be scared of going outside.

We can teach our children (and ourselves) to be cautious and aware...WithOUT instilling fear!

So...We will (as long as it remains legal) to Trick-or-treat.  We will continue to LIVE.

And of course...We will continue to THRIVE!

Happy Fall!

 Brooklyn as "Eeyore"

 Bailey as "The scary candy hand-er-outter"

 Rachel as a "Vampire Princess"

Watch Out Bella!

 Riker as "Ninja Warrior"

 No surprise here...Riley as "Death"

The Gang...Braden as "Cowboy Kruger"

September 11, 2001

I know that there will be endless blog posts from people about this day.  There isn't much I can say, that others haven't already beautifully expressed.  But this is a day of remembrance....A day to pay tribute to the lives that were lost, and the lives that continue on, in the shadows of a devastating tragedy.

I will make this short.  We all can remember where we were on this day, and what it felt like to watch this unfold...So today, just take the time to give THANKS and send a prayer up.  Do a positive and kind gesture to a complete stranger....Something that makes a difference! :)

We can't change the past...But we CAN give hope to our future!

THRIVE ON!

Failure to THRIVE...I don't think so!

Rachel is my teenie weenie, ball of energy.  She was born full-term (late in fact) right after Thanksgiving in 2002.

Rachel was 'officially' diagnosed with Neurofibromatosis when she was 5.  This was after MY diagnosis and came when her pediatrician urged us to see an Ophthalmologist because of some severe crossing and "mysterious" markings on the iris of both of her eyes.

I knew before the the Ophthalmologist even said the word, that Rachel had NF.  But now - Finally - The pieces were coming together...And the fear of this dreaded disorder were coming full circle. 

During Rachel's MANY doctor visits, it was noted in charts, that Rachel's height and weight, were not even touching the height/weight ratio markers.  ONCE, Rachel hit the 5th percentile, but the next month, she was back down to the 2nd %.

Last month, during Rachel's 9 year old check up, her doctor said a phrase that I swear I thought I'd never hear....

"Failure to Thrive".  

I found it EXTREMELY ironic that this phrase was left floating in my head, after we left the doctor that day. "Failure to Thrive?"  Are you kidding me?  This goes against EVERYTHING I have been working for...Everything I had been imagining my life was about.

We were asked to come back in 3 months to do a medication check, and to also check Rachel's weight, to make sure we were heading in the right direction.

Today was that visit, and Rachel was down 1/2 of a pound.  That's not a lot of weight...But when you only weigh 41 pounds...It IS a lot!

That phrase came up again...."Failure to Thrive"....I don't like it.  I don't look at my daughter and see a child who isn't THRIVING.  She is happy, healthy, spunky, silly, energetic, social, fearless, tough, alert (I could go on and on) 

Do YOU accept labels?  I know sometimes a label can be a good thing, especially when it comes to education.  But what about a medical label?  I know for SURE, I don't like being known as "the woman with the bumps"....or "The woman with ALL those kids". (I've been called some other pretty bad things..But we'll keep this in the positive)

I don't like labels...and I refuse to wear them, or allow my children to wear them.  Bailey isn't known as "The one going through chemo"...Braden isn't known as "The kid who can never look you in the eye."..and Rachel FOR SURE won't be know as "The failure to thrive kid".

Labels limit you (Or CAN, if you allow them to)

So, while Rachel may live her life "off the charts"...We accept and embrace this as part of who she is....Definitely not WHAT she is.

THRIVE ON!

Be Still My Heart

So, I used to HATE Valentines Day!  

That is...Until I hit Second Grade.  Ahhh Yesss.  I was in LOVE!  His name was Scott Loveless, and he played the most amazing game of handball I had ever seen.  He had sandy brown hair, and green eyes...and lived just down the street from me.

Valentines Day in second grade was something SPECIAL...And I wanted to be sure to give Scott something that he would remember forever!

The night before our school party, I stayed up extra late to make sure that MY Valentine to him would be seen by all!  I glued and cut red and pink ribbon to a construction paper heart and wrote with scribbly handwriting:  Scott + Kristi!

At the party the next day, I folded up my gift, and placed it inside the bag the hung from his desk...I went to turn and there was Scott smiling at me.

"Uh...Hi there Scott!"  I said...With a mouthful of candy hearts.

He just smiled and handed me a folded up piece of paper and walked away.

I looked down at the red paper, that was folded neatly into a square, then looked back at Scott who was looking at me!  He just smiled and mouthed the words, "Open it later."

Are you kidding me???  I dashed to my desk, sat in my chair and began unfolding the paper in my lap (so no one would see)  I kept glancing up at the kids in the classroom, who were going around the room, comparing and swapping Valentine candy.

My hands were shaking, and my heart was racing...."What would it say?  Does he like me too", I wondered.

FINALLY...I got the note open.  I smoothed it out on my trembling legs and started to read.

DEAR KRISTI

You are always looking at me and smiling.  I don't like you, so STOP IT.

FROM SCOTT  

I began hating Valentines Day from that moment on.  Until I met my hubby, who LOVES me looking at him and smiling...Or at least he has yet to pass me a note saying otherwise. :)

I hope you all have a wonderful Valentines Day!

Thrive On

Urologist. AGAIN!

This has nothing to do with Neurofibromatosis.  Just a fair warning.  But it DOES have to do with our fight for proper medical care.  Sometimes, I wonder with some of the medical care our family has gotten, if the doctors are just tired of hearing "Hopkins"...That is not to say that we haven't received some great care, but there are times, when I just wish I had gone to college to be a doctor.  I would definitely treat people with more care and respect than I have gotten.

My 11 yr old daughter is being seen at the Children's Hospital Urology clinic....AGAIN.  This poor girl has battled UTI's since she was 4 yrs old.  Quite exhausting.  For HER and for ME.  The specialists can't seem to figure out why the infections keep happening, leaving all of us frustrated.  At one point my daughter begged me...."Isn't there some kind of surgery, to fix me?"

My heart breaks for her.  She knows she is different....She knows the doctors can't figure out why, and she is as desperate as I am, to find a "cure".

Riley has taken countless bottles of antibiotics, and has taken part it NUMEROUS urological tests. None of which have pinpointed the cause of the UTI's.

My daughter is now on "prophylactic antibiotics" and has been for the last few yrs.  But we still have issues.  We seem to have exhausted treatment, leaving the doctors and our family wondering what's next.

We have had to fight for every test, though.  I feel like I have become a professional when it comes to going into the doctors office, and pushing them to give us full care.  I get so sick and tired of hearing the "Oh it's nothing." or "Let's just give this a few months."  I WANT TREATMENT NOW!

I am the one who asks, "What's next?"  While the doctors are ready to put Riley's chart in a box and "let her grow out of it".

It takes effort to get what you want and need...Sometimes, it takes going to a different specialist...One that WILL go the extra mile, to help you figure out the answers.  I've been learning this...And RE-Learning this....I AM THE ONE IN CHARGE---NOT THE DOCTOR!  The doc just gets to be the one who follows through with the proper referrals and/or treatments.

It's definitely been a hard lesson for me.  I am the type of person who HATES confrontation....One who never questions anything!  So, when it comes to standing up to a person who has 15+ yrs of College, and degrees on the wall....WHO AM I?

I am a PERSON!  I MATTER!  MY CHILDREN MATTER!


Thrive On!

Reason for the Season?

How would you respond if everything you owned of earthly value were taken away from you?  If you had nothing left but your relationship with God?  Would you give in to the worries of this world?  Or find your strength in Jesus Christ alone?


I know that I talk A LOT about Neurofibromatosis....This IS a blog about NF after all.  But there is much more to me than just NF related stuff....So much more to me than JUST medical stuff...Hard to believe, I know!


I am a lover of Jesus Christ.  I'm not ashamed to admit it...In fact I take great pride in proclaiming this.  But lately - especially over the past year, I have gained a new perspective on my relationship with the Lord.



The reality that things and people that I love and care about could be taken from me at any moment gave me a new realization that I needed to change my ways.


At church the past 2 weeks, I have been teaching the Sunday school kids about Job. (No, not J-O-B...The man named Job, who was a lover and believer in Jesus, and who never wavered in his beliefs, even when everything he cared about was taken from him)


It was interesting, when I asked the children in my class, what as on their Christmas 'wish list'.  The kids had no trouble listing off some really cool things.  "I want a remote control race car!"  "I want a baby doll that can eat real food!"  "I want transformers!"


But when I asked them what they would do if they got everything they wanted, then the next day, it was all taken away...They sat  in silence.


One boy finally said he would cry, another child said they would be mad, then there was this one...he said that he would ask God why He took those things away...


Job knew exactly where he stood with God, which I find amazing.  The story of true faithfulness brings me to  such great humbleness that I find myself feeling ashamed when I look around my house.


The biggest lesson I get from the story of Job, is how selfish I can be...I allow how and what the world thinks of me affect me in real ways.  I get so worried about not having enough...giving enough, being enough...and that selfishness prevents God from blessing me more.  


The thing I have to remember is that everything is GOD's....Not MINE.  And everything that is in my life, that isn't OF GOD, is worthless.


This Season, and Forever, I celebrate the true reason for rejoicing!


Thrive On!

There With Care!

Early last school year, my daughter Riley, gave a quick presentation in front of her 4th grade classroom. She told the story of our family, and how her older sister Bailey was diagnosed with a brain tumor, that required chemotherapy.  Riley also briefly explained what Neurofibromatosis was...and how the disorder affected others in her family.

A few days later, Riley's teacher caught up with me on the playground of the school.  She quietly asked me questions about NF; what it is exactly, can it be cured, what treatments are available, why chemotherapy etc.  She then asked me if I had ever heard of a company called 'There with Care'....

When she explained what this company was, and what they do for people...I honestly blew it off.  I thought..."We aren't one of those families."  The teacher gave me a pamphlet, and told me that I should really look into signing up.

Over the next few months, we got word that Bailey's tumor had DOUBLED in size, despite weekly chemotherapy treatments.  A change in chemo, and countless complications from doing that followed.

One day, I was cleaning up around the desk, and the pamphlet the teacher gave to me months before fell to the ground.  I went to my computer and typed in the website www.therewithcare.org  and began reading.  Countless stories of children and families dealing with cancers, or other life altering illnesses, filled my heart with so much sorrow.

As I continued reading, I realized that, we ARE one of those families.

Hospital stays, blood draws, port access, fevers, nausea/vomiting, hair loss, weight loss....We were dealing with something very serious, that not only affected Bailey, but the ENTIRE family as well.  So I began a letter to MaryBeth, the program coordinator.

A wonderful e-mail returned asking me for more details about our family and her offer of different things that could help our family.  Hesitant to accept, but graciously appreciative, I told MaryBeth I would call her about the offer she gave to our family.

Two days later SHE called me to check on our family.  I was emotional and stressed and she gently pressed me to tell her what was happening....I told her about our van not starting, and the mess of complications Bailey was experiencing from the chemotherapy.  She offered a quick fix for our van and told me she signed us up for a delivery of pre-made meals.

There with Care has truly been THERE with CARE.  A few days ago we saw yet another reason this company exists.   Our 2nd car, died...The fuel pump went out, and left Rich stranded a few miles away from home.  A gracious 'good samaritan' helped push the car to a parking lot and a friend drove Rich home... Then the worry about HOW we were going to get the car fixed followed.

There with Care came to the rescue.  They towed the car and delivered it to Wolf's Auto Care in Boulder. This auto place donates their time and experience to There with Care to help families who don't have many connections or options.

The car we take to and from chemotherapy was fixed within hours and given back to us.  I was so impressed with how quickly and wonderfully the issue was dealt with.

There with Care gives without asking anything in return.  They help because they see a need.  They give because they know it makes a difference.

Our family would like to show its heartfelt appreciation to this company for everything they have done!  You have helped us see that when help is needed, there are "Super Heroes" that come just in time!

This organization would not exist without donations and support from various contributors...So I would like to thank them too!  If you would like to donate in any way, please go to www.therewithcare.org 

Thrive On!

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

Blogging Through Chaos

This morning, my oldest daughter started High School. I watched as she headed into the GINORMOUS building. She looked so small walking towards the doors. I wanted to get out of the car and run after her. I wanted to bring her back home, where she would be “safe”.

But I let her go....

I headed to the grocery store to pick up milk and caffeine. Two MUCH needed items in my house! My mind was whirling and it was barley 7:30am. The kids at home would soon be awake and hungry...But I found myself taking my time.

This day held busy-ness. With summer still hanging around for 7 kids at home...Chaos loomed, pending my return from the bliss, I found in grocery store, being able to shop alone.

What's it like blogging through chaos? Let me tell you...It's a bit like.....

8:30 am....Ya, kids were sure hungry. 7 kids ate an entire box of those pancakes on a stick. The box says there were 10 inside...so where did the other 3 go? I guess Riker and Brooklyn were EXTRA hungry.

Two kids had an assessment test this morning. Seems Riley is reading on an 8^th grade level. She's excited...and wondering if THIS teacher will let her bring her Twilight series to school. Rachel's school got things confused and put her BACK in second grade....She wasn't too happy about that. Chaos? Ya I got chaos. :)

Both kids ended up happy with their teachers...and Rachel was put in the 3rd grade, where she belongs.  YAY!

I get back and see 5 kids rolling around on the floor complaining of “dying of boredom.” “That's impossible I tell them.” And I try to get back to my blog post. Chaos?

Lunch was a mixture of whatever the babysitting kids brought, mac-n-cheese and otter pops. And oh, I found the rest of the pancake sausage on-a-stick things...They were under the kitchen table.

Riker decides he wants to catch up on his summer workbook. “This is This...That is That”...He writes his “N's” and “D's” backwards....But reads REALLY well! I'm so proud! Brooklyn drips her otter pop across the kitchen floor...then Carter walks behind her, saying “COOL...blue footprints!” UGH! CHAOS! :)

I look at the time...I still haven't put make-up on! Did I go to the school like this? Really? I have to go pick Bailey up, and get to the dentist, with Braden and Riley. Thank GOD, this dentist sees our kids 3 at a time! The younger kids went Friday and got their pic taken to be a part of the NO CAVITY CLUB! Woo hoo!

I hit construction on the way to get Bailey...and the car is overheating again.

We show up at the dentist and the lady behind the desk says our appnt is at 3:00pm, “YOU are REALLY early!”, she tells us. Why did I write down 2pm?

What's it like blogging through chaos? Let me get back to you on that one....

Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

More Low Blood Counts

I was SURE Bailey's counts would be higher today!

Saturday night, when I got the call from the camp Bailey was at, her blood count was at 1.  She had a 102 fever and was quickly hooked up to antibiotics and IV fluids....But they didn't help.  Sunday morning, I was called to come get Bailey from camp.  A friend from church came and picked up 4 of the kids, to make the drive a little easier.

When Rich and I finally got to the camp and saw Bailey....She didn't look sick to me.  I was shocked when I was told how sick she really was.

We were to go straight to the ER...But needed to drop Rich off with kids, so that I could just stay with Bailey for as long as it took to get her fever down, and her counts back up.

When we got to the ER, Bailey's temperature was 104.2...NOW, she looked sick.  I have NEVER seen any of my children with a fever that high.  Bailey, most certainly has never been THIS sick.

We were admitted Sunday night based on blood counts and fever.

Monday, Bailey was still running a 100-102 fever....but her counts were rising....Still extremely low....but headed in the right direction.

Tuesday she went ALL day, with no fever....She was FINALLY eating....and things were great!  Her counts increase from the previous day, and the Drs were sure that Wednesday, she would be able to go home...As long as counts continued to rise.

Wednesday morning, the doctors came in and told me her counts went way back down.

We have cultured her blood and can find no reasons why this is happening....No reasons for low blood pressure.

So we just stay here....Where Bailey can be monitored until her counts stabilize.

While extremely frustrated...We have faith that God heals!



            When you come to the end of your rope, tie a knot and hang on.  

~Franklin D. Roosevelt