Hiding with Neurofibromatosis

So, I've been working at the movie theater for 3 months now.  I've made my presence known as someone who is hardworking and reliable.  My favorite job there, is working in the cafe' as a barista...I get to make cool drinks and desserts...And I take a lot of pride in the products I send out to people.

I've become known as the best barista at the theater...And even have guests order something, just because...I AM the one working.  Even having one guest tell me that his Iced Coffee with Caramel...was like having an "orgasm in his mouth"...

-Jaw Dropped-

I am having a lot of fun, but I still struggle with being 'out there' - in front of people.

It's a constant struggle.

Sometimes I feel like a hypocrite - Claiming to THRIVE with NF...While inside, I am still trying to figure out how to deal with the constant battles I have in regards to WHAT I THINK is happening when someone sees me.

I'm under these bright lights, so I know that I can't hide my bumps.  I KNOW they can be seen...So, then I have to find ways to make up, for how I come across.

Being EXTRA nice....Helps.  The fast-paced flow of people makes it so people don't really have much time to stare and ask questions...I literally can help 400-600 people a night...

But I am realizing that I am one VERY insecure person.

It doesn't matter to me when someone says "who cares what people think."

I always have cared.  And I always will.  And I guess what REALLY matters, when it comes down to it...Is if I CHOOSE to allow what people THINK of me, affect how I feel/think of myself....And if I let those people stop me from going out into the world and THRIVING.

I know that even 'perfect' people deal with how they feel about themselves...Look at all the people who get cosmetic surgery...Even tho, they REALLY don't need it...

Losing 120 pounds has surprisingly done little to help me feel better - emotionally.  I thought I would be magically transformed...Shedding the old me...But that's not what has happened.

My bumps are here.  I am who I am.  I have to learn how to embrace this....Even when it seems impossible.

I am always working on myself.  Always STRIVING to THRIVE!

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!!

That's What Makes You Beautiful

So just by chance, I got to watch this video on YOU TUBE about a woman who was talking about beauty.  Ha. Beauty. Something I struggle with every single day!  What does SHE know, I thought.

But then I listened.

And Listened...

This woman who was scarred after a burn accident as a child, hit the nail on the head.

My ENTIRE life, I have been stared at, made fun of, tortured and ridiculed.  All because I didn't fit in with other peoples idea of "perfect".

I was short (still am, go figure), chubby (working on that), wore glasses, had braces....And, had a disorder that while THEN it was so mild,, that doctors didn't even pick it up....But...made me different enough, that I would never EVER be considered "normal".

Mocked. Teased. Tortured.

My prayers back then were NOT for them to accept me and be my friend....They were for ME to change and be like them.  Wait.  WHAT?  Be like them?

Ignorant - Nasty - Judgmental?  

The woman in these You Tube videos described a pivotal moment in her life, when her perspective about what people thought about her changed.  I related with her and her story in such a huge way.

No....I am not scarred (on the outside anyway)  But I AM different.  Having Neurofibromatosis comes with visual confirmations that I am different.  I get judged and have comments thrown at me all the time.  I've had Mary Kay consultants tell me that they could help "cover that up"....Others ask me why I don't get the tumors removed.  Some...Just asked questions about what the bumps are...or if I'm contagious.

Nice huh?

I've let what others think of me, affect EVERYTHING I do. I'm getting better about this....But, as those with NF know...My tumors will only get worse.  The stares, questions, "helpful advice"....Will only get worse.

Feeling beautiful, is a tough one for me.

My husband tells me I am beautiful....I usually roll my eyes and shrug it off as being something he HAS to say....Because I SEE the reality when I look in the mirror.

BUT....

Here's what I am learning....(not LEARNED....LEARNING!)

The saying that TRUE BEAUTY comes from the inside.....Guess what?  It's TRUE!

I know a LOT of visually beautiful people.  Their gorgeous - flawless bodies....Who are truly shallow, ignorant and flat out MEAN.  I also know visually beautiful people who are nice, just to be fair.

But, get this....I have been given so much more positive attention, for my attitude, and inspirational stories, than I ever have for my weird bumps, or chubby body.

Those that MATTER...See the beauty that is inside me!  I AM FEELING THAT BEAUTY TOO!

Thank you Kelly Falardeau, for your spirit, your attitude and for showing what TRUE BEAUTY IS!

THRIVE ON!

A Little Bit Crazy

Ok...Now that is has been 24 hours - I think I can safely write about our day....

I was looking forward to this day.  It was one of those BIG days, where 5 out of the 6 kids had a doctor appointment.  More importantly, this was our yearly NF check in/up for the 3 NF kids.  The Multi-Disciplinary Clinic where we get the privilege to meet with several different doctors and spill our guts about anything and everything.

These appointments are different than a regular doctors appointment- where you may get a referral for another doctor--then have to wait several weeks or months to see them.

These doctors were RIGHT HERE!  VERY AWESOME PROGRAM!  

Anyways....Our first appointments were non-NF related Urology visits...That went smoothly enough.

We had an hour and a half before the next set of appointments, so we headed to McDonalds for lunch.  When we got there....We were lucky enough to witness a drug bust and arrest...With not ONE...But TWO police cars!

I just LOVE Aurora.

When we got back to the hospital, Rachel was waving 'HELLO' to a fellow NFer, who just so happens to go to the same school as the younger kids.  

It's always neat to see someone you know, in a place you least expect to see them....And the fact that this little girl has NF just like my clan...Made the meeting, somewhat magical! 

Our appointment started off great, with a meeting with Molly ( I just LOVE her )  And a Neuro Doc, who did VERY thorough exams on all 3 kiddos.  

I felt listened to. Not something I always get, when visiting the DR...

More DRs filtered in and out....and I was beginning to feel very overwhelmed....But at the same time, it was comforting knowing that I was talking with Drs who genuinely cared AND wanted to help. 

We had a few breaks, where I was able to look out the window....The snow had started to fall.

Normally- This wouldn't be a big deal...But we still had a few doctors to see, and it was already 3pm.

The kids were growing increasingly restless....And we were saved a few times by some wonderful folks, who allowed my kids into a room with a computer, and some coloring supplies.

Our last stop was to get a blood draw for Rachel.  The drs were concerned about her complaints of leg pain, along with the fact that Rachel has very low muscle tone and delayed motor development/coordination...The Dr very lightly mentioned that these are symptoms of Cerebral Palsy.

I felt a huge lump in my throat, and the tears began to fall.  

I cried a LOT during this appointment...and THIS was just something so far in left field, that when I heard it, it just about knocked me over.

"We are ruling it OUT, not in...Ok?"  Those words were nice...But NOW I have these thoughts rolling around in my head.

Rachel is scared of needles....But bravely extended her arm to the doctor, as 3 vials of blood were taken.

My mind kept chanting....That everything was going to come back "normal"...And that life will be okay...

As we headed out, I was handed a bunch of papers, that summarized EACH child and the details from the doctors we had seen.  THANK GOD!  My mind was a mess with those details, and I was wondering how on Earth I was going to make sense of it all.

These papers were THE BEST part of my day!  I grabbed them up and THANKED the Drs, for spending so much time with us...And for treating us so well!

The weather had turned from snowy...to REALLY SNOWY, and it was beginning to get dark.  As we got into the car, each of us said a prayer, that we would get home safely.

What normally takes us 30/45 minutes, took us THREE HOURS!  

Snow and slide offs, and general parking lot conditions.....

I white knuckled the entire drive and stopped at McDonalds to get the kids dinner....It was about 8pm when we finally got home, and I was totally spent.

I didn't even know how to begin to download our day to my hubby...But managed to, after a hot bath, and some time to just relax.

If there was a day to THRIVE, this was it.

Frustrated with Your Doctor?

"Why are you here?"  

I went on to explain the list of reasons why we thought we were in the rehab department of the Children's Hospital.  *Pain...Degenerative Disk Disease...Kyphosis...Pain....Spinal Fractures....Rotated Disks....Pain*

This doctor just sat and looked at me....

You know that look.  That...I-don't-really-get-you-so-I'm-just-going-to-stare-at-you-with-my-mouth-dropped-open-so-I-look-like-a complete-idiot look.

His response was that HE didn't see anything wrong with Bailey's scans.

UH-WHAT!?  Did you even REALLY look at her scans!?  

IF you did, you would see that there is PLENTY "WRONG" with Bailey's back.  

She has been referred to as "The 17 yr old, 70 yr old".

"Well -- I guess we can take a look...."  The Dr. swiveled his chair and rolled close to the computer, and booted up Bailey's most recent MRI scans of her spine.

His eyes got real big and he scratched his wrinkly chin....He lets out a heavy sigh and looks over at Bailey...who is sitting on the exam table with that face that tells me she is really REALLY tired of seeing so many doctors.

The doctor wheels closer to me and asks me what kind of plan did I expect him to come up with.....

(Gee...Isn't that why YOU became a doctor?  So YOU could tell ME what kind of plan could make my daughter better!)  

I seriously should know better than to put my hopes in doctors.  But I did.  I always do...And I am always let down.  

For TWO years, we have ridden this roller coaster of placing hope in doctors....In toxic medicine...with the hopes that Bailey will get better.  She's not better.

For now Bailey won't do rehab...She will try stronger pain meds and figure out some school issues and try to live above the pain she is in.

I left the hospital frustrated.  But Bailey....She left asking if we could get an ice cream cone for the drive home.

THRIVE ON!

Bailey Update!

I have the most amazing daughter!  She has gone through...and is currently going through so much...But she has never once complained.  I am so very proud of the young lady she is becoming!

Now - For an update.

I wish that I had better news...Or even just a hint of good.

Yesterday, we met with the Neuro-Oncology team. (Our BIG appnt is next Friday, but we had some medical concerns that needed to be addressed)  

Bailey's symptoms along with the fact that her brain tumors don't seem to be going anywhere, prompted a decision to take Bailey off her chemotherapy.

We had a feeling this was coming.  She has been on 4 different types of chemo, over the last 2 yrs...with no break.

The talk on the way to the hospital was how Bailey felt about this possible decision.  SHE was all for it.  Me on the other hand was scared to death to agree to do this....But would never voice this to my 'little girl'.

I hate the hospital.  I especially hate the 7th floor.  We've made that elevator ride a thousand times and the feeling never gets better.  Sometimes, Bailey and I close our eyes and pretend we are taking a ride on a glass elevator...You know...Like the one on Willy Wonka's Chocolate Factory....  WHERE DO YOU WANT TO GO, BAILEY...?

We checked in and waited for us to be called back to the exam room.  I hate waiting rooms too.  My eyes scan the seats that line the room....And stop at the few kids that seem WAY more sick than Bailey...And I start to feel a little guilty.

We are on the Cancer/Blood Disorders floor and as far as OUR "sickness" goes, we are pretty lucky.  I realize that we aren't dealing with the "C" word...But we belong on this floor just as much as the sweet little kids that are running around sporting bald heads....And this often scares me, more than I can say.

We finally make our way back to our room, after getting the routine weight, height and blood pressure check...And again wait.

Bailey and I laugh when we talk about the memories these exam room hold for us.  The last 2 yrs have been CRAZY.!   We have experienced being...SAD...HAPPY...DISAPPOINTED...ANGRY  --If these walls could talk, I am sure they would have the most amazingly emotional stories.

Our small talk was interrupted when the doctors come in.  We haven't seen them in almost 3 months.  It feels like an eternity has passed.

We weren't due to see these Drs, for another week...but this issue that Bailey has been experiencing needed to be addressed.  We talked about how Bailey has been feeling and what the new symptoms were...And the doctor told us that we needed to stop treatment.

STOP.  My heart sinks.

I knew this was coming...But it was like I wasn't ready to hear it.  It's different when it's ME talking about this possibility...But hearing Bailey's Drs say it, made me feel sick.

The "WHAT IFS" begin rolling around in my head.  "WHAT IF IT GROWS?"  "WHAT IF....."

What if....

I tried to hard to push these thoughts out my my mind....But I can't help it.

I hold Bailey's hand ... And we leap...Together.

"Thriving in Action"....I told Bailey.

Life holds endless "What ifs..."  And there comes a time, when you just have to do it anyway...Because- you never know, if YOUR "what if" will turn out to be something amazing!

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. 

Seriously?!

THRIVING WITH DEGENERATIVE DISK DISEASE

We were asked several times if Bailey had been in some kind of accident....Has she experienced any trauma to her back....If there could be ANY explanation for the condition the imaging showed.  There MUST be SOME explanation....Right?!  One would hope....

The doctor explained to me, that the imaging showed a severe form of 'degenerative disk disease'...and that if he had never met my 16 yr old daughter....He would have thought he was looking at an image of a 70+ yr old woman.  *nice--eh?  I think I've heard this from another Dr-->  Blog about the findings in MY MRI

So what is DDD?

The first thing I read, when I began researching this was that as a person ages, their body obviously begins to break down.   Spinal discs are soft discs that separate the interlocking bones (vertebrae) that make up the spine. The discs act as shock absorbers for the spine, allowing it to flex, bend, and twist. Degenerative disc disease can take place throughout the spine, but it most often occurs in the discs in the lower back (lumbar region) and the neck (cervical region).  Bailey's pain is in her lower back.

Web MD lists the following as to WHY DDD occurs-

Loss of fluid in your discs. This reduces the ability of the discs to act as shock absorbers and makes them less flexible. Loss of fluid also makes the disc thinner and narrows the distance between the vertebrae.

Tiny tears or cracks in the outer layer (annulus or capsule) of the disc. The jellylike material inside the disc (nucleus) may be forced out through the tears or cracks in the capsule, which causes the disc to bulge, break open (rupture), or break into fragments.

OK...REALLY.....I want an ENGLISH reason for WHY my 16 yr old daughter has a "Severe" case of DDD....

As I searched more....

Those with DDD, are typically very active, sport playing individuals who are older and have lived a full life of 'doing stuff'.  This does NOT describe Bailey at all.

This promted Bailey's doctor told us that Bailey's case is very rare.  *wow - if only I had a dollar every time we have heard the word "rare", when telling us about a new diagnosis.*

Sometimes-- there isn't a "WHY".  Sometimes, things just are what they are.

So what do we do?  

We Thrive Anyway.  And continue to spread a message of hope.  We don't let another diagnosis stop us from living.

Purpose to Thrive

Life is full of questions, there's no doubt about that.  Some questions have answers that are simple, sometimes the questions have answers that you must seek out...And then, there are times when your questions have no answer at all.


I am a HUGE believer in PURPOSE.  Living with a purpose, speaking with a purpose, writing with purpose - and believing there is, if not meaning, an opportunity behind the challenges we face. An opportunity for growth, for education, for stronger relationships and faith, an opportunity to come out better on the other side, even if the other side is a place we aren't yet ready to face.

I have learned over the last 4 years, since I began "Thriving with NF", is that if you don't have a purpose, Life can be REALLY hard.  REALLY REALLY hard.

Finding your purpose isn't easy, and it isn't always cut and dry. It took me 34 years to figure out why I was here...for me to accept what NF was doing in my life, and the lives of my kids. Watching doctor after doctor dismiss my concerns and questions pushed me to my purpose, out of desperation, to a degree, and out of anger...out of a mother's love.

My purpose is still evolving, as I find myself drawn to speak to groups beyond Neurofibromatosis - to encourage families facing all sorts of genetic crises to Thrive. To speak to doctors and nurses - both educating and encouraging as they treat NF patients and their families. And still, closer to home, continue to evolve as a mom and a wife as my family matures and faces new challenges each day. Thriving, as a way of live, becomes a bigger, more important, and more rewarding task with each sunrise.

That may sound like a lot of work, a lot of responsibility. It is, but it provides two very important things. Diversion from depression, for one. It's easy to sit and feel sorry for yourself when you lack a purpose. But when you know what you want to be doing, you can be too busy doing it to focus on the negative. Doesn't mean ignoring the bad, just not letting it be the core of your being, the center of each day, each waking thought.

Secondly, it provides a self-perpetuating reward knowing I am, in some small way, helping others with their challenges, whether it's answering questions for a mom who's found out their child has NF, or sending out a batch of books, or just reposting a funny or uplifting quote to my friends on Facebook. 

If you haven't found your purpose yet, if you're hiding from life, hiding from NF, hiding, maybe, even from yourself, you deserve better. The people around you deserve better. There are people you don't even know whose life you can touch who deserve better. It doesn't mean doing what I've chosen to do, but it means doing something. It doesn't even mean doing something related to NF, or the challenges in your life. That is what MY purpose has become - but it doesn't have to be yours.

It doesn't even mean you have to be right the first time around when you choose your purpose (my first purpose was getting married and having kids - I had to do it (marriage) twice and (kids) six times before deciding it was time to change the purpose! I've kept the husband and the kids, though, and changed my focus for my relationships with them and the world as a whole. Try something, and if it doesn't work, try something else!

Your purpose could be working with kids, or getting involved in your community, or even just changing careers to something you actually enjoy. Maybe it's building a house out of recycled aluminum cans. I don't know. I just know your life will be more Thriving WITH one, than without.

What do you think your purpose in life is? What do you want it to be? Let me know below - would love to hear what you'd love to be doing with the rest of your life! :)

Thrive on! 

Third Times a Charm?

The UPS guy came today.  He left a package on our door that had a big RED stamp across it that read URGENT!  I knew what it was...We have been expecting this delivery for over a week.  Generally, I am excited when we get a package from UPS...But THIS was Bailey new chemotherapy.  Excitement, simply wasn't there.

This is our 3rd (and hopefully final) chemo...

The first chemo (Carboplatin) did nothing...Bailey's brain tumor grew through treatment...The second (Vinblastine) has kept the tumor stable...But put Bailey's body through WAY too much...so NOW we are ready for the KNOCK OUT PUNCH!

But I feel different about this chemo....When you are in the hospital--getting blood draws every week....Everything so sterile and precise....It leaves me extremely weary, of having Bailey swallow this pill every night, with no one monitoring anything (except the once a month visits for a CBC)

I can't help but wonder if THIS chemo will be it.  Will my 16 yr old battle this forever? I know Neurofibromatosis is a LIFE LONG battle...But Bailey has been in a fight, that goes beyond what MOST people with NF have to deal with.

At 16 yrs old, she has had more MRI's, needles, surgeries, fevers, hair loss, hearing loss, days lost from school, nausea, dizziness (the list goes on)  than ANY teenager should have to face.  At 16 yrs old, she has had to face the monster of uncertainty....


I should be able to provide a comfort-zone for my child...But it's honestly something I can't offer Bailey...and she knows it.  I can tell her everyday, that "Everything is going to be okay"....(And it very well may be okay in the end)  But I can't promise her...And that hurts me so much.


My job, is to teach Bailey to put all of her fears and uncertainty into God's hands.  Doing this has brought with it, its own comfort.  We know as a family, that we are too small to handle any of this...and ONLY GOD has the control.


A 'THRIVING LIFE' means to let go of all the things we have no control over...and to rein in and focus on the light, that letting go brings in.


I am a work in progress.  I want to "fix" Bailey.  But what I have realized over the past year -- is that sometimes it's the most "broken" people, who are the most positive, God-loving people you will ever meet.


I am broken.  And I am trusting God....and letting go.


Thrive On!

Who Do YOU Affect?

So, I get this call from our case manager.  The woman who is IN CHARGE of all the approvals or denials involved with our family.  I highly doubt this woman has any idea how important she is...In our reality, she plays God.
We are in the middle of a complete case review...This means submitting ALL financial records; bank statements, bills-Anything money related.  Short from my blood type, this woman knows me better than anyone! (On second thought, she probably knows my blood type too)

Anyway...She began asking me questions about out financial "status" and how things are going.  "Your bank records show me that ..."   I cut her off, telling her that our financial life was basically at a stand still...Until we can ensure the life of our daughter.

Silence.

"I don't like what the bank statements say either." I told her.  "It's our reality and somehow, God sees us through!" :)

She knows all about Bailey; the tumor, the crazy steps we took to secure medical insurance, the chemo...The ups and downs of this treatment...

I heard sniffling and when she responded I could tell she was crying...

This woman, who deals with hundreds of cases --if not thousands, began asking questions about Bailey.  She asked about the tumor--where it is, what kind it is, and what was the prognosis.

I told her that we were one of the "lucky ones".....

"How can you possibly say that", she asked me...

" 'Cuz....Bailey is still here...Still smiling...Still relatively healthy...And THAT'S what I choose to focus on."

She says "God Bless You!" and tells me that my case will be done in a few days...Then wishes me luck for all I am dealing with.

THIS...is just one of the MANY reasons, our family CHOOSES to THRIVE.  Because THRIVING doesn't just affect those who choose to do it...It affects EVERYONE you come in contact with!

Who are YOU going to affect today?

THRIVE ON!

Update on Bailey

This is how we do Chemo.  From DAY 1, Bailey has gone into her infusions, with a smile on her face.  I am so proud of her!  Not ONCE did she whine or cry about having to be stuck with needles!

Below, are the many faces of our chemo appointments---Enjoy!

 (Making Prank Calls @ Chemo)

 (Before Infusion Starts)

 (E-E-E-O-O Being Silly @ Chemo!)

In waiting room, giving a "Thumbs Up!" 

  (Tired of Mom ALWAYS having to take chemo pics)

(A "bad" day.  A visit to Urgent Care, for IV fluids and a emergency MRI) 

 (Goof Ball)

(A Happy Camper)

Bailey once said..."I know that God is with me...I know that sometimes you have to go through the dark, to eventually get to the light....and this is just my dark time."

Such an amazing quote, from an even more amazing girl....I sometimes wish I had Bailey's faith and simple out look on life.  To her, chemo isn't the "end of the world"...It's simply one road, that will get her to the next.

Bailey has lost about 15 pounds, lost a few handfuls of hair, feels tired MOST of the time, and has ingested a couple bottles of Zofran (not all at once of course).  But overall, she has felt pretty "normal". 

We have our "bad days", our "scary days", even our "angry days"....But instead of focusing on those days, we appreciate them, because it helps give us a platform to stand on, to reach for those better days.

Bailey has less than 2 months left of her year long chemo treatments left....And while we are ending chemo, with  tumors still inside my child's brain, we are hopeful for a bright future.  We will continue to practice what we preach and take one day at a time.

Chemo Doesn't Get a Snow Day!

The kids are so excited to have a Snow Day today...

But our Snow Day happens to also be a Chemo Day.  I sooo wanted to call in sick today and just stay in bed, but when you havet a kiddo who requires weekly treatments, a sick day isn't possible.

Thanks to our neighbor, who let us borrow her 4x4 truck to make the trek out to Aurora, because over 14 inches of snow fell overnight.  Bailey counted 23 accidents on the way.

NF is a lot like living in a permanent blizzard. It can be a dangerous road. We have to get the right resources to make it through, and make the best of what we have. But one way or another, the snow's gonna fall.

 

This morning, we're plowing through it, later we'll play in it. It's not the snow that's bad, it's what you do with it.

Thrive on!

Neurologist Visit

Round and Round We Go

For almost 3 weeks now I have been experiencing extreme dizziness....Dizziness to the point that I had my mother drive me to today's appointment.  That is saying A LOT!

Dr. Oh did a full Neurological exam and noted that my blood pressure was LOW- 90/56 and my heart rate was HIGH- 110 (which is weird, 'cuz I had been sitting in the waiting room for a 1/2 hour)

I haven't had an MRI in almost a year, so that was the first thing to get ordered...

The Dr. asked a bunch of questions about my dizziness, but there wasn't much to tell.  I have been dizzy 24/7, with periods where the dizziness gets REALLY bad.

Dr. Oh explained that my hydrocephalus wouldn't be getting "worse"...But the dizziness COULD be a symptom of a new tumor growing. *great*  I am familiar with the type of tumor he was talking about, since Bailey has this going on with her.

"COULD BE THIS.....COULD BE THAT"

The answers with Neurofibromatosis are never clear.  Heck, the answers with LIFE are never clear.  But what IS clear, is that I am doing something.  I am not just sitting by, allowing life to continue to swing at me.  Even if nothing can be done....and NF takes my life, I will go knowing I did everything I could and lived a life that I can be proud of. 

THRIVE ON!

Is It Cancer? MPNST and Neurofibromatosis

No one wants to hear the word Cancer directed at them, or anyone for that matter.  But for those of us with risk factors, we must realize the possibility of it happening.


Neurofibromatosis carries with it a number of issues; neurofibromas,  pigment changes in the skin, skeletal anomalies, and learning disabilities.


Although neurofibromas are benign tumors, malignant peripheral nerve sheath tumors (MPNST) sometimes occur. MPNST, in the past also referred to as “malignant schwannoma” or “neurofibromosarcoma,” and can occur in the general population but is one of the hallmark complications of NF1.


MPNST, typically forms from unexpected growth of a preexisting neurofibroma, particularly a plexiform neurofibroma, the first symptom is typically unexplained or sudden pain, in the area in or around existing tumors.


Symptoms may include:

• Swelling in the extremities (arms or legs); the swelling often is painless.
• Difficulty in moving the extremity that has the tumor, including a limp.
• Soreness localized to the area of the tumor or in the extremity.

The thing to remember is that just because you have a higher risk in developing cancer, doesn't mean you will.  Being aware of your body and noting to your doctor any changes you notice is key in staying healthy, and catching things early.  Be aware of your tumors...how they feel and what they look like.

What is MPNST?

MPNST is also referred to as malignant Schwannoma, neurofibrosarcoma, and malignant neurilemmoma. This type of cancer usually develops in young or middle-aged adults, more often in men than in women. The average age of MPNST patients is between 29 and 36 years. About half of all cases of MPNST develop in people who have Neurofibromatosis.
http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor

Treatment?

To treat these tumors, a patient sees an oncologist and a neurosurgeon.  Also, patients can benefit  from being treated by medical teams that specialize in soft-tissue sarcoma tumors. Treatment of MPNST often involves several steps, depending on the location of the tumor, type of sarcoma, other patient circumstances and overall health.

Types

• There are three main types of treatment for MPNST. These treatments are surgery, radiation and chemotherapy. Doctors often use all three types in combination to create specific individual treatment plans for a patient.

*Surgical Removal

• The most common treatment for malignant peripheral nerve sheath tumors is surgical resection. Resection of tumors involves the removal of the tumor and surrounding malignant tissue. The doctors analyze the edges of the area removed, and if cancerous cells remain, they remove a little more surrounding tissue. This continues until the tissues the doctors remove are clear of cancer cells.

Radiation Therapy

• Radiation is the use of specifically directed ionized radiation in a medical setting. Radiation is a common treatment for these tumors, and is often very effective at different stages. Preoperatively, radiation can reduce the size of a MPNST, making surgery easier for the doctor and therefore reducing the time spent under anesthesia. Radiation helps doctors achieve clear borders without having to cut out more tissue, which is very important when the tumor is in a peripheral area such as an arm or leg. Clearing the borders without going deeper often saves the patient from an amputation. Radiation can also destroy cancer cells that surgery couldn't remove.  (Radiation is sometimes used as a "last resort" with people with NF, because it has been studied that Radiation can make the symptoms of Neurofibromatosis worse.  Your doctor will decide what is best for YOU and your situation

Chemotherapy

• While chemotherapy is not particularly effective at treating localized MPNST, doctors often use it to treat cancer that has spread to other areas. Chemotherapy, taken either orally or intravenously, involves taking medication that kills cells.

I didn't want to start the week with a negative post that scares people, but MPNST happens....And the more you know about it, the better chances you will have at catching it sooner.

MPNST is rare...But if you arm yourself with knowledge, IF it does happen to you, your outcome will be much more positive.

Even when it's scary....Even when it's overwhelming...A Positive Attitude is key in fighting ANY battle!  Remember, it's E.A.S.Y. to THRIVE; EDUCATE yourself-Watch your ATTITUDE-SHARE your stories-and YIELD to the possibility that anything is possible!

THRIVE ON!