THRIVE ON!

I met with a good friend recently.  We talked, like we always do.  She is a very spiritual woman, who is strong in her faith...And I always go away from our meetings feeling very uplifted.  She has this way about her...That always seems to encourage me.

And...Although sometimes I don't feel like it...She tells me that I also encourage her.  It's amazing the impact that SOMETHING...or SOMEONE can make...without really intending to.

When I began this blog 7 yrs ago....It's intention was to put myself out there...Tell MY story, so that somewhere...Somebody would feel less alone.  I wanted to Inspire...Uplift...And Encourage those living with Neurofibromatosis...And help them see that a THRIVING LIFE was possible!

A few years ago, I began to end my blog posts with "THRIVE ON!".....Which has been echoed back to me several times, which really makes me feel GREAT!

So GREAT, in fact that it has been the staple of how I live my life!

I want to share with you a way that YOU TOO...can show what a THRIVING LIFE looks like!  A way to LIVE PROUD...And shout to the world that YOU ARE AN OVER-COMER!  A person who doesn't let life's obstacles hold them back!!

Cancer?  Brain Tumors?  Neurofibromatosis?  THRIVE ON means that you go beyond JUST DEALING WITH IT!  You FACE IT!  YOU EMBRACE IT!  And you THRIVE with IT!

Get your T-shirt now by clicking on the shirt of your choice....Join ME as with THRIVE THROUGH LIFE!

THRIVE ON!

Fingers Crossed!

Bailey has gone almost a month without  chemotherapy, and this scares me.  After her port removal last week, we were all set to begin a new course of treatment...But those plans were on hold.

Insurance was denying the new oral chemotherapy and we were left with doing nothing but wait.

It took almost 2 weeks of Bailey's doctors going back and forth, but we finally got her medicine approved!  I never imagined that the I could be so happy about the green light for more chemo.

This past year has flown by...But very little (if any) progress has been made in regards to the tumor that lays deep inside my daughter's brain.  While surgery is NOT an option, chemo has not done what we had hoped either.

The new chemo, will come via UPS on Monday.  Afinitor is a relatively new medication, that comes HIGHLY recommended.  Our Oncologist tells us that kids with Neurofibromatosis tolerate this type of chemo really well, and that they have seem shrinkage, in kids that have the same type of tumor Bailey has.

So we're hopeful!

Surgery Today

Afraid, Apprehensive, Discouraged, Nervous, Disheartened

Is how I am feeling this morning, as I get Bailey ready for the hospital.  We keep getting congratulated for this WONDERFUL surgery that will remove Bailey's port access, which I do agree is a good thing....But, we are not having it removed because chemotherapy was this HUGE success, and we are moving on with life...

We are getting it removed because the port access hardly ever worked...And because, our year 

long treatment plan is over.

The tumor is still there.  The tumor is still bigger than it was, when we began treatment a year ago.

Tomorrow...Bailey will begin a whole new course of treatment.  A fairly new type of oral chemotherapy that is supposed to work well with the type of tumor Bailey has...AND, 'NFers' tolerate it pretty well.

Afraid, Apprehensive, Discouraged, Nervous, Disheartened 

While I continue to feel these feelings today...I also feel HOPEFUL.

It's that HOPE, that keeps the 'Thriving' in me alive.  So even while those scary, negative feelings may try to consume me, (if I focus on them, that is) I can still focus on that hope, that I always carry with me...And as I focus on that hope...I can feel it growing bigger and BIGGER....Then suddenly, all those negative feelings disappear.

THRIVE ON!

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  

Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's

 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)

Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.

  

But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...

She has a tumor that went from "nothing"...to "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.

Merry CHRISTMAS

THRIVE ON!

So...How is Bailey doing?

I know...I know.  I haven't been great at posting updates on how Bailey is doing.  But perhaps that famous saying "No news is good news", rings true.

Bailey has been doing chemotherapy for a tumor on her Corpus Callorum for 8 months now.  I was surprised when I scrolled back on my blog posts and realized..."Wow...there is no way it has been 8 months!"

But it has.  The crushing news that Bailey needed chemotherapy because a sneaky little tumor decided to creep up, while we were monitoring another tumor on Bailey's acoustic nerve, pushed us into the WE NEED TO DO SOMETHING category in late March of this year.

Bailey decided she wanted to do a video blog today, to let everyone know how she is.  I am so proud of her!  Her positive attitude has been something that has gotten her through the rough times, of the last 8 months.

Starlight Foundation!

Last Night, our entire family was invited to our very first 'Great Escapes' event, held by the Starlight Foundation of Colorado.  It was AMAZING!

We were greeted by a wonderful group of volunteers who welcomed us with so much love, and handed us bracelets that got us into ALL the events held at Boondocks Fun Center.  Pizza and drinks were provided as well as a back pack filled with school supplies, for EACH of my kiddos.

We had a blast...An all expense paid "ESCAPE", was just what our family needed...And we soaked up every minute of our night out!

These are the times to hang onto...The times when worry is miles and miles away.  Where chemotherapy treatments, MRI's, blood draw and endless doctor visits are the farthest thing from our minds.

Our family has been blessed by so many wonderful people...who have created AMAZING circumstances.  This is what LIVING and THRIVING is all about!  Giving...Receiving.  And graciously appreciating all that we experience.

Hang on to the good...And give good to the world, you'll be amazed at what it can do!

Thank you StarLight Foundation, for our "Great Escape"...And helping to create memories to hang onto!

<3
The Hopkins/Archer Family!

I'm in Control-Right?

One of the most powerful things most people want in their lives, is control.  When we don't have the control, I know for me, the tension and anxiety that comes from that is extreme. Just ask Rich - I can be a terrible backseat driver :)

Who controls NF? 

The doctors? The Pharmacists? The Insurance Companies? They all have some control in how we deal with it, but in the end, NF controls itself. The real question is, does NF control YOU? 

I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain.  There is nothing more frustrating than the feeling of helplessness.

 

Not being able to control how bad my NF will get is something I think about every single day.  I often wonder if the tumors will get so bad, that my husband will fall out of love with me....Will my looks determine who stays and who goes?


Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.


It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression. 


Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng. 

 

Keep your hands on the wheel. Hold on tight. The road ahead is full of curves, construction, speedbumps, potholes, falling rocks, animal crossings, and traffic cops. Sounds terrifying, but it's better than letting NF drive you - because it will drive you straight off a cliff.  

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....

One Step Forward...Two Steps Back

Disappointment. It happens to everyone. Having Neurofibromatosis, I  have learned to prepare myself for disappointment. It's a horrible way to live, and I do try as much as possible to believe that good things are bound to happen, but the roller coaster life of having this disorder continues to break my heart, over and over.

The last time my daughter received chemotherapy was on July 6th.  Her doctors reduced the dose from 6 ml, to 4 ml and we were sure that Bailey would do well.

She left for camp the next day and things were good.

Until I got the call 2 days later.  Bailey spiraled.  Her blood count was hovering just above 1, and her fever was high....VERY high.

She spent 4 long days in the hospital and her blood count rose, but she has never completely recovered.  I never thought 4 mL of anything could be so damaging.

We were to get back on track last Wednesday....An MRI and this time 2 mL of chemo...But after Bailey's blood draw, everything was cancelled.  One step forward, two steps back, is the dance we are doing when it comes to Bailey.

No answers, just disappointment.

My mind is whirling...Wouldn't the MRI be necessary, EVEN more now, since she has been OFF chemo for a month?  Bailey's doctor assures me, that if SHE felt it was necessary, we would be doing chemo and MRI's.....NECESSARY?   I think a tumor that DOUBLES in size while ON chemo, qualifies as "necessary".

Leaving your child's fate in the hands of someone else is hard.   Trusting that THEY know what is best and going with that is not something I am good at.  

We left the hospital last week feeling uneasy.  Part of me wanted to run back in there and demand an MRI...demand some answers!  The other part of me wanted to leave the hospital and never return., because the pain of doing nothing, felt worse than the pain that therapy brings.

We have to continue to trust.  Trust in the Lord, and trust the hands of the doctors who really are giving Bailey the best.  We have to focus of Thriving....Because that's the only way Bailey is going to come out of this.

Thrive On!

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

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

Just Another Day at Chemo

Today is the 2nd treatment of this new chemotherapy.  So far, I don't like what it does to my daughter.  The side affects with this new stuff are definitely more severe.  Does that mean it's doing its job?

Could  more side affects mean that the Astrocytoma is shrinking?

I worry about Bailey constantly.  Every time she says she has a headache, or skips a meal, or wants to just stay in bed all day.  I worry when she comes to me with another clump of hair, that has fallen out.  My mind is whirling, wondering if I am doing everything I SHOULD be doing.

I can't help feeling incredibly helpless. What more can I do?  I have spent the last few years fighting for MRI's and other treatments....Do I push for something MORE than just chemo?

What if this tumor grows through THIS treatment, like it did the last?

I could spend my whole life worrying and wondering.....OR, I could just focus on today...trusting that we ARE doing everything we need to do.

I'll focus on how Bailey looks forward to our "chemo slushy dates", and how all Bailey really wants to do after chemo, is swim in our pool.

I'll take the smiles as they come, and help her through the times where all she wants to do is lay on the couch.

I will trust that we ARE doing everything we need to be doing....And believe that THIS treatment will work!

THRIVE ON!

New Round of New Chemo

For the last 3 months, Bailey has received chemotherapy for a brain tumor....News that the tumor has grown through the treatment was heartbreaking.  Was the last 3 months all for nothing?  Or....Did the last 3 months of Carbolatin keep this tumor from growing even bigger?

It's hard when things don't go your way.  I sometimes feel like a toddler, who just needs to have a good tantrum, to get out how frustrated I am.  I want to scream and cry, and tell the world that this isn't FAIR!

Tomorrow, Bailey starts a new round of therapy, in hopes that we can stop this tumor from getting any larger.  A biopsy was talked about...then quickly ruled out, for fear that doing one, would cause more harm than good.

Sometimes life is just life....and sometimes the battle of life hurts like hell....But once you get through the battle, to the other end, you look back and see how truly blessed you were, to have made it at all.

Thrive On!

MRI Results

We didn't get the news we wanted to hear.  The entire visit yesterday, was overwhelming...If I could have just hid under my covers and avoided this day, I would have.

In August 2010, the tumor that we have been treating with chemotherapy for the last 3 months, wasn't even there.  In February, it was the size of an M & M, and now yesterday's MRI showed even more growth.

Bailey has been asymptomatic with BOTH of the brain tumors she has, which surprises her doctors.

I kept thinking yesterday, that if I didn't fight so hard for insurance to approve the first MRI, which kept getting denied because insurance and doctors didn't feel a baseline MRI was important enough, we would never have known that these tumors exist.

The treatment that we have been doing will be changed.  The "baby chemo" Bailey has been taking for the last 3 months, will be bumped up to something more aggressive.  A biopsy will be scheduled to see what kind of tumor this is, which will determine the type of chemo they choose.

We will continue to fight our battle.  We will continue to push for the care that we feel we deserve....And most of all, we will continue to THRIVE ON!

A Night to Remember...

Bailey had no idea what to expect. She isn't a "girly girl" and has never really liked her hair and make-up done....but last night was different! It was a night that chemotherapy didn't matter...Thinning hair, didn't matter.

Last night, we were among family.  A family that does not judge, and embraces everything about you.

Last night, was all about Bailey....And the 50+ other young adults who came out to the Prom that was held for current and past patients of the Children's Hospital in Aurora, Colorado.

We took the elevator to the third floor of the Mariot Hotel, and there were men and women, ready and waiting to glam up my daughter.

Bailey didn't know what to do....."Do you want your hair up or down?", "Curled or straightened?"  Bailey just shrugged her shoulders, so the woman started curling. :)

Bailey looked so grown up....So beautiful....So happy.

Thanks so much to all involved with this wonderful night, aside from the parking, it was a night Bailey will never forget! :)

Thrive On

My Magical Summer!

My favorite summer was in 1984.  I was 10 yrs old and didn't have a care in the world.  The day school let out for 2 1/2 months, seemed like the best day of my life!

"No more pencils....No more books...No more teacher's dirty looks!" was sang as I ran off the school grounds, to my house, a few blocks away!

I stripped of my school clothes, and put on my swim suit, that stayed on, the entire summer!

There is definitely something magical about summer!  Until you become an adult...Then it changes into something different.

With 6 kids all home for summer vacation, as well as 2 babysitting kids, summer has become, well....BUSY!

We still have chemotherapy, and countless doctor visits.  We still have days filled with nausea, exhaustion, and  simply not feeling well.  There is no "break" from all the seriousness that Neurofibromatosis has brought to our lives...No breaks from driving back and forth to the hospital....No breaks from blood counts, temperature taking and hair falling out.

What we do have, is today.  We have the chance to make the summer as magical as we want it.  We can live our days in our swimming suit, and watch tv till we fall asleep.  We can laugh at the belly flops in the pool, and run through the sprinklers.

Sometimes, magic has to be found and sometimes, you have to make your own magic.

Thrive On!

Keep on Going!

The last few weeks of Chemotherapy have been rough.  We are almost done with our 8th treatment, and Bailey is having a rough time.  She is tired all the time and is beginning to lose some of her hair.

The reality of all of this is hard on everyone....And I try to make sure Bailey knows, that it is okay to "fall apart"....To have bad days.  She tries so hard to put on a good face...But one can only do that for so long.

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.” -Napoleon Hill (1883-1970)

We have realized, as a family, just how strong we can be.  We have learned to lean on each other and focus our energy on ways to keep our spirits up.

The kids are out for summer and Bailey is really looking forward to going to camp.  It's a time away from Chemo and doctors...A time that she can just be a kid, and enjoy life.

As always, we will continue to THRIVE ON!

The E.A.S.Y. way to THRIVE (part 3)

E.A.S.Y.

(S)

SHARING

Education and Attitude are great...but what are they, unless you share your knowledge and attitude with the world?  At least share with your friends and family!

When faced with ignorance, or judgement, do not turn away.  Share.  Share who you are and what you live with everyday.  Share lovingly, with a child that points in your direction.  Share respectfully with doctors, who need to understand more about you and your life.  Share openly with each other, so we know we are not alone.

We all know 1 in 3000 births are affected by Neurofibromatosis, and yet NF is barely recognized by the general public or the mainstream media. How many of you watched Oprah Winfrey call NF the Elephant Man’s disease? You might not like this - but its not just Oprah’s fault she doesn’t understand NF - its OURS. If we want the world to recognize us, raise money to fund research to help us, to understand and accept us - we have to SHARE ourselves with them.

Once we educate ourselves on NF we can take the Action necessary to educate others. To help our families understand us more. To open the eyes of doctors who don’t specialize in NF to treat our symptoms seriously, and get us the treatment we need - even if they didn’t know treatment existed before we walked into their office. 

How many of you would consider sharing with the media? Writing to your local paper or TV station to offer them information about NF? Not everyone wants to take it that far - but would you be willing to start with your friends, your co-workers? Maybe your church? At the very least, start with each other. 

After all, MY NF is different than YOUR NF. Building a network of NF friends who understand what we are going through can be our most valuable defense against the temptation to isolate ourselves, and the rampant depression seen in the NF community. 

When we open up to sharing ourselves at any level, we gain strength, we spread awareness, and we let the world know we aren’t going to be pushed in the corner any longer....and most of all we THRIVE!

Who are YOU going to share yourself with today?

Thrive On!

Get OUT of the NF Box!

There's no better way to kick off Neurofibromatosis Awareness month than to have a full schedule of MRI's, Chemotherapy, Xrays, blood tests, Neurologists, Ophthalmologists, ENT's and full on stress! :)

'NF' has taught me a lot, most importantly....that you can count on NOTHING! Predictability does not exist, when you are dealing with ANY disorder, not to mention, one whose variability is so extreme, like NF.

I have had many doctors try to tell me what to expect, and how things will turn out, only to have it go entirely a different way. No doctor...I don't care how much schooling or training, should ever label you or throw you into a box.  EACH person should be treated according to THEIR needs, not some needs listed in a text book.

Take for example Bailey....15 yrs old, never had NF complications, except for learning challenges. Drs, had no reason to concern themselves (and I didn't either) that there was a tumor, silently growing on Bailey's auditory nerve.

After a HUGE fight with insurance, Bailey's first MRI, would result in a scurry of doctors trying to figure out what kind of tumor this is...and trying to convince me that it's THIS, when I know for a fact it's THAT! Textbook rules do not work all the time, and I'm tired of doctors doing this to us!


Bailey's 2nd and 3rd MRI would show the growth of another tumor, growing silently...causing no symptoms.  This tumor is growing on the Corpus Collorum , and required immediate action.  Bailey is now undergoing a year of chemotherapy...and Doctors are wondering why these tumors presented, without ANY symptoms.  Without fighting, we still would have no idea there were ANY tumors!

Time to throw that NF Box away!

NF also took a swing at my 13 yr old son.  After a few years of "clear" MRI's, his latest MRI showed a BRAND NEW Optic Gioma, and we also discovered NEW plexi forms growing on his spine and under his arm.  This was after I BEGGED and BEGGED for an MRI, because Doctors didn't feel Braden was showing any symptoms and didn't require one.


Typically, Doctors stop screening for Optic Giomas after the age of 8....AGAIN, without fighting, We would have never known about Braden's new tumors, and would continue to be told, that Braden was exaggerating his pain. 

Neurofibromatosis for me, would leave me undiagnosed until AFTER 5 of my children were born. The massive symptoms I was having, were  "All in my head"....Gosh if those drs would have just listened to me...we would find out, literally....It WAS all in my head! Diagnosed with enlarged ventricles, a brain tumor and hydrocephalus at 34 yrs old!


Other symptoms continue to creep up....and unless I fight for what I need, I will NOT get it.  A recent ultrasound of my leg....After thinking the pain I was having COULD be a blood clot, showed an APPLE SIZED plexiform tumor in my right leg.  


But ALL the information out there, says you are born with plexiforms?  That P;exis are typically diagnosed in childhood...What about ME!?  What about Bailey?  What about Braden?  What about those parents who sit at home, relying totally on their own research?

This is NF Awareness Month. Let's get the word out about this very serious, yet way under talked about disorder!

Neurofibromatosis 1

The most common features of neurofibromatosis are the skin lesions called cafe au lait spots. These are flat, smooth, medium to light brown irregularly shaped spots than can occur anywhere on the skin. Many people have one or two cafe au lait spots, and these are often called birth marks. If a child has six or more cafe au lait spots measuring at least half a centimeter (about a 1/4 of an inch), then he or she should be monitored carefully to see if he or she develops any more signs of neurofibromatosis. A second skin symptom is freckling that appears in places not usually exposed to the sun like the armpit and groin.

After the age of three, many children will develop Lisch nodules in their irises (the colored part of the eye). These can be detected by an ophthalmologist using a special piece of equipment called a slit lamp. These growths do not affect vision.

Another symptom of the disease is the development of neurofibromas, soft fleshy tumors just under the skin. Neurofibromas can also develop deeper in the body. A neurofibroma can be large and have many finger-like projections, called a plexiform neurofibromas.

Most people with neurofibromatosis do not develop neurofibromas until puberty. Because neurofibromas can occur anywhere in the body, there are many possible complications from them. Sometimes these tumors can become malignant (cancerous) or they can affect vital organs. One complication is the development of a tumor, called an optic glioma, along the nerve going to the eye that can lead to blindness, unlike the Lisch nodule. A person can have a neurofibroma without having neurofibromatosis. Many neurofibromas, however, are indicative of neurofibromatosis.

Deformities of the bone are also associated with neurofibromatosis. For example, children can develop curvature of the spine (scoliosis) or an enlargement of a bone in the arms or legs leading to a leg length discrepancy. Other bony defects can be bowed legs and thinning or absence of the bones forming the eye socket. A large head is also sometimes associated with neurofibromatosis.

Approximately half the people with neurofibromatosis have learning disabilities, including attention deficit disorder (ADD), ranging from mild to severe. Learning disabilities are about five times more common in people with neurofibromatosis than in those without the disease.

Neurofibromatosis Type 2

In Neurofibromatosis Type 2, there are not as many physical signs of the disease. People with Neurofibromatosis Type 2 do not have multiple café au lait spots, Lisch nodules, or bony deformities. They may have a few café au lait spots, however. People with Neurofibromatosis Type 2 have a kind of tumor called a neuroma or schwannoma. These tumors affect the nerves that are responsible for hearing and balance. The first sign of the disease is often ringing in the ears (tinnitus), hearing loss, or difficulty with balance when a person is in her teens or twenties. Although only one ear may be affected initally, eventually both ears will be affected in most people. About 90 percent of people with Neurofibromatosis Type 2 will develop these tumors in their lifetimes. These tumors can occur anywhere in the body.

In addition to schwannomas, patients with Neurofibromatosis Type 2 are at risk for other types of tumors, called gliomas and meningiomas, that are found in the brain. These tumors are usually not cancerous in that they are not likely to spread to other parts of the body, but they can cause significant problems depending on where they are located. People with Neurofibromatosis Type 2 are also at risk for a particular kind of cataract that makes vision cloudy or dim.

Please---If YOU or someone you love is affected by Neurofibromatosis, talk about it! The best way you can help, is to spread the word! 

Kristi--Always here, always fighting for treatment/cure!

It's The Little Things That Count

I was sitting by myself, practicing the keynote speech I am going to be giving in Toronto in a little over  a week, when this woman who was seated nearby taps me on my shoulder.

"Did I hear you say Neurofibromatosis?" She asked me.  Lost in thought and trying to focus on my upcoming presentation, I looked up at her.  She must've been in her 70's.

She asked me if I minded reading her the speech and told me that her granddaughter had been diagnosed a few months ago.

I was a little taken back, but I said "sure", and she then slid into the seat across from me.

I figure, the more practice I get, the better, so I began to read....looking up into her eye every chance I got.  She sat intensely focused on my words, which made me a little nervous.

I was thinking to myself  "Who does this?  Who comes up to a total stranger and asks to sit down with them to hear about what they are working on?"

As I got to some really heavy parts of my speech, I couldn't help but cry with this total stranger, who was now using a clothe hankerchief that had initials embroidered on it to wipe her eyes.

I finished up and she grabbed my hand and thanked me for sharing my story.  I gave her my email address and website and watched as she wrote it down....her hand was shaky, but her handwriting was beautiful.

As I watched her walk away, I felt this amazing and overwhelming feeling come over me.  I am doing exactly what God is wanting me to do.  This is an amazing feeling, and one that I hope I can live up to!

THRIVE ON!