Holy Dizziness Batman!

I thought it would pass...But after 2 weeks, I decided it was time to call my Neurologist.

I'm typically the one who toughs it out when it comes to things like this...Heck, when I had mono last year, my hubby practically had to nail the bedroom door shut, to keep me from trying to get up to clean or deal with the family.  

But I have learned this hard lesson...If I don't take care of myself...I could getting sicker...then what?

I made a call to my Neurologist this week, to schedule a check up...which I know will end in being given an MRI to check the status of my hydrocephalus and brain tumor.  I am half nervous and excited...to find out the cause of my daily dizziness.  More just anxious for an answer, I guess.

The hydrocephalus I have in short is-Untreatable.  The tumor is called a lipoma, which hasn't grown in 3 yrs.  So I have no idea why I have been having these dizzy spells.

So...Monday, it's off to the Neuro to hopefully get some answers!

Have a GREAT weekend everyone!

Brain Tumors and Neurofibromatosis

We have two little friends, that came into our lives in 2010.  We never could have imagined how close we would become.  In 2012...We plan on saying goodbye to these friends!

Friends of Jaclyn and the Denver Lacrosse Women's Team!

Today was AWESOME!  Thanks to Friends of Jaclyn (an awesome charity that matches children with pediatric brain tumors with high school or college sport teams) AND the Denver University Women's Lacrosse Team, we had a day that couldn't have been more perfect!

After a LONG drive (thanks to those CRAZY Colorado drivers and an accident on I-25) We finally got to the Denver University campus to meet the team that FOJ matched us up with.  Thank Goodness, a few of the team members were waiting for us, to guide us to where we needed to be!

We headed up to the "tower" where the rest of the team was waiting, as well as a spread of yummy breakfast food!  This is where the girls introduced themselves and got to know Bailey a little.

-Riker and his plate of bacon-

-the girls-

Then the team took us on a tour of the athletics department!  It was so nice!  We got to visit the ice rink, soccer field, pool and gym.  The girls were sooo nice and took a photo with Bailey!  She truly felt like a member of the team!

My kiddos were given Lacrosse gear, and got to play on the field!

We got to "hang out" with the team before the game....We played Wii, and the team gave Bailey a bunch of fun Lacrosse stuff!  It was so much fun hanging with the team...And Bailey said afterwards, how neat it was to be a true part of this team.

They even gave Bailey her very own locker!  

It was lovingly decorated and filled with t-shirts for the entire family!  

Yup...Even my boys had fun!  They met up with the boys Lacrosse team, and were given some "guy stuff"!

Riker says, he is going as a "ZOMBIE Lacrosse Player" for Halloween.

-Playing a little soccer in the locker room-

-Woohoo-

-Go Denver!-

Our family would like to THANK the Denver Women's Lacrosse Team and Friends of Jaclyn for this wonderful opportunity!  We had the best time, and made memories that will last forever!  You made Bailey feel so special and I know that she has made friends for life!

Your kindness was felt throughout my family and we appreciate the time, love and effort you all spent in making today such a special day for Bailey!

We can't wait till the next game!

Blogging Through Chaos

This morning, my oldest daughterstarted High School. I watched as she headed into the GINORMOUSbuilding. She looked so small walking towards the doors. I wantedto get out of the car and run after her. I wanted to bring her backhome, where she would be “safe”.

But I let her go....

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

This day held busy-ness. With summerstill hanging around for 7 kids at home...Chaos loomed, pending myreturn from the bliss, I found in grocery store, being able to shopalone.

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 saysthere were 10 inside...so where did the other 3 go? I guess Rikerand Brooklyn were EXTRA hungry.

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

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

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

Lunch was a mixture of whatever thebabysitting kids brought, mac-n-cheese and otter pops. And oh, Ifound the rest of the pancake sausage on-a-stick things...They wereunder the kitchen table.

Riker decides he wants to catch up onhis summer workbook. “This is This...That is That”...He writeshis “N's” and “D's” backwards....But reads REALLY well! I'mso proud! Brooklyn drips her otter pop across the kitchenfloor...then Carter walks behind her, saying “COOL...bluefootprints!” UGH! CHAOS! :)

I look at the time...I still haven'tput make-up on! Did I go to the school like this? Really? I have togo 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 kidswent Friday and got their pic taken to be a part of the NO CAVITYCLUB! Woo hoo!

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

We show up at the dentist and the ladybehind the desk says our appnt is at 3:00pm, “YOU are REALLYearly!”, 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!

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

This Is Where We Are

One week ago today, my daughter Bailey was laying in a hospital bed, with a 104 degree fever and a ANC count of 1.  A "normal" ANC count is above 1600.  Bailey was SICK.  I was confused and scared and didn't know exactly what all these numbers meant.


The new chemotherapy that Bailey was switched to had severe side affects.  Since Bailey's tumor doubled in size with the previous chemotherapy treatment, her doctor decided to use Vinblastine...a "faster and possibly more effective treatment". 


With her blood counts going down, her risk of infection went up....And that's exactly what happened, while she was at camp.


A doctor explained chemotherapy to me in a really good way.  She said that  chemotherapy was a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets "tumor cells", but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. 


White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor  referred Bailey's low white blood cell count as neutropenia. 

click here for more information 

Neutropenia

Bailey was discharged from the hospital with a blood count of 102, which was a BIG improvement from where she started.  While it is still considered low, a rising count is a GOOD thing.

Now I find myself panicking wondering if her low energy is related to a low count again....Does she have a fever?  How can I let her go to CTF camp and be so far away from me?

I am torn between keeping her close to me and basically putting her in a bubble....Or just trusting that she needs this camp...She needs to be a kid...She needs to experience the world, not hooked up to port IV's.

I am having a tough time explaining to people how serious this really is.  Some people think that because Bailey was discharged, that she is "cured"....That God did a healing and she is fine now...And while I do believe that God definitely worked in this situation, Bailey is far from cured.

Since Bailey is having so many bad side affects from this chemo, the drs decided to hold off on chemo, until Bailey returns from camp....Then, they said, we will go "full force" attacking this brain tumor.

FULL FORCE scares me!  Wasn't that what we were doing, when she got so sick?  Isn't FULL FORCE what brought her to 104 degrees and 4 days in the hospital? 

This is why I have no answers when people ask, "what's next?"  

We live in our "today".  We enjoy the days that Bailey feels well enough to swim.  We THRIVE in our "now"....And pray for our tomorrow.

Thrive On!

Port Surgery and First day of Chemo

Make A Wish--Neurofibromatosis

Our lives have been greatly blessed.  It has also been greatly challenged.  This is why organizations like Make-a-Wish exist.  We appreciate Make-a-Wish so much, for granting our family, not one, but two trips to Disney World.

When we first got in contact with Make-a-wish, it was because I had been interested in volunteering for the company.  One of the ladies who works there, began to follow my blog.  She read about the string of complications that my 7yr old daughter was facing.

I was asked to apply for a wish for Rachel, who was then undergoing treatment for vision loss.  We applied and the whole family was sent off to Give Kids the World in Orlando.  Rachel's wish of meeting the Princesses and seeing the castle came true, and it was absolutely amazing!.

Almost 6 months later, and after our move....I got an email from a woman who worked in the Colorado office of  Make-a-Wish.  She was asking me about volunteer opportunities within the company.  In my e-mail reply to her was a link to my blog, in which she clicked and began reading.

The stories of what my family had been facing, she told me, broke her heart.  "Bailey needs a wish" she said. Hesitantly I agreed to apply .... Knowing that most families are lucky to receive ONE wish, and here we were, about to receive TWO!

Without prompting ....We met with the wish folks and Bailey listed off 4 of her top wishes.
1- To go to Hollywood to see the taping of Sonny with a Chance
2- An I-PAD
3- To be a chef and learn some cooking tips
4- To be able to go back to Disney World

A few days later, I got a call telling me that Make-a-Wish wanted to send the family back to Florida.  I was shocked!  I was sure that Bailey would have gotten one of her less extravagant wishes.

The wish granter gave me dates, that were to be only  a few weeks away.  YIKES!

So, as we prepare for our trip, we keep in mind how truly special this gift is....And want to THANK the organization for blessing our family with this wonderful experience.

With surgery looming for Bailey, we will make sure to take it all in, and make memories that will last forever.

THANK YOU SO MUCH!!!

More on Cushing's Disorder

I've wondered a long time about what was going on with Bailey.... never in a million years did I think to ask about Cushing's Disorder....but after researching extensively....this diagnoses fits.

She's gained a remarkable amount of weight, even though she's active. She has the classic "buffalo hump" (That's a awful way to describe something on a human being), the upper body weight, long/thin legs and arms.

But Cushing's Disorder brings with it far more than physical affects. When we started putting this puzzle together, the pieces fit perfectly.

The exhaustion and the mood swings have been something we just attributed to hormones, or being a "teenager". But now we know that there is something much bigger going on.

Bailey will undergo a very easy test that measures the cortisol levels in her body. When someone has Cushing's, it is typically caused by a tumor or tumors on the pituitary gland or adrenal glands. This tumor causes the body to produce large amounts of ACTH (adrenocorticotropin). This excess ACTH causes the body to produce extra cortisol.

Cortisol performs vital tasks in the body. Cortisol helps:

• Maintain blood pressure and cardiovascular function
• Reduce the immune system's inflammatory response
• Balance the effects of insulin in breaking down sugar for energy
• Regulate the metabolism of proteins, carbohydrates, and fats
• Assist the body as it responds to stress.

When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body's daily needs. However, if something goes wrong with the adrenals (or with their regulating switches in the pituitary gland or the hypothalamus) the level of cortisol produced may be more or less than what the body needs.

When those levels are too high, the symptoms of Cushings begin to present themselves.

Extreme weight gain, especially around the midsection and upper back

Reddish-blue streaks on the skin

Excess hair growth

Growth retardation

Missed periods in teenage girls

High blood pressure

Acne

Tiredness and weakness

Either very early or late puberty.

Since Bailey just had TWO MRI's, that showed no pituitary tumor, the Drs. are thinking that the tumors could be on her adrenal glands. Further testing and possible surgery is in store for Bailey, after our move to Denver.

This move has been particularly stressful for me....there is so much going on medically, with the kids, that I can hardly keep up. (Not to mention my own medical needs)

Packing is the easy part...keeping it packed and organized is a whole different story. The kids miss their "stuff"....the transition is hard for them.

I am ready to be done with this whole moving thing....I want to be in a place of stability. I want to feel secure that the kids will have their needs met...this includes basic things like medical insurance. It blows my mind that medical coverage is either 1) too expensive to have or 2) Not available because you happen to make a few dollars to much.

What kind of country do we live in, when those in prison, receive better health care, than the working American? I am livid, and hurt that the good people of this world, suffer endlessly.

All I can do is continue to fight. Continue to stand up and push back...and most of all, continue to THRIVE!!

Wow..What a Wednesday!

We fought for this MRI, and after weeks of appeals, today Bailey finally got to have it.

We checked in early, in hopes of getting in early (shhyyaaa right!) We ended up getting in as scheduled....and started the sedation soon after.

Three hours later, the MRI was finished and we were able to leave. Bailey was still groggy from the medicine, so we went and got something to eat and raced to the middle school for the awards assembly.

I found out last night, that Bailey was going to be awarded "something". We were worried that we weren't going to make it on time, but managed to catch the last 15 minutes.

When we walked into the front doors of the school, some of the teachers told Bailey how happy they were, that she had made it.

We sat in the bleachers and clapped through the "perfect attendance" and "high achievers"...Then three girls approached the front of the assembly, along with a teacher....Bailey was mentioned -- as was her brain tumor (Neurofibromatosis was also mentioned, but not actually said)

These three girls talked about how special Bailey is to them and how they wanted to do something special for her. They fund raised and collected money to purchase Bailey a yearbook. As Bailey and I approached the front, the entire school cheered and screamed Bailey's name!

They handed Bailey the yearbook and a handmade card.

Hugs all around, while the students continued to cheer.

The girls who presented the yearbook, had the entire 8th grade sign it and put in special messages. As we walked off I grabbed Bailey and hugged her. Flashbacks of my own experience flooded my mind.....MY 8th grade experience was horrible....and I smiled knowing that it was all going to be different for Bailey.

Bailey is and will always be THRIVING with NF, because she has support, that is confidently holding her up, and pushing her forward. I am proud of her, and I know that this heartfelt gift will be something she will always remember!

The Tangled Web of Living with NF

When I finally lay my head down at night, in complete exhaustion from the day, my mind drifts off in many directions. I often worry about tomorrow, and stress about yesterday.

I couldn't care less about the tumors multiplying on my own body, but the ones attacking my oldest child spin me into a web of guilt and sadness.

My children, all six of them bless my life, and I do not regret choosing to be a mother. What I hate is that Neurofibromatosis has its hand in my life at all....in their lives.

The Dr. is calling the tumors Acoustic Neuromas, or Meningiomas--he's not sure which they are. But they are there. Last month we knew about the one, this week, we learn there is another, slowly growing on the left side.

Bi--lateral tumors? With NF1? This web is pulling me in deeper and deeper. It's true that NO ONE can predict how NF will affect their life, and that Bailey will undoubtedly come through this, just as strong, if not stronger than when she went into it, but I'm scared.

It's easy to wear a 'THRIVING' spirit on your sleeve, but when you dig deep inside a person...That's when you truly see what they are made of. Am I strong enough to not only hold Bailey up while she undergoes major brain surgery, but also hold up myself and the other kids?

Am I just a woman who is full of talk, but very weak on the inside? This "test" is bringing me to the point where I am questioning myself...because all I want to do is break down and cry. Cry for my baby who has to deal with scalpels and saws and long recoveries and permanent hearing loss.

Are there worse things? Sure there are. But all I want to do is pull my little girl in and hide her from the cruelty of NF. But then I would be falling into what my mother did with me....Hiding in her own guilt and anger, caused me to hide from my own issues for 33 yrs.

Memories of my childhood, stop me from repeating the cycle, but I definitely understand why my mother would want to hide from NF. But like ALL trouble that you try to avoid, it will always find a way to your doorstep.

Guess it's time I opened the door and face this head on. (pun intended)

MRI for Bailey

Poor girl...today she is scared. Now she knows what to expect during an MRI. She said to me that it wasn't the MRI that scared her, it was everything before and after. How true that is......the anxiety leading up to the exam, then the results that come afterwards.

She is so brave...

Today the MRI will focus in on the brain tumor on Bailey's auditory nerve. The last MRI detected the tumor was 1/2 inch in size ... but now we will learn, if this tumor is wrapped around the hearing nerves. If so, surgery will cause permanent hearing loss on her right side.....but leaving it there, could have far more devastating results.....double edge sword.

Neurofibromatosis has taken us down a road that is scary, yet we know things will be okay. We try not to focus in on all the doctors, MRI's, and the "what could happen".....We live for today, and today we are happy.

May is NF Awareness Month!

There's no better way to kick off Neurofibromatosis Awareness month than to have a full schedule of MRI's, 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....14 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.

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!

Neurofibromatosis for me, would leave me undiagnosed until after 5 of my children were born. The massive symptoms I was having, was "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!

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! Knowledge is power.....

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

What's Up Wednesday?

We were prepared for this doctors visit! We knew what to ask, and how to ask it. We were NOT leaving without knowing exactly where we stood in regards to this darn tumor!

A full hearing test was done, and the results were somewhat confusing. A definite change from last time, but still within "normal".

We talked about the ringing in the ears, change in balance and the headaches that Bailey has been experiencing. Dr. Giddings told us that THESE symptoms could be caused by the tumor, and examined her.

The tube he put in 6 months ago still looked good...and he was very impressed with the hearing test...saying that, with THIS kind of tumor, typically patients have pronounced hearing loss.

He did call the tumor a Meningioma, but said it could also be a Acoustic Neuroma....I wasn't impressed when he was fighting me about Bailey's NF1 diagnoses. He actually said Bailey had NF2, not NF1. I asked him how likely it would be, seeing that I had NF1. He had no answers.

He's a great doctor, and is being very thorough with the care and upcoming surgery plans....It's just this damn NF has to be so complicated, that even the "best" doctors have a hard time keeping up with all of the twists and turns of it.

He did agree that surgical removal was the best and basically ONLY option for Bailey. What complicates matters is this move to Denver. When I told the DR about this...he hesitated making an actual "date" for surgery.

First we need another MRI. This time they will focus on the tumor itself...then they will scan Bailey's spine. The Dr is worried about this tumor because in some cases, it can actually wrap itself around the auditory nerves.....If this is the case, surgery will still happen, except Bailey would possibly come out deaf in her right ear.

So, we will get this scan, and see the Dr back in May. From there we will make a plan. I worry though....Denver surgery would complicate insurance coverage.

One step at a time. Whew!

Tumor Talk

We finally got a call back from Bailey's Neurosurgeon-Dr. Gruber regarding her tumor. The news was NOT what we had hoped for.

The tumor will NOT be treated with lazor, or the new / cool gama knife. Instead, a plan for open surgery is being put into place.

Confident that Bailey would take THIS news, as well as all the other things she has had to deal with, also took a turn for the worse. She broke down and began to cry.....Sometimes THIS is when a person shows just how strong they really are.

Being able to let down and FEEL the emotions of something like this is VERY important! It makes you real...and being "real" helps you grow.

I held her so tightly against me and told her that no matter what the drs decided to do....I will be there. She will not be alone, ever.

She's scared....and rightly so. Anytime one has surgery, it's scary.

So we will meet with another Dr, and the team will start the planning for surgery. Looks like we have a long road ahead of us....Good thing we have God on our side.

True Life MTV, Neurofibromatosis

I have to admit, I was a little worried about how Mtv would portray Neurofibromatosis. Would they make us out to be freaks? Would they give misinformation about the disorder? I have seen some of the shows on Mtv....and was thinking the show could go horribly wrong.

But I was impressed. I watched the show with most of my kids. Rachel was funny. When someone on the show said "I have NF", Rachel said, "Wow...I have that too!" Bailey and Riley were very interested in the show too.

During the commercials, my children asked questions...."Why can't they remove all of the tumors?" "Why will the tumors grow back?" and Bailey says, "This makes me feel sad. But these people are still smiling and still pushing through....So will I!" (Another proud mommy moment)

I enjoyed the bits with the Drs...and how the show portrayed the true emotional pain that NF causes. I was so happy with Bekha and seeing the before and afters of the surgery that removed a tumor from her spine!

All in All I was impressed.....

True Life - MTV Shows

Motivational Monday

As we sat in the waiting room, I thumbed through a magazine, peeking every now and then to my kids who were playing quite nicely, in the nook, across from me.

I was nervous. I'm not usually like this. I closed my eyes and said a silent prayer, that the news we would get today would be good news.

The nurse called Bailey's name and we all headed back into the exam room. Brooklyn and Riker slid their hands along the wall and jumped to avoid the cracks in the floor.

"You okay Mom?" Bailey asks me. "I'm just thinking about you, sweetie." She puts her arm around my shoulders and says, "Well, I hope you're not worried, I mean what's to worry about, Mom?"

Bailey amazes me everyday that I spend with her. She struggles in school, and has very few friends, but always has this way of comforting me...and looking at the bright side of most everything. "I know everything is going to be okay, no matter what!" she continued to reassure me.

Wasn't this MY job? Wasn't I supposed to be comforting her?

She walked boldly and confidently into the room, where she was asked to sit up on the table. Brooklyn and Riker headed for the chairs at the window sill. I stood and answered some questions, to make sure we got a full history in Bailey's chart.

"How was the pregnancy?" "When was Bailey diagnosed with NF?" "What are the symptoms that Bailey is experiencing?" Answering all these questions made me feel uncomfortable, but I knew it was important.

Bailey was diagnosed with NF when she was about 6months old....and we were told to "watch and wait", since there was no cure for this dreadful disorder. For 13 yrs, we had no real issues, and required no special treatment for her NF, except in school.

I watched as the nurse performed a full Neurological exam on Bailey...and she did well. Blood pressure and pulse were taken, as well as a look into her eyes. The nurse noted the exotropia and asked if we knew about it. (We do and are seeing an Ophthalmologist)

The doctor came in and sat down next to me. We talked about the tumor that was found in Bailey's brain, and he assured me that this was a slow growing, BENIGN tumor, but I still began to feel this overwhelming sense of guilt.

Bailey hopped down from the table and slid next to chair next to me. She saw the worry in my eyes, she understood that even though this was a benign tumor, it was still very serious. She held my hand and whispered...."I love you mommy, I'm going to be okay!"

The doctor smiled at this and raised his eyebrows, as if to say, "WOW, I'm impressed!" I smiled too.

The doctor went on to tell us about the placement of the tumor and all the possible effects, that HAVE already occurred and what COULD happen. "Hearing could be impaired and since this tumor is right on a nerve that control facial muscles...her face could become deformed." Bailey squeezed my hand tight.

We talked about possible treatments 1) Watch and Wait 2) Open Surgery to remove the tumor or 3) Lazer treatment

We were not to decide then, and were told that a team of doctors was being assembled and I would be contacted about what THEY felt was the best approach. "I HATE NEUROFIBROMATOSIS!" I thought to myself. I clenched my teeth and fisted my hands.

The doctor looked at me and put his hands on my shoulder...."We have time, this is not imminent." But all I wanted to do, was to do something RIGHT NOW!

We were able to get a copy of Bailey's MRI..which Bailey thought was "Sooo Cool!" She immediately pointed at the tumor and asked, "Is that it?" "Yes" I replied. She stuck her tongue at the photograph and said, "We're gonna get you, sucka!" I just laughed and stuck my tongue out at the tumor too.

As we left the office, Bailey looks over at me and says, "I can't wait to get home and blog about this, because I'm not afraid and I want to let everyone know that I'm not afraid!" I stopped her and hugged her. "You are sooo awesome Bailey.....I love you!"

Over the weekend I saw Bailey looking rather distracted and lost in thought. "What are you thinking about honey?" I asked her. "Oh just about my tumor and the hospital." she replied. I went over to her and sat down next to her....asking her is she had any questions and told her to try not to worry about this. She looks up at me and bluntly says, "I didn't say I was worried...I'm just thinking about it. Will I get to stay in a hospital? Will I get to stay overnight? I'm actually excited to do something about this, what are we waiting for!?"

Yet again, I am blown over by this young lady's outlook on her NF. She really isn't worried or stressed about this and I am so grateful for that. She makes me so proud, and I learn from her positiveness everyday.

I love you Bailey Boo. You are going to inspire a nation! You can follow and check up on Bailey, by following her own blog.

www.achildsviewintonf.blogspot.com/