Thriving with Neurofibromatosis

Care and Compassion

2012-01-30T17:58:00.000-07:00

He wasn't my DR. He wasn't an NF specialist. In fact before I walked into his life, he knew NOTHING about Neurofibromatosis.
But before my appnt, the technician who did my MRI spent his lunch hour, researching a disorder that is as complicated to live with, as it is to understand.

I was impressed with the technicians care and compassion and wished I could have every care provider be like this!
I was talked through the MRI, like I was totally new to the process. Thank You Donald who works at The Medical Center of Aurora...for going above and beyond and showing this gal that there ARE people in this world who will take the extra time to LEARN!

Neurologist Visit

2012-01-23T20:24:00.000-07:00

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!

Holy Dizziness Batman!

2012-01-20T12:54:00.000-07:00

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!

Resolutions for 2012

2012-01-19T09:25:00.000-07:00

Last night at our church Life Group we shared our New Years Resolutions for 2012. I found it interesting that I didn't hear the typical "I want to lose weight"...."I want to make a million dollars"...."I want a bigger house" etc.
What I heard was real people, expressing real desires to be better. Better Christians, more productive people, healthier / happier people.

What I want for 2012 and for the rest of my life

is to remember what's important!

My top 10 "Resolutions"

#1 Make sure Bailey gets everything she needs medically. It's hard for me to get excited about the "No more chemo party" coming up in March. Why? Because Bailey still has a brain tumor that is TWICE the size it was when we began chemo. So, stopping chemo has me feeling extremely stressed.

I want to make sure we take the right steps, in making sure she is around to see 2013!

#2 I did state that I would like to lose weight....But I vow to not focus or get so swept up in this idea, that I let the number on the scale affect my mood. I want to be healthier....And THIS is what I will focus on! This includes Exercise...Even when the tumor in my leg causes pain.

#3 Speaking of the tumor...I NEED to figure out what treatments are available. Surgery? Amputation? Whatever needs to happen...NEEDS to happen in 2012!

#4 Be a more patient person. Anyone who KNOWS me, knows that I have issues with this. This includes friends and family. If something doesn't happen on MY time schedule, I will try to let it go. :)

#5 Invite friends over to our home.... I would LOVE to host Life Group, or just a social gathering. Goal for 2012, is to invite a few families over for dinner/games/movies--whatever. :)

#6 FILL my calendar with speaking events, interviews, or talk shows covering Neurofibromatosis. I already have a few set up for this year, but I want MORE!! Getting myself "out there" as a spokesperson for NF would be a dream come true!

#7 Blog more. I started this blog over 3 yrs ago and it began VERY strong. I'd like to get back to that. This includes Guest Bloggers, Interviews, Personal stories, and general everyday life.

#8 De-Clutter my house! I swear, I am cleaning up the same messes every single day...We have WAYYY too much stuff. Maybe have a Yard Sale!

#9 Support my husband. I do this already, but I could be better. Have faith in him and trust him more...He and I have been through so much in our marriage...And I need to believe that God will see us through. He is my best friend and I need to block out all the negative people who try to convince me that holding onto him isn't what I should be doing.

#10 Last but not least...In 2012, I'd like to get out a second book. I've been thinking a lot about a squeal or just a book about general Thriving. My life isn't all about Neurofibromatosis...It's about Thriving, no matter what I am facing...

I would LOVE to hear some of YOUR "resolutions" or goals for 2012!! Reply here

I Can See Clearly Now...

2012-01-17T14:02:00.003-07:00

I remember it like it was yesterday. I held off telling my parents as long as possible... that I could no longer see the classroom chalk board.

As if 8th grade wasn't hard enough...Now I needed glasses!

I did every possible trick I could to avoid this day; squinting, pulling my eye lids back...But it was unavoidable. I went to the eye doctor and they confirmed that I definitely needed glasses, and were shocked that I had gotten along this well without them.

The moment I put the glasses on, my world changed. Both for the good and the bad. I had the weekend to get used to my "new look" and I was determined to make this be a positive change for me...

That Monday, I lasted 2 hours at school. The glasses that were going to change my life forever, went into my pocket and I left the school in tears.

It wasn't the mean comments, or even the boy who tripped me, making my glasses fly across the cafeteria that made me so mad. It was the fact that no matter what I did, no matter how hard I tried, I was ALWAYS going to be different. I was ALWAYS going to have to deal with people who just couldn't accept me...

The 13 year old me wanted to disappear forever. But I knew I couldn't. The next day at school I was determined to not let the bullies affect me. (as much) :) I proudly put on my glasses and walked to school...I was amazed that I could see all the details of the trees...I could see the faces of the drivers in their cars as they passed me...And I was excited to be able to copy my work of the chalk board in math class.

As hard as it was to accept that I would always be weird, chubby, bumpy and just different I knew it was my reality....I knew (even back then) that my life would be one where I had to fight for my happiness.

We all have bullies in our life. Sometimes they're people. Sometimes they're disorders and diseases that won't go away. Sometimes they're emotions, from anger to fear to embarrassment to depression. The bullies will always be there. The question is, are you willing to stand up and fight? Let your voice be heard? Let those bullies know you aren't going to just run away, or worse, just stand there and take it?

Thrive On!

Tumor Talk

2012-01-10T12:25:00.000-07:00

Tumor patients regain consciousness after surgery

TUOI TRE

A+ A-

Updated : Tue, January 10, 2012,3:07 PM (GMT+0700)

Thach Thi Sa Ly pictured before surgery.

Photo: Tuoitrenews

Two Vietnamese women, who were recently operated on by American surgeon McKay McKinnon to remove their tumors, have regained their consciousness, Dr. Tran Quyet Tien, deputy director of Ho Chi Minh City-based Cho Ray Hospital, announced Monday.

Both patients, who have been diagnosed withneurofibromatosis (human genetic disorder), are now able to open their eyes and move their arms, hands, legs, and other parts of their body, the doctor said.

Kieu Thi My Dung, who carried a 1.5 kg tumor on her face for years, is making a good recovery and can now breathe and drink milk by herself.

After removing Dung’s tumor on January 6, the 20-member surgical team led by Dr. McKinnon then used a part of the patient’s skull bone to recreate her right eye socket which was seriously damaged by the tumor. The team also repositioned her right cheekbone into a more symmetrical position with her left one and recreated the ciliary muscle of her right eye.

Her right ear would be also recreated, the doctor said.

Meanwhile, according to Dr. Le Hanh, head of Cho Ray’s Plastic Surgery Department, 36-year-old Thach Thi Sa Ly, who had plenty of bubble-like lumps covering her body from toe to face, is expected a slow recovery since fluid still leaks from her incisions and could undergo more surgeries to remove the remaining tumors in the future.

Dr. Hanh said Ly’s incisions do not show any symptoms of infection; however, she has to receive milk through a gastric fistula.

Dr. McKinnon, with assistance from a team of doctors and nurses of Cho Ray Hospital, on January 7 removed a total of 10 kilos of lumps mostly from her forehead, chin, hands, buttocks and around her eyes.

Ly’s surgery is the third consecutive operation that Dr. McKinnon performed in Vietnam.

On January 5 at HCMC-based hospital, a 60-member surgical team led by Dr. McKinnon successfully removed 82-kilo tumor on the right leg of 32-year-old Nguyen Duy Hai, who hails from Da Lat central highlands city.

Hai is recovering well and now can eat and breathe by himself.

Dr. McKay McKinnon and his wife left Vietnam for the US on January 8.

Braces!

2012-01-10T10:28:00.000-07:00

With Riley's permission....

She has braces!

It was cute to see how excited she was for the day to come!

We have a LONG way to go...Including oral surgery to remove two impacted adult molars....But she is in good spirits!

"A dream come true", Riley says

She's Hideous!

2012-01-05T14:11:00.000-07:00

As I dropped kids off at school today, I couldn't help but overhear this mother commenting about her daughters birthmark. "It's soo ugly...it's hideous!" the mother said, as she pointed at the quarter-sized brown, slightly raised mark on her little girls cheek. "Just look at it...I'm sooo glad we are getting it removed!"

I just stood there. Biting my lip. Maybe I should have said something. I doubt it would do any good though.

My mind just went to my family and the countless birthmarks we face. The tumors. I have never once considered them "ugly" or "Hideous"...And would NEVER point them out, and shame my child, like this woman did.

To me, despite the tumors, the birthmarks, I am a work of God. I am not a mistake...nor are my children.

I was thinking, as I was listening to this woman go on and on about how her daughter would "Never be taken seriously", with this mark on her face... How she would handle a diagnosis of Neurofibromatosis.

When I came home and told my hubby about this, his reply was awesomely true. "You handle, what you are given". To that mother, her child's birthmark was ugly. (Even though I disagree totally with how she handle it...it was HER truth)

I live in MY truth, that MY children are beautiful. Birth Marks, Tumors, Deafness, Scoliosis...whatever NF brings. My job isn't to change people, and how they look at themselves....My job is to set an example, with MY TRUTH and hope that it helps people use what they already have, to change themselves.

Thrive On!

Brain Tumors and Neurofibromatosis

2012-01-02T11:22:00.001-07:00

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!

ADHD Relief!

2011-12-29T17:03:00.000-07:00

For YEARS, I was that mom who said Iwould never medicate my child, unless it was for something I had nocontrol over medically. I kept repeating my belief to myself overand over...While my daughter's pediatrician listed of possiblemedications to treat her ADHD.

“NO!” I thought...”I'm not goingto do it!”

We have had a lot of experience withADHD medications, but not a lot of luck when dealing with my oldestson...So I was very hesitant to begin the process all over again.

But as I sat in the exam room, with mybouncing-around-the-room 9 year old, watching her hang upside downfrom the swivel chair...I thought, “What the heck?” and decidedto accept the prescription for Ritalin.

Rachel has a lot more going on thanjust ADHD. She also hasNeurofibromatosis and Sensory Integration Disorder. Both of whichare highly complicated and difficult to manage.

Ifilled the new prescription and planned on starting Rachel the nextmorning. She and I talked about how to swallow the small pills andeven practiced with tic tacs....She was just as excited as I was--

Butthat didn't last long-

Atfirst I was thinking it was Rachel's stubbornness not allowing her toswallow the pills...after day 1, 2 and then 3, I realized thatswallowing her pill, was not going to happen.

A callto Rachel's Doctor and a quick change to capsules (so I couldsprinkle the pills into applesauce or pudding) was surely going to bethe answer. But that didn't work either....Rachel Hyper sensitivityto taste and texture had her gagging and throwing up her pills.

Iteven got to the point where Rachel would stop eating her food,because she was afraid I had “hidden” her pill. I was ready togive up...And Rachel was too!

Thenour doctor called with another possible solution. A patch. Worn for8-9 hours a day and removed at night—No pills, No Gagging!

I wasin! Rachel was excited too! I filled the prescription right away,and brought home a box of patches, and showed Rachel where it wouldgo and how it felt.

Wehave been on the patch for a couple weeks now, and while I do notnotice a huge difference, there are minor changes that we see.

Sometimesit takes some “gagging”, to get the right answers, or the rightkind of care. I know for me and my family, we have done A LOT oftrial and error when it comes to our health. We have even “fired”some of the doctors we have gone to, who just don't understand theneeds we have.

Thepoint is...To keep going until you get the answers you arecomfortable with...To be heard, to be understood...And to Never GiveUp!

ThriveOn!

Rachel showing off the patch on her hip :)

Christmas 2011

2011-12-26T11:51:00.002-07:00

Christmas has come and gone. It was such a great Christmas...Even with a few of us down with the stomach flu. :( We had an amazing early Christmas gift, given to us by way of the results from Bailey's MRI.

Dr. Rush passed us in the halls, before our appointment with her...She gave us a quick "thumbs up" and told us that Bailey's MRI looked "good".

Good...Means stable. Which is not just GOOD, it's fantastic!

This was the best Christmas gift I could ask for!

The anticipation for Christmas to come...had my kids so excited...But the stomach flu halted that excitement for a few of us. I was just waiting for it to hit EVERYONE in the family...But thankfully it didn't.

The holiday got off to a GREAT start with Christmas Eve dinner...That was delivered by volunteers from a wonderful organization called 'There with Care'. TURKEY, stuffing, sweet potatos, green bean casserole, pies...the works!

It was enjoyed by the entire family...Including a family member who flew in from California to visit us!

We enjoyed Christmas movies and our traditional read of 'Twas the Night Before Christmas. The kids set out cookies and egg nog for Santa and were asleep by 10pm!

Just before they went to bed, the kids got to open up a gift each...then a family gift.

"POPCORN OIL? Are you Serious MOM?"

Riley being a goof...."OMG, MOMMY, POPCORN...JUST WHAT I ALWAYS WANTED!"

Ohhhh....Now we understand! A Popcorn Popper! AWESOME!!!

Christmas morning--the kids woke up to a living room with 4 new bikes! Braden, Riley, Rachel and Brook all got bikes! Thanks to 'There with Care' for full filling their wish! They were soooo excited and wanted to go right outside to start riding them!

It's Not Cancer, So Why Chemo?

2011-12-19T10:14:00.000-07:00

"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!

Santa Claus!

2011-12-14T18:38:00.000-07:00

We got a surprise in the mail today!

Letters from Santa Clause!

A special delivery from the North Pole!

Santa wrote to Rachel to let her know how proud he is of her, that she has been such a good girl! He wrote about how the Disney Princesses were proud of her too...for trying so hard in school!

Santa wrote to Riker to let him know what a great big brother he has been to Brooklyn! He says to be sure he goes to bed early on Christmas Eve so that he can come down the chimney and leave presents!

Santa told Brooklyn that he has been watching her all year long...And was happy that she has been such a good girl! He told her to tell Riker to get to bed early...and to not peek on the presents!

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The kids were so excited to read their personalized letters!! They couldn't believe that Santa took time out of his busy schedule just to write to them!

Thank You 'There with Care' for making this such a special Christmas!

Reason for the Season?

2011-12-12T15:48:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

Thrive On!

Christmas is Coming!

2011-12-09T09:24:00.001-07:00

This is about the time I start to get really excited for Christmas!

It feels like I started seeing Christmas decorations in the store before Halloween! I mean...I love Christmas...But it seems like it has become quite the holiday hog!

We plan on truly making Christmas be its own holiday....Explaining to our children what Christmas is all about...How how to honor THIS season by itself.

We got some snow...Which of course makes this time of year more "Christmassy"....There is nothing I love more, than watching the snow fall outside...While I am warm and snuggly inside, with a cup of hot cocoa!

YUMMM

If I HAVE to go out in the snow....That's okay too.

The kids love to play in the it...They typically last about 10 minutes... :)

The tree has been up since Thanksgiving...then slowly decorated with ornaments that we have collected over the years....It's so much fun decorating the tree because each of the kids has their own ornaments, each with its own memory.

Our tree leans to one side....Is unevenly decorated...The lights aren't perfect...(Not to mention, I got the tree for FREE)....It's OUR tree....Its filled with memories from MY family...And that's what makes it so special!

I hope for all of you...A very special and Merry Christmas!

Thrive On!

Vitiligo!

2011-12-07T14:46:00.001-07:00

After years of wondering and asking questions about my 4 year olds skin...We were FINALLY referred to a dermatologist! I was worried about these white patches on her skin, but kept being told that they were scar tissue, from a hive outbreak a few years previous.

But they didn't look like scar tissue...Didn't feel like scar tissue.

When the appointment day finally came, I found myself very nervous. From all that I have read about Neurofibromatosis, I shouldn't be worried about these white patches having anything to do with that...And since Brooklyn had been previously cleared of NF, I shouldn't be concerning myself.

But as we were waiting for the doctor to come in and examine my daughter, who was dancing around the room in just underwear, happy as could be....My mind went there.

"What if by SOME chance, this happens to be some hidden symptom of NF?" I couldn't help myself. NF has been such a huge part of my life, that I wouldn't be surprised if this crazy disorder smacked me in the face with a brand new symptom.

When the doctor came in, she asked why I was there, took a family history and asked about any known allergies. We talked about NF and I was so happy that this doctor specializes in NF.

I lifted Brooklyn onto the exam table and showed the Dr. the white patches that had formed around my daughters thighs and legs. The dr. paused and ran her hand along Brooklyn's legs...I asked the dreaded question..."Do you think this could be related to Neurofibromatosis?"

Then braced myself for the answer.

Her response filled me with such relief.

The doctor went on to diagnose Brooklyn with a very long named skin disorder..."Vitiligo" for short. This a condition in which your skin loses melanin, the pigment that determines the color of your skin, hair and eyes. Vitiligo occurs when the cells that produce melanin die or no longer form melanin, causing slowly enlarging white patches of irregular shapes to appear on your skin.

It's not serious...but could spread during her lifetime.

Brooklyn was prescribed a few creams and an allergy medicine to help with her itchiness.

I was relieved and thankful that we got this checked out...The worry about it being 'something else' was driving me crazy. Isn't it crazy how we put ourselves through so much worry? We avoid seeking out answers, because we are afraid of what could be?

The unknown is ALWAYS more scary then what really is. Never postpone going to a doctor if you are concerned about something...The answers you get may not always be good news...But knowing is better than not knowing...And after you know....you can take the steps to get yourself better.

Take control

Thrive On!

Make-A-Wish Christmas Shop!

2011-12-02T20:21:00.001-07:00

Today was awesome! Make-a-wish of Colorado had a wonderful event where all the kids who were granted a wish were invited to the Colorado Children's Hospital to shop for their family members.

It was great seeing all of the smiles, most especially Bailey's! She decorated her bag, then headed for the presents. I waited outside, while she shopped very thoughtfully for everyone in the family.

There is nothing like the smile on a child's face.

Smiles change attitudes and automatically make you feel better.

Happy Birthday Rachel!

2011-11-29T10:50:00.001-07:00

Nine years ago today, I had no idea what I was in for. I was pregnant with my 4th baby, and VERY ready to meet her! My doctors kept refusing to induce..Telling me to let nature take its course.

Two weeks past my due date....Nature was NOT listening!

My next appnt was for the day after Thanksgiving in 2002. I could barely walk. My body was so swollen! I looked like I had just swallowed the entire turkey from the day before.

The drs took one look at me and told me to get to the hospital...I was induced and gave birth that night to a 6 pound 6 ounce baby girl.

When she came out of me...She made no noise. She just laid there, looking back at me as if she was saying..."Why on Earth did you take me out of there?"

From the moment Rachel entered our family, life has been a bit of a roller coaster. She was a fussy baby, who could only be soothed by being held.

Drs told me it was colic, another told me it was my breast milk....It was neither. It was Rachel. A spunky, sensitive, hot tempered little angel. MY Angel.

Years would go by before we would know the full extent of Rachel's issues (Neurofibromatosis, Sensory Integration Disorder, and ADHD) And in spite of all that...she has blessed my life in so many ways, and I am so glad God blessed me with her!

Happy 9th Birthday

Rachel!

Mommy and Daddy love you SOOOOO much!

Is It Cancer? MPNST and Neurofibromatosis

2011-11-28T08:47:00.001-07:00

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.

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.

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 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

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!

Black Friday

2011-11-25T14:45:00.001-07:00

We got up bright and early today...Got in the car and raced to be first in line. Surprisingly...We found a parking spot, nice and close!

As we walked through the doors, we saw the crowds swarming.

No...We weren't at Target, Wal-Mart, Khols, or Sears....Today was "Chemo Day".

We spent our morning on the 7th floor of the Children's Hospital.

Chemo Days are always a mix of emotions. Bailey says these days are her favorite day of the week. I love my days with Bailey too, but tend to hold my joy, until after we hear what her counts are.

Today they were low. Which explains Bailey's symptoms. (Dizziness, blurry vision, headaches, nausea)

Low Counts, doesn't always mean that we skip chemo...It just means we watch for worsening symptoms. It's a numbers game...A frustrating game of "wait and see".

Bailey just goes with the flow...No complaining, no whining. Always smiling...Always positive. She has a true 'thriving' spirit and knows that sometimes, she has to experience a period of pain, to get to where she needs to be.

How are YOU, when things don't go your way? When you experience a fork in the road? Do you whine, complain and let the world know how unhappy you are? Who are you when no one is watching? Who are you when EVERYONE is watching?

I know for me, when I find myself complaining to the world...Everything I do from that point is negative.

Do yourself and everyone around you a favor....And try smiling when you want to cry. Try saying something nice, when somebody says something mean. I know it isn't easy...Just just for one day, live, breathe, and speak a Thriving Attitude...and see what comes from it.

THRIVE ON.

Thankfulness Continues...

2011-11-25T14:27:00.001-07:00

I didn't have fancy plates, cloth napkins, or wine. My turkey wasn't served on a polished silver platter...

We ate our food at a picnic table that is placed in my dining room.

As I looked at my kids (and hubby) slurping their food and wiping their mouths with their sleeves, I couldn't help but feel extremely grateful.

THIS is what I love about my family. We are real. We don't ask for much and we know how to enjoy the simple things.

Who could ask for more?

Thankfulness

2011-11-23T11:59:00.001-07:00

thank-ful-ness Adj: The consciousness of being grateful for what has been received.

My Thankfulness List

*My Family. I put this first, because without my husband and my children, my life would be meaningless-pointless-and empty. The 7 people who live in my house with me have seen me at my worst....And they still love me. They encourage me,e very single day...Even on the days when life just seems overwhelming and un-winnable.
-Specifically, my husband...who for whatever reason, loves me despite all of my "flaws".

*GOD. Normally I would have put Him first...But without my family and the joy they bring to me...I HIGHLY doubt that there would be any sign of God in my life. God has also seen me at my worst. He has seen me doubt Him, question Him, get angry with Him and even at times turn my back on Him...But yet, He is always there, ready for me to come back to Him.

*My Church Family. There are those few that I have connected with on a deeply spiritual level. You know who you are...I appreciate your encouragement more than I could possibly express with words. I LOVE YOU.

*Children's Hospital. We met in July of 2010 and you embraced our family, and ALL of its medical needs without hesitation. Your quick and thorough care of my daughter Bailey has been amazing. You have touched every single member in my family in such a wonderfully positive way.

*Make-a-wish, Starlight Foundation, There with Care, FISH, Once Upon A Child. Your organizations are priceless in the way they have touched my family. You all give in selfless ways and we truly appreciate everything!

*Facebook/Blog. This has been such a wonderful tool, to be able to connect with literally THOUSANDS of families who are dealing with Neurofibromatosis. Three years ago, when I began the whole Thriving thing, I never imagined that it would become what it is today! Thank you all for your wonderful feedback. I hope that I can continue to represent A Thriving Life, and be an example of what it means to Speak and Live a positive attitude.

I wish all of you a wonderful, safe, blessed Thanksgiving.

Thank YOU, for blessing my life with your friendship.

Thrive On!

Sometimes it's About ME!

2011-11-20T20:31:00.001-07:00

Anybody who has a child going through some kind of long term medical treatment knows, that it doesn't just affect the child going to and from the hospital...It Affects the entire family.

While so much attention is focused on the ill child, healthy siblings can be faced with emotional challenges and need some help in navigating the impacts on their sibling as well as the stress placed on parents.

The Children's Hospital-Center for Cancer and Blood Disorders clinic in Aurora Colorado, has an amazing program for siblings of patients going through chemotherapy and has touched our family, in a big way.

A few months ago, Riley got to spend the entire day at the hospital to talk about how SHE is feeling and make friends who just "get it"...She created a wonderful project that was supposed to represent "her"..and how she feels about her life.

A few weeks ago, Riley attended the "Color Me Mine" event.

Not every hospital has this program, but if you have a child undergoing chemotherapy, it is definitely something you should ask about.

So...How is Bailey doing?

2011-11-17T14:09:00.001-07:00

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.

Thriving with NF is Changing...Forever!

2011-11-16T17:35:00.001-07:00

Yes. It's true.

I'll still talk about NF, don't worry. I'll still share updates on my family. I'll still rant.

But to truly Thrive with NF, life must be about MORE than NF! It's been too easy for me to keep a very narrow focus these last few years. There's so much to talk about in the world of Neurofibromatosis. But there's also the rest of life.

My daughter playing the violin. How to handle the madness of the holidays. That story of me throwing myself down the stairs I keep meaning to write.

I'll be honest though. I've been a bit fearful. Afraid that you won't really care about my life outside NF. Ridiculous, right?

On my website, there's a video where I and my family repeat the mantra "I have NF, but NF doesn't have me!"

Starting tomorrow, when I might finally write that stairs story (or not), "This blog has NF, but NF doesn't have this blog!" Because my life, and your life, is so much bigger, so much better, than our diagnosis.

Thrive on!

To Sedate or Not to Sedate-MRI Talk

2011-11-10T08:44:00.001-07:00

It's tough to decide on whether or not to sedate your child during their MRI--Some children do just fine laying still for the procedure, while others may require medication to help them relax (or sleep). So how do you know?

Will my child need to be sedated?

Rachel is 8 and has NF1 and sensory integration disorder, so we thought there would be NO WAY for her to do an un-sedated MRI, but as of this year, (with LOTS of practice and praising) she no longer uses sedation, to get through the 45 minute scan.

Several factors are considered when determining if a child will need sedation, including:

•    The age and developmental level of child (You know your child best!)
•    The length of time it takes to do the procedure (a typical scan runs from 45 minutes to an hour...COULD take longer)
•    The amount of discomfort expected during the procedure (Injections of contrast may have to be given during the scan)

We tried an un-sedated MRI for our now 14 yr old NF1 son. Braden has ADD, and a pretty significant developmental delay. The Drs. ordered a spinal and brain MRI, in the SAME appointment...BIG MISTAKE.

If you know the scan will be of different body parts, and you are going for un-sedated...Please take my word on this, and schedule the scans on different days! Our poor son was laying in the MRI tube, for almost 4 hours! (this was because Braden became very wiggly and uncomfortable--even with his favorite movie playing inside the tube..and the tech had to repeat many of the scans)

The scheduler will work with you to schedule the scans on different days, and even though doing it this way is very time consuming--trust me, you will be glad you took that extra time!

If you are a first timer...The following are some pros and cons, when it comes to sedation and MRI's.

**Side Note: If you choose sedation and your child has a tendency to wet the bed...It MAY be a good idea, to bring a pull-up, or change of clothes. We learned this the hard way!

PROS for Sedation

*The child will be asleep and positioned by the MRI techs AFTER they are asleep

*The child will not remember the MRI experience or hear the noise

*No need to repeat scans, unless the tech feels something needs to be looked at more closely

*Less traumatizing

CONS for Sedation

*Typically, you cannot be in the same room with your child if they are sedated...Sometimes ONE parent is allowed in the MRI room.

*Longer recovery time...It can take several hours, for the sedation to wear off...My kiddos took the entire day to recover as they were VERY sleepy and groggy afterwards.

*Cost. Depending on insurance

------------------------------------------------------------------

PROS for NON-Sedation

*Depending on location and availability--Your child can watch their favorite movie during the scan

*FAST recovery--Just scan and go!

*Since MRI's are a part of life for a person who has NF--the earlier you get them used to it..the better

*You can be in the room -- to comfort your child if needed

CONS for NON-Sedation

*The child could become afraid of the noise or uncomfortable in the closed in space

*Repeat scans are common, due to wiggling

*Longer Scan times

Basically, it's up to you...and how you think your child will handle the procedure...Some kids are just better, if you sedate them...Others, do really well without sedation.

At our home, we make a BIG DEAL out of MRI day. The night before, we practice laying very still for 3 minutes at a time...If you wiggle, you have to start over. If you make it the whole 3 minutes without a wiggle, you get a treat. (M&M, or other small piece of "treat")

We talk about how important it is to stay very still, so the doctors can see their body nice and clear!

I have even taken pictures with my camera....and wiggled it on purpose...to show my kids what it looks like to get a blurry picture. We talk about how the doctors use these pictures to see if everything inside the body is okay...And if it isn't, the doctor will find ways to fix it.

MRI day is also special because the kids know that after they do an awesome job for the MRI tech...They will get some special treat for the ride home....(Yes, I bribe my children. I do what works, and it even sometimes works on my husband!)

The following is some GREAT info, that I found around the web!

How will my child be sedated?

In the majority of cases sedation is administered via an intravenous (IV) tube. Some infants — those under 2 years of age — occasionally can be sedated with oral medications. The sedation physicians will determine the way the child will be sedated on the day of the MRI.

During the MRI

While the child is sedated and the MRI is taking place, he or she will be monitored constantly. Breathing, heart rate, blood-oxygen level and blood pressure will be tracked. In addition, the child will be watched on a camera in the MRI scanner. The nursing staff will report any movement to the doctor, in which case additional sedation may be needed.

The MRI usually lasts 30 to 60 minutes.

-----------------------------------------------------------------------------------

What Is An MRI Like?

An MRI is LOUD! Your child will wear ear plugs and special head phones to protect their hearing. Even with those--the noise isn't pleasant. If the child is watching a movie, the sound will go through the headphones.

The MRI physician and staff will be outside the room behind a large window where the equipment controls are located. They will be able to see the child through the window and a camera, and will constantly monitor the child during the procedure. If the child is not sedated, he or she will be given a device that can be used to let the staff know if he or she needs anything during the procedure.

After the procedure

Once the procedure is finished, the table will slide out of the scanner. If the child did not receive sedation medication, he or she can go home immediately. However, if the child was sedated, he or she will be monitored in the recovery area until the medication wears off and he or she is awake. Parents can remain with the child in the recovery area. If an IV was inserted, it will be taken out after the procedure and when the child is awake.

*Sedation or not...It's always best to talk to your child and prepare them for the experience.

Insurance and Neurofibromatosis

2011-11-03T08:56:00.001-06:00

A few weeks ago, when I went to my mail box...I got a surprise letter, that stated that my daughter Bailey, was no longer eligible for medical coverage.

The letter stated that as of March of last year, my daughter did not qualify for coverage...My mind immediately goes to the date we discovered that Bailey had another brain tumor...A tumor that required immediate surgery and chemotherapy.

According to the letter...NONE of Bailey's MRI's, Surgeries, chemotherapy treatments, hospital stays--NOTHING, was covered by her insurance. (Nice of them to let us know, a year after the fact-eh?)

As you might imagine, I kinda freaked out. THIS was the whole reason I applied and was approved for disability for Bailey....To AVOID insurance issues like this one!

I immediately called the phone number on the letter, and left a message.

A day later, I get a call back from the Social Security - Medicaid office...This woman had investigated our case and informed me that a state-wide "glitch" had occurred and thousands had received a similar letter.

The woman on the other end of the phone had no idea of how much stress this had caused me. My mind tried to add up an estimated cost of the 10+ MRI's, Chemo treatments, surgery and hospital stays...When I got to over a MILLION dollars, I stopped trying to add.

I hung up the phone and breathed a sigh of relief. But....What if I hadn't called? Would the issue had just worked itself out? Could I have saved myself the stress and worry, and just ignored the letter?

Yeah...I could have. But "ignoring" has been what I had been doing, for most of my life. Ignoring everything about Neurofibromatosis; it's symptoms, warning signs and most importantly, I ignored a world that needed to open its eyes and be educated about this complicated condition.

Taking ACTION, is part of the E.A.S.Y. way to THRIVE! Explained in my book 'Thriving with Neurofibromatosis'....You cannot THRIVE, without ACTION! When you live A Thriving Life...it means your attitude and actions radiate in everything you do.

Don't Ignore...Take Action
THRIVE ON!

http://www.thrivingwithnf.com/thrivingwithNFbook.htm

Porter Colley-Neurofibromatosis

2011-10-27T10:09:00.003-06:00

I love it, when I find people THRIVING! Porter's attitude is beautiful!

Porter Colley ~ Ripley's Believe It or Not! by THEKNOTTYMAN

Contentment

2011-10-24T11:41:00.000-06:00

"I have learned to be content

in whatever circumstances I am." Philippians 4:11

(Paul wrote this from a prison cell!)

For me, contentment means a feeling of peace and comfort. How on Earth would it be possible for one to feel contentment in a prison cell? How could someone feel peace and joy, in a seemingly hopeless situation?

I personally struggle with the feeling of contentment. I doubt is because of the lack of faith or trust...but it's definitely because of the lack of something.

The craziness of raising a large family, can make it hard to find to find contentment, but it CAN be done. I have seen it...felt it...I just need to figure out how to access it more often.

The one thing I have found, is that the busier I am...the more content I feel. It's those moments of quiet alone time, that seem to trigger frustration and depression. If I keep myself busy...Even if it's with hospitals, volunteer time, yard work, or computer stuff, I find myself less likely to fall into the trap of discontentment.

The bills, chemo treatments, car repairs, lack of money etc...Are all real issues, that can't be ignored, but they are also things that I really have little or no control over. What I do have control over, is how much I let the outside "stuff" get to me.

My faith in the Lord is strong. Stronger than it has ever been....and it is THIS, that I need to focus on....and it is THIS, that will bring contentment.

Pregnancy and Neurofibromatosis

2011-10-17T17:12:00.000-06:00

*If there is a history of a genetic disorder in you or your extended family, it's best to ask for genetic counselling before becoming pregnant. The number of tests available for genetic disorders is increasing every year, although they don't tell the potential severity of the condition.

I was 7 years old when I KNEW I wanted to become a mother. Carol Brady was my idol, and I wanted to be just like her.

Neurofibromatosis never entered my mind, when it came to wanting children. In fact, as far as I knew, I had nothing to worry about with regards to NF. I was examined as a child, after my older brother Mike was diagnosed with NF, and my parents were told I didn't have it...so why would I worry?

I was confused when I began to have some NF symptoms, but was continually dismissed by doctors, whenever I would bring them up. I was simply "birthmarky and freckly", and didn't need to worry.

My first baby was born in 1996 and I couldn't have been more happy. The few "bumps" I had seemed to grow a little ... and a few more seemed to pop up. But they didn't hurt or cause me any issues, so I didn't worry...And when my 2nd child was born in 1997, I knew that being a mother was exactly what I was meant to be.

None of my obstetricians mentioned the bumps (that were very obvious)....Until my 6th pregnancy.

As I wrote in my book, Thriving with Neurofibromatosis , this was my wake up call...when I finally "got NF"...The moment I realized I had been overlooked and seemingly ignored by the medical community, and personally ashamed and hiding in fear from my own concerns and doubts for FAR too long.

That 6th pregnancy - when an obstetrician indirectly, but effectively, shamed me for bringing children into the world. I knew then and there I had a battle on my hands. I knew that I would have some explaining to do, to those in my life, around my life, and even to myself to a degree, to create an understanding as to why on earth I would risk damning my children with such a dreaded "disease".

It wasn't long after Brooklyn's birth that I began to understand and accept ALL that Neurofibromatosis meant for me, and for my family (which was A LOT). My own NF symptoms had gotten worse, and I was scurrying around Eastern Washington, trying to find a doctor who had actually even heard of this disorder.

3 of my 6 children would also get the NF diagnosis...And with that brought tremendous guilt. And this guilt was almost paralyzing...Almost.

I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor--(which, from what the drs told me, have been there my entire life) while at the same time, vision issues and tumors began appearing in my children. It was all consuming, and could have easily overwhelmed me. But my choice to have children brought with it the responsibility to accept these outcomes.

This blog, was born 3 yrs ago...After my decision to be proud of the choices I had made. Everything you do in life is a choice...and you can also choose to be proud (or not) of those choices.

NF could have happened to any of my children, even if I didn't have it. Or Downs Syndrome, or Muscular Dystrophy or a hundred other disorders lurking within the genetic code of the human race.

As each of my children have grown, I have also grown. I am confident that my choice to have children was the right one. I would not wish Neurofibromatosis on anyone...But my children have given so much good to this world, and I can't imagine my life without them.

This isn't a post trying to justify my decision to have children, it's simply my story about my choice to do so. I respect those who choose not to have children. If I had known more when I was 19, maybe I would have made different choices. Maybe there is a reason I didn't know more, and maybe those reasons are named Bailey, Braden, Riley, Rachel, Riker, and Brooklyn.

Life in itself is a risk. My job now, is to provide MY children something I didn't have; A full understanding of what NF means for them....and what it COULD mean for them, if they go on to choose to have a family. Education - the E in "The E.A.S.Y. Way to Thrive" is my goal for my children, for myself, and for the world. Not so we can always make the 'right' choice, but so we can make the 'right choice for us'.

Thrive on!

The Flu Shot....Not For Me!

2011-10-12T09:04:00.000-06:00

So Friday, while Bailey was at chemo....I was asked if I had gotten Bailey her flu shot. I saw her flinch at merely the topic of more needles. (poor girl)

We were told how important the flu shot was, to protect Bailey. "Her immune system is not like everyone else's....and it's vital everyone get one." the nurses in the room told us.

So...I agreed. Both Bailey and I rolled up our sleeves and got the injection. I'm not a wimp with needles, but dang it....This one hurt!

I felt fine the rest of the day....but on Saturday.....AND every single day since...I have been sick! Body aches, head aches, tummy aches...

I get NO sympathy from my hubby, who says..."I told ya so..." But he has taken up the slack for me, and I appreciate that! (XOX Honey)

I vow, to never get the flu shot again. I vow to not let doctors talk me into something, that I am not comfortable doing.

Bailey has been fine, after the shot...I'm so happy about that! But as for me....I will NEVER get the shot again!

Pictures of Neurofibromatosis

2011-10-07T09:25:00.000-06:00

I wanted to thank all my wonderful NF friends for contributing pictures to this slide show. I hope this brings awareness to a condition that is WAY under talked about!

To parents of newly diagnosed children, the pictures in this video show people mildly affected (which is typical) and people with more severe issues. No one can predict how severe or mild your case will be. The best treatment for Neurofibromatosis is to find good doctors, who understand Neurofibromatosis and who also listen to your concerns.

Surround yourself with people who will support and accept you...

And NEVER let Neurofibromatosis be something that defines you.

Oprah and Neurofibromatosis

2011-10-04T14:51:00.000-06:00

It's been a LONG time coming, but I wanted to go ahead and address the whole Oprah uproar that was caused by Oprah referring to Neurofibromatosis as the Elephant Man Disease. Let me emphasize REFERRED TO NF as the Elephant Man Disease.

Last year, when I wrote about the misinformation and lack of complete information regarding Neurofibromatosis on the Oprah Show, I... like a lot of you was upset that FINALLY NF was being featured on a top rated talk show and it failed miserable to get the job done in a way that educated and informed. Read blog post here

It was a "freak show". I am in no way calling Ana Rodarte a freak...the opposite in fact. Ana bravely went on the Oprah show to help spread awareness about her disorder. She showed the world that she was not afraid of the snickers and stares...This woman is Thriving with Neurofibromatosis!

Oprah does A LOT of good...Don't get me wrong. But, she had the opportunity to not just talk about Ana's disfigurement....(because as we all know, NF affects everyone differently and Ana's case is actually a rare.) Oprah had a HUGE chance to accurately and respectively educate the world about a disorder (not an illness or disease) The entire segment took less time, than it does for me to take a shower. (a quick shower)

The reason I am bringing up Oprah again is because she starts her new show on OWN this week, and I wanted to put myself out there, to maybe catch her attention. I signed up for her "Life Class", in hopes of adopting some her her life lessons.

When I watch Oprah, I am in Awe. Your ideal "rags-to-riches" fairy tale. She just amazes me with how she overcame a very abusive past, and went on to be one of the most talked about people in the world.

"Doing the best at this moment puts you in the best place for the next moment."-Oprah

She has so much good to say, and when she says it, it's in such a way, that inspires so many people. She could do Neurofibromatosis so much good, if she was willing to devote an entire show to disorders that need to be talked about. There are MANY disorders out there, not just NF that are serious and potentially deadly, but don't get the airtime, like breast cancer, muscular dystrophy, diabetes etc.

I can't even type in Neurofibromatosis in my blog without the spell checker highlighting it for possible misspelling. NF needs to be talked about. Not in a way that "shows off" our tumors, or disfigurements...But in a way that informs and helps people to understand the disorder.

I have e-mailed countless TV shows, Talk Shows, Radio Programs, and have yet to find anyone interested enough. (besides a few small town productions)

Dear Oprah,

I am excited to be a part of your new journey, and the Life Class program! I am a woman, living (and thriving) with a condition called Neurofibromatosis. It's the same condition that Ana Rodarte has, the young woman, that you featured on your show back in 2010.

While I was excited and happy that FINALLY, NF was going to be featured on your show, I was also let down, by the lack of information included in your NF segment.

I know shows have to be cut and edited, but this was a serious misrepresentation about the disorder that affects more than 1 in every 2500 births each year.

You talk so much about living your best life. Fulfilling your potential and dreaming your dreams. Oprah...MY dream is to accurately, respectfully and completely, represent my family and friends, who suffer with this debilitating disorder.

Your new show is the perfect platform to do so.

"Do the one thing you think you cannot do. Fail at it. Try again. Do better the second time. The only people who never tumble are those who never mount the high wire. This is your moment. Own it. "
Oprah Winfrey

This is one of my favorite quotes from you. I am mounting my wires high, and expecting to succeed! I OWN every moment I live....and I am ready to talk about NF, anytime you are.

Kristi

Boob Awareness and Neurofibromatosis

2011-10-03T13:01:00.000-06:00

"Save the Tata's", "I *heart* boobies", "Think Pink", "Put the squeeze on Breast Cancer"

It's hard to miss. Pink is EVERYWHERE! Even the Diet Pepsi can I am drinking from right now is pink. But if you haven't heard, October is breast cancer awareness month and it's in FULL swing!

Celebrating 25 years, The National Breast Cancer Awareness Association has been promoting awareness to help women all over the world to become experts with their own bodies. The Awareness doesn't just stop there, however...It involves everyone around the woman as well.

But what if you have a condition like Neurofibromatosis; a genetic condition that causes benign tumors or neurofibromas to grow along nerves in the body or on or under the skin?

I have Neurofibromatosis. I also have many tumors that are scattered all over my body...Including my breasts. The topic of breast cancer scares me, since people with 'NF' are more prone to various types of cancer.

When doing a self breast exam, it's hard for me to distinguish if what I am feeling is "normal"....Because normal for a woman with Neurofibromatosis, means something completely different for a woman without NF.

The first step in doing an exam is to get to know your boobs. Seriously. Touch em, squeeze em, tug on em....Trust me, they won't fall off!

Normal boobs are lumpy, so get to know your "lumps".

Test 1

Using a mirror, inspect your boobs with your arms at your sides, with your hands on your hips, and with your arms raised while flexing your chest muscles. Men do this too, and sure it may look or seem silly, but it can save your life, so do it!

Test 2

Look for any changes in contour, swelling, dimpling of skin, or appearance of the nipple. It is normal if your right and left breasts do not match. I have names for my boobs, but that's another blog post entirely.

Test 3

Using the pads of your fingers, press firmly on your boob, checking the entire boob and armpit area. Move around your boob in a circular pattern. Remember to use the same method every month. Check both boobs. If you have any growths or painful lumps, make an appnt with your Dr. ASAP!

Test 4

Gently squeeze the nipple of each boob and report any discharge to your doctor immediately. Ladies, if you are breastfeeding, this of course does not apply to you.

Test 5

Examine both breasts lying down.

(I have to do this with the doors locked, cuz some people in my house may take this as an open invitation)

Women with Neurofibromatosis have a harder time with breast exams, because new neurofibromas are constantly appearing, but if you get comfy with touching your boobs, and being aware of any sudden or painful changes, you can have a successful breast exam too.

Is It Breast Cancer? Warning Signs You Shouldn't Ignore

Breast cancer has some obvious and not-so-obvious symptoms that you shouldn't ignore. Pay attention to your breast health so that you can identify changes early on. Schedule an appointment with your doctor right away if you experience any of the following symptoms in one or both breasts:

A new firm lump or mass in your breast
Your nipple suddenly becomes inverted (goes in) or dimpled
Discharge from your breast other than milk that comes out on its own
You're being treated for an infection of the breast and it doesn't get any better or any worse after a week or two

I have wanted to talk about this topic for a LONG time, but wasn't sure how to approach it. And all joking aside, it is estimated that approximately 40,000 women (just in the USA) will die from breast cancer! So while you may think it's silly or uncomfortable to touch yourself, it could very likely save your life!

Being comfortable with my own body, is VITAL, if I am to THRIVE. Thriving doesn't just stop at Neurofibromatosis....I plan to THRIVE in every single area of my life!

If you haven't touched your boobs this month....do it RIGHT NOW!

Thrive On!

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

2011-10-01T21:43:00.000-06:00

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!

Assert Yourself!

2011-09-26T14:49:00.000-06:00

I don't consider myself a very assertive person. For most of my life, I have let people walk all over me. Family members, friends, co-workers, doctors... heck, even my husband.

It's HARD to stand up for yourself....Especially when you aren't confident with what you have to say.

I remember one doctor visit a few years ago, when I was talking about my hydrocephalus and possible shunt surgery. I'll put it bluntly...The Dr. was a jerk. She had wall around her a mile high and didn't seem to care one bit about my pain and suffering.

I was dismissed without any answers. No solutions for my headaches, and surgery was simply "Too risky and not an option." A quick "See you in a year"....and I walked out feeling WORSE than when I walked in.

So how do you get doctors to listen...REALLY listen to you? Yes... there are rules to this, and if you follow them, I promise, you will have a great doctors visit!

First....Be specific. Instead of just complaining about your pain, describe it! "The pain in my fingertips has been going on since 2009, and it REALLY hurts when...." or "My headaches have been worse since 2008, and no over the counter medications seem to help." The MORE specific you are, the better the outcome will be.

Doctors have a specific time allotted for each patient scheduled...But that does NOT mean that your time has to be cut short.

Do NOT accept ..."See ya in a year." answers.

Next...Keep it short. Bringing in 10 pages of your medical records is not helpful. No doctor can’t get through that in 10 minutes. Going to the doctor, with a list of symptoms would be like taking a child to a candy store and telling them to pick their favorite candy, in 3 seconds....IMPOSSIBLE!

Try scheduling a few appointments, to talk about specific issues. For example; I scheduled 3 appointments for myself in one month, with the same doctor. 1-to talk about tumor-related leg pain, 2- to go over the results from my thyroid ultrasound and 3- to refill important medication, and talk about side affects.

It can be overwhelming to have that many doctor visits, but trust me, you'll get a more positive and thorough result!

Know your family history, especially when it comes to genetic disorders. Most doctors want to know if what you are experiencing, can be tracked back to another family member. A simple "family tree" of health related issues, can be a HUGE time saver, and I suggest you map one out, BEFORE your appointment.

Ask for what you want. “If you’re assertive and say, ‘I want to be checked for this, this, and this,’ without sounding too hypochondria-ish, doctors have an obligation to do so. I went into the doctors stating the fact that my headaches aren't cured by simply Tylenol. I asked for specific medication that was recommended by another doctor, and I got a prescription for it. Know yourself...Know your needs...and present those needs confidently! Which brings me to.....

Don’t apologize. Think of your appointment as a business transaction! I'm serious. Doctors are paid to listen to everything you say. None of this..."I'm sorry to bother you doctor" or "Do you think I should...." That kind of talk will get you nowhere!

Understand what comes next. Ask four questions after every appointment: What do you think of my symptoms? Are you ordering any lab tests? Why? And when should I expect to hear from you about the results? Ask for any referrals or any other important information that you will need.

And last but not least...

Switch doctors (if you must). Don’t wait. Get someone new who really hears you. It took me 33 yrs before a doctor recognized my Neurofibromatosis. That's FAR FAR too long! If your needs are not being met, find a doctor that will take the time to get to know you.

I know for some, this isn't an easy process....But nothing worth having is ever "easy". YOU are in charge of you...and no one will do it for you....

Present your new THRIVING attitude to the world, and you'll be amazed at what you get back!

Thrive On

There With Care!

2011-09-22T13:19:00.001-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thrive On!

Starlight Foundation!

2011-09-21T09:36:00.000-06:00

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!

MRI News

2011-09-17T11:49:00.003-06:00

Braden has Neurofibromatosis type 1. His first MRI scan was in 2009 and the findings of that, were very typical of someone with NF: bright spots (UBO's), abnormal ventricles and "areas to watch")

We really didn't concern ourselves too much and did as we were told..."Watch and Wait and scan in a year."

So in December 2010, we went in for our "yearly MRI" and when the phone rang, before we even got home from the MRI, I knew something was wrong.

The MRI tech was confused when he compared the last scan to the one just taken...and asked me to come back in to re-scan him.

We had JUST gotten home, from a LONG....Sedated MRI, I was not about to turn around and bring my son in, to be re-sedated, and re-scanned.

Turned out, that Braden had a brand new Optic Glioma, on his left optic nerve, and several pelixform neurofibromas growing throughout his spinal cord.

It is VERY unusual for someone with Neurofibromatosis, to have new findings of an Optic Nerve Tumor, after they turn 8 years old....In fact, MOST doctors won't even scan an NF1 child, if they have had a previous "normal" scan, and have no obvious signs of issues.

But there it was.

A race to the Neuro-Ophthalmologist, for a complete vision screening was scheduled, as well as a meeting with the NeuroOncology team at the Children's Hospital.

After the vision screening came out "normal"...The meeting with the doctors, went as I expected..."Let's keep an eye on things...and scan Braden in 6 months."

So, we did as we were told...And Tuesday Braden had his 6 month follow-up MRI

Braden spent 3 1/2 hours in the tube as his brain and spinal cord were scanned. The results showed growth of both the Optic Glioma and plexiforms...But as most of you with Neurofibromatosis knows....This does not necessarily mean anything.

As the doctors examined Braden and xrays were taken, it was also noted that Braden's scoliosis has gotten worse.

Physical therapy will be started in October, to help with strength and flexibly.

It's easy to become overwhelmed with all that is happening with our family, and this is why I stay very 'in the moment'. I enjoy the small things in life, and try (sometimes fail) at letting go of the things that the things I cannot control.

Say What!?

2011-09-15T10:42:00.000-06:00

Have you ever said something, that you wish you could take back? Put words out there that were insensitive, or just downright mean?

I have this neighbor, who approaches me, every few months, to try to sell me on her "special oils", that she tells me have cured, even the most aggressive of cancers. "If you would just buy a few of my oils, I know your daughter's brain tumor would go away." she tells me.

Really? Gee...If your oils cured cancer, then why the heck aren't you a bazillionaire, living in some mansion? If your oils cured cancer...why isn't there a line around the block, ready to purchase your product?

The thing that people don't realize, is that Bailey doesn't have cancer. She has a brain tumor, caused by Neurofibromatosis. No oils, or special food, is going to take it away. The only way to "cure" Bailey's NF, would be to have caught it before it reached her chromosomes....meaning, at conception.

But in saying that, it doesn't take away the fact that Bailey's brain tumor is very serious. It's in a spot, where even taking a biopsy is considered too risky. A spot that if it grows much more it could have a significant affect on her cognitive skills and personality.

My neighbor told me a few weeks ago, that I must not truly want Bailey "cured", because I have chosen to not purchase her oils. *Hold me back* I couldn't believe it! I tried to explain to this woman, that her oils could not cure Neurofibromatosis...and she kept insisting they would.

I asked her, if she had any oils to cure down syndrome....or muscular dystrophy. Her answer..."No, of course not." She seems to think that NF is some kind of infection, and all I need to do, is rub some cream or oils on my skin and I will be "fixed"...Then maybe, just maybe, I'll live up to her idea of perfection.

I know that most people just want to help...They want to provide some "fix" for Neurofibromatosis....But what I would love, would be for people to stop trying to fix us. We aren't broken...We aren't diseased ridden...We are wonderfully made, in the eyes of God.

Neuropsych Testing and Neurofibromatosis

2011-09-13T10:39:00.000-06:00

Neuropsychological testing is an evaluation of a child's mood, behavior, personality, cognitive ability and over-all IQ. The testing takes 6-8 hours and is performed by a licensed clinical Neuropsychotherapist. Lucky for us, our doctor also specializes in children with Neurofibromatosis.

The testing includes various aspects of attention, memory, speed of information processing, language, visuospatial ability, sensory processing, motor ability, higher-order executive functioning, and intelligence.

Anyone with a Neurological disorder, or any type of brain injury should have this kind of testing done, not only to provide vital information to care givers and teachers, but also to provide parents with an understanding about how their child learns, so that they can find proper resources, as the child grows.

Common Questions

*Why should my child have a Neuropsych test done?

An accurate, scientifically based evaluation leads to personalized and more effective treatment, rehabilitation and life adjustments. The test provides vital information about how your child learns...This information can be passed on to educators, who then can make school, a much more positive experience.

*Does Insurance cover this type of testing?

Typically yes. Depending on your coverage and plan.

*How do I get the results of this test?

A few days after the test is performed, you will meet with the doctor, who will go over the test. Your child, typically does not need to attend this meeting. Any questions you have about the test, or specific questions about your child will be answered at this time. Further testing, and/or treatments may be recommended. You will also receive a printed version of the test, in the mail about a week after your meeting. Keep this in a safe place and make copies for your child's school. You can request an IEP meeting, to go over the test with your child's teachers.

The results of this test can be quite overwhelming...So be sure to ask the doctor any questions you may have. It may also be a good idea to prepare questions ahead of time, and bring a notebook, to jot down the answers to those questions.

Based on the results of our child's testing, here are some of the questions we had, for our doctor:

*What does the "overall IQ score" mean?

*What kind of future can we expect?

*Based on these results, what kind of job skills or training will be needed?

*How can we get the school, to help with the specific way our child learns?

*What types of rehab/therapy are available?

No matter what the results say, remember that, every single child is unique and special. The results only define the way your child learns and how they process information. Low IQ scores, does not mean your child is "stupid"...It just means your child learns, in a very specific way and the test results will help guide your child to the right kind of therapies and treatment...and is an essential part in finding ways to personalize their education.

If you have any specific questions, please feel free to contact me, or just comment below.

3rd Annual CTF Neurofibromatosis Awareness Walk!

2011-09-12T09:49:00.001-06:00

The weather was perfect and the kids were all dressed in their walking gear as we headed to Littleton, Colorado for the 3rd Annual CTF NF Awareness Walk. The walk took place at Clement Park and had a turn out of over 200 people! Friends and and family members dealing with the diagnosis of Neurofibromatosis came out to show their support by taking part in the walk and also providing much needed donations, to help fund research.

"Team Thrive" had their NF green shirts on and sported trendy blue/green hair! Five of the Nine people in TEAM THRIVE are affected by Neurofibromatosis, including my 15 year old daughter, who is currently undergoing chemotherapy treatment for a brain tumor, caused by NF.

One of Bailey's doctors as well as Adam Foote from the Colorado Avalanche came to show their desire to learn more about Neurofibromatosis, the tumor based disorder that affects more than 3,000 births, each year.

After the walk, which was about a mile, family and friends shared a BBQ lunch and took park in the great items in the silent auction. The total amount raised was over $20,000!

I'm in Control-Right?

2011-08-30T10:23:00.000-06:00

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.

Why Neurofibromatosis?

2011-08-29T12:14:00.000-06:00

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

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

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

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

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

Ice Break Speech- Neurofibromatosis!

2011-08-27T16:24:00.001-06:00

Glomus Tumors! Ouch!

2011-08-26T11:37:00.000-06:00

The pain is unmistakable! People who suffer with Neurofibromatosis, who also complain of pain in their fingertips, seek answers to questions that often go ignored. "Why am I having this pain?" "Why does it hurt so much?"

The first doctor to recognize the pain that I could only explain as "nails through my fingers", was Dr. Stewart at the National Institutes of Health in Maryland.

During my trip to NIH 2 years ago, while participating in a study for Neurofibromatosis, a simple question, would change my life forever. "Do you happen to have pain in your fingers or toes?"

A light went on that day.....

First, what the heck are Glomus Tumors?

Common with Neurofibromatosis, Glomus Tumors are benign, slow growing tumors, that often grown in the fingers and toes, although they can grow anywhere in the body. These tumors cause significant pain and are classified into 3 groups: solitary lesions, multiple painful lesions, and multiple painless lesions.

Treatment of glomus tumors is surgery. The surgery involves medication to numb the hand, and removal of the nail, to expose the nail bed. Full removal can be difficult and recurrence rates reportedly are as high as 20%!

The pain from the surgery, was pretty bad....and recovery took a long time, but the outcome was worth it. A total of 5 tumors were removed from one hand, with more on the other hand, to be explored at a later date.

When I see the hundreds of stories, from people who have Neurofibromatosis and finger pain, I can relate to the pain and frustration they feel. I had gone into many doctors complaining of my pain, only to have no answers...no hope of ever getting better.

But there IS hope. If you are having trouble getting your doctors to understand your pain, the first step is to go into the doctors office, armed with accurate information.

Some doctors, in my experience, have barely heard of Neurofibromatosis, let alone glomus tumors and there is nothing wrong with helping to educate the doctors you see.

EDUCATION/ATTITUDE/SHARE/YIELD

Thriving with NF is "EASY", when you go after the care you deserve,

while respectfully educating those who take care of you.

Blogging Through Chaos

2011-08-22T21:32:00.002-06:00

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

2011-08-15T11:15:00.000-06:00

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?

One Step Forward...Two Steps Back

2011-08-08T08:57:00.001-06:00

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!

Here We Go Again!

2011-08-02T13:28:00.000-06:00

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!

Who is Listening?

2011-07-26T09:13:00.000-06:00

Communication is the key to better understanding, right? I am typically clear with how I try to get people to understand what it is I am saying. But there are some, who just choose to not even try to understand.

I was referred to an Endocrinologist to further investigate the NF tumors scattered all over my thyroid gland. These tumors cause no pain, or obvious symptoms, but they are there.

I met with a doctor who is in his 70's. I could tell right away this man was going to be the type I would have to stand my ground with. The first words out of his mouth was something about fibromyalgia...."No, not fibromyalgia...."Neuro-fibroma-ma-tosis", I said nice and clear.

He looked very confused. "You know there's no cure for that? What exactly were you looking for me to do?"....Uh...gee Doc...Your job, maybe?

I know there is no cure for Neurofibromatosis. But there is nothing I hate more, than being dismissed, like I am some leper, who just needs to go back home to hide.

Being robbed of hope, from someone who has known me for 2 minutes? Not gonna happen!

First of all, if you have read any of my previous posts, you know that this kind of attitude from a doctor, doesn't fly with me.

After the doctor said that he couldn't help me....I got up and walked out the door. He didn't examine me, didn't take any kind of history, or look at any of the MRI, Ultrasound notes....Just simply put no effort in trying to understand me at all.

Sometimes, it takes standing up, and walking away....to get you on the right path. The path to 'Thriving', takes effort...And I know I am worth the journey. It's time to clear the path of its road blocks, and press on!

As Always--Thrive On!

Facing Mountains

2011-07-25T11:01:00.000-06:00

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

2011-07-18T10:19:00.004-06:00

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!

More Low Blood Counts

2011-07-13T08:58:00.001-06:00

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

Prayers for Bailey

2011-07-11T16:15:00.002-06:00

Bailey continues to run a fever...and counts continue to be low. Bailey is at the Children's Hospital being monitored and given antibiotics.

Thank You for all of the prayers and thoughts!

We are blessed to have so many wonderful friends!

Roundup River Ranch Camp!

2011-07-08T12:01:00.001-06:00

Bailey left for camp this week. A wonderful camp that is specially designed for kids undergoing chemotherapy or other treatment for life-threatening illnesses.

I was sooo happy to hear that Bailey could go. She has been going through so much these past few months and this was a nice way to say 'goodbye' to chemo for an entire week!

I miss Bailey. I wonder is she is feeling good enough to be having fun. This new chemotherapy seems to be having more severe side affects and all I can hope, is that the distraction of camp is helping her keep her mind off of feeling lousy.

While we were waiting for the buses to arrive, Bailey met up with Phillip who was just finishing up his appointment at the hospital. Bailey met Phillip at camp last year and they have become really good friends. He took her under his wing, and showed her around camp.

Phillip was the boy who was featured in the Mtv show 'True Life' in 2010. His story broke my heart, and I felt an immediate connection with him and the struggles he faces. Meeting him in person was wonderful. He is a sweet and funny boy, who doesn't seem to mind when people recognize him as the "NF Guy from Mtv".

When Bailey comes back from camp, it's back on the chemotherapy. I love that she gets a break, and hate that she has to go through this, but I also believe that in every bad situation, carries with it, a seed of good.

We may hate chemotherapy, the side affects, and everything else that Neurofibromatosis carries with it, but if we stop searching for the good seeds....If we focus on all the bad that life is doing to us....Those good seeds, will never have the chance to be planted.

Thrive On!

Just Another Day at Chemo

2011-07-05T10:40:00.000-06:00

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

2011-06-28T16:16:00.000-06:00

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!

Negative People!

2011-06-24T16:59:00.002-06:00

Negative people are like human black holes. They sometimes come out of nowhere, then suck the life from everything around them.

They think, "If you are happy and positive, then you must be crazy...or better yet, you're lying."

Living with Neurofibromatosis isn't easy. I can be the first to tell you that I have often thought that the battle wasn't worth the effort to continue to fight.

I have been criticized and made fun, my entire life, for the choices I have made....How I look, what I wear, how I talk...And now that I am adult, people criticize my choice to have children.

To those people, who continue to spread their own unhappiness with life to people around them...How dare you! Never once have I judged couples who have a genetic "abnormality" for choosing to start a family. Never once would I allow MY own disdain for life to affect someone I barely know...or heck, even those that are closest to me.

Keep your negativity to yourself....I'm too busy to hear how YOU disapprove of MY choices, that have NOTHING to do with you. I am too busy living my life, raising my sweet babies, giving them the best life I can.

I honestly don't need to hear that you feel I should have sterilized myself, as to not keep the dreaded "NF Disease" from continuing on.

I get it....I know sometimes life sucks.....Sometimes things happen to people that completely destroys their faith....But THAT'S YOU, that's YOUR life....Don't try to destroy MY faith, just because you are so unhappy with yours.

MRI Results

2011-06-23T10:36:00.001-06:00

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!

Have Faith.

2011-06-22T07:25:00.002-06:00

In the game of life...the odds are often stacked against us. Pressure. Fear. Anxiety, are knocking at your door. You have a choice to make. You can chose to doubt yourself and gripped by fear...or choose to believe you have what it takes to overcome it.

Today TWO of my children will be at the Children's Hospital in Aurora Colorado. I am finding myself fearful of this visit. My mind fluttering with "what ifs".

It's normal to fear...to dread the results of an upcoming medical tests...But what good does dreading it do?

I come from a LONG line of worriers, so it's only natural that I follow suit, right? Nope! I'm all about breaking the cycles I grew up with.

While I do still worry and dread....I don't make my life all about that. It takes work to refocus your mind and to expect the best out of a seemingly hopeless situation....and without trying it, you may never know the true grace that can be brought to you by God.

Letting Go.

It's a tough thing to do. I always seem to find myself in this tug-of-war with God. I'll give Him my fear, anxiety and worries....but pull them back, thinking I can handle the stuff on my own. Ya... a Tug-of-war with the most powerful being in the universe. Crazy!

So today....while I do worry and fear the results from the MRI my daughter is going through....I will release it and give it all to God. Only HE knows the results, and only HE can give me the ability to handle, whatever the results may be.

Today, my choice is to NOT be gripped by my fear. Today, with God's help, I believe that fear has no power over me, or my children. Today....I expect a miracle!

THRIVE ON!

Ruffling Feathers

2011-06-20T16:40:00.001-06:00

Ruffling Feathers

I have always cared about what people thought about about me. So much so, that I have actually changed the course of my life, several times. Unbelievable? Yeah. I was so afraid to offend, so afraid to hurt feelings that I would never speak my mind about anything I believed in.

I used to fear conflict and criticism so much, that I would run the other direction, when confronted with a choice. I don't love conflict now, but somehow since my new found 'Thriving with Neurofibromatosis', I am less afraid of it. I have found a new sense of bravery, that makes less afraid to ruffle some feathers.

Unpopular choices sometimes have to be made. Whether they hurt feelings or not. I worry less now about being judged for them. It's much easier when you have something to believe in, especially when you are fighting for your life, or your children's lives.

In order for me to do right by my family, flying under the radar wasn't going to happen anymore. I had done that my entire life and it had gotten me no where. Criticism is a part of life, and me being out here on the internet "THRIVING", I risk criticism of others, and actually that would be true if I was on-line or not.

What do you believe in? Are you letting what others think of you control the way you live your life? It has taken me a long time to find my voice, but as I found it...I became a stronger advocate for my kids and a more compassionate person, who is accepting of others and the choices THEY make.

Neurofibromatosis, has made me stronger, not weaker. It has firmed up my back bone so much so, that it will never- ever be walked on again! With each passing month I grow stronger, and less afraid of the ruffled feathers.

Thrive On!

To MY Daddy!

2011-06-19T06:39:00.002-06:00

I just wanted to take the time to thank all the father's out there, but wanted to pay a special tribute to my own daddy...and let him know how much I love and appreciate him.

I know we didn't always see eye to eye on stuff...But your strength and guidance has helped me so much...Especially while facing the hurdles in my life.

You didn't always like my choices...But you loved me anyways.

You seemed to always take time...when I really needed you....Especially when my car would have issues!

You see past my flaws and always believed in me.

My favorite memories of you...is when you would spend "hours" curling my hair!

("A couple's two, right daddy?")

Thank you, Dad...For always being there!

I wish I could spend this Father's Day with you...

Not so 'THRIVING' today

2011-06-18T11:55:00.001-06:00

Today, I don't feel like 'Thriving'. Today, the world seems to have a plot against me. It's times like this, that I have to be extra aware of how far I let myself go down.

I woke up with a headache. Not your 'everyday' take-a-tylenol, type of headache...but a REALLY bad one. The kind of headache that only finds relief when I take (2) 500mg hydrocodones.

When I wake up like this, it's hard for me to THRIVE. I don't feel good, and the last thing I want to do, is to try to make others feel good.

Why can't the doctors fix me? How can I possibly live a full life, while in so much pain? Who in their right mind, wants to live life, popping pain pills, just to have a few moments pain free?

I've said it over and over in this blog AND when I speak, that it's okay to have a bad day....a bad week....even a bad month. It's okay to not THRIVE all the time....But what IS important, is that you don't let yourself get so angry, and so depressed, that it keeps you from bouncing back.

I may not feel good today....But I have the hopes that tomorrow will be one of my good days. I have the "Thriving Bar", that is always going to be their...waiting for me to grab onto it.

Thrive On (even when you don't feel like it)

A Night to Remember...

2011-06-15T14:21:00.000-06:00

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

You're a FAKE!

2011-06-13T11:10:00.000-06:00

I just got an e-mail from someone telling me that they thought I was a fake. That my whole "Thriving Thing" was for attention and money.

I've gotten a few e-mails like this, in the the past, but never chose to address them. Rich tells me I should take the high road, and consider the fact that I may have some 'haters' as a sign that I'm actually making a difference.

One thing this person said is true. I am online and sharing my stories for attention - that is, ATTENTION for NF. Our disorder is one of the least recognized, least understood on the planet, and it deserves attention. I want others to hear what I have to say, and hear what YOU have to say, to allow it to impact their lives so THEY believe that they can also continue to learn more about NF, and aspire to themselves THRIVE with Neurofibromatosis

Anyone who truly knows me, knows that my only intention of being so "out there" with my Thriving attitude is simply to show others that they have the control to change their attitude....That having NF, or any other challenge, doesn't have to smash your dreams.

As far as becoming rich from Thriving with Neurofibromatosis....my husband and kids are still waiting for the Brinks truck to show up. Everything I make from Thriving gets put back into creating more product, bringing more awareness, or, as need be, making sure my lights don't get shut off.

The "profit" I see from what I do, is that of seeing others change their attitudes....And I guess THAT does make me rich.

Thrive ON!

CTF Colorado Chapter Annual Picnic

2011-06-11T20:15:00.000-06:00

I LOVE connecting with other families who are dealing with Neurofibromatosis. The connection these activities provide, is a vital part in how we cope with this disorder.

Today was the CTF Annual Picnic in Colorado and my family (all 8 of us) piled into the van, excited to meet some new friends.

Mr. Fun the clown/magician showed up and made all the kiddos laugh, with his jokes and great tricks!

Rachel was picked to show off some of Mr. Fun's silly tricks!

Thank you CTF, for another GREAT activity!

Thriving with Neurofibromatosis

Care and Compassion

Neurologist Visit

Holy Dizziness Batman!

Resolutions for 2012

I Can See Clearly Now...

Tumor Talk

Tumor patients regain consciousness after surgery

Thach Thi Sa Ly pictured before surgery.

Photo: Tuoitrenews

Braces!

She's Hideous!

Brain Tumors and Neurofibromatosis

ADHD Relief!

Christmas 2011

It's Not Cancer, So Why Chemo?

Santa Claus!

Reason for the Season?

Christmas is Coming!

Vitiligo!

Make-A-Wish Christmas Shop!

Happy Birthday Rachel!

Is It Cancer? MPNST and Neurofibromatosis

Types

*Surgical Removal

Radiation Therapy

Chemotherapy

Black Friday

Thankfulness Continues...

Thankfulness

Sometimes it's About ME!

So...How is Bailey doing?

Thriving with NF is Changing...Forever!

To Sedate or Not to Sedate-MRI Talk

Insurance and Neurofibromatosis

Porter Colley-Neurofibromatosis

Contentment

Pregnancy and Neurofibromatosis

The Flu Shot....Not For Me!

Pictures of Neurofibromatosis

Oprah and Neurofibromatosis

Boob Awareness and Neurofibromatosis

Test 1

Test 2

Test 3

Test 4

Test 5

Is It Breast Cancer? Warning Signs You Shouldn't Ignore

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

Assert Yourself!

There With Care!

Starlight Foundation!

MRI News

Say What!?

Neuropsych Testing and Neurofibromatosis

3rd Annual CTF Neurofibromatosis Awareness Walk!

I'm in Control-Right?

Why Neurofibromatosis?

Ice Break Speech- Neurofibromatosis!

Glomus Tumors! Ouch!

Blogging Through Chaos

Update on Chemotherapy

One Step Forward...Two Steps Back

Here We Go Again!

Who is Listening?

Facing Mountains

This Is Where We Are

More Low Blood Counts

Prayers for Bailey

Roundup River Ranch Camp!

Just Another Day at Chemo

New Round of New Chemo

Negative People!

MRI Results

Have Faith.

Ruffling Feathers

To MY Daddy!

Not so 'THRIVING' today

A Night to Remember...

You're a FAKE!