Tumor Talk

Tumor patients regain consciousness after surgery

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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.

Blogging Through Chaos

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

But I let her go....

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

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

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

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

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

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

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

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

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

I look at the time...I still haven'tput make-up on! Did I go to the school like this? Really? I have togo pick Bailey up, and get to the dentist, with Braden and Riley. Thank GOD, this dentist sees our kids 3 at a time! The younger kidswent Friday and got their pic taken to be a part of the NO CAVITYCLUB! Woo hoo!

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

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

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

Here We Go Again!

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

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

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

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

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

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

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

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

Facing Mountains

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

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

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

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

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

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

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

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

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

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

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

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

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

Thrive On

Just Another Day at Chemo

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

Could  more side affects mean that the Astrocytoma is shrinking?

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

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

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

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

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

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

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

THRIVE ON!

MRI Results

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

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

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

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

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

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

Chemo Port Surgery

Bailey's port surgery is over, and we are ready to begin the 52 week journey of chemotherapy.

The waiting before the surgery was the worst part...but the surgery itself took just under an hour.

Bailey chose strawberry scented anesthesia to go to sleep with, but woke up feeling nauseous and had a headache.

She is such a strong girl and I couldn't be more proud of her!  She even let me take pictures and video of today...to post  so that other families can see what this is like.

We go home today, and come back tomorrow morning and have the first chemo treatment.

Thanks so much for all the prayers and well wishes!  Our family truly appreciates it.

Get Ready...Get Set...Go!

Bailey put a countdown to chemotherapy on her blog, which I found both cute and sad.  She has shown so much strength during this and I am so proud of her.

She keeps saying how she is happy just to be doing something.  I know how she feels.  My own problems caused by Neurofibromatosis, have gone untreated my entire life.  WATCH-WAIT-WATCH-WAIT

Doctors under-educated, or simply not wanting to take the risk in my complicated issues.  Doing something feels good....it feels like we aren't helpless and just waiting for something worse to happen.

Even though Chemotherapy is scary and unpredictable...It does not compare to the fear and unpredictability of NF.

We have such wonderful support from family and friends...and I am so grateful to all of you!  Please follow Bailey's journey, as she blogs about NF, from a child's view.

BAILEY'S BLOG

After The Mask-Thriving with Neurofibromatosis!

It's tradition, Halloween is meant to scare. Neighborhoods are decked out in spider webs, carved pumpkins with freaky faces, skeletons, and witches. We watch scary movies and go to haunted houses just to get that extra thrill.

For some, though, Halloween is seemingly lived year round. Living with a condition that makes you less than "normal" is something that many people experience. Having a highly visible disability can make the holiday feel odd and unsettling. I often joke that I should just Trick or Treat naked, painted orange, and say I'm Muno. I laugh as I say it, even to my husband, who laughs with me. But in truth, that's just a mask as well - deep down, when I really look at it, it hurts.

I am friends with many men and women who are much more severely affected by Neurofibromatosis than I am. While we all suffer from the same disorder, their Plexifom Neurofibromas create visible deformities, such as those often identified with the Elephant Man - to the point that our disorder is often linked with Proteus, which is the actual Elephant Man's Disease. Unlike the common neurofibromas, which stay round and contained, regardless of how numerous they become, plexiforms have no such boundaries. They can twist and disfigure a person's body and face with ferocity.

While the rest of the world put away their masks last night, my friends cannot escape their deformities.

Masks, though, go beyond our looks. Masks come in the form of attitudes. This is one of the reasons Halloween is so popular - its a day where 'normal' people trade in their emotional masks for physical masks that won't be judged. For one day a year, the world can be whoever they wish to be, with no judgement.

But the real Halloween is what the average person lives year round, as the world hides behind false motives, their fake fronts, and a false sense of normalcy as they walk through life pretending its better than it is, so they don't have to face reality.

Those in the NF community who experience the harshest of NF's effects are faced with their reality daily, and we have many in our ranks who face the world head on, regardless of the world's difficulty doing the same in return. The nastiest masks are never worn on the outside, but on the inside, keeping us both from discovering who we really are as well as letting others see the same.

Many have suggested that Thriving is just a mask - meant to cover the reality of the pain. That isn't Thriving however. Thriving is seeing the masks that we wear, and learning to throw them out in favor of reality, accepting it, and moving forward anyway.

Thrive on!

MRI for Bailey

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

She is so brave...

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

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

NF Awareness

WOW, NF month has sure taken off! At least on FaceBook. There are so many who are contributing to the information being put out there. Bravo!

NF month has been crazy for us....last week, at my kids' school a teacher who saw my article in NW Woman magazine came up to ask me questions about it. Confused because she had heard that NF was 'The Elephant Man Disease' she said..."You don't look like you have Neurofibromatosis."

I just smiled and gulped down my extreme frustration that this disorder has been WAY misrepresented....and asked her if she wanted to see how NF affects me. She of course said "sure"....so I lifted off my shirt (something way out of my comfort zone...but this IS NF month after all)

My tumors were "hidden" under my shirt, but my attitude about having NF is something that has grown faster and stronger than any of my growths. This teacher looked at my back and front and raised her eye brows..."I had no idea", she responded.

And THAT my friends is what bringing forth AWARENESS is all about!

I know having Neurofibromatosis isn't something you want to go scream from the mountaintops, but that may be what it takes, to be heard.

Yesterday was awesome....I met with a Dr who is my children's allergist (I have no idea if NF and severe allergies are connected--but this Dr was VERY interested in hearing about NF) He told me he only had one other patient who has NF, and admitted he was totally clueless about this disorder.

He spent his lunch hour just sitting there asking ME questions and taking notes, I swear I wish I could have videoed this! I was some-what tongue tied --because I was excited about this opportunity to talk to someone who was actually listening!

NF Month is going to make this ripple affect....I just know it! Make a point to talk to someone about Neurofibromatosis! Turn it Around and TEACH!

Thriving Thursday

Science Fair!

Off she goes...THRIVING with NF! My bright, smart, beautiful young lady! I'm so proud! We worked on this till about 10pm last night, putting on the finishing touches.

She asked me "What if I have to give a speech about NF?" I just told her to be herself, honest and true."

She proudly went to school, holding her science project....Not ashamed at all, to expose her brain tumor and story about living with Neurofibromatosis!

Thanks to all for your wonderful ideas for this! I am sure it will be one of the projects that is talked about for years to come!

BAILEY is THRIVING with NEUROFIBROMATOSIS!

What's Up Wednesday?

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

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

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

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

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

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

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

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

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

One step at a time. Whew!

Tumor Talk

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

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

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

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

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

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

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

Motivational Monday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

www.achildsviewintonf.blogspot.com/

Turn it around Tuesday

At 14 yrs old, I was an awkwardly plump child, who wore glasses, had short tom-boyish hair. A girl who struggled with classwork, but just did enough, to make her teachers happy. I was shy, and I could count my friends on one hand.

I knew I was different, but no one knew just HOW different I was. I had seen Drs...Had physicals, and even with NF in out family AND with its tell-tale marking on my body, it would go undiagnosed for years!

I remember one time, while getting dressed for gym class, and slipping the gym shirt over my head, a girl making a comment about my "dirty back". "Ewww, Kristi, You need a bath!" I had never looked at my back before, I mean, who really needs to, right? But I knew I wasn't dirty. Another girl came up to me, before my shirt had fallen to my hips and poked me, "Ya, and what are all those bumps?" I just slammed my locker shut, fixed my shirt and walked out of the locker room, with my shoe laces flying.

I walked around the corner, out of site and reached my hand up my shirt and felt my back...I felt tiny bumps all along my spine and around my hips and I began to cry. I slid down the wall and put my head in my knees. The anger was welling up inside me and my breathing became fast. I tied my shoes and wiped my face. I looked over at the group of girls in my class who were laughing and pointing at me. I wanted to run away! What was this , that was happening to me? Why weren't my parents talking to me about it? Why haven't the doctors said anything?

I am now a mother of a beautiful and wonderful 14 yr old daughter. Like me, she has NF1. Like me, also struggles in school. Like me, she has few friends and is socially awkward. Like me, my daughter possibly could have gone "undiagnosed" for years. But, unlike ME, Bailey has someone to talk to, someone to trust. Breaking the cycle is what I am all about. I am so proud, that Bailey is proud of who she is.....because when I was 14 yrs old, I was so far, from where Bailey is.

I don't blame my parents, or the doctors for not recognizing the NF in me, in fact it just proves that we need help in educating EVERYONE. My mom, to this day, is in denial about NF and its affect on the family....she doesn't really have a clue about the ins and outs about the seriousness of it all, and just wants to avoid it all. Neurofibromatosis is scary, no doubt about it, but avoiding the symptoms will not solve anything. Not talking about the issues involved with NF, will only make them worse, when you eventually DO decide to talk about them.

We have been open and honest with our kids from the start. Explaining, guiding, sharing and we have found this to be a much better way to deal with the hugeness of Neurofibromatosis. It works for us. It amazes me...so much, but it does. Bailey seems to have taken off and become passionate about standing tall in her own NF and I couldn't be more proud!

Standing tall her her, is all part of breaking the cycle...and TURNING it AROUND! HAPPY TUESDAY!

Sorry for missing my Motivational Monday....I will post some pics of the MAKE A WISH PARTY SOON! :)

Why Why Why?

I just love talking to children. You can talk about absolutely nothing, and carry on a conversation for hours! It's really incredible.

After Rachel's MRI yesterday, I stopped to pick up Riker and Brooklyn at Sue's. (She has a child in Rachel's class so we decided to hang out until she got home so Rachel and her could play for a little while)

The kids had fun jumping on the trampoline...Even Brooklyn, who mostly flopped and rolled around, while the other kids jumped high.

When Rachel's friend got home, she ran over...."Hey why weren't you in school today Rachel?" I just sat back and watched as they swang on the swings. (Rachel NOT taking Drs. orders to "take it easy" but she was having fun) "Ohh cuz, I had my MRI..."Rachel replies. "What's an MRI?" ....."Well I have NF, so I get to go in a tube and sleep while the doctors look into my head!" "That's weird, why do they need to do that?"--Rachel just runs off...giggling...."Cuz I have NF!"

I knelt down to Amirra who was very obviously left confused, but wanting to know all about this fun---tube sleeping adventure. I explained to her all about MRI's and how they are similar to Xrays, in that they can "see" into your body....and tell the Doctors different ways to help make you better. She was VERY interested and listened to every word. I told her how Rachel got to go to sleep, so that she was VERY still....and how the camera takes pictures of every little tiny part of your brain. "But WHY....why did she have to do this? Why does she have NF?" I looked over at Rachel who was now bouncing on her bum to her feet on the trampoline and I smiled. "Well, sweetheart, she was born with NF...and the MRI makes sure she has no owwies in her brain." This little girl just looked back at me, still not quite getting it, but at least she was starting to. "Well I think NF is cool, cuz Rachel is cool"...she runs off to bounce with Rachel.

Amirra's mother stood there and wiped a tear from her eye....I had totally forgotten she was there. In that moment of explaining NF to a child, the world just grew smaller. "How do you do it?" she asked me. Even this mother, looking back at me, couldn't fully understand Neurofibromatosis. "So you mean Rachel has tumors? Is that what NF does?" Sue asked. I looked at Sue, square in the face and asked her to look at me. "What do you see when you look at me?" I asked her. Her eyes shifted, and she said "I don't know, I see you." "No...Sue. REALLY look at me." "What am I supposed to see, Kristi?" Shocked that my "obvious" tumors weren't seen by her, I pointed them out. "My tumors Sue, my neck, my face, my forehead. THIS is what NF can do." Slightly lifted my shirt to show my belly tumors. "You know Kristi, okay I see them, but that's NOT what I see when I look at you." I learned a really good lesson yesterday, in that she did exactly what I wish everyone would do. See past the NF, right into the very heart and soul of the person. Talk about an emotional day. WHAM-O

Motivational Monday

"I wish to be a Princess, and to see the castle!" Rachel said as her eyes lit up up with excitement.

Lora and Kathy talked to Rachel about where the castle was, and how you need an airplane to get there. The other kids circled around Rachel, like hovering vultures, waiting for a meal.

The wish granters needed to hear Rachel say it....."I WISH TO GO TO DISNEYWORLD!!" She screamed. Our awesome wish granters then talked to us about the technical side of all this and handed me some paperwork, as the kids opened up some gifts.

I was already soggy with tears....I can't imagine how the rest of this wish is going to go.

I sat and watched as the kids tore into their gifts. After all the birthdays and just having Christmas, this was sure a treat! I was so amazed at the thoughtfulness in picking these gifts out...they were perfect!

Rachel opened up a official Make-a-wish Barbie doll, Brooklyn got a Little People Airplane and Riker got a read-a-loud story book. The older kids got gift cards for Target...which we will save to buy goodies for the plane ride!

The wish granters (Lora and Kathy) and I visited as the kids talked about the gifts and about the upcoming trip.

This was an awesome time to help someone understand Neurofibromatosis and its affect on our family. NF doesn't just affect those diagnosed with this life-long monster....Everyone in the family feels the pain from it.

I hate knowing knowing that there is nothing I can do to make my kids better. No cure, no treatments. The progression of Neurofibromatosis, is steady and cruel and I hate every second of it.

But in that moment, while telling Kathy and Lora all about NF, I looked over at my children and saw them happy. They didn't care about NF. In fact, they never really do. I am the one who stresses..I am the one who worries.

So even while NF may take part or all of my daughters sight, cause tumors to form in and out of her tiny body, cause learning disabilities and limit her motor abilities-SHE is the one who is teaching me to go beyond the diagnoses and see past it.

Lora and I have been in contact since her visit with us, and our trip to Disney World is set. March 22nd, out family of 8 will venture off to Florida to stay in "Give Kids the World" resort. We will visit theme parks and have fun...taking NF and squashing it, for a week.

This is the very first vacation for our family, so we are very excited. Make-A-Wish has already blessed my family so much, I can't imagine what is in store for us.

Thriving Thursday

“Move out of your comfort zone.

You can only grow if you are willing to feel awkward and uncomfortable when you try something new.”

Brian Tracy

Fear doesn't rob you of anything directly. Fear simply creates an uncomfortable physical and mental state. This is a place I have lived in my entire life. Fearful of what other people thought of me having a disorder like Neurofibromatosis.

I was even scared of my NF...After years of denying -- avoiding my own diagnoses, finally accepting it, brought with it, many unknowns. I didn't like it at all, but avoiding the NF wasn't doing me any good.

When I chose to "Thrive" with NF....It wasn't just that I was finally taking responsibility for my health, it was more that I was choosing to show my children, and others, that staying in the fear was not an option. The fear was done controlling me! I wanted to help show people that they were not alone in their world of Neurofibromatosis.

But when I walked into Monique's Salon, in Spokane Valley, the fear hit me hard! I didn't know if the staff had ever seen anyone with Neurofibromatosis. Would they want to touch me? Would they see my bumps and freak out? I was scared that they would see the tumors on me and run the other direction--I was embarrassed.

The women there in fact had never seen or worked on anyone with NF...But I found comfort when the women who were involved in my make-over, truly wanted to know more, and understand what it was I live with everyday. They listened and asked questions about my NF...they were caring with the way they took care of me.

Sometimes, growth, requires us to become a bit uncomfortable. Stepping directly into yours fears, takes a lot of courage, but once you do it, the strength you gain is amazing!

I was made to feel amazing about my body. The ladies were not afraid of me, or the NF. Their loving hands massaged and worked on my body and taught me that not everyone is afraid of what they don't understand.

I wanted to THANK the staff of Monique's Salon....You helped me to be less afraid of what people think....you helped me overcome the fear of the whole "Spa Scene".

I loved my Make-Over day.....Thank you for being a part of helping me grow...and helping me THRIVE with NF!

I want to be like you....

My 13 year old daughter looked at me, after I told her I was going back to NIH (National Institute of Health) -- "I wish I had NF, like you, so that I could go with you."

Her eyes filled with tears and I just hugged her.

She had no idea what she was really saying, she just wanted to be close to me. But her words melted my heart.

What frustrates me is that she DOES have NF - but like me at her age, she doesn't appear to have any remarkable symptoms other than the cafe au lait spots. Dealing with Rachel and Braden seems easier, since they have specific needs to address, but I battle with getting Bailey fully checked out, for fear of what we might find.

It may sound stupid coming from someone claiming to 'Thrive with NF', but I battle with the same sense of denial about Bailey that I battled with for years about myself.

We've got her scheduled next year for some initial tests, and hope to get some answers. I know she has NF, and I've told her she does. It's time for both of us to discover what that will mean to her future health, instead of hanging on to the hope that it'll just go away.

Thriving isn't easy. It isn't always consistent. It's a goal to live up to - an attitude that must be reinforced. The nice thing about Thriving, though, is that even when you fall off the wagon for a day, or create a blind spot in your journey, all you have to do is take a new action to get right back into the zone.

I pray Bailey never has to go to NIH, or deal with the many issues I and so many of you struggle with every day. But if she does, I want her to know that I AM here for her - eyes wide open and Thriving attitude in place.

Are YOU Thriving today?