Say What!?

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.

I'm in Control-Right?

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

Who controls NF? 

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

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

 

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


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


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


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

 

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

Glomus Tumors! Ouch!

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

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!

Get OUT of the NF Box!

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

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

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

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

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


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

Time to throw that NF Box away!

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


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

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


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


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

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

Neurofibromatosis 1

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

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

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

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

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

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

Neurofibromatosis Type 2

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

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

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

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

Ignorance Is Bliss?

If ignorance is bliss, why aren't there more happy people?  ~Author Unknown

"Mommy, what are those bumps on your back and tummy?"  The response to this question, that I asked my mom, when I was 8 yrs old was met with rage and anger, "That's God's curse Kristi!"

If you haven't read my book, my story is that of fear and ignorance.

Hear NOTHING about NF, because it's too scary, speak NOTHING about NF because we don't know enough, and close our eyes to the symptoms, because we don't want to see the potential problems that NF can cause.  Unfortunately, this is how many of those living or dealing with NF, chose to live their lives.

While I was paying for gas this morning, the checker noticed the back of my van, and told me that her son was diagnosed with NF when he was 6 months old.

I was thinking "AWESOME" (not because the kiddo was diagnosed, but because I found yet another person to connect with!)

I asked this woman if she was part of the CTF chapter in Denver...and she responded "NO...and I don't really want to be."   Whoa, I thought to myself.  She must've had some kind of bad experience.  "We keep our son at home, and don't need any help from anyone." she continued.  "We've seen drs, and we know what he has, and just choose to keep him away from them."

I (for the first time ever) was lost for words.   I understand how frustrated people can get with the medical community. When we don't hear the answers we want, its easy to throw our hands up and walk away.

This woman went on to tell me that her 3 yr old son has a plexiform neurofibroma that wraps around his armpit and neck.  "We had it imaged, a year ago, but there's nothing we can do about it, so we just want to have our son home."

We hear that a lot in the NF community - "There's nothing that can be done." When we hear that, we should translate that as "There's nothing we know of that can be done, but others might know more" or "There's nothing that can be done RIGHT NOW, but we need to watch this, and watch out for other symptoms of NF".


If we shut ourselves off to the medical community as a whole, essentially throw the baby out with the bathwater, believing "nothing can be done", we may as well give up totally and give in to this dreaded disorder.  There may be plenty that can be done!  Research and treatment changes everyday! I can understand feelings of helplessness.  I get total frustration, with a world that is ignorant about NF...But why, on Earth play a part in it?

I have been told a hundred times, that with my hydrocephalus and brain tumor....that "nothing can be done"....but I refuse to just roll over and take that as the final answer. 

I won't let the doctors who choose to not go the extra mile in my case, stop me from finding a doctor that will.

I will not teach my children to give up, just because someone tells them no.

It is OUR responsibility to fight for what we need and deserve. If we cover our eyes, we will fail to see all the good and all the potential those with ANY disorder have.  If we cover our mouths, we fail to speak out and share with others about NF.  And if we cover our ears, we fail to hear about new treatments, new studies, and new ways to get involved.


Thrive On!