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.  

Why Neurofibromatosis?

"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!

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 daughter started High School. I watched as she headed into the GINORMOUS building. She looked so small walking towards the doors. I wanted to get out of the car and run after her. I wanted to bring her back home, where she would be “safe”.

But I let her go....

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

This day held busy-ness. With summer still hanging around for 7 kids at home...Chaos loomed, pending my return from the bliss, I found in grocery store, being able to shop alone.

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

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

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

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

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

Lunch was a mixture of whatever the babysitting kids brought, mac-n-cheese and otter pops. And oh, I found the rest of the pancake sausage on-a-stick things...They were under the kitchen table.

Riker decides he wants to catch up on his summer workbook. “This is This...That is That”...He writes his “N's” and “D's” backwards....But reads REALLY well! I'm so proud! Brooklyn drips her otter pop across the kitchen floor...then Carter walks behind her, saying “COOL...blue footprints!” UGH! CHAOS! :)

I look at the time...I still haven't put make-up on! Did I go to the school like this? Really? I have to go pick Bailey up, and get to the dentist, with Braden and Riley. Thank GOD, this dentist sees our kids 3 at a time! The younger kids went Friday and got their pic taken to be a part of the NO CAVITY CLUB! Woo hoo!

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

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

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

Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

One Step Forward...Two Steps Back

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

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

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

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

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

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

No answers, just disappointment.

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

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

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

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

Thrive On!

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!