Thursday, March 31, 2011

Port Surgery and First day of Chemo

video

Tuesday, March 29, 2011

Blessings Come Through Raindrops

Today was harder than yesterday.  I think the reality was hard to avoid, when we actually got into our room, and had the IV fluids hooked up.

Bailey has done amazing with this whole process, and I am filled with so much pride.

On the way to the hospital this morning, we heard this amazing song by Laura Story called Blessings....

I am guilty of praising God during the good times, and when things are going along smoothly....But when things go wrong, and I struggle, I get angry.  I have asked God, why He just won't take the pain away.  Why does my daughter have to endure the complications of Neurofibromatosis?  Is He even listening to me, when I am on my knees, crying out to Him?


But what I am learning, especially while going through this, is that God blesses you, even through your tears.  I have seen so much good come from this scary time.  The love and support that our friends and family have shown is has been amazing!

Remember, the rains of life, will eventually bring flowers.

Monday, March 28, 2011

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.



Friday, March 25, 2011

Sensory Integration Disorder and Neurofibromatosis

Sometimes I just feel like my life is just a process of rearranging furniture, in a house that's too small.  Nothing ever feels right, and I am constantly tripping over things that just don't fit right.

Anyone who has a child with Sensory Processing (Integration) Disorder knows that there are good days, and bad days...REALLY bad days.

I want so much to connect with my daughter, who is taking in the world at lightening speed.  Does she know I love her?  Or am I just another annoying noise to her?

When Rachel was a baby, I was told by doctors, she had colic.  When the remedies for this, didn't seem to be working, I was told that it was my breast milk, and that I needed to stop nursing.  Nothing seemed to fit, nothing was "fixing" the problems.

As Rachel grew, the SPD grew as well.  We didn't know it back then, even if we did, I'm not sure what we would have done differently.

Rachel is now 8 and finally got the diagnosis of Sensory Integration Disorder after being seen by an Occupational Therapist and  participating in many MANY tests, and filling out many MANY surveys.

But like with Neurofibromatosis....There were no clear answers.....No easy fix for this diagnosis.

I feel so helpless most of the time, because we never know what will set Rachel off.  Is the TV too loud?  Is someone sitting too close?  Breathing too loud?  Are the tags in her shirt bothering her?  Shoes too light?  Or like this morning....Did the egg yolk pop and run into the white parts?



These things often throw Rachel into "melt-down" mode...where reasoning is NOT an option.  I find it hard to not respond to this in a negative way, but ignoring it doesn't seem to do anything either.  Where is the balance with children who have this?

I have no answers....I am learning as I go.  Just like with Neurofibromatosis...I am left in a world of unpredictability, uncertainty and fear.  Fear that my child will choose to hurt herself, while she is in a fit of overwhelming rage....and that nothing I can do going to help her.

Is there something else going on with her?  Something more I can do?

She is receiving extra help at school from occupational therapists, the school psychologist, and her teachers....ALL who report Rachel is an "Angel" at school (with of course the difficulties in learning and large motor  skills) Who participates and is always willing to do what is asked of her.

Rachel also sees a therapist, who is also reporting Rachel as being "sweet and easy going".....Man if these people only could see, the switch that happens.  It's fast and furious and often comes without warning.

I have tried to video this explosive change...but this only gets Rachel more upset.

So we continue the dance around the egg shells.  We tell her how much we love her....and try hard to make things as easy as possible for her.



The Following are Signs of Sensory Integration Disorder


•        Over sensitivity to touch, movement, sights, or sounds
•        Under reactivity to touch, movement, sights, or sounds
•        Specific learning difficulties /delays in academic achievement  
•        Difficulty in making transitions from one situation to another
•        Tendency to be easily distracted / Limited attention control
•        Activity level that is unusually high or unusually low
•        Social and/or emotional problems
•        Difficulty learning new movements
•        Delays in speech, language, or motor skills
•         Physical clumsiness or apparent carelessness
•        Impulsive, lacking in self-control      
•        Inability to unwind or calm self
•        Poor self concept / body awareness

Thursday, March 24, 2011

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.



Wednesday, March 23, 2011

Spirit Week?


I love Spirit Week at school.  As a parent I try to make sure the kids dress the part and participate.

"Crazy Hair Day", "Pajama Day", "School Color Day"....It's a lot of fun, as long... as you remembered the right week to dress up.

As if 8th grade wasn't hard enough....I found myself slipping on my blue full-length zip up jammies, that still fit me from 2 yrs before.  These were COOL jammies....that got A LOT of attention at the camp I went to, with my brother.

I was SET to start "SPIRIT WEEK" off with a BANG!

Until of course, I got to school....Looking around seeing NO ONE dressed in pajamas for "Pajama Day", I tried to race after my step-mothers car as it sped away.

I went to the office where a calendar of the activities for the month was posted on the front door.  Pajama Day was NEXT Monday.  "UGghhhhhhhh!"  I wanted to run home....which I COULD have...but it was a LONG walk, and I had forgotten my house key.

I went inside to the front desk of the office and explained my situation, to a woman, who laughed hysterically and told me that there was nothing SHE could do, to help me.  I was stuck in baby blue zipper jammies for the entire day!

Eight grade was horrible for me.  I was a short, chubby awkward girl, who wore glasses and had short "boy" hair.  This alone gave the kids at my school a HUGE target for endless taunting.

I made it through that horrible day, which I could honestly say was the worst day of my life...and the kids made sure I didn't live it down.  For the rest of the year, I was reminded of how stupid I was, and how different I would always be.

For me, being different was horrible.  All I wanted was to be like everyone else.  I wanted to blend in.  But those kids were right....I would always and forever NEVER be like everyone else.  

After my NF diagnoses, this crushing realization brought me into a deep depression.  I couldn't lose enough weight, or put on enough make-up...I WAS different....Now I needed to change what I COULD change, to start making a difference.

Being different...Is something that should be celebrated.  As I look back at my childhood and all those people in my life who told me 'I can't' or 'I shouldn't' and laughed and taunted me....they have built me into a strong, confident woman, who is PROUD to be different!

Thrive On!


Here are a few pics of my kids during Spirit Week!  
I was sure to check the calendar to make sure of the dates! :)


Monday, March 21, 2011

Say Cheese!



While I was participating in a study about Neurofibromatosis and variablity in families at the National Institutes of Health in Maryland; I had the chance to meet with a group of dentists, who were specifically looking for abnormalities in the mouth, gums, jaw lines and teeth in people living with Neurofibromatosis.

Several studies performed, including the one done at NIH showed results that indicated that those who have NF, also have a higher that average chance for decay, and other abnormalities; such as tumor growth and jaw deformities.

I know for me personally, MOST of my mouth is either capped, or filled with silver.  No matter how much brushing, flossing or rinsing I do...I always seem to have 'something' going on, that requires treatment.


Why is this?  During my visit to NIH, my brother who also has NF1 was examined.  Now he is not the most hygienic, but the clinic noted that ALL of his teeth needed to go...Quite upsetting and embarrassing for my brother, I am sure.

One study I read, said that out of 110 volunteer NF1 patients, the results showed no connection between NF and dental issues....But with me just asking my Facebook NF family about this issue...I got an overwhelming response saying the opposite.

This is exactly the reason that more research needs to be done.  

Please Comment with YOUR Personal Issues Regarding This 
Maybe we can get dentists and orthodontists to take a closer look.

Monday, March 14, 2011

Do You Expect The Best?

When faced with an unknown result, do you expect the worst or the best?

I admit.  I don't always see the bright side of things, despite my Thriving goal. When walking into a new situation, whether its a new doctor, a new church, or a new opportunity, I often expect the worst out of people and situations.  It's just the way I have always been.  If the bar is set low, expectations won't be totally trashed, right?

As a result, I've built a wall around me that people are often unwilling to scale, and that I'm hardpressed to walk out from behind.  It's a wall that has grown thick and high, for years.  But in truth, it really hasn't protected me, or helped me, at all.

When you expect the worst from people or things, they often deliver.  It's almost as if I seek it out.  Why would I do that?!  There is good news, and good people out there if I would just let my guard down and open myself up.

I've spent the last few days very worried about my daughter Riley, who a few years ago was red-flagged for potential juvenile diabetes. This week, she's been showing all the typical signs to watch out for - being continually thirsty, headaches, stomach pain. I've been so focused on a negative outcome, despite the fact that all those symptoms can come from other things. 

I'm going to work hard to change my thinking today, and assume the best instead of the worst. It doesn't seem easy, but it literally takes the same amount of energy, and the result is I feel better about life.

Today we'll head to the doctor and find out more, and I'll keep you updated. Whatever reality pops up, we'll be ready to Thrive. 




 "Prepare for the worst, expect the best"

Wednesday, March 9, 2011

Chemotherapy

Our family is not afraid of going to the doctors.  In fact, we each look forward to it, all in our own ways.  For my children, it means they get mommy's undivided attention.  For me, it's a break--some alone time.  Even while trapped in an MRI, I find peaceful solitude.  I often drift off into a dream-like state and let my body become heavily relaxed.

I have tried so hard to never instill fear in my children, when going to the doctors.  We typically talk before we leave about what will be happening.  Shots.  MRI.  Ultrasound.  Or just a check-up.  I believe age-appropriate, full disclosure is the best way to let my kids know what may happen. 

But yesterday was different. We KNEW we were going to get bad news.  Even with the talk beforehand, there was no real way I could prepare Bailey with what the doctor would tell us.  

With changes in Bailey's symptoms and a report that there were "changes" in the recent MRI, I prepared Bailey, for what the doctor had suggested would be talked about at the appointment.  Chemotherapy.

But the blow, still hit us me hard.  The changes were not JUST changes, but a brand new tumor on a very sensitive and dangerous part of her brain.

When the doctor compared the MRI Bailey had in August 2010, then the one she had in February 2011, the doctor could see a hint of this tumor in the earlier scan...That she says, could have been mistaken for a vein.  

But the recent scan showed an M&M sized tumor on the Corpus Callosum.  This is the part of the brain, that connects the two halves together.


Bailey sat beside me unfazed.  I wasn't sure if she understood what was happening.  My eyes filled with tears as the doctor handed us a schedule and told us Bailey needed surgery to install the port

The port is a device placed under the surface of the skin to allow easy access to organs or the circulatory system for chemotherapy drugs.  We met with a really nice woman, who explained the whole process.

Bailey had a few questions and while we were waiting for the doctor to return, with a date for the surgery, I just held Bailey.  She didn't seem upset.  If it were me, I'd be a mess.  But I was a mess!  I was a mess for Bailey.

"Don't cry mommy.....God knows what he's doing, and I will be okay."

Man, this girl.  Here I was...a weak, sobbing mess.....and Bailey is uplifting me?  Again?  I wiped my tears and promised Bailey that I would be there for her, the entire time.  I praised my strong young lady.

"Will I get to miss school for this?"  she asks.  "Probably", I told her.  I told her that every week, after chemo, we'll go for a ice cream cone...that was good news to her, bad news for my growing waistline. :)

Whatever it is you are facing, you can find strength in the strangest of places.  Focusing on the problems (even the scary solutions to the problems) can wind up setting you back and facing you in a direction that will get you nowhere.

I always try to keep in my mind, that things could always be worse....and there are those out there facing far more scarier things.

We felt good when we leave the hospital.  We weren't told "There's nothing that can be done" or "Let's watch and wait".....we were given an answer....and for now....we will focus on that!

If you haven't already...head over to my daughters blog.  At 15 yrs old, she has quite a good outlook on things.  I am so so so proud of her! 

Thrive On!


Monday, March 7, 2011

Progressively Different

Neurofibromatosis is a progressive disorder that affects the nervous system.  No two people that are affected, are alike.  This finds people who are diagnosed with NF, feeling hopelessly lost.

One of the first things I did, to bring more awareness for Neurofibromatosis, was to participate in research.  The study was right down my alley.  "Variability with NF in families."

Why is NF so progressively different?  Why, when family members are diagnosed, are their symptoms so varied?

There are no real answers to these questions, which is why it is so important for researchers to have people step up and volunteer  to get a better understanding of this very complex disorder.

What are you doing with your diagnosis?  I know how scary it can be, to live with such unknowns...but why not take a stand?

FROM MY BOOK

The E.A.S.Y. way to THRIVE

EDUCATION
Fear breeds in the unknown....and ignorance lead nowhere.

ACTION
Live, think and breathe a 'Thriving' attitude. 

SHARING
When faced with ignorance or judgement...do not turn away.  Share who you are and what you live with every day.

YIELD 
Yield to the possibility that you can be whoever you choose to be.

Thrive On!

Wednesday, March 2, 2011

Ring*Ring* Ring


                                                    
It's really frustrating talking to people doctors, who do not understand Neurofibromatosis.   It's even worse, when the doctor admits, that they know "nothing" about the disorder and couldn't really explain the complicated results from the MRI tech.

Don't bother calling me, just  to tell me you are under-educated!  Don't bother trying to explain something you don't understand...and please....PLEASE go take a class, or open up a book and learn about this common genetic disorder, that 1 in every 3,000 people live with!

When the phone rings...It's sad, that I automatically assume it's someone calling with bad news.  Bill collectors, someone sick at school, or doctors calling with results from a test.  When  when the caller ID displays "private number",  My gut wrenches.  I hate hate hate talking to doctors over the phone.  Times like this...I wish I had a personal secretary that could take the message.

Bailey's pediatrician is a good doctor.  She is thorough and seems to genuinely care about the issues our family is facing....But she does NOT get an 'A' for tact.  Blurting out, "the tumor has changed and she has 'something else' going on with the corpus calorpum part of her brain."  Unable to explain further, she stumbled through notes left and apologized for not understanding what it meant.

Now I am left waiting for the actual Neuro-Oncology visit a week from now.  I googled the information I did get, only to find myself in an overwhelming web of confusion and worry.  I know better than this!!!!  I just want answers.  CLEAR answers.  Then I want a course of action.  That's not too much to ask, is it?

Unfortunately, for people living with Neurofibromatosis....it IS too much to ask.  Far too little is know about NF, much less understood...and the course of action...is often, to "watch and wait."  Wait for what?  For things to get worse?

So, next week....we will hopefully get a more clearer understanding of the tumor changes and the new findings in Bailey's brain.  She will have a hearing test, to confirm the loss of hearing in her right ear, and then we will see what is next.

Chemo?  Surgery?  We don't know yet.  All we can do is to remember that whatever will be, will be...and take comfort in knowing that the Lord is with us every step of the way.

Thrive On