Wednesday, May 23, 2012

Tips to Ensure a Successful School Year

Summer is the PERFECT time to start thinking about what the next school year is going to be like.  I know I know...I want a break just as much as you do...But TRUST me...If you want your child to have a successful school year...You have to start preparing for it in advance.

Talking about Neurofibromatosis is easy for me...I love to educate and help people understand this disorder that affects my family in so many different ways.  The key to being comfortable talking about NF, is making sure I, myself understand it. (not an easy task, I know)

The more I learn about NF, the easier it is to talk and teach others about it...Even *gasp* TEACHERS! :)

Steps to Ensure a Successful School Year
These are based on tools I personally use, for my NF children

1.  Contact the School in Advance! This is a MUST if your child has a set IEP or other specialized plans. If this is your child's first year, it is still important to contact the school EARLY ON, to let them know of any special needs your child may have.

You don't want to wait until the FALL to register your child--trust me!

When registering, you MUST inform the school (in writing) indicating your child's special needs- Include reports from the doctors, IEP's, Neuro-psych evaluations, eye and hearing exams etc.

I recommend a "sit down" conference BEFORE school actually begins.  This CAN be scheduled as soon as your child's teacher has been assigned.  

This will be the time when the child's teacher will review reports, including their IEP.  It is soooo important that the teacher be fully informed about the child's special needs...AND that they understand the needs fully.

I have had to deal with MANY teachers who read up on the IEP...But don't truly understand it.  Make sure ALL teachers involve with your child are present, at ANY meeting you have.

2.  Meet the Principal!  If there are safety concerns, routines and resources you want to know more about..THIS is the person to go to.  If they don't know the answer...Make sure they point you in the direction of someone who does.  Remember THEY are there for YOUR CHILD!

3.  Develop a Communication Strategy!  I have of the e-mail addresses of ALL of my kids' teachers...Including the special needs teachers---E-mail has been VITAL in staying in contact.  I'd suggest contacting the child's teacher/teachers once a month....Just to stay up-to-date about what's going on at school - AND this also lets the teachers know, that you are a pro-active parent!
(this helps EVERYONE involved)

4.  HELP THE TEACHER UNDERSTAND!  This is SOOOO important!  In regards to is a HIGHLY complicated and extremely variable condition.  If you want your child to get the most out of school...The teachers dealing with your child need to know what's happening with them.
Heck...I learn new stuff about NF all the time...So it is extremely important to talk to your child's teacher on a consistent basis about the ins and outs of Neurofibromatosis.

If you are not comfortable talking about NF, or just honestly don't know what to say....CLICK HERE to print out a GREAT brochure that talks all about NF and the complications.  I suggest you print out a FEW and give them to all of your child's teachers.

Providing the teacher with resources is a great way of getting them to understand!

Every child with special needs is different...Help your child's teacher get to know your them, by fully disclosing ANY information you feel is important (IT'S ALL IMPORTANT By The WAY)

Don't just say that NF is a "tumor disorder"....Becasue it's NOT JUST a tumor disorder!  

5.  BE INVOLVED!!!  Volunteer at the school and be as present as possible!  Offer to help in the classroom -- Join the PTA.  Schools LOVE volunteers....And this will also show that you are willing to make an investment in how your child learns.

I know not everyone has the time to volunteer -- but even one day a week makes a HUGE difference!

6.   BE PREPARED FOR THE IEP MEETINGS!  A successful IEP meeting means several things....First understand it takes A LOT of time and consideration to set up an IEP meeting.  Being respectful of that time means you not only understand, but you respect that time.

Also, just like when you go to the DR....Being prepared with questions and concerns by writing them down helps to not only move the meeting along smoothly....It may also give the teachers an opportunity to ask questions as well. :)  And that's ALWAYS a good thing!

7. STAY IN TOUCH!  Always notify the school of any outside evaluations, medical information or support services that may help the school in continuing to provide your child's needs.

A parent's ACTIVE involvement in the education of their child (special needs or not) is INVALUABLE!  By sharing your knowledge, your resources and your time....You can help ensure that your child is in the best possible learning environment.

Parents and teachers working together -- Imagine that!


Questions?  Leave a Comment!

Monday, May 21, 2012

"DOING SOMETHING Makes Me Feel Better!"

What makes somebody THRIVE?  

Websters dictionary defines the word THRIVE as:
"Something or someone who grows strongly and vigorously...Going beyond survial"

When 'Thriving with Neurofibromatosis was born almost 4 yrs ago, I had NO IDEA the impact it would make, on MY life...Not to mention, the lives of countless others, living with and dealing with NF.  I am proud to say that THRIVING has become a way of life for me and my family.

The concept of  'THRIVING' was something I could have never imagined when I was growing up.  So, the fact that my children have begun living a THRIVING LIFE has me bursting with pride.

But there are still times in my life when I just shake my head in awe.  When something happens that goes beyond reason and just shocks me with such amazement.

When I was a kid...I'd do ANYTHING to get out of going to school.  I HATED every minute I was there and went as far as to make myself pass-out in gym class, just to save myself from the tormenting I faced.

I'd play hookie, fake sick ---WHATEVER it took, to keep me away from the struggles I faced.

So...When I look at MY daughter, who is going through chemotherapy and dealing with ALL of the side affects from that.... A girl who has TWO brain tumors, and countless Neurofibromatosis complications and I see her get up every single morning and leave for school....without complaint, I can't help but just burst with pride.

Last Friday we got bad news.  One of Bailey's brain tumors is growing.  Two years ago this tumor was not there...Today, it's the size of a peanut M&M.  Over the last year, it has grown, despite being on 3 different types of chemotherapy.

The news was crushing.  (Probably more to ME than to Bailey)  But here is this 16 yr old girl who tells me..."I'd rather go to school today and DO SOMETHING, 'cuz DOING something helps me feel better!"  When I gave her every opportunity to stay home and rest.



Yes...In fact it IS!  THRIVING hasn't just affected ME and MY attitude....It has set an example that people want to follow!  Attitude makes a HUGE difference in how we allow things to affect us!!  I know for me and my family....THRIVING has kept my daughter ALIVE!  So why on Earth would I do anything else?


Friday, May 18, 2012

I Throw Up My Hands!

I'm angry.  I absolutely HATE Neurofibromatosis.  Today the only good thing that came our way, was all the love and support we got while we were waiting and after we got the results from today's MRI.


Neurofibromatosis...How DARE YOU!  While you have made me stronger...Your constant beatings are exhausting.  NF...You are nothing but a thief!

Seeing the doctor every 3 months is weird for us....It sorta makes me feel like we are less of a priority now, but in fact Bailey's tumors are HIGH risk for causing major issues.  The fact that she hasn't had any of those major issues, doesn't make me worry any less.

Today was our 'every 3 month' MRI...To check on Bailey's brain tumors.  We also had a fasting blood draw, to check on what the new chemo is doing to Bailey's body.

The days that led up to today had my mind whirling.  The "what ifs" have driven me (and I'm sure Bailey) crazy...But we tried to stay as positive as we could.....


I was in the waiting room...The possible outcomes of the MRI running through my head.  I sent up many MANY prayers, knowing that our family is just plain tired of all this chemo stuff.  

"We are so ready for some GOOD news Lord!"  was my silent prayer.

But the news wasn't good.

Dr. Rush showed us the MRI scan from December....And compared it to the one from today.  The word NO TUMOR patient wants to hear.....GROWTH.

My heart dropped to the floor.

The light in the room flickered...and I had to have Dr. Rush repeat what she just told us.



She told us that we would continue with the same course of treatment...But if this tumor shows growth in the next 3 month scan, we will HAVE to take action......Dr. Rush puts her hand on my shoulder and looks me straight in the eye...."We aren't there yet...Ok?"  

But this didn't make me feel any better.

I looked over at Bailey, who had her head down and was playing with her ipod....I am SURE she didn't quite understand what was just told to us.  The full meaning of today didn't come until we were in the car leaving the hospital.

"My tumor grew?"  Bailey asked me.  
"Yes, honey."  I replied.
"The one that can kill me?"  Bailey continued inquiring
"The 'important' one, yes."  I told her.

Silence filled the car and was almost deafening. 

I throw my hands up.  Not in a 'giving up' sense though.  I throw my hands up to the Lord.  I ask HIM to take this from us and DO something with it.  Change it.  Make it disappear.  Have it help someone else....SOMETHING!

I realize the only control we have in this, is how much FAITH we have...And how we use that FAITH to make a difference.

We will continue to BELIEVE--TRUST--and THRIVE
because that's just how we roll!


Tuesday, May 15, 2012

You Seem Fine...So What's the Big Deal?

I get comments all the time, telling me that our medical issues don't seem like that big of a deal. That because Bailey isn't deathly ill, laying in some hospital bed, that we must not be that bad off.

I'll tell you the reason we all seem fine, but first let me stress that medically speaking...We are NOT fine. As of 3 months ago, we are "stable"....But we are far from being CURED or FREE from danger.

 Bailey has gone through 16 months of chemotherapy....With NO SUCCESS! (unless you look at chemotherapy as something that prevented Bailey's tumors from growing out of control)

One of Bailey's brain tumors lays extremely close to vital nerves that control hearing, balance and facial muscles. The other, lays so far inside her brain, that Drs have even refused to biopsy it, for fear of brain damage or death.

 The thing about Neurofibromatosis is that, a person can appear to be a generally healthy person....But inside the body, the tumors are wreaking havoc. Growing and twisting around vital nerves and organs, cutting off blood supply and much needed oxygen. And because Neurofibromatosis is an unpredictable progressive disorder...We are never "out of the woods".

 Now for the reason we seem to be doing so well(medically)-- Despite the FEAR. The FRUSTRATION. The ANXIETY. The WAITING. The "THERE'S NOTHING MORE WE CAN DO". The ROLLER COASTER. The HEARTBREAK. The HOPELESSNESS. We are a family who THRIVES. We have decided, together, to NEVER focus on all the bad stuff.

 We have chosen to set an example and have decided to let HOPE, steer us. So when I enter a room and you ask me "How are things going?" And I reply, "Things are good!" Believe it. But also know that behind that "Good" a mountain, that we are holding up...And it's only because of our FAITH in God, that the mountain doesn't crumble around us.

Thursday, May 10, 2012

At Home Chemo- Update!

The 3rd month of "at-home chemo" just arrived.  My heart always skips a beat, when I see the delivery truck stop at my house.....Then a sigh of disappointment when I find out what's being delivered.

Bailey has TWO brain tumors that the doctors are hoping will be shrunk by this "new" therapy.  But I am worried with the lack of side affects...If this chemo is doing anything at all.

Isn't that sad?

At least with the Carbo/Vincristine Bailey had noticeable side affects that (in MY mind) meant the chemo was doing its job. But sadly, that wasn't the case.  One of Bailey's tumors went from a "regular M&M" to a  "Peanut sized M&M"....A crushing blow to us all.

A month break, then a switch to Vinblastine showed reasons to hope.  After 8 months of treatment however, the tumor had no changes.  Such a disappointment...Especially after the roller coaster ride of side affects (low counts being #1) 

The doctors in Bailey's case have often wondered "What's next?"  We were giving this option to STOP treatment totally...and let these tumors do what they will....Or begin this fairly new course of treatment .


We were told this was "fairly new"...Especially when it came to trying it on children with Neurofibromatosis....But THIS was MUCH better than doing NOTHING!

So month THREE....Bailey seems "normal"....Counts are good, hair not falling out in clumps, she doesn't look pale, her energy is better....If you didn't know her...You would never guess she was 16 months into her THIRD chemotherapy!  YAY for that!

But--My crazy mind gets spinning and with the lack of side affects, I often wonder what, if anything this Afinitor is doing for Bailey--Aside from raising her cholesterol from a semi high 200's to a dangerous High of over 600!

But we continue on...Hoping for the best...
After all...they say that a positive attitude can be the BEST medicine. 


Tuesday, May 8, 2012

The Many Faces of NF--Guest Post

I had the great please of connecting with Rachel Mindrup on Facebook.  A selfless woman who paints portraits and brings out the beauty in those suffering from Neurofibromatosis.  Rachel not only donates to the hope of one day finding proper treatment for NF's manifestations, she also provides an honest and beautiful look, into the heart and soul of Neurofibromatosis!

Thank You Rachel, for all you do, for so many!

(This blog entry was written by Rachel Mindrup.  She gave me approval to re-post on this site...For more information about Rachel and her work, please go to


My current project is called "The Many Faces of NF" and it encompasses portraits of people who have Neurofibromatosis and are themselves striving to bring awareness and further research to help find a cure for this genetic disorder. But, why paint portraits? Why not just simply donate money? Why bother painting the people who have NF when I could be painting pictures to sell to raise money for a NF Charity? This is the latter question I always get asked. And, before I go any further, I would recommend both, but I want to discuss the role of portraiture and how it serves to promote the mission of NF awareness and education that I am most interested in promoting.

According to the traditional view, in a successful portrait, the viewer is confronted with the both the person portrayed and the subjectivity of the portrait painter. In his book, Portraiture, Richard Brilliant makes the assertion that "Fundamental to portraits as a distinct genre in the vast repertoire of artistic representation is the necessity of expressing this intended relationship between the portrait image and the human original". This comment also suggests the notion that the portrait refers to a human being who exists outside the portrait. Unlike photographic portraits used for medical and legal identification purposes, the painted portrait is more than documentation; it is a consolidation of the interior essence of an individual combined with his or her external physiognomy. A successful portrait was to be either an exact replication of someone's external appearance or the artist's interpretation of that person's inner or ideal self. Most portraits, therefore, up until the twentieth century represented a formality of the portrait-making situation. In order to indicate the solemnity of the occasion and the timelessness of the portrait image in general, the sitter would sit in a formal pose. This rationale was used to show how important this general, statesman, writer, public figure, or other important individual was and to also depict him or her taking his role seriously.

Prior to the nineteenth century, only nobility and royalty were subjects of portraiture, so the idea of selecting someone to paint and portraying his or her identity based on what accomplishments he or she had done was a shift in the genre. This freedom also empowered the authority of the artist by implying that worthiness of being portrayed was dependent upon having a relationship with the artist. Today, rather than being strictly commissioned, artists can decide who they shall paint and thereby embarking in this genre of portrait painting assign the declaration of "I am painting you...therefore you are important to the gaze of the onlooker".

The next question is "Why paint portraits of people with NF?" NF is short for Neurofibromatosis, which is a mouthful to say, even worse to live with it. As far as the artwork specifically, I’m using gulf wax, conte crayons, and watercolor. More important than the media used is the intent behind the project. The portraits are a way to show people suffering from this disorder that beauty is not truly defined by genetic code. A lot of people with NF feel embarrassed physically because of its manifestations, some of which tend to be disfiguring. Some of this comes from our western culture's preoccupation with the ideals of "beauty" as it pertains only to an exterior physiognomy. Any stroll past a magazine rack will demonstrate our obsession with physical perfection in the excessive photoshopped displays of models gracing every magazine cover.

It’s my goal to try my best to show the world that there is a more relevant and truer form of beauty and one that does not just focus on fleeting external factors. The public needs to see more than external indicators; they need to see the wonderful people who happen to have this disorder. Because of this project I have been able to meet all sorts of wonderful people and so when I paint, I do not see bumps and tumors, rather, I see loving people, creative people, funny people, dynamic people. I don’t believe NF defines a person, I just believe people happen to have NF. NF is more common than you might think happening 1 in 3000 births, and yet, in my experience, very few have heard of it. Perhaps, I also paint to give comfort to those suffering and to those mothers who have children with NF as well. To let them know that there is someone out there that will not say “Neuro…huh?” but rather, "Yes. I know what you are going through too".

Most people who know me, also know that there is one obvious portrait missing in my project. Painting is a process just as dealing with NF is a process. There will be a day when I will be ready to tackle that portrait, today, however in not the day. In the meantime, if I can bring a bit of awareness, joy and compassion to an NF family then I feel that I have done something positive. And, really, when we look past our own needs and wants and focus on a greater ideal, I think we help to create important dialogues and understandings on a global scale. Hopefully, these portraits will serve as humble tributes to all of the people I have painted. It truly is my honor to paint them.

Tuesday, May 1, 2012


What does it mean to forgive?  I mean really REALLY truly forgive?

This past weekend I had a awesome opportunity to be a part of our annual Church women's retreat.  The theme...Forgiveness.  I knew this weekend was going to be an emotional one--because forgiveness is something I struggle with.

It's not like I have this long list of people to forgive, or vice versa....But I do have these deep seeded issues with a few, that I have chosen to bury away...maybe sorta hoping the issues would just dissolve and disappear.

For so long I have felt that I had a right to not forgive those who have gone out of their way to hurt me.  I felt why SHOULD I HAVE TO FORGIVE THEM??
    Colossians 3:13 
    Bear with each other and forgive whatever grievances you may have against one another. 
    Forgive as the Lord forgave you.

    I didn't WANT to forgive!  I was justified in my anger towards those jerks in my life!  It was THEM with all the problems!

    Or so I thought!
This weekend thought me an important lesson.
    When I forgive, I'm not letting someone off the hook....Instead I am freeing myself from the pain, hurt, bitterness and resentment....I am releasing the "hooks" the person had in me.
    Matthew 6:14-16 
    For if you forgive men when they sin against you, your heavenly Father will also forgive you. But if you do not forgive men their sins, your Father will not forgive your sins.
I hadn't realized how much un-forgiveness has affected me.  Holding onto resentment has literally drained me...and it wasn't until I really REALLY gave these issues to God, that I began to see how truly freeing it was to let it all go!
    I set myself free to experience peace and fulfillment. The power of forgiveness is truly amazing.
I have NO idea where I got the idea that NOT forgiving those in my past helped ME!  Did NOT forgiving them somehow get me to think that THEY were the ones who suffered?

I have actually uttered the words..."I'll NEVER forgive them!"  While I am busy resenting them and believing "I'm the right one".....Who's REALLY the one suffering?  Losing sleep?  Dealing with knots in my stomach?

The whole point of forgiveness isn't saying "I agree with what you did"....It's simply giving up the power and control and releasing that power to God....Then watching how God uses that power to turn it into something positive.
You don't forgive people for THEIR benefit.  You do it for YOUR benefit!

If you are holding onto resentment or anger....Release it.  Truly Release it!  Watch the power of God work!  You don't have to go to the person and tell them you forgive them (although this can be a powerful tool to your healing) But you DO have to completely let go of all the negative feelings -- then replace them with something Godly!

Life is too short to stay angry.  I challenge you....To go to someone who has hurt you...Release yourself from the prison of un-forgiveness.