New Round of New Chemo

For the last 3 months, Bailey has received chemotherapy for a brain tumor....News that the tumor has grown through the treatment was heartbreaking.  Was the last 3 months all for nothing?  Or....Did the last 3 months of Carbolatin keep this tumor from growing even bigger?

It's hard when things don't go your way.  I sometimes feel like a toddler, who just needs to have a good tantrum, to get out how frustrated I am.  I want to scream and cry, and tell the world that this isn't FAIR!

Tomorrow, Bailey starts a new round of therapy, in hopes that we can stop this tumor from getting any larger.  A biopsy was talked about...then quickly ruled out, for fear that doing one, would cause more harm than good.

Sometimes life is just life....and sometimes the battle of life hurts like hell....But once you get through the battle, to the other end, you look back and see how truly blessed you were, to have made it at all.

Thrive On!

Negative People!

Negative people are like human black holes.  They sometimes come out of nowhere, then suck the life from everything around them.

They think, "If you are happy and positive, then you must be crazy...or better yet, you're lying."

Living with Neurofibromatosis isn't easy.  I can be the first to tell you that I have often thought that the battle wasn't worth the effort to continue to fight.

I have been criticized and made fun, my entire life, for the choices I have made....How I look, what I wear, how I talk...And now that I am adult, people criticize my choice to have children.

To those people, who continue to spread their own unhappiness with life to people around them...How dare you!  Never once have I judged couples who have a genetic "abnormality" for choosing to start a family. Never once would I allow MY own disdain for life to affect someone I barely know...or heck, even those that are closest to me.

Keep your negativity to yourself....I'm too busy to hear how YOU disapprove of MY choices, that have NOTHING to do with you.  I am too busy living my life, raising my sweet babies, giving them the best life I can.  

I honestly don't need to hear that you feel I should have sterilized myself, as to not keep the dreaded "NF Disease" from continuing on.

I get it....I know sometimes life sucks.....Sometimes things  happen to people that completely destroys their faith....But THAT'S YOU, that's YOUR life....Don't try to destroy MY faith, just because you are so unhappy with yours.

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!

Have Faith.

In the game of life...the odds are often stacked against us.  Pressure. Fear. Anxiety, are knocking at your door.  You have a choice to make.  You can chose to doubt yourself and gripped by fear...or choose to believe you have what it takes to overcome it.

Today TWO of my children will be at the Children's Hospital in Aurora Colorado.  I am finding myself fearful of this visit.  My mind fluttering with "what ifs".

It's normal to fear...to dread the results of an upcoming medical tests...But what good does dreading it do?

I come from a LONG line of worriers, so it's only natural that I follow suit, right?  Nope!  I'm all about breaking the cycles I grew up with.

While I do still worry and dread....I don't make my life all about that.  It takes work to refocus your mind and to expect the best out of a seemingly hopeless situation....and without trying it, you may never know the true grace that can be brought to you by God.

Letting Go.

It's a tough thing to do.  I always seem to find myself in this tug-of-war with God.  I'll give Him my fear, anxiety and worries....but pull them back, thinking I can handle the stuff on my own.   Ya... a Tug-of-war with the most powerful being in the universe.  Crazy!

So today....while I do worry and fear the results from the MRI my daughter is going through....I will release it and give it all to God.  Only HE knows the results, and only HE can give me the ability to handle, whatever the results may be.

Today, my choice is to NOT be gripped by my fear.  Today, with God's help, I believe that fear has no power over me, or my children.  Today....I expect a miracle!

THRIVE ON!

Ruffling Feathers

Ruffling Feathers

I have always cared about what people thought about about me. So much so, that I have actually changed the course of my life, several times. Unbelievable? Yeah. I was so afraid to offend, so afraid to hurt feelings that I would never speak my mind about anything I believed in.

I used to fear conflict and criticism so much, that I would run the other direction, when confronted with a choice. I don't love conflict now, but somehow since my new found 'Thriving with Neurofibromatosis', I am less afraid of it. I have found a new sense of bravery, that makes less afraid to ruffle some feathers.

Unpopular choices sometimes have to be made. Whether they hurt feelings or not. I worry less now about being judged for them. It's much easier when you have something to believe in, especially when you are fighting for your life, or your children's lives.

In order for me to do right by my family, flying under the radar wasn't going to happen anymore. I had done that my entire life and it had gotten me no where. Criticism is a part of life, and me being out here on the internet "THRIVING", I risk criticism of others, and actually that would be true if I was on-line or not.

What do you believe in? Are you letting what others think of you control the way you live your life? It has taken me a long time to find my voice, but as I found it...I became a stronger advocate for my kids and a more compassionate person, who is accepting of others and the choices THEY make.

Neurofibromatosis, has made me stronger, not weaker. It has firmed up my back bone so much so, that it will never- ever be walked on again! With each passing month I grow stronger, and less afraid of the ruffled feathers.

Thrive On!