Tuesday, June 28, 2011

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!

Friday, June 24, 2011

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.

Thursday, June 23, 2011

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!

Wednesday, June 22, 2011

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!


Monday, June 20, 2011

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!

Sunday, June 19, 2011

To MY Daddy!

I just wanted to take the time to thank all the father's out there, but wanted to pay a special tribute to my own daddy...and let him know how much I love and appreciate him.

I know we didn't always see eye to eye on stuff...But your strength and guidance has helped me so much...Especially while facing the hurdles in my life.

You didn't always like my choices...But you loved me anyways.

You seemed to always take time...when I really needed you....Especially when my car would have issues!

You see past my flaws and always believed in me.

My favorite memories of you...is when you would spend "hours" curling my hair!  
("A couple's two, right daddy?")

Thank you, Dad...For always being there!

I wish I could spend this Father's Day with you...

Saturday, June 18, 2011

Not so 'THRIVING' today

Today, I don't feel like 'Thriving'.  Today, the world seems to have a plot against me.  It's times like this, that I have to be extra aware of how far I let myself go down.

I woke up with a headache.  Not your 'everyday'  take-a-tylenol, type of headache...but a REALLY bad one.  The kind of headache that only finds relief when I take (2) 500mg hydrocodones.

When I wake up like this, it's hard for me to THRIVE.  I don't feel good, and the last thing I want to do, is to try to make others feel good.

Why can't the doctors fix me?  How can I possibly live a full life, while in so much pain?  Who in their right mind, wants to live life, popping pain pills, just to have a few moments pain free?

I've said it over and over in this blog AND when I speak, that it's okay to have a bad day....a bad week....even a bad month.  It's okay to not THRIVE all the time....But what IS important, is that you don't let yourself get so angry, and so depressed, that it keeps you from bouncing back.

I may not feel good today....But I have the hopes that tomorrow will be one of my good days.  I have the "Thriving Bar", that is always going to be their...waiting for me to grab onto it.

Thrive On (even when you don't feel like it)

Wednesday, June 15, 2011

A Night to Remember...

Bailey had no idea what to expect. She isn't a "girly girl" and has never really liked her hair and make-up done....but last night was different! It was a night that chemotherapy didn't matter...Thinning hair, didn't matter.

Last night, we were among family.  A family that does not judge, and embraces everything about you.

Last night, was all about Bailey....And the 50+ other young adults who came out to the Prom that was held for current and past patients of the Children's Hospital in Aurora, Colorado.

We took the elevator to the third floor of the Mariot Hotel, and there were men and women, ready and waiting to glam up my daughter.

Bailey didn't know what to do....."Do you want your hair up or down?", "Curled or straightened?"  Bailey just shrugged her shoulders, so the woman started curling. :)

Bailey looked so grown up....So beautiful....So happy.

Thanks so much to all involved with this wonderful night, aside from the parking, it was a night Bailey will never forget! :)

Thrive On

Monday, June 13, 2011

You're a FAKE!

I just got an e-mail from someone telling me that they thought I was a fake.  That my whole "Thriving Thing" was for attention and money.

I've gotten a few e-mails like this, in the the past, but never chose to address them. Rich tells me I should take the high road, and consider the fact that I may have some 'haters' as a sign that I'm actually making a difference.

One thing this person said is true.  I am online and sharing my stories for attention - that is, ATTENTION for NF. Our disorder is one of the least recognized, least understood on the planet, and it deserves attention. I want others to hear what I have to say, and hear what YOU have to say, to allow it to impact their lives so THEY believe that they can also continue to learn more about NF, and aspire to themselves THRIVE with Neurofibromatosis
Anyone who truly knows me, knows that my only intention of being so "out there" with my Thriving attitude is simply to show others that they have the control to change their attitude....That having NF, or any other challenge, doesn't have to smash your dreams.

As far as becoming rich from Thriving with Neurofibromatosis....my husband and kids are still waiting for the Brinks truck to show up.  Everything I make from Thriving gets put back into creating more product, bringing more awareness, or, as need be, making sure my lights don't get shut off.

The "profit" I see from what I do, is that of seeing others change their attitudes....And I guess THAT does make me rich.

Thrive ON! 

Saturday, June 11, 2011

CTF Colorado Chapter Annual Picnic

  I LOVE connecting with other families who are dealing with Neurofibromatosis.  The connection these activities provide, is a vital part in how we cope with this disorder.

Today was the CTF Annual Picnic in Colorado and my family (all 8 of us)  piled into the van, excited to meet some new friends.  

Mr. Fun the clown/magician showed up and made all the kiddos laugh, with his jokes and great tricks!  

 Rachel was picked to show off some of Mr. Fun's silly tricks!

Thank you CTF, for another GREAT activity!  

Friday, June 10, 2011

The Roller Coaster of Life!

We've been planning it for WEEKS!  Riley had been counting the hours....the minutes, until the day came, where the two of us could use our discount tickets for the LakeSide Amusement Park in Denver.

Yesterday, was one of the best days I have had in a LONG time.  It was a time to just have fun, and connect.

Riley and I headed for the GIANT white wooden roller coaster, that has been a part of this park for more than 70 years!

Before the ride opened, Riley and I made a goal of riding this ride over and over 30 times.....After a few times on it though, we thought 20 times, was a more realistic goal.

We'd ride, then, run around to the entrance, over and over.  Keeping up with Riley, my 10 year old, is not an easy task, but it was sure fun trying!

We made our goal of 20 times, and became quite popular with the ride operators who commented that they hadn't ever seen a "woman MY age", ride this coaster so many times.  HA!

20th Time!


 HATED IT!  Anything "spinny" makes me horribly sick!

During our 18th time, on the wooden coaster, while raising my hands, for the entire ride, I slammed my elbow onto the metal bar.

I didn't know it then, even though the pain was horrible, that I had dislocated it.

Riley and I ran back around to the entrance, another 2 times, to complete our goal...By then, then pain too much for me to handle.

After our 20th time, the park closed ...We had MADE IT!

Kinda funny, and totally worth it.  The emergency room doctors, kept popping their heads in asking me if I was "The Roller Coaster Injury".

X-rays were taken, then my elbow was popped back into place.  It's black and blue and has a deep bone bruise.

This is kinda like life. It's hard, you want to give up.  But you keep going, because of a goal!  Life has its ups, and downs.....It's really fast parts, straight and slow parts, and sometimes you get hurt, but if you stay focused on your goal, it makes the ride totally worth it!

Thrive On!

Wednesday, June 8, 2011

My Magical Summer!

My favorite summer was in 1984.  I was 10 yrs old and didn't have a care in the world.  The day school let out for 2 1/2 months, seemed like the best day of my life!

"No more pencils....No more books...No more teacher's dirty looks!" was sang as I ran off the school grounds, to my house, a few blocks away!

I stripped of my school clothes, and put on my swim suit, that stayed on, the entire summer!

There is definitely something magical about summer!  Until you become an adult...Then it changes into something different.

With 6 kids all home for summer vacation, as well as 2 babysitting kids, summer has become, well....BUSY!

We still have chemotherapy, and countless doctor visits.  We still have days filled with nausea, exhaustion, and  simply not feeling well.  There is no "break" from all the seriousness that Neurofibromatosis has brought to our lives...No breaks from driving back and forth to the hospital....No breaks from blood counts, temperature taking and hair falling out.

What we do have, is today.  We have the chance to make the summer as magical as we want it.  We can live our days in our swimming suit, and watch tv till we fall asleep.  We can laugh at the belly flops in the pool, and run through the sprinklers.

Sometimes, magic has to be found and sometimes, you have to make your own magic.

Thrive On!

Wednesday, June 1, 2011

Neurofibromatosis Support Bracelets

Keep on Going!

The last few weeks of Chemotherapy have been rough.  We are almost done with our 8th treatment, and Bailey is having a rough time.  She is tired all the time and is beginning to lose some of her hair.

The reality of all of this is hard on everyone....And I try to make sure Bailey knows, that it is okay to "fall apart"....To have bad days.  She tries so hard to put on a good face...But one can only do that for so long.

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.” -Napoleon Hill (1883-1970)

We have realized, as a family, just how strong we can be.  We have learned to lean on each other and focus our energy on ways to keep our spirits up.

The kids are out for summer and Bailey is really looking forward to going to camp.  It's a time away from Chemo and doctors...A time that she can just be a kid, and enjoy life.

As always, we will continue to THRIVE ON!