Fingers Crossed!

Bailey has gone almost a month without  chemotherapy, and this scares me.  After her port removal last week, we were all set to begin a new course of treatment...But those plans were on hold.

Insurance was denying the new oral chemotherapy and we were left with doing nothing but wait.

It took almost 2 weeks of Bailey's doctors going back and forth, but we finally got her medicine approved!  I never imagined that the I could be so happy about the green light for more chemo.

This past year has flown by...But very little (if any) progress has been made in regards to the tumor that lays deep inside my daughter's brain.  While surgery is NOT an option, chemo has not done what we had hoped either.

The new chemo, will come via UPS on Monday.  Afinitor is a relatively new medication, that comes HIGHLY recommended.  Our Oncologist tells us that kids with Neurofibromatosis tolerate this type of chemo really well, and that they have seem shrinkage, in kids that have the same type of tumor Bailey has.

So we're hopeful!

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  

Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's

 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)

Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.

  

But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...

She has a tumor that went from "nothing"...to "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.

Merry CHRISTMAS

THRIVE ON!

So...How is Bailey doing?

I know...I know.  I haven't been great at posting updates on how Bailey is doing.  But perhaps that famous saying "No news is good news", rings true.

Bailey has been doing chemotherapy for a tumor on her Corpus Callorum for 8 months now.  I was surprised when I scrolled back on my blog posts and realized..."Wow...there is no way it has been 8 months!"

But it has.  The crushing news that Bailey needed chemotherapy because a sneaky little tumor decided to creep up, while we were monitoring another tumor on Bailey's acoustic nerve, pushed us into the WE NEED TO DO SOMETHING category in late March of this year.

Bailey decided she wanted to do a video blog today, to let everyone know how she is.  I am so proud of her!  Her positive attitude has been something that has gotten her through the rough times, of the last 8 months.

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.  

Blogging Through Chaos

This morning, my oldest daughterstarted High School. I watched as she headed into the GINORMOUSbuilding. She looked so small walking towards the doors. I wantedto get out of the car and run after her. I wanted to bring her backhome, where she would be “safe”.

But I let her go....

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

This day held busy-ness. With summerstill hanging around for 7 kids at home...Chaos loomed, pending myreturn from the bliss, I found in grocery store, being able to shopalone.

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 saysthere were 10 inside...so where did the other 3 go? I guess Rikerand Brooklyn were EXTRA hungry.

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

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

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

Lunch was a mixture of whatever thebabysitting kids brought, mac-n-cheese and otter pops. And oh, Ifound the rest of the pancake sausage on-a-stick things...They wereunder the kitchen table.

Riker decides he wants to catch up onhis summer workbook. “This is This...That is That”...He writeshis “N's” and “D's” backwards....But reads REALLY well! I'mso proud! Brooklyn drips her otter pop across the kitchenfloor...then Carter walks behind her, saying “COOL...bluefootprints!” UGH! CHAOS! :)

I look at the time...I still haven'tput make-up on! Did I go to the school like this? Really? I have togo 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 kidswent Friday and got their pic taken to be a part of the NO CAVITYCLUB! Woo hoo!

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

We show up at the dentist and the ladybehind the desk says our appnt is at 3:00pm, “YOU are REALLYearly!”, 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....

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

Thrive On

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!

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!

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.

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.

BAILEY'S BLOG

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! 

BAILEY'S BLOG

Thrive On!