Third Times a Charm?

The UPS guy came today.  He left a package on our door that had a big RED stamp across it that read URGENT!  I knew what it was...We have been expecting this delivery for over a week.  Generally, I am excited when we get a package from UPS...But THIS was Bailey new chemotherapy.  Excitement, simply wasn't there.

This is our 3rd (and hopefully final) chemo...

The first chemo (Carboplatin) did nothing...Bailey's brain tumor grew through treatment...The second (Vinblastine) has kept the tumor stable...But put Bailey's body through WAY too much...so NOW we are ready for the KNOCK OUT PUNCH!

But I feel different about this chemo....When you are in the hospital--getting blood draws every week....Everything so sterile and precise....It leaves me extremely weary, of having Bailey swallow this pill every night, with no one monitoring anything (except the once a month visits for a CBC)

I can't help but wonder if THIS chemo will be it.  Will my 16 yr old battle this forever? I know Neurofibromatosis is a LIFE LONG battle...But Bailey has been in a fight, that goes beyond what MOST people with NF have to deal with.

At 16 yrs old, she has had more MRI's, needles, surgeries, fevers, hair loss, hearing loss, days lost from school, nausea, dizziness (the list goes on)  than ANY teenager should have to face.  At 16 yrs old, she has had to face the monster of uncertainty....


I should be able to provide a comfort-zone for my child...But it's honestly something I can't offer Bailey...and she knows it.  I can tell her everyday, that "Everything is going to be okay"....(And it very well may be okay in the end)  But I can't promise her...And that hurts me so much.


My job, is to teach Bailey to put all of her fears and uncertainty into God's hands.  Doing this has brought with it, its own comfort.  We know as a family, that we are too small to handle any of this...and ONLY GOD has the control.


A 'THRIVING LIFE' means to let go of all the things we have no control over...and to rein in and focus on the light, that letting go brings in.


I am a work in progress.  I want to "fix" Bailey.  But what I have realized over the past year -- is that sometimes it's the most "broken" people, who are the most positive, God-loving people you will ever meet.


I am broken.  And I am trusting God....and letting go.


Thrive On!

Who Do YOU Affect?

So, I get this call from our case manager.  The woman who is IN CHARGE of all the approvals or denials involved with our family.  I highly doubt this woman has any idea how important she is...In our reality, she plays God.
We are in the middle of a complete case review...This means submitting ALL financial records; bank statements, bills-Anything money related.  Short from my blood type, this woman knows me better than anyone! (On second thought, she probably knows my blood type too)

Anyway...She began asking me questions about out financial "status" and how things are going.  "Your bank records show me that ..."   I cut her off, telling her that our financial life was basically at a stand still...Until we can ensure the life of our daughter.

Silence.

"I don't like what the bank statements say either." I told her.  "It's our reality and somehow, God sees us through!" :)

She knows all about Bailey; the tumor, the crazy steps we took to secure medical insurance, the chemo...The ups and downs of this treatment...

I heard sniffling and when she responded I could tell she was crying...

This woman, who deals with hundreds of cases --if not thousands, began asking questions about Bailey.  She asked about the tumor--where it is, what kind it is, and what was the prognosis.

I told her that we were one of the "lucky ones".....

"How can you possibly say that", she asked me...

" 'Cuz....Bailey is still here...Still smiling...Still relatively healthy...And THAT'S what I choose to focus on."

She says "God Bless You!" and tells me that my case will be done in a few days...Then wishes me luck for all I am dealing with.

THIS...is just one of the MANY reasons, our family CHOOSES to THRIVE.  Because THRIVING doesn't just affect those who choose to do it...It affects EVERYONE you come in contact with!

Who are YOU going to affect today?

THRIVE ON!

Update on Bailey

This is how we do Chemo.  From DAY 1, Bailey has gone into her infusions, with a smile on her face.  I am so proud of her!  Not ONCE did she whine or cry about having to be stuck with needles!

Below, are the many faces of our chemo appointments---Enjoy!

 (Making Prank Calls @ Chemo)

 (Before Infusion Starts)

 (E-E-E-O-O Being Silly @ Chemo!)

In waiting room, giving a "Thumbs Up!" 

  (Tired of Mom ALWAYS having to take chemo pics)

(A "bad" day.  A visit to Urgent Care, for IV fluids and a emergency MRI) 

 (Goof Ball)

(A Happy Camper)

Bailey once said..."I know that God is with me...I know that sometimes you have to go through the dark, to eventually get to the light....and this is just my dark time."

Such an amazing quote, from an even more amazing girl....I sometimes wish I had Bailey's faith and simple out look on life.  To her, chemo isn't the "end of the world"...It's simply one road, that will get her to the next.

Bailey has lost about 15 pounds, lost a few handfuls of hair, feels tired MOST of the time, and has ingested a couple bottles of Zofran (not all at once of course).  But overall, she has felt pretty "normal". 

We have our "bad days", our "scary days", even our "angry days"....But instead of focusing on those days, we appreciate them, because it helps give us a platform to stand on, to reach for those better days.

Bailey has less than 2 months left of her year long chemo treatments left....And while we are ending chemo, with  tumors still inside my child's brain, we are hopeful for a bright future.  We will continue to practice what we preach and take one day at a time.

Chemo Doesn't Get a Snow Day!

The kids are so excited to have a Snow Day today...

But our Snow Day happens to also be a Chemo Day.  I sooo wanted to call in sick today and just stay in bed, but when you havet a kiddo who requires weekly treatments, a sick day isn't possible.

Thanks to our neighbor, who let us borrow her 4x4 truck to make the trek out to Aurora, because over 14 inches of snow fell overnight.  Bailey counted 23 accidents on the way.

NF is a lot like living in a permanent blizzard. It can be a dangerous road. We have to get the right resources to make it through, and make the best of what we have. But one way or another, the snow's gonna fall.

 

This morning, we're plowing through it, later we'll play in it. It's not the snow that's bad, it's what you do with it.

Thrive on!

Neurologist Visit

Round and Round We Go

For almost 3 weeks now I have been experiencing extreme dizziness....Dizziness to the point that I had my mother drive me to today's appointment.  That is saying A LOT!

Dr. Oh did a full Neurological exam and noted that my blood pressure was LOW- 90/56 and my heart rate was HIGH- 110 (which is weird, 'cuz I had been sitting in the waiting room for a 1/2 hour)

I haven't had an MRI in almost a year, so that was the first thing to get ordered...

The Dr. asked a bunch of questions about my dizziness, but there wasn't much to tell.  I have been dizzy 24/7, with periods where the dizziness gets REALLY bad.

Dr. Oh explained that my hydrocephalus wouldn't be getting "worse"...But the dizziness COULD be a symptom of a new tumor growing. *great*  I am familiar with the type of tumor he was talking about, since Bailey has this going on with her.

"COULD BE THIS.....COULD BE THAT"

The answers with Neurofibromatosis are never clear.  Heck, the answers with LIFE are never clear.  But what IS clear, is that I am doing something.  I am not just sitting by, allowing life to continue to swing at me.  Even if nothing can be done....and NF takes my life, I will go knowing I did everything I could and lived a life that I can be proud of. 

THRIVE ON!

Is It Cancer? MPNST and Neurofibromatosis

No one wants to hear the word Cancer directed at them, or anyone for that matter.  But for those of us with risk factors, we must realize the possibility of it happening.


Neurofibromatosis carries with it a number of issues; neurofibromas,  pigment changes in the skin, skeletal anomalies, and learning disabilities.


Although neurofibromas are benign tumors, malignant peripheral nerve sheath tumors (MPNST) sometimes occur. MPNST, in the past also referred to as “malignant schwannoma” or “neurofibromosarcoma,” and can occur in the general population but is one of the hallmark complications of NF1.


MPNST, typically forms from unexpected growth of a preexisting neurofibroma, particularly a plexiform neurofibroma, the first symptom is typically unexplained or sudden pain, in the area in or around existing tumors.


Symptoms may include:

• Swelling in the extremities (arms or legs); the swelling often is painless.
• Difficulty in moving the extremity that has the tumor, including a limp.
• Soreness localized to the area of the tumor or in the extremity.

The thing to remember is that just because you have a higher risk in developing cancer, doesn't mean you will.  Being aware of your body and noting to your doctor any changes you notice is key in staying healthy, and catching things early.  Be aware of your tumors...how they feel and what they look like.

What is MPNST?

MPNST is also referred to as malignant Schwannoma, neurofibrosarcoma, and malignant neurilemmoma. This type of cancer usually develops in young or middle-aged adults, more often in men than in women. The average age of MPNST patients is between 29 and 36 years. About half of all cases of MPNST develop in people who have Neurofibromatosis.
http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor

Treatment?

To treat these tumors, a patient sees an oncologist and a neurosurgeon.  Also, patients can benefit  from being treated by medical teams that specialize in soft-tissue sarcoma tumors. Treatment of MPNST often involves several steps, depending on the location of the tumor, type of sarcoma, other patient circumstances and overall health.

Types

• There are three main types of treatment for MPNST. These treatments are surgery, radiation and chemotherapy. Doctors often use all three types in combination to create specific individual treatment plans for a patient.

*Surgical Removal

• The most common treatment for malignant peripheral nerve sheath tumors is surgical resection. Resection of tumors involves the removal of the tumor and surrounding malignant tissue. The doctors analyze the edges of the area removed, and if cancerous cells remain, they remove a little more surrounding tissue. This continues until the tissues the doctors remove are clear of cancer cells.

Radiation Therapy

• Radiation is the use of specifically directed ionized radiation in a medical setting. Radiation is a common treatment for these tumors, and is often very effective at different stages. Preoperatively, radiation can reduce the size of a MPNST, making surgery easier for the doctor and therefore reducing the time spent under anesthesia. Radiation helps doctors achieve clear borders without having to cut out more tissue, which is very important when the tumor is in a peripheral area such as an arm or leg. Clearing the borders without going deeper often saves the patient from an amputation. Radiation can also destroy cancer cells that surgery couldn't remove.  (Radiation is sometimes used as a "last resort" with people with NF, because it has been studied that Radiation can make the symptoms of Neurofibromatosis worse.  Your doctor will decide what is best for YOU and your situation

Chemotherapy

• While chemotherapy is not particularly effective at treating localized MPNST, doctors often use it to treat cancer that has spread to other areas. Chemotherapy, taken either orally or intravenously, involves taking medication that kills cells.

I didn't want to start the week with a negative post that scares people, but MPNST happens....And the more you know about it, the better chances you will have at catching it sooner.

MPNST is rare...But if you arm yourself with knowledge, IF it does happen to you, your outcome will be much more positive.

Even when it's scary....Even when it's overwhelming...A Positive Attitude is key in fighting ANY battle!  Remember, it's E.A.S.Y. to THRIVE; EDUCATE yourself-Watch your ATTITUDE-SHARE your stories-and YIELD to the possibility that anything is possible!

THRIVE ON!

Thankfulness

thank-ful-ness Adj: The consciousness of being grateful for what has been received.

My Thankfulness List

*My Family.  I put this first, because without my husband and my children, my life would be meaningless-pointless-and empty.  The 7 people who live in my house with me have seen me at my worst....And they still love me.  They encourage me,e very single day...Even on the days when life just seems overwhelming and un-winnable.
-Specifically, my husband...who for whatever reason, loves me despite all of my "flaws".

*GOD.  Normally I would have put Him first...But without my family and the joy they bring to me...I HIGHLY doubt that there would be any sign of God in  my life.  God has also seen me at my worst.  He has seen me doubt Him, question Him, get angry with Him and even at times turn my back on Him...But yet, He is always there, ready for me to come back to Him.

*My Church Family.  There are those few that I have connected with on a deeply spiritual level.  You know who you are...I appreciate your encouragement more than I could possibly express with words. I LOVE YOU.

*Children's Hospital.  We met in July of 2010 and you embraced our family, and ALL of its medical needs without hesitation.  Your quick and thorough care of my daughter Bailey has been amazing.  You have touched every single member in my family in such a wonderfully positive way.


*Make-a-wish, Starlight Foundation, There with Care, FISH, Once Upon A Child.  Your organizations are priceless in the way they have touched my family.  You all give in selfless ways and we truly appreciate everything!

*Facebook/Blog.  This has been such a wonderful tool, to be able to connect with literally THOUSANDS of families who are dealing with Neurofibromatosis.  Three years ago, when I began the whole Thriving thing, I never imagined that it would become what it is today!  Thank you all for your wonderful feedback.  I hope that I can continue to represent A Thriving Life, and be an example of what it means to Speak and Live a positive attitude.

I wish all of you a wonderful, safe, blessed Thanksgiving.  

Thank YOU, for blessing my life with your friendship.

Thrive On!

Insurance and Neurofibromatosis

A few weeks ago, when I went to my mail box...I got a surprise letter, that stated that my daughter Bailey, was no longer eligible for medical coverage.

The letter stated that as of March of last year, my daughter did not qualify for coverage...My mind immediately goes to the date we discovered that Bailey  had another brain tumor...A tumor that required immediate surgery and chemotherapy.

According to the letter...NONE of Bailey's MRI's, Surgeries, chemotherapy treatments, hospital stays--NOTHING, was covered by her insurance. (Nice of them to let us know, a year after the fact-eh?)

As you might imagine, I kinda freaked out.  THIS was the whole reason I applied and was approved for disability for Bailey....To AVOID insurance issues like this one!

I immediately called the phone number on the letter, and left a message.

A day later, I get a call back from the Social Security - Medicaid office...This woman had investigated our case and informed me that a state-wide "glitch" had occurred and thousands had received a similar letter.

The woman on the other end of the phone had no idea of how much stress this had caused me.  My mind tried to add up an estimated cost of the 10+ MRI's, Chemo treatments, surgery and hospital stays...When I got to over a MILLION dollars, I stopped trying to add.

I hung up the phone and breathed a sigh of relief.  But....What if I hadn't called?  Would the issue had just worked itself out?  Could I have saved myself the stress and worry, and just ignored the letter?

Yeah...I could have.  But "ignoring" has been what I had been doing, for most of my life.  Ignoring everything about Neurofibromatosis; it's symptoms, warning signs and most importantly, I ignored a world that needed to open its eyes and be educated about this complicated condition.

Taking ACTION, is part of the E.A.S.Y. way to THRIVE!  Explained in my book 'Thriving with Neurofibromatosis'....You cannot THRIVE, without ACTION!  When you live A Thriving Life...it means your attitude and actions radiate in everything you do.

Don't Ignore...Take Action
THRIVE ON!

http://www.thrivingwithnf.com/thrivingwithNFbook.htm

Assert Yourself!

I don't consider myself a very assertive person.  For most of my life, I have let people walk all over me.  Family members, friends, co-workers, doctors... heck, even my husband.  

It's HARD to stand up for yourself....Especially when you aren't confident with what you have to say.

I remember one doctor visit a few years ago, when I was talking about my hydrocephalus and possible shunt surgery.  I'll put it bluntly...The Dr. was a jerk.  She had wall around her a mile high and didn't seem to care one bit about my pain and suffering.

I was dismissed without any answers.  No solutions for my headaches, and surgery was simply "Too risky and not an option."  A quick "See you in a year"....and I walked out feeling WORSE than when I walked in.

So how do you get doctors to listen...REALLY listen to you?  Yes... there are rules to this, and if you follow them, I promise, you will have a great doctors visit!

First....Be specific. Instead of just complaining about your pain, describe it!  "The pain in my fingertips has been going on since 2009, and it REALLY hurts when...."  or "My headaches have been worse since 2008, and no over the counter medications seem to help."  The MORE specific you are, the better the outcome will be.

Doctors have a specific time allotted for each patient scheduled...But that does NOT mean that your time has to be cut short.  

Do NOT accept ..."See ya in a year." answers. 

Next...Keep it short. Bringing in 10 pages of your medical records is not helpful. No doctor can’t get through that in 10 minutes.  Going to the doctor, with a list of symptoms would be like taking a child to a candy store and telling them to pick their favorite candy, in 3 seconds....IMPOSSIBLE!

Try scheduling a few appointments, to talk about specific issues.  For example; I scheduled 3 appointments for myself in one month, with the same doctor.  1-to talk about tumor-related leg pain, 2- to go over the results from my thyroid ultrasound and 3- to refill important medication, and talk about side affects.

It can be overwhelming to have that many doctor visits, but trust me, you'll get a more positive and thorough result!

Know your family history, especially when it comes to genetic disorders.   Most doctors want to know  if what you are experiencing, can be tracked back to another family member.  A simple "family tree" of health related issues, can be a HUGE time saver, and I suggest you map one out, BEFORE your appointment.

Ask for what you want. “If you’re assertive and say, ‘I want to be checked for this, this, and this,’ without sounding too hypochondria-ish, doctors have an obligation to do so.  I went into the doctors stating the fact that my headaches aren't cured by simply Tylenol.  I asked for specific medication that was recommended by another doctor, and I got a prescription for it.  Know yourself...Know your needs...and present those needs confidently!  Which brings me to.....

  Don’t apologize. Think of your appointment as a business transaction!  I'm serious.  Doctors are paid to listen to everything you say.   None of this..."I'm sorry to bother you doctor" or "Do you think I should...."  That kind of talk will get you nowhere!

Understand what comes next.   Ask four questions after every appointment: What do you think of my  symptoms?  Are you ordering any lab tests? Why? And when should I expect to hear from you about the results?  Ask for any referrals or any other important information that you will need.

And last but not least...

Switch doctors (if you must). Don’t wait. Get someone new who really hears you.  It took me 33 yrs before a doctor recognized my Neurofibromatosis.  That's FAR FAR too long!  If your needs are not being met, find a doctor that will take the time to get to know you.  

I know for some, this isn't an easy process....But nothing worth having is ever "easy".  YOU are in charge of you...and no one will do it for you....

Present your new THRIVING attitude to the world, and you'll be amazed at what you get back!

Thrive On

There With Care!

Early last school year, my daughter Riley, gave a quick presentation in front of her 4th grade classroom. She told the story of our family, and how her older sister Bailey was diagnosed with a brain tumor, that required chemotherapy.  Riley also briefly explained what Neurofibromatosis was...and how the disorder affected others in her family.

A few days later, Riley's teacher caught up with me on the playground of the school.  She quietly asked me questions about NF; what it is exactly, can it be cured, what treatments are available, why chemotherapy etc.  She then asked me if I had ever heard of a company called 'There with Care'....

When she explained what this company was, and what they do for people...I honestly blew it off.  I thought..."We aren't one of those families."  The teacher gave me a pamphlet, and told me that I should really look into signing up.

Over the next few months, we got word that Bailey's tumor had DOUBLED in size, despite weekly chemotherapy treatments.  A change in chemo, and countless complications from doing that followed.

One day, I was cleaning up around the desk, and the pamphlet the teacher gave to me months before fell to the ground.  I went to my computer and typed in the website www.therewithcare.org  and began reading.  Countless stories of children and families dealing with cancers, or other life altering illnesses, filled my heart with so much sorrow.

As I continued reading, I realized that, we ARE one of those families.

Hospital stays, blood draws, port access, fevers, nausea/vomiting, hair loss, weight loss....We were dealing with something very serious, that not only affected Bailey, but the ENTIRE family as well.  So I began a letter to MaryBeth, the program coordinator.

A wonderful e-mail returned asking me for more details about our family and her offer of different things that could help our family.  Hesitant to accept, but graciously appreciative, I told MaryBeth I would call her about the offer she gave to our family.

Two days later SHE called me to check on our family.  I was emotional and stressed and she gently pressed me to tell her what was happening....I told her about our van not starting, and the mess of complications Bailey was experiencing from the chemotherapy.  She offered a quick fix for our van and told me she signed us up for a delivery of pre-made meals.

There with Care has truly been THERE with CARE.  A few days ago we saw yet another reason this company exists.   Our 2nd car, died...The fuel pump went out, and left Rich stranded a few miles away from home.  A gracious 'good samaritan' helped push the car to a parking lot and a friend drove Rich home... Then the worry about HOW we were going to get the car fixed followed.

There with Care came to the rescue.  They towed the car and delivered it to Wolf's Auto Care in Boulder. This auto place donates their time and experience to There with Care to help families who don't have many connections or options.

The car we take to and from chemotherapy was fixed within hours and given back to us.  I was so impressed with how quickly and wonderfully the issue was dealt with.

There with Care gives without asking anything in return.  They help because they see a need.  They give because they know it makes a difference.

Our family would like to show its heartfelt appreciation to this company for everything they have done!  You have helped us see that when help is needed, there are "Super Heroes" that come just in time!

This organization would not exist without donations and support from various contributors...So I would like to thank them too!  If you would like to donate in any way, please go to www.therewithcare.org 

Thrive On!

Say What!?

Have you ever said something, that you wish you could take back?  Put words out there that were insensitive, or just downright mean?

I have this neighbor, who approaches me, every few months, to try to sell me on her "special oils", that she tells me have cured, even the most aggressive of cancers.  "If you would just buy a few of my oils, I know your daughter's brain tumor would go away." she tells me.

Really?  Gee...If your oils cured cancer, then why the heck aren't you a bazillionaire, living in some mansion?  If your oils cured cancer...why isn't there a line around the block, ready to purchase your product?

The thing that people don't realize, is that Bailey doesn't have cancer.  She has a brain tumor, caused by Neurofibromatosis.  No oils, or special food, is going to take it away.  The only way to "cure" Bailey's NF, would be to have caught it before it reached her chromosomes....meaning, at conception.

But in saying that, it doesn't take away the fact that Bailey's brain tumor is very serious.  It's in a spot, where even taking a biopsy is considered too risky.  A spot that if it grows much more it could have a significant affect on her cognitive skills and personality.

My neighbor told me a few weeks ago, that I must not truly want Bailey "cured", because I have chosen to not purchase her oils.  *Hold me back*  I couldn't believe it!  I tried to explain to this woman, that her oils could not cure Neurofibromatosis...and she kept insisting they would.

I asked her, if she had any oils to cure down syndrome....or muscular dystrophy.  Her answer..."No, of course not."  She seems to think that NF is some kind of infection, and all I need to do, is rub some cream or oils on my skin and I will be "fixed"...Then maybe, just maybe, I'll live up to her idea of perfection.

I know that most people just want to help...They want to provide some "fix" for Neurofibromatosis....But what I would love, would be for people to stop trying to fix us.  We aren't broken...We aren't diseased ridden...We are wonderfully made, in the eyes of God.

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.  

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

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....

Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

Who is Listening?

Communication is the key to better understanding, right?  I am typically clear with how I try to get people to understand what it is I am saying.  But there are some, who just choose to not even try to understand.

I was referred to an Endocrinologist to further investigate the NF tumors scattered all over my thyroid gland.  These tumors cause no pain, or obvious symptoms, but they are there.

I met with a doctor who is in his 70's.  I could tell right away this man was going to be the type I would have to stand my ground with.  The first words out of his mouth was something about fibromyalgia...."No, not fibromyalgia...."Neuro-fibroma-ma-tosis", I said nice and clear.

He looked very confused.  "You know there's no cure for that?  What exactly were you looking for me to do?"....Uh...gee Doc...Your job, maybe?

I know there is no cure for Neurofibromatosis.  But there is nothing I hate more, than being dismissed, like I am some leper, who just needs to go back home to hide.

Being robbed of hope, from someone who has known me for 2 minutes?  Not gonna happen!

First of all, if you have read any of my previous posts, you know that this kind of attitude from a doctor, doesn't fly with me.

After the doctor said that he couldn't help me....I got up and walked out the door.  He didn't examine me, didn't take any kind of history, or look at any of the MRI, Ultrasound notes....Just simply put no effort in trying to understand me at all.

Sometimes, it takes standing up, and walking away....to get you on the right path. The path to 'Thriving', takes effort...And I know I am worth the journey.  It's time to clear the path of its road blocks, and press on!

As Always--Thrive On!

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