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!

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!

Day in the Life of Neurofibromatosis

 Surgery!

 Lots and Lots of IV's and Blood Draws

 Hospital Stays

Labs and Clinic Visits

Insurance Woes

FINALLY - Some time where I can reflect on the last week!

When people ask how I'm doing, I generally say that I'm fine.  And I AM fine...But I'm also angry that we live in a world where much needed treatment is "denied" by pencil pushers who have no idea how important this treatment is to someone.

I'm exhausted at the continual battle.  I'm frustrated that our family faces one thing after another.  I'm sad that there is nothing I can do, to help my daughter.

I can see denying a tummy tuck, or breast enlargement....Insurance should not cover those things anyway...But to deny my daughter chemotherapy treatment, is just ridiculous.

Bailey had her port removed on Thursday and we were set to start her new round of chemotherapy on Friday.  But when we got to the hospital, we were told that insurance has denied coverage of this new treatment.

So...What are we going to do now?  FIGHT.  I am used to fighting for what I feel is best and I don't plan on stopping.  I will FIGHT until the insurance company says YES.  I will FIGHT until my daughter is healed....Then, I will continue to FIGHT until I take my last breath.

That's part of 'Thriving'....It's has become who I am...and what I live for!

Thrive On!

Surgery Today

Afraid, Apprehensive, Discouraged, Nervous, Disheartened

Is how I am feeling this morning, as I get Bailey ready for the hospital.  We keep getting congratulated for this WONDERFUL surgery that will remove Bailey's port access, which I do agree is a good thing....But, we are not having it removed because chemotherapy was this HUGE success, and we are moving on with life...

We are getting it removed because the port access hardly ever worked...And because, our year 

long treatment plan is over.

The tumor is still there.  The tumor is still bigger than it was, when we began treatment a year ago.

Tomorrow...Bailey will begin a whole new course of treatment.  A fairly new type of oral chemotherapy that is supposed to work well with the type of tumor Bailey has...AND, 'NFers' tolerate it pretty well.

Afraid, Apprehensive, Discouraged, Nervous, Disheartened 

While I continue to feel these feelings today...I also feel HOPEFUL.

It's that HOPE, that keeps the 'Thriving' in me alive.  So even while those scary, negative feelings may try to consume me, (if I focus on them, that is) I can still focus on that hope, that I always carry with me...And as I focus on that hope...I can feel it growing bigger and BIGGER....Then suddenly, all those negative feelings disappear.

THRIVE ON!

Failure to THRIVE...I don't think so!

Rachel is my teenie weenie, ball of energy.  She was born full-term (late in fact) right after Thanksgiving in 2002.

Rachel was 'officially' diagnosed with Neurofibromatosis when she was 5.  This was after MY diagnosis and came when her pediatrician urged us to see an Ophthalmologist because of some severe crossing and "mysterious" markings on the iris of both of her eyes.

I knew before the the Ophthalmologist even said the word, that Rachel had NF.  But now - Finally - The pieces were coming together...And the fear of this dreaded disorder were coming full circle. 

During Rachel's MANY doctor visits, it was noted in charts, that Rachel's height and weight, were not even touching the height/weight ratio markers.  ONCE, Rachel hit the 5th percentile, but the next month, she was back down to the 2nd %.

Last month, during Rachel's 9 year old check up, her doctor said a phrase that I swear I thought I'd never hear....

"Failure to Thrive".  

I found it EXTREMELY ironic that this phrase was left floating in my head, after we left the doctor that day. "Failure to Thrive?"  Are you kidding me?  This goes against EVERYTHING I have been working for...Everything I had been imagining my life was about.

We were asked to come back in 3 months to do a medication check, and to also check Rachel's weight, to make sure we were heading in the right direction.

Today was that visit, and Rachel was down 1/2 of a pound.  That's not a lot of weight...But when you only weigh 41 pounds...It IS a lot!

That phrase came up again...."Failure to Thrive"....I don't like it.  I don't look at my daughter and see a child who isn't THRIVING.  She is happy, healthy, spunky, silly, energetic, social, fearless, tough, alert (I could go on and on) 

Do YOU accept labels?  I know sometimes a label can be a good thing, especially when it comes to education.  But what about a medical label?  I know for SURE, I don't like being known as "the woman with the bumps"....or "The woman with ALL those kids". (I've been called some other pretty bad things..But we'll keep this in the positive)

I don't like labels...and I refuse to wear them, or allow my children to wear them.  Bailey isn't known as "The one going through chemo"...Braden isn't known as "The kid who can never look you in the eye."..and Rachel FOR SURE won't be know as "The failure to thrive kid".

Labels limit you (Or CAN, if you allow them to)

So, while Rachel may live her life "off the charts"...We accept and embrace this as part of who she is....Definitely not WHAT she is.

THRIVE ON!

Rare Disease day

Today is Rare Disease Day!  

My goal is to continue to make more videos about what it's like living with Neurofibromatosis.

Why not challenge yourself today...Post a video, blog post or simply talk to someone about what it's like for you, living with a RARE Disorder!

It's "E.A.S.Y." to THRIVE

EDUCATE

Watch your ATTITUDE..Take ACTION

SHARE with others

YIELD to the possibility that you can be whoever you CHOOSE to be!

THRIVE ON!