What Low Counts Look Like...

We've been doing chemo for almost a year now and have gotten used to the routine:  

Chemo on Fridays

Feel Good Saturday

Feel Like Crap Sunday, Monday, Tuesday, Wednesday

Start Feeling Better on Thursday

Then...

Start it ALL OVER AGAIN....

Low Blood Counts or "Neutropenia" - Means the neurtrophils or white blood cells are abnormally low.   Neutrophils are white blood cells produced in the bone marrow and comprise approximately 60% of the blood.

When receiving chemo, these levels are checked constantly.

I can tell when Bailey's counts are getting really low...

And sure enough, the blood test showed this on Friday.

Signs of Low Counts

*Extreme Fatigue

*Weak and Short of Breath

*Dizziness

*Sometimes Fever

*Pale Look to the Face

When Bailey got her blood taken, it was very "runny" and thin...She bled A LOT during accessing...It was then that I knew, even before the results came back, that her counts were going to be low.

But...They weren't low enough to cancel chemo.  There is a range the doctors follow and Bailey didn't quite fall below that line.  (I almost wish she had...just so she can get a chance to recover from this nasty stuff)

We have another month round of chemo...Then we will stop, and monitor Bailey's tumors every 3 months.  

Bailey says she's excited to get her port removed and not have to deal with all these appnts.  I have to admit, I'm excited about that part too.

Even When We're Tired....Even When We Don't Feel Well....

THRIVE ON!

Crazy Hair Day!

It's Spirit Week at the kids' school - and today was the BEST day of all - CRAZY HAIR DAY!!  I spent the morning getting the kids gelled-up and pony-tailed while also keeping an eye on the time...'Cuz today is also yet another 'Chemo Day'.

My mind was split, focusing on the school kids, who were so excited to show off their crazy look, and Bailey who was lathering up her chest in Lidocaine. In the few free seconds I had, my mind found itself returning back to my own 6th grade 'Spirit Week'.

I remembered doing my own hair for "Crazy Hair Day." Bows, gel, braids, and even more gel. It was a pretty awesome sight, let me tell you!  That is - until I got to school.  

As I got out of my stepmothers car and slammed the door I scanned the mass of kids.  NO ONE had "Crazy Hair", but they WERE wearing all their clothes backwards!  I reached back for the door of the car, but it wasn't there. All I could see were tail lights, 

seemingly laughing at me as they glimmered in the distance!

I was STUCK!

I raced to the bathroom and looked into the mirror, trying to come up with SOME kind of solution to my dilemma.  I bit my lower lip  and squinted my eyes...A-HA!

I pulled my arms inside of my shirt, and turned it around. The tag immediately started bothering me, so I ripped it off.  

 

I looked at my reflection, declaring with confidence

"I AM the true definition of Backwards Day,"

When I got made fun of for Crazy Hair day being TOMORROW, not TODAY....I just laughed, and said, "I know, DUH, it's backwards day, and I decided to do things BACKWARDS!"

Today - I constantly find myself in situations, where I have to modify how I look at things - and how I decide to react to them.

A lot of people think I'm a bit backwards to declare I'm Thriving with NF. That's OK. At least they haven't said anything about my hair! :)

 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.

Urologist. AGAIN!

This has nothing to do with Neurofibromatosis.  Just a fair warning.  But it DOES have to do with our fight for proper medical care.  Sometimes, I wonder with some of the medical care our family has gotten, if the doctors are just tired of hearing "Hopkins"...That is not to say that we haven't received some great care, but there are times, when I just wish I had gone to college to be a doctor.  I would definitely treat people with more care and respect than I have gotten.

My 11 yr old daughter is being seen at the Children's Hospital Urology clinic....AGAIN.  This poor girl has battled UTI's since she was 4 yrs old.  Quite exhausting.  For HER and for ME.  The specialists can't seem to figure out why the infections keep happening, leaving all of us frustrated.  At one point my daughter begged me...."Isn't there some kind of surgery, to fix me?"

My heart breaks for her.  She knows she is different....She knows the doctors can't figure out why, and she is as desperate as I am, to find a "cure".

Riley has taken countless bottles of antibiotics, and has taken part it NUMEROUS urological tests. None of which have pinpointed the cause of the UTI's.

My daughter is now on "prophylactic antibiotics" and has been for the last few yrs.  But we still have issues.  We seem to have exhausted treatment, leaving the doctors and our family wondering what's next.

We have had to fight for every test, though.  I feel like I have become a professional when it comes to going into the doctors office, and pushing them to give us full care.  I get so sick and tired of hearing the "Oh it's nothing." or "Let's just give this a few months."  I WANT TREATMENT NOW!

I am the one who asks, "What's next?"  While the doctors are ready to put Riley's chart in a box and "let her grow out of it".

It takes effort to get what you want and need...Sometimes, it takes going to a different specialist...One that WILL go the extra mile, to help you figure out the answers.  I've been learning this...And RE-Learning this....I AM THE ONE IN CHARGE---NOT THE DOCTOR!  The doc just gets to be the one who follows through with the proper referrals and/or treatments.

It's definitely been a hard lesson for me.  I am the type of person who HATES confrontation....One who never questions anything!  So, when it comes to standing up to a person who has 15+ yrs of College, and degrees on the wall....WHO AM I?

I am a PERSON!  I MATTER!  MY CHILDREN MATTER!


Thrive On!

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!