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!

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.

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!

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

This Is Where We Are

One week ago today, my daughter Bailey was laying in a hospital bed, with a 104 degree fever and a ANC count of 1.  A "normal" ANC count is above 1600.  Bailey was SICK.  I was confused and scared and didn't know exactly what all these numbers meant.


The new chemotherapy that Bailey was switched to had severe side affects.  Since Bailey's tumor doubled in size with the previous chemotherapy treatment, her doctor decided to use Vinblastine...a "faster and possibly more effective treatment". 


With her blood counts going down, her risk of infection went up....And that's exactly what happened, while she was at camp.


A doctor explained chemotherapy to me in a really good way.  She said that  chemotherapy was a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets "tumor cells", but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. 


White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor  referred Bailey's low white blood cell count as neutropenia. 

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Neutropenia

Bailey was discharged from the hospital with a blood count of 102, which was a BIG improvement from where she started.  While it is still considered low, a rising count is a GOOD thing.

Now I find myself panicking wondering if her low energy is related to a low count again....Does she have a fever?  How can I let her go to CTF camp and be so far away from me?

I am torn between keeping her close to me and basically putting her in a bubble....Or just trusting that she needs this camp...She needs to be a kid...She needs to experience the world, not hooked up to port IV's.

I am having a tough time explaining to people how serious this really is.  Some people think that because Bailey was discharged, that she is "cured"....That God did a healing and she is fine now...And while I do believe that God definitely worked in this situation, Bailey is far from cured.

Since Bailey is having so many bad side affects from this chemo, the drs decided to hold off on chemo, until Bailey returns from camp....Then, they said, we will go "full force" attacking this brain tumor.

FULL FORCE scares me!  Wasn't that what we were doing, when she got so sick?  Isn't FULL FORCE what brought her to 104 degrees and 4 days in the hospital? 

This is why I have no answers when people ask, "what's next?"  

We live in our "today".  We enjoy the days that Bailey feels well enough to swim.  We THRIVE in our "now"....And pray for our tomorrow.

Thrive On!

More Low Blood Counts

I was SURE Bailey's counts would be higher today!

Saturday night, when I got the call from the camp Bailey was at, her blood count was at 1.  She had a 102 fever and was quickly hooked up to antibiotics and IV fluids....But they didn't help.  Sunday morning, I was called to come get Bailey from camp.  A friend from church came and picked up 4 of the kids, to make the drive a little easier.

When Rich and I finally got to the camp and saw Bailey....She didn't look sick to me.  I was shocked when I was told how sick she really was.

We were to go straight to the ER...But needed to drop Rich off with kids, so that I could just stay with Bailey for as long as it took to get her fever down, and her counts back up.

When we got to the ER, Bailey's temperature was 104.2...NOW, she looked sick.  I have NEVER seen any of my children with a fever that high.  Bailey, most certainly has never been THIS sick.

We were admitted Sunday night based on blood counts and fever.

Monday, Bailey was still running a 100-102 fever....but her counts were rising....Still extremely low....but headed in the right direction.

Tuesday she went ALL day, with no fever....She was FINALLY eating....and things were great!  Her counts increase from the previous day, and the Drs were sure that Wednesday, she would be able to go home...As long as counts continued to rise.

Wednesday morning, the doctors came in and told me her counts went way back down.

We have cultured her blood and can find no reasons why this is happening....No reasons for low blood pressure.

So we just stay here....Where Bailey can be monitored until her counts stabilize.

While extremely frustrated...We have faith that God heals!



            When you come to the end of your rope, tie a knot and hang on.  

~Franklin D. Roosevelt

Chemo and NF

All is well here--Considering all that's going on.  The only side affect from the Chemo seems to be exhaustion.   But Bailey is handling it like a champ!

This weekend we were playing at the park and it was like nothing was changed....Nothing was wrong.

We know however, that this is the calm before the storm.  We know that once the chemo builds up in Bailey's system, things will change.

So we focus on our good days....The days where Bailey feels like playing, instead of sleeping....and most importantly we keep up our spirits and believe that this road we are on, is a temporary one, that will lead us to a better place.

I have to say, I never imagined a life that included taking a child to chemotherapy.  I doubt that anyone could imagine it...or want to.  But it is true, that it affects everyone in the family...not just the one getting hooked up to the IV every week.

Our family has been turned upside down.  Everything now focuses around the weekly chemo treatments, and the side affects that come from that.

I find myself struggling to balance life, with 5 other children who need me just as much as Bailey does.  Some days this balance is exhausting...I don't feel like I'm doing enough.

Port Surgery and First day of Chemo

Blessings Come Through Raindrops

Today was harder than yesterday.  I think the reality was hard to avoid, when we actually got into our room, and had the IV fluids hooked up.

Bailey has done amazing with this whole process, and I am filled with so much pride.

On the way to the hospital this morning, we heard this amazing song by Laura Story called Blessings....

I am guilty of praising God during the good times, and when things are going along smoothly....But when things go wrong, and I struggle, I get angry.  I have asked God, why He just won't take the pain away.  Why does my daughter have to endure the complications of Neurofibromatosis?  Is He even listening to me, when I am on my knees, crying out to Him?

But what I am learning, especially while going through this, is that God blesses you, even through your tears.  I have seen so much good come from this scary time.  The love and support that our friends and family have shown is has been amazing!

Remember, the rains of life, will eventually bring flowers.

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.

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!