Thursday, January 24, 2013

Bailey Update!

I have the most amazing daughter!  She has gone through...and is currently going through so much...But she has never once complained.  I am so very proud of the young lady she is becoming!

Now - For an update.

I wish that I had better news...Or even just a hint of good.

Yesterday, we met with the Neuro-Oncology team. (Our BIG appnt is next Friday, but we had some medical concerns that needed to be addressed)  

Bailey's symptoms along with the fact that her brain tumors don't seem to be going anywhere, prompted a decision to take Bailey off her chemotherapy.

We had a feeling this was coming.  She has been on 4 different types of chemo, over the last 2 yrs...with no break.

The talk on the way to the hospital was how Bailey felt about this possible decision.  SHE was all for it.  Me on the other hand was scared to death to agree to do this....But would never voice this to my 'little girl'.

I hate the hospital.  I especially hate the 7th floor.  We've made that elevator ride a thousand times and the feeling never gets better.  Sometimes, Bailey and I close our eyes and pretend we are taking a ride on a glass elevator...You know...Like the one on Willy Wonka's Chocolate Factory....  WHERE DO YOU WANT TO GO, BAILEY...?

We checked in and waited for us to be called back to the exam room.  I hate waiting rooms too.  My eyes scan the seats that line the room....And stop at the few kids that seem WAY more sick than Bailey...And I start to feel a little guilty.

We are on the Cancer/Blood Disorders floor and as far as OUR "sickness" goes, we are pretty lucky.  I realize that we aren't dealing with the "C" word...But we belong on this floor just as much as the sweet little kids that are running around sporting bald heads....And this often scares me, more than I can say.

We finally make our way back to our room, after getting the routine weight, height and blood pressure check...And again wait.

Bailey and I laugh when we talk about the memories these exam room hold for us.  The last 2 yrs have been CRAZY.!   We have experienced being...SAD...HAPPY...DISAPPOINTED...ANGRY  --If these walls could talk, I am sure they would have the most amazingly emotional stories.

Our small talk was interrupted when the doctors come in.  We haven't seen them in almost 3 months.  It feels like an eternity has passed.

We weren't due to see these Drs, for another week...but this issue that Bailey has been experiencing needed to be addressed.  We talked about how Bailey has been feeling and what the new symptoms were...And the doctor told us that we needed to stop treatment.

STOP.  My heart sinks.

I knew this was coming...But it was like I wasn't ready to hear it.  It's different when it's ME talking about this possibility...But hearing Bailey's Drs say it, made me feel sick.

The "WHAT IFS" begin rolling around in my head.  "WHAT IF IT GROWS?"  "WHAT IF....."

What if....

I tried to hard to push these thoughts out my my mind....But I can't help it.

I hold Bailey's hand ... And we leap...Together.

"Thriving in Action"....I told Bailey.

Life holds endless "What ifs..."  And there comes a time, when you just have to do it anyway...Because- you never know, if YOUR "what if" will turn out to be something amazing!



  1. The courage and strength of your whole family is such an inspiration. Blessings and prayers for you all. ~RR

  2. So inspiring Kristi... X much love x i wear my band on my wrist with pride.. Supporting my 3yr old son and all other nf sufferers x keep thriving x

  3. Kristi thank you for helping me stay sane and strong and getting me through those long sleepless " What if..." nights when I am so scared for my son that I could scream. Your positive outlook are an inspiration for us to strive for.

  4. My thoughts are with you and your family and most of all Bailey. Hoping everything remains "stable".

  5. What a brave girl, and strong family, sending love.xx

  6. It is a miracle she is still alive my she live a long life.