Wednesday, July 9, 2014

We got to the hospital EARLY....I was still wiping the sleep out of my eyes during our drive.  A drive our family has made hundreds of times.   I'm amazed at how comfortable Bailey and I are....This trip used to bring so much anxiety....But now...It's no big deal.  Even when it SHOULD be.

Although we have gotten "STABLE" results from our 'every-three-month' MRI's and don't visit the 7th floor oncology doctors NEAR as much...We still have a lot issues.  Pain being our #1 concern.

Bailey's back is....Well, to put it bluntly, a mess.

2 years of chemotherapy has wreaked havoc on Bailey's bones....causing so many issues, that we leave our doctors with no real answers....No "fix".

Physical Therapy---6 different types of pain medications---Pain Patches---More therapy 

Finally, we were able to talk our doctor into doing something.....Steroid injections.  Not a permanent fix....But at least it was SOMETHING.

It's weird....Bailey is 18 years old now....All of the questions are being directed at her.  The questions that I am so used to answering....And letting go is hard for me.  She looks over at me - unsure - and still needing me - this brings me comfort...but, I know that she NEEDS to do some of this on her own now.

When our pain management doctor goes over our history...She asks us why Bailey's tumors haven't been considered for surgery....Bailey tells the Dr..."Surgery would kill me...and I kind of like living..."  

As she goes back for her injections....I find myself feeling so grateful for my brave girl.  Faced with so many complications and uncertainties....She pushes on.  She doesn't complain or feel sorry for herself.

After the procedure....We got a surprise -- The grand opening of Seacrest Studios in the hospital brought a flurry of famous people....Ryan Seacrest was the only person I really "knew"....The others ....I had to google when I got home.

Bailey begged to go meet these people....All I WANTED to do was get the heck out of the hospital....
Another lesson, taught by my daughter....This day wasn't about ME....

Lady Antebellum 

"Lexi" from Ant Farm

'Earth to Echo' Stars

Bailey is an amazing person.  She takes life on like no one I have ever known...even when she has every reason to just 'give up'....She goes beyond THRIVING with NF.....

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