Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

One Step Forward...Two Steps Back

Disappointment. It happens to everyone. Having Neurofibromatosis, I  have learned to prepare myself for disappointment. It's a horrible way to live, and I do try as much as possible to believe that good things are bound to happen, but the roller coaster life of having this disorder continues to break my heart, over and over.

The last time my daughter received chemotherapy was on July 6th.  Her doctors reduced the dose from 6 ml, to 4 ml and we were sure that Bailey would do well.

She left for camp the next day and things were good.

Until I got the call 2 days later.  Bailey spiraled.  Her blood count was hovering just above 1, and her fever was high....VERY high.

She spent 4 long days in the hospital and her blood count rose, but she has never completely recovered.  I never thought 4 mL of anything could be so damaging.

We were to get back on track last Wednesday....An MRI and this time 2 mL of chemo...But after Bailey's blood draw, everything was cancelled.  One step forward, two steps back, is the dance we are doing when it comes to Bailey.

No answers, just disappointment.

My mind is whirling...Wouldn't the MRI be necessary, EVEN more now, since she has been OFF chemo for a month?  Bailey's doctor assures me, that if SHE felt it was necessary, we would be doing chemo and MRI's.....NECESSARY?   I think a tumor that DOUBLES in size while ON chemo, qualifies as "necessary".

Leaving your child's fate in the hands of someone else is hard.   Trusting that THEY know what is best and going with that is not something I am good at.  

We left the hospital last week feeling uneasy.  Part of me wanted to run back in there and demand an MRI...demand some answers!  The other part of me wanted to leave the hospital and never return., because the pain of doing nothing, felt worse than the pain that therapy brings.

We have to continue to trust.  Trust in the Lord, and trust the hands of the doctors who really are giving Bailey the best.  We have to focus of Thriving....Because that's the only way Bailey is going to come out of this.

Thrive On!

Motivational Monday

STRENGTH

by Sylvia Kelly

It takes strength to be certain,

It take courage to have doubts.

It takes strength to fit in,

and courage to stand out.

It takes strength to share a friend's pain

It take courage to feel your own pain.

It takes strength to hide your own pain,

and courage to show it and deal with it.

It takes strength to stand guard,

It takes courage to let down your guard.

It takes strength to conquer,

And Courage to surrender.

I just loved this. When I began trying to come up with something to write this morning, I found it very tough. The kids were loud and distracting me.....Every 5 seconds it was "mommy" this or "mommy" that......

I made a pancake breakfast, with hot maple syrup*, in hopes that they would go outside afterwards and let mommy work---Yeah Right!

I began to think about this week...and what it holds for our in terms of being courageous and strong. I am so amazed with the amount of courage my children show me.....oftentimes, it is THEM, who give ME the courage to face what is in front of me.

To Bailey: You are so strong....so brave...so courageous! I know that sometimes what is happening is scary....But I want you to know, I will ALWAYS be there for you!

XXX