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!

Support Groups Rock!

Motivational Monday

Whether it's a mental condition or a physical condition, finding a group where you feel comfortable and safe is very important. When you find someone who shares the same condition as you, a bond begins to form.

I know for years, I felt like mine was the only family in the world affected by Neurofibromatosis. I almost felt like I had to hide the condition, because I knew if I didn't, I wouldn't be accepted.

Now that I have "come out of the closet" with my NF, I have opened myself up to a whole new world. I have met hundreds and hundreds of other families, who are struggling with the same issues.

I think groups like Facebook, MySpace, NiNG etc, are fabulous for connecting lost souls. People are desperate for that one thing that will link them to another person.

So, if you haven't already, join a group...there are thousands of groups that are already started. Or, you could start your own. I have created THIS GROUP on facebook, and also the NING GROUP - When you make connections with others dealing with the same issues, you feel less alone, or isolated. When a mental or physical condition is diagnosed, it can bring with it, feelings of depression, anger, fear etc...and having a group of people who understand, can make dealing with it, a little easier.

Not only does a support group help YOU deal with YOUR situation, in time, YOUR situation can help someone else. If you asked me 3 yrs ago, where I would be and what I would be doing with my life....It for sure would not include THRIVING with NEUROFIBROMATOSIS! I've come a long way, in accepting my condition. I'm so glad that Thriving with NF has taken off, and touched so many people!

Perhaps you are just finding out about NF, or learning about a new diagnoses in your child....(or yourself) I know, first hand the flood of emotions that come with that. You actually are dealing with a huge trauma. A "loss" of sorts. It's a loss of everything that you wish could be. The death of a dream. A support group can help you reel it back in, and help you hold on to those dreams.

How do you manage this diagnoses? How do you cope? What will my future be like? Well....What I have come to learn, is that I am NOT my diagnoses. My diagnoses, is NOT ME. It will not control me, or shape my future. But, I would not have believed this, without the support of those around me.

It may seem at surface level...that I am all about Neurofibromatosis, with T-shirt sales (fund raising for www.ctf.org), websites and blogs...but that would be wrong. What I am about is helping others see through their diagnoses, to something more....something bigger. Supporting and helping people not just LIVE.....but THRIVE with Neurofibromatosis.

God Bless