Monday, December 19, 2011

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  
Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's
 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)
Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.
But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...
She has a tumor that went from "nothing" "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.



  1. ....Thank you for sharing the "simple explanation" of chemo for an NF tumor!

    Like many people, my understanding was that chemo attacks fast-growing cancer cells (which, effectively shrinks cancer tumors). So, my question is, is the chemo in Bailey's regimine formulated to attack tumors, in general, as well?

    And, part and parcel to reacting to bad news is to have a positive outlook which is evident in your last statement: "I know that I am not the one in control of any of this. My faith and attitude are the only things that I CAN control. All I can do is trust and believe that whatever the results are...We can get through and deal with them." I may have to borrow it for my next update detailing my chemo treatments for breast cancer.

    Susan Luttrell in SC (mom of Shannon - NF1

    PS: I wasn't sure which "profile" to use so opted for "Anonymous." ":o)

  2. I am too a mother of a child 14 almost 15 in a few months that is also on the chemotherapy.Suffering from the terrible thing they call NF2 . She has practically drew away from society. I know your thoughts and your pain. I try to do so much for her .But it harder when the funds aren't here . Hard enough to keep a roof over her head . She has over 50 tumors in her brain and spine and The only thing keeping them stable is the chemotherapy It suxs too . She is not liking it she is sick and there seems to be no real change and we have been on it for about 9 months too. My faith is strong and I feel as if it will be ok I have stopped looking for supporters there are none . I have stopped trying to raise money for her because getting nothing seems to worry me more. I just take it one day at a time . When the Dr, visits come I have been blessed to get there so far . Although I did cancel one because My car had blown up "Motor that is } I just let it do what ever I can do . I hope that things will get better . I am praying for you all as well as my own. I just like you never thought that I would experience anything like this , I have 3 older children they are all healthy and the one that is sick is my baby. My other children are moved out to and she is alone more which puts more stain on me because if i take time for my self then i feel I neglect her.. Talk to me anytime..

  3. Hi Kristi
    Meg has been on her chemo now since Aug 2011. She has Nf 1, dealing with a tumour on her hypothalamus, non cancerous, surgery is not a option. She has had pneumonia,and a set of low blood counts. Not so bad I guess could be worse. We still have alot of treatments left. But as most we take a day at a time and worry when we need too. Take care Merry Christmas and Happy New Year!!


  4. Came across your blog in the bloggy moms website. I will pray for healing and good news for you.

    I'm a new blog follower.


  5. Thanks for sharing Kristy. You and your family are doing such a great job raising the awareness for neurofibromatosis in the US. I love you.
    I wish I had your success here in the UK.
    Happy New Year

  6. I hope all goes well. Sadly I met a women at the nf lovastatin study at UCLA whose sister had nf like us and died from a tumor in almost the same area.We will pray for your daughter. Ps the lovastatin did not work.