Thursday, May 20, 2010

The Tangled Web of Living with NF

When I finally lay my head down at night, in complete exhaustion from the day, my mind drifts off in many directions. I often worry about tomorrow, and stress about yesterday.

I couldn't care less about the tumors multiplying on my own body, but the ones attacking my oldest child spin me into a web of guilt and sadness.

My children, all six of them bless my life, and I do not regret choosing to be a mother. What I hate is that Neurofibromatosis has its hand in my life at their lives.

The Dr. is calling the tumors Acoustic Neuromas, or Meningiomas--he's not sure which they are. But they are there. Last month we knew about the one, this week, we learn there is another, slowly growing on the left side.

Bi--lateral tumors? With NF1? This web is pulling me in deeper and deeper. It's true that NO ONE can predict how NF will affect their life, and that Bailey will undoubtedly come through this, just as strong, if not stronger than when she went into it, but I'm scared.

It's easy to wear a 'THRIVING' spirit on your sleeve, but when you dig deep inside a person...That's when you truly see what they are made of. Am I strong enough to not only hold Bailey up while she undergoes major brain surgery, but also hold up myself and the other kids?

Am I just a woman who is full of talk, but very weak on the inside? This "test" is bringing me to the point where I am questioning myself...because all I want to do is break down and cry. Cry for my baby who has to deal with scalpels and saws and long recoveries and permanent hearing loss.

Are there worse things? Sure there are. But all I want to do is pull my little girl in and hide her from the cruelty of NF. But then I would be falling into what my mother did with me....Hiding in her own guilt and anger, caused me to hide from my own issues for 33 yrs.

Memories of my childhood, stop me from repeating the cycle, but I definitely understand why my mother would want to hide from NF. But like ALL trouble that you try to avoid, it will always find a way to your doorstep.

Guess it's time I opened the door and face this head on. (pun intended)


  1. Generally there is a 1% chance for a person with NF1 to have a M or an AN. NIH was not willing to tell me that my M was related to NF1. But, since it is generally a middle aged woman's tumor and mine was diagnosed when I was 35 I believe there is a link.

  2. Kristi,

    There is hope for your daughter to be able to keep her hearing. There are drug trials in progress right now on several medications. Acoustic Neuromas (Vestibular Schwannomas) are usually slow growing and don't have to be removed immediately. Investigate the options available. If the point comes where she does need surgery, I would strongly encourage you to find a surgeon with plenty of NF2 experience. NF2 VSs are different than unilateral VSs. They're harder to remove and they frequently grow back. I live in VA but have traveled to CA for surgical care 3 times for my two children with NF2. It's expensive, but worth every penny. We go to House Ear Clinic in Los Angeles when it's VS surgery time. They can sometimes save the hearing at least for awhile, and also preserve facial nerve function. With all the brain tumors your children have, I wonder if they have missed on the DX. NF1 can cause brain tumors, but your family is certainly atypical in that area. Have they actually found the genetic defect for type 1 on blood work for you?

  3. Kathie BlanchfieldMay 21, 2010 at 7:11 AM

    Kristi you are am amazing, beautiful woman. You give so much to anyone around you. My heart breaks and I cried reading this. As Mother's all we want is to protect our babies. You are doing all you can and she knows you love her so much. She is such a brave little girl and she gets that from you. We all will pray for your family during this time. You need some time for yourself as well to deal. Please make sure you take care of yourself during all this. Hugs to you hun.

  4. Kristi,
    I don't know if you know that "Glomus Tumors" can also affect our hearing.