Friday, November 16, 2012

Risky Business

"Too Risky" was Dr. Handlers words as he looked at Bailey's most resent MRI.  Surgery COULD happen, if we wanted all the complications and side affects...But it is NOT recommended at this time. And if it WAS done...couldn't guarantee to take away Bailey's symptoms.

I was sort of relieved....and sort of disappointed to hear this news.

Bailey suffers from Neurofibromatosis type 1....But she has an unusual case because she also has Acoustic Neuromas.  Tumors of the auditory nerve that are more common with Neurofibromatosis type 2 (a similar disorder) 

There are very few people living with NF1 that also have NF2 tumors.  I have met MANY people who claim to have BOTH NF1 and NF2, but do not actually meet the criteria for a TRUE diagnosis.

For a diagnosis of NF2, the patient MUST HAVE Bilateral Acoustic Neuromas, 
as pictured in the above still, taken from Bailey's most current MRI.  

We scan Bailey every 3 months to check on the above tumors....
And the MOST DANGEROUS tumor that is located on the Corpus Callosum: 

Bailey is taking 5-7mg of Chemotherapy and continues to THRIVE, with her positive attitude.  Her symptoms vary from day to day, but generally speaking, she is doing well!

2 wks ago, we started Lipitor, due to the side affects of chemo...making Bailey's cholesterol sky-rocket.

Thank you for all your prayers
One Day at a Time!

Thrive On!


  1. Could I suggest maybe using fish oil or a new partial fish oil based drug for the high cholestreol ( there is a fda approved cholesteroel drug with fish oil i forgotten the name). I do not know if this disease is related to chemo or nf by my dad with nf had diabetes develop during his lung cancer chemotherapy ( sadly he died of cancer not nf related but asbestos) so please watch out for that so it does not happen to your daughter. I have symptoms of a similar disease called tuberous sclerosis ie a few white spots and angiofibromas in addition to my own nf1 case. I do think it is possible for a person to have both nf1 and nf2 but qiute rare I asked an nf doctor at an nf event out here in california that question he said he met a single person who that happened to.

  2. Bailey's cholesterol is directly related to chemo...which is what I stated in my post. Bailey is closely monitored by her oncology team

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