Words cannot express how truly proud I am of my oldest daughter. Bailey was diagnosed with a tumor called an Acustic Neuroma. This tumor is on the right side of Bailey's auditory nerve....This nerve also controls the muscles on the right side of the face.
For the last 7 months, we have gone through somewhat of a roller coaster with what would be the best treatment and have been left feeling extremely helpless.
The doctors in Spokane were ready to slice and dice and remove the tumor...but the doctors in in Denver, are taking a conservative route, which makes me wonder who is "right".
Bailey had her MRI this week, which showed changes and growth of the tumor. I expected these changes, but hearing them made me sick. Bailey has also been complaining about dizziness and hearing loss ( a sign that this tumor is pressing on the nerve )
We have a complete hearing test scheduled in which Bailey tells me she knows she will fail. She has lost almost all hearing in her right ear and when you add the dizziness to that, we were sent up to the Oncology and blood disorder floor, to meet with Dr. Rush and her surgical team.
Riding the elevator to the cancer ward always sends me into feelings that both overwhelm me and confuse me. NF is NOT cancer. Bailey's tumor is NOT malignant. But the doctors are going to treat it, as if it is.
The surgical team explained to me again, how complicated this type of tumor could be...and how surgery could do permanent damage that would be devastating to a young, growing teenager.
If the hearing test confirms hearing has been affected (which we already know that it has) Bailey will be started on chemotherapy.
I saw Bailey cringe when the doctor mentioned this. While we were waiting to see the doctor, we met a family who was walking around with their 2 yr old daughter. The little girl was so cute and sported a bald head....and was very obviously going through her battle with cancer.
As we finished up with the doctor, Bailey asked me about chemo and told me she didn't want it...didn't want to lose her hair....and asked why the doctors just couldn't cut the tumor out. I was confused too. This was the first time chemo had been brought up for Bailey...so why now?
This stupid NF. I'm angry at it. How dare it try to beat us! While I am angry at NF, I am also thankful (weird I know) I am thankful because I know that there are parents out there who are dealing with more severe issues with their children.
As we were walking out of the hospital, Bailey says to me...."As much as I don't want chemo, or surgery....I know that I will be okay." She is so amazing. I know she is scared about all that is happening, but her strength shines through...and it is her strength that will pull her through this.
If that doesn't make you want to THRIVE, I don't know what will.