others. Too many of my online deaf-blind friends seem to be
suffering lately. Stability doesn't come easily for us, I guess.
I've know Holly for three years. She has NF2. She is about to
head into her third surgery since we've been friends. Of course
there were many others before then.
Below are two blogs about Holly and her upcoming surgery. You
can read more about Holly at her blog site: www.hollyalonzo.com
Please keep her in your thoughts and prayers.
From Holly Alonzo Having surgery
I have a tumor in my neck at the C3-4 level. This tumor is
affecting my grip in my right hand, odd sensations in a few
fingers, pain and weakness in my arms, and causing my neck to
hurt. I also have random twitching all over my body, but we
aren't sure if this is due to the tumor or a problem called
Because of all these symptoms, the neurosurgeon at the NIH has
recommended to remove the neck tumor. I am not due to go back to
the NIH for follow up evaluation until May. He wants me to have
it removed before then. So the scheduling team was notified, and
now I'm getting ready to go in for surgery yet again.
I will be leaving for Maryland on Wednesday. Surgery is scheduled
for Friday morning (March 4). They aren't expecting any problem
and I should only have to be in the hospital for a week.
I hope the surgery and recovery isn't too hard on me. I know I
can handle it, I'm just not looking forward to it.
I will have Edward keep people updated through this blog. Wish me
From Holly Alonzo Explaining Surgery to a Child
Isaiah is a very bright child. He is now 3 and a half years old.
His vocabulary is outstanding and he picks up everything.
One day a few weeks ago, I commented that my arms hurt. When I
play with him now, I can't do it for as long. He likes to jump
and have me pick him up and help him do flips. I tell him he is
getting heavy and my arms are tired. Well, when I said they were
hurting he wanted to know why. I told him I have a tumor in my
neck making them hurt and be tired. He doesn't know what a tumor
is, obviously, but I want to be honest with him. I told him the
doctor was going to fix it. That satisfied him to the time being.
Now, he is wanting to know why I am going to the doctor. I told
him that I was going to have to have a surgery on my neck. He
doesn't know what "surgery" is either. So he asked why. I tried
to tell him, "Remember when I said there was a tumor in my neck
making my arms tired? Well the doctor is going to fix it now.
He's going to take it out." He wanted to know why the doctor
couldn't fix it with a needle.. Uh... Now what do I tell him? I
tried, "Because they have to cut it open." He asked why, of
course... That's a 3 year olds favorite word. "Because they have
to get inside to get the tumor out. They will cut it out and make
me better again."
I guess that answer satisfied him, but Edward noticed I was
having a hard time thinking of what to tell him. I want to be
honest with him, but he's too young to understand. I'm tried to
think of the most basic way to explain to him. I don't want him
to be worried about it though. Hopefully I won't have to try to
explain this surgery business too often. I need a break from
surgeries for a while. Let's cross our fingers that this is the
last one I'll be needing for several years.