One of the chemotherapy drugs Rylie
will be on is Vincristine. Vincristine has a potential risk of hearing loss. In
order to track how her hearing is doing throughout treatment Rylie was sent in
for a hearing test, an Audiogram. This gives the medical staff a better
understanding of where Rylie’s hearing is now then they will be able to track
and monitor her a few times throughout this next year to see if there are any
changes in her hearing.
Before taking Rylie up to Primary
Children's for her hearing test mommy went in for a quick eye exam to get her
contacts renewed. What was to be a standard check up turned into a scary day.
After running a few of the standard eye tests my optometrist became concerned
with the swelling in my optic nerves. After reviewing the possibilities if what
the swelling could mean we got worried... Swelling in the optic nerve is what
led us to find Rylie's tumor. To say there was immediate panic is an under
statement. After discussing Rylie's current situation with the optometrist he
went into complete panic mode. I was told to call my husband and immediate head
to the Moran Eye Center for additional testing and if there were no
appointments open to head to the emergency room. The concern was I too had a
tumor. I don't think I have ever been so scared and completely panicked in my
entire life. How was this happening? How are both my daughter and I going to get
through this… at the same time? I immediately started worrying that I wouldn't
be able to be with my baby when she needed me most and then a harsh reality set
in. If I had a tumor it meant Rylie's NF was genetically passed down from me. I
think that broke my heart more than anything. I felt so responsible. After
speaking to Rylie’s doctors they felt there was no need for genetic testing and
believed Rylie's NF to be a spontaneous mutation but if I had a tumor we had
our answer... She got NF from me. I was literally torn up inside. That entire time
all that was going through my head was this is my fault. My baby is going to
have to go through hell because of me! Brett was heart broken and completely
stressed out but he did great at trying to keep me calm. After calling our
families we were able to get Brett's mom and sister to meet us up at the
hospital to take Rylie to her hearing test so Brett could take me to see an
ophthalmologist for a second opinion. They literally rescued us from a downward
spiral. Having someone there to hug you and tell you everything will be okay is
literally invaluable. We said it before but we will say it again- We Have the
best family in the world!
Brett's sister took Rylie into her
hearing test in which she passed with flying colors! They said she was a little
rock star! While Rylie was at her
hearing test I was taken to IHC Salt Lake Clinic to be checked out. Thank god
for Dr. Harrie! That man really knows his stuff! His office seen me immediately,
no questions asked and they were so wonderful to ease our worries while they
took a look at my eyes. After a few more eye tests and an ultrasound Dr. Harrie
assured us I did NOT have a tumor. Although my optic nerves were swollen he
felt it was nothing to worry about and the swelling and headaches could be contributed
to the stress we have been under lately. It was such a relief to hear those
words. For me to know I was going to be able me go focus all my attention on my
baby was the biggest blessing of all but knowing I was okay was a weight lifted
off all of our shoulders!
Thank you to all of our family and
friends for being there for us last Friday. You all never cease to amaze us
with all of your love and support- we will forever be grateful to all of you!
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