Love,
Mom
"After reflecting on
last year’s events, I learned something huge. I began to see how God’s plan is
interwoven…with timing, transformation, and what I call divine appointments. To
try to keep this as short as possible I will be skipping much of the story, but
focusing on the interwoven points.
In January, my doctors
became weary of my mysterious hypertension and began searching for the cause. We
found Renal Artery Stenosis was causing this hypertension. This caused concern,
but so much confusion as to how to treat it. As we were seeking advice from
others outside of NIH, it created a new circle of doctors in Indiana who
ultimately could focus on the kidneys and heart with the direction of NIH. I was diagnosed with Congestive Heart Failure
at the beginning of March…no one saw this coming! During this process, I was in
school and involved with Campus Crusade for Christ. When I heard about the
Spring Break Outreach trip to Panama City Beach, Florida, I had started praying
about whether that was something I should join.
God was tugging on my heartstrings, and I knew I needed to go to Panama
City Beach with Ball State Cru. This conference taught me about sharing God’s
word, and the importance of drawing nearer to God. During that week, my
Congestive Heart Failure worsened leaving me struggling to breath. NIH flew me
directly from Florida to them and immediately into the ICU. The timing of when this
happened was not by chance. (It just so happened that…) My mom’s boss was
vacationing in Florida only a few miles away, so when I had no convenient way, he
helped get needed medication to me while down there and transportation to the
airport. I spent the rest of the month in the ICU. NIH knew that I needed to
get back to the Indiana doctors for my heart and kidneys, but they had to
stabilize me first. Finding the doctors in Indiana prior to this was not by
chance. As soon as I got in their care, my
renal arteries (which were 90% blocked) were ballooned, and BP stabilized thereby
giving my heart a chance to not work as hard. Another key point during my ICU
stay at NIH was the introduction of a document called “Voicing my Choices.”
This document gave me a say about my comfort, my care, and my funeral if it
came to this. I’ll get back to this in a minute. In April, I was tired of my
body failing, and I knew that this was only going to get worse and worse. So
with more tugs on my heartstrings, I made the decision to proceed with the
Haplo-Transplant. This all seemed like it was happening so fast.
I began to think about
my family, my friends, and the possibility of meeting my Creator in Heaven. I
had to prepare for the possibility of death, and I was brought to the situation
of my older sister. In preparation, I
was in conversations with God. I was seeking His peace. At SERVE in June,
during one of the evening “Experiences,” I was prayed for and felt encouraged.
I found the peace that passes all understanding. The next week I was at NIH
starting the pre-transplant qualifying tests. Again, the timing of prayer was
not by chance. God had prepared me. My family had already set aside 2 weeks for
a summer vacation meaning my brother, Tyler, had his time off from work which
was God’s perfect timing for donating his bone marrow while I was starting
chemo. On July 25, I had my life-saving first of its exact kind of transplant. This
was the first Haplo-transplant for DOCK8 in the US. They call me a pioneer. Its
success has paved the way for the next one in March. I have been blessed with
my 14-yr relationship with NIH. This relationship is not by chance. As they
have watched me grow up and know who I am and what I believe, my doctors trust
me to be a spokesperson for DOCK8; and in a way God has made me an ambassador
of hope for my fellow DOCK8 family. I get to meet DOCK8 patients and share
encouragement, hope, God’s faithfulness, and my journey. In reflection of this, I was thinking about
how my sister Kelsey and I shared this DOCK8 disease. It was comforting for us
to share this disease together. When Kelsey lost her DOCK8 battle, I found this
new emptiness. I knew that I wanted to meet others with DOCK8. This began a new
path of reaching out and finding others with DOCK8. A path God has blessed. My
mom and I had an unexpected trip to NIH last Thursday evening to Friday
evening. I didn’t want to go. It was an inconvenience. This short 24-hr trip
was a Godsend though. I got a skin biopsy, then I was blessed by spending the
rest of the day talking with three DOCK8 patients that I found out were there.
I am the only DOCK8 person whom each of them has met. One will be the second
Haplo-transplant for DOCK8 in March. She was so happy to meet me and ask
questions, as I was elated to answer her questions and meet her. What was most
exciting was talking with the family from Iran. We had briefly stuck our heads
in earlier this month to say, “Hi,” but without a translator it was tough, but
they remembered us. God’s timing was yet again perfect, for a translator of
Farsi had conveniently met us at the door of the Iranian girl. We answered so many questions. They were so
open. We took photos, shared emails, and developed relationships. This was
amazing!
Back to Voicing My Choices, this
document has led to an article in the New York Times. It has also led to my
sharing more about this document to other DOCK8 patients. In order for the
writer of the story to get a grip on our family she watched the story I did at
Union Chapel October 13, 2013. She shared this with her editor and team. They
want to expand the story, so another story is in the making this week as a videographer
comes from NY to Muncie to follow us around for 5 days. God’s divine
appointments…aren’t they miraculous? His plan is an extravagant weave which
interlaces my life in ways I can’t comprehend. By honoring God in all things,
He makes the impossible possible! Where does this lead me next? I cannot wait
to see. Luke 1:37 says, “For with God, nothing shall be impossible.” I truly
believe that!"
