Sawyer has a procedure tomorrow at CHKD.
They are doing a test that will push dye through a catheter in order to fill his
bladder. This test will help determine whether or not his transplanted ureter
from the kidney is functioning properly at the point where it is attached to
his bladder.
Since Sawyer's kidney transplant, he has been hospitalized twice with kidney infections. His doctor suspects there may be a back-flow in the ureter that is causing the infections. We hope they find no issues and that Sawyer has no more kidney infections.
Sawyer is anxious tonight about the
procedure. Please pray that he will experience a great measure of peace and for good results tomorrow.
Sawyer in a private meeting with Mike
Griffin, former New York Yankee's pitcher, and Trayvon Robinson, outfielder (LF)
for the Norfolk Tides. Hours after their
meeting, Trayvon hit the game winning home run.
I begged God to not
let it happen. Every day and all through
the day since we first learned Sawyer was on the path to kidney
transplantation, I prayed fervently to the Lord asking for His intervention and
healing for my boy so he would not have to go through the surgery.
The night before
surgery was particularly hard as feelings of desperation took over. In tears and prostrate on the bathroom floor,
I cried out to God asking him to spare Karen and Sawyer from what would take
place within hours. I would do anything
short of dishonoring Him to spare them.
However, the reality was setting in that there was nothing more to do
except to continue trusting God in this dark place.
Today is the one
year anniversary of Sawyer's kidney transplant…. New Life Day! Although my prayers were not answered the way
I wanted, there is no doubt that God heard our cries. He has watched over us and He has helped
us.
Getting another bucket of love from CHKD today
This posting could
become a book if we shared all the times we have recognized His intervention in
our lives since this journey began. No
book writing today, but I will say that God, on most occasions, has revealed Himself to us through the love,
kindness, mercy, provision and support of others.
Karen and I have
been blown away by God working through the hearts of so many people… family,
friends and even people we have never met.
They have fed us, cleaned our home, sent hundreds of cards and letters,
worked in our yard (please come again soon), cried with us, helped us to make
decisions, prayed for us and with us and even encouraged thousands (literally)
of others across the world to pray, given many gifts including financial gifts,
cared for our children… this list could go on and on. We even had over a dozen people offer to
donate their kidney to Sawyer.
As much as I tried
to pray us out of suffering, God in His infinite wisdom allowed it to happen,
but He did not abandon us in it. We
cried out to Him and He answered.
Sawyer has a long
road ahead as we navigate through his undiagnosed genetic syndrome. However, we are grateful to reach this mile
marker today. Thank you for standing
with us and we cherish your prayers.
1 I lift up my eyes to the mountains— where does my help come from? 2 My help comes from the Lord, the Maker of heaven and earth. Psalm 121:1-2
Sawyer had to go to CHKD today because he spiked a fever. The tests showed his kidney is fine, but his white blood cell count is low. He most likely has a virus. This is definitely the [much] lesser of the two evils and the good news is he does not have to be admitted into the hospital. Sawyer gives a lot of blood samples.His demeanor is much better now when the blood is drawn because his steroid dose has been dramatically reduced. Today he kept an exceptionally brave face while they were drawing the blood. When he got home from the hospital he showed me his band-aid and said, "Dad, I didn't cry. I didn't even need juice." There was a long pause. I thought he was done. Then he said in a matter-of-fact tone, "God helped me. God is the best." Sawyer does not make declarations like this very often. So, it caught me off guard. We are grateful Sawyer recognized God's grace and mercy in that moment.
Sawyer placed this
picture on my desk today. I thought it
was a picture of an alien monkey. Later
on, he dropped by my office to make sure I got the picture and explained that
it was a self portrait. He pointed out
his g-tube, belly button, and scar from his transplant.
Sawyer's new (40+ yr
old) kidney is still performing well and staying healthy. He was in the hospital for a few days in
November because of a suspected staph infection, but other than that, he gets a
good break between kidney clinic visits.
He has been bothered
lately with pain issues especially in
his hips, legs and feet. Part of his genetic
syndrome has impacted his bones with mild dysplasia. One specialist suspects arthritis, probably
triggered by the dysplasia. Sawyer will
have an MRI later this month to get more answers. He has also started some physical therapy.
Sawyer's genetic
syndrome is still undiagnosed. All of
the testing (and it was a lot) has come up short. Sawyer has literally become a
poster child for kids with difficult diagnoses of genetic syndromes.
One of his
geneticists has found a new track to explore.
He knew of a group in France that could possibly help, but the distance
creates several insurmountable hurdles.
He brought Sawyer's condition to the attention of a group at Duke
University. They have now invited Sawyer
to be a part of their research.
Duke is
investigating the possibilities that Sawyer's geneticist has been
considering. If this becomes another
dead end, Duke will do full genome testing.
All of this will happen without us incurring any of the costs because
this is part of their research program (Woohoo!!). It would be great to get some answers to what
has plagued Sawyer, especially if it will help him in the future.
Now that Sawyer has a functioning kidney, he's starting to grow again.
Sawyer is a tough
little guy. We know he struggles more
than what he communicates to us. In the
last few weeks, he has had a constant headache. We thought it was related to
his blood pressure because it has been
creeping up again. An additional
medicine was prescribed, which helped with the pressure, but not the headache. So, the docs are currently working to figure
this one out.
Thank you for the
continued prayers and encouragement. So
many people still inquire and reach out to us to let us know they are
praying. We are so grateful!
The name Benjamin
means "son of my right hand".
It's obvious that God knew Ben's name before time began because this is
the perfect name for Ben.
Ben is my
"go-to" guy, my "right hand" man. Regardless of the project before me, Ben is
always ready to help. Ben will get up
before dawn to start a job and not stop until the job is finished even if it continues well into the night. He is the first one to volunteer to help others on a
project. Friends and family recruit Ben
for help all of the time because they know he gets the job done!
Ben loves God, he is
a loyal friend, and has a great sense of humor. Our greatest strength is often our greatest
weakness. So, Ben's humor often
manifests itself in the form of teasing, which sends him to bed first on many
nights.
I love Ben and I'm
so grateful he is my son… my right hand! Happy Birthday Ben!!
Last week, Sawyer
finished round two of his IV therapy at CHKD to help fight his newest
challenger, the BK Virus. Each therapy session lasts about 7 hours, but
Sawyer tolerated it much better this time.
The good news is
that the first round of therapy landed a few punches on the virus. The levels of the virus in his system are reducing. It's not a knock out, but we
are in this fight!
The not-so-good news
is that the virus has made its way into Sawyer's blood. Although we were hoping it would not, our
doctor was not surprised given the high level of the virus in his urine.
Thanks for the
continued prayer! This puts you
ringside for the knock out of BK in the near future.
A couple of months ago, two volunteers from the Make A Wish Foundation of VA, came by to
interview Sawyer. After asking him many
questions about his favorite things, they ended their interview by asking him
for his wish. Sawyer responded,
"I
want to have pizza with Mickey at Donald's house."
Sawyer is getting his wish! Make A Wish is sending Sawyer to Florida to
have pizza with Mickey! They are also allowing the WHOLE family to tag along
and spend a week at Make A Wish Village with passes to all of the Disney Parks,
Sea World, and Universal Orlando Resort Park!!
This is an ALL expense paid trip by Make A Wish!!!
Sawyer was giddy when he found out that
his wish would be granted. The two
volunteers who interviewed him, David and Katie, recently came by to celebrate
Sawyer and his wish. They brought his
favorite cake and snacks (Doritos and chocolate milk… of course!).
It was the coolest party. David and Katie shared all of the details
regarding the upcoming trip, especially the reservation for a meal with Mickey.
They also brought many gifts for Sawyer including toys and games for the plane
trip and a Make A Wish t-shirt. Sawyer
slept in the t-shirt that night and it's been one of his favorites since that
day.
We have been blown away by the thought of
this incredible blessing. It's such a
big deal for our family that I don’t
think we will believe it is really happening until we get there. Wow!
Sawyer completed his first round of IV
therapy today to knock down his newest challenger, the BK virus. It was a long six (plus) hours, but he was
able to sleep through a good portion because of a dose of Benadryl. The Benadryl was a proactive measure to help
prevent an allergic reaction to the Cidofovir and IVIG pumped into him.
Sawyer loves to save the orange fingers for last.
Sawyer's doctor had some very encouraging
news for us. The virus has not yet entered into his blood. They caught this virus so early that it is only in his urine and we
pray it goes no further.
Also, his doctor was very reassuring
regarding this treatment protocol. Her
protocol is much more aggressive in the treatment of BK virus than other
nephrologists and she has experienced remarkable results.
Sawyer's doctor believes this treatment
will knock this virus down long enough for his immune system to take over in
the coming months and keep it at bay.
Again, there is no cure, but his own body should be able to manage the
virus on its own in the near future.
We found out today,
through a routine urine test, that Sawyer has theBK virus. We have a lot to learn about this virus, as
we just found out hours ago, but we know it can be very harmful to Sawyer's new kidney if not treated quickly. It appears we caught it early because they
screen frequently for this virus and it was just discovered today.
Sawyer will go
through 6 hours of IV therapy in the hospital this week and again in the next
two weeks. There is no cure, but the hope is to knock this virus down to the
point it will not jeopardize Sawyer's
kidney.
We appreciate your
prayers regarding this virus. Also, please pray concerning
Sawyer's growth. Sawyer should be
growing with the new kidney, even a little "make up" growth. However, this is not happening for him. He is
below the 10th percentile in height. The doctor recently adjusted Sawyer's steroid dosage and other tests will be performed soon.
Sawyer is bothered by his height especially as he sees all of his friends growing taller. The other night he asked Karen if eating grapes would make him grow. We hope so!
