So, let me begin by saying how
incredibly proud and honored I am to have Buffy as my sister (This is Katherine writing by the way). Not only has she
diligently kept everyone updated through this blog, but has done so while
working full time, being a mother, a wife, a sister, a daughter, a researcher,
and on top of all of that, a student finishing her doctorate in applied
behavioral analysis. I’d also like to acknowledge that this week marks 10
months since Dad was diagnosed with GBM. At the time of the diagnosis, doctors
gave him a possible life expectancy of 6 weeks…but here we are 10 months later.
Wow. I am sitting here in tears, blown away by God’s graciousness, love, and
power. We never thought Dad would make it this long. What an answered prayer!
Since the last post, our lives have
continued to feel like an emotional roller coaster ride. There have been
moments of great joy, sadness, frustration, excitement, fear, and relief. You
name it, and we’ve felt it. There have been good days, where Dad has had the
energy to sing, go on short walks, go on outings around town, and have
meaningful conversations. There have been not so good days, where Dad has been
physically and mentally drained, unable to stay awake or even talk. No matter the condition, we consider every day, and every moment spent with Dad a gift.
Dad has met several meaningful
benchmarks since the last post:
Annabelle turned 3, Adelyn turned 2, I turned 28, James had a birthday,
and Dad turned 61. Buffy and James had a party for the girls, and we went to
lunch as a family to Tandor Grill, Dad’s choice, to celebrate our birthdays.
These
benchmarks are beautiful moments we will cherish forever. Over this past month,
we have also had a constant flow of visitors and guests. Family and friends
have come from all over to spend time with Dad, including: Marvin (Germany),
Tommye Kay (Mississippi), Paula (Atlanta), Shela (Texas), Christopher (Louisiana),
Ken (Seattle), and Mark and Lynn Bagley (Virginia). Each day of this journey, we
are astounded by the love and kindness of those around us.
Numerous friends of
my parents, that live here in town, have has brought food, visited, and prayed
with us. If I named each of them by name, the list would take up half of the
post. Our family is tremendously thankful for each and every one of you! The busyness
of guests demonstrates Dad’s impact on others, and illustrates his contagious
personality-everyone that has ever met him, loves and cares for him.
So, now that you’re caught up on
what has happened over the past month, I’d like to tell you about where we are
today. As many of you already know, Dad is currently in the hospital. He is
stable, and getting back to normal. Last Saturday morning, we noticed Dad was
not acting like himself; he seemed to be spacey, quiet, and completely
exhausted. He took several naps, and slept on and off throughout the day.
Saturday evening, they went to the Lord of Life October festival. There was
dancing, music, traditional German attire, beer, and bratwursts. Mom and Dad
stayed for about two hours, and when they got home Dad immediately went to
sleep. From this point on, we were unable to wake him, or keep him up for more
than a few minutes at a time.
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Mom and the girls at the Oktober Festival |
He slept the entire day on Sunday, with only a
few moments of being alert. That evening Annabelle and Adelyn climbed into his
bed, sang him
Jesus Loves Me, and
snuggled next to him while patting his head and stomach. The girls love to help
care for Dad; they give him his medicine, his oil, sing him songs, and
“pat-pat” his head. That evening, Dad rested in silence and did not respond to
the girls’ melodic tunes. This was the moment we realized something was truly
wrong. We instantly assumed this severe fatigue was due to swelling in his
brain, as this had been the cause in the past. After consulting with his
oncologist, Dr. Weir, we increased his dose of steroids. In the past, Dad has
bounced back to “normal” within an hour of the added boost. This was not the
case this time. Dad seemed to fall into a deeper sleep, and became less
responsive.
On Monday, worry and fear began to
ensue. Dad was still in the deep slumber; he was unable to open his eyes past a
squint, fully wake up or get out of bed, and moans were his verbal responses.
It was as if he had been completely drained of all of his energy. Why did the
steroids not work? My mind started wondering, questioning other potential
causes to this behavior. What else could be wrong? My Mom, Mark, Marvin
(cousin), Mark and Lynn Bagley (family friends) attempted to wake Dad, but he
was unresponsive. Mom called the doctor, and checked his blood sugar. Mark Bagley,
one of Dad’s childhood best friends is diabetic, and had the device to do so. After
relaying to Dr. Weir Dad’s blood sugar level, he directed them to take Dad to the
West Clinic for blood work. Without Mark Bagley’s presence, we wouldn’t have
had a way to check Dad’s blood sugar. What a blessing-God’s timing and
placement of people are impeccable.
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Dad and Mark Bagley |
Dad’s lab results indicated several
concerns, one of them being a critically high blood sugar level. Dad’s high
blood sugar caused him to enter into somewhat of a twilight zone. Dr. Weir
informed us that prolonged use of steroids caused the high blood sugar.
Unfortunately, at this time there is no way for Dad to stop using them, due to
the growth in his brain. An ambulance took Dad from the West Clinic to the VA
emergency room. This was an extremely scary moment for all of us, as we sat and
waited to hear some news from Mom. When we were certain the issue was swelling,
we were comfortable, and knew how to fix it. But, when we realized swelling was
not the cause, the unknown of the situation became frightening. Is he going to
be okay? Will he wake up? Will he return to normal? All of these questions
raced through my mind. Much of this journey has been unpredictable, as evident
by this 10-month marker— but in those rare foreseeable moments, when we believe
to understand the cause, it is as if we gain a sense of control over Dad’s
illness and the situation. We are constantly reminded that we don’t have
control, and there is no way for us to micro-manage the situation. Letting go
and accepting that we are powerless in this has been a challenge for each of
us. The only things we can control are our thoughts and actions; how we choose
to view each day and the situation, and how we choose to spend this precious
time with Dad.
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Mark and Dad in Palliative Care room |
Mark and I stayed the night in the
ER with Dad, so Mom could go home and get some rest. While there, Dad continued
to be in this coma like state. I had moments of mixed emotions throughout the
course of the night. Relief and happiness, as I thought about how grateful I
was that we learned of Dad’s blood sugar level, and how perfectly everything
worked out. Fear and distress, as Mark, the nurse, and myself tried everything
in our power to wake Dad, but had no success. I wanted Dad to open his eyes,
sit up, and say something witty. It was an emotionally and physically draining
evening. While in the ER, Mark Bagley, Marvin, Mabel, Tim P., Any Q., and Mike
Rhodes all came to visit and check on Mom and Dad. What could we have possibly done to deserve such
incredible friends?
After several hours of waiting for
a room, Dad was admitted to the 2nd floor of the hospital to be
monitored. On Tuesday, after several doses of insulin and fluids, Dad started
to come to, and was more alert. While on the 2nd floor Dad was
continuously monitored, and numerous tests and scans were run. His blood sugar
continued to stay high, although lower than at admission, and he remained
fatigued. As the week continued Dad started to act more like himself: he joked
and was being sarcastic with the nurses and doctors, constantly talked about
how beautiful mom is, asked for snuff and Jakobsons, and planned what he was
going to bring to his radiation buddies.
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Maria reading the German Bible |
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Family picture from when we were kids |
Since being in the hospital, Dad
has had a slew of visitors. He is loved by so many, and everyone is egger to
help out. David Poley, another childhood friend of Dad’s, spent three nights in
a row with him in the hospital. What a selfless act of true friendship. Maria
read him the German Bible, Andy read him devotionals, Yuday brought him chai
tea, and so many more graced him with their company.
Before continuing, I want to
share a story with you. On Thursday night I was lying in the hospital
bed with Dad, and he asked if I’d show him a baby picture of Mark. Dad smiled,
as we looked through the few pictures I have saved on my phone of us as
children. He told me stories about when we were kids, and questioned if I
thought Baby Bobby would look and act like Mark. Wendy showed him her belly
last week, and his eyes immediately started watering, and joy filled his face with
a grin. I think this moment was special for him. Wendy has started to really
show, and for the first time, Dad was able to see how close he is to meeting his
namesake.
Dad is excited and determined to
meet Baby Bobby. He talks about
when
he will meet him, not
if. It’s so
encouraging to know Dad has something he is living for.
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Buffy and Dad in Palliative Care room |
Friday night, Dad was moved to
palliative care. He will stay in the hospital for possibly another week or two. In palliative care he will receive OT, PT, treatment, and around the
clock attention. Dad is keeping his head up and is actually looking forward to
his time in palliative care. Honestly, I feared being hospitalized could lead
to him feeling defeated and hopeless, but he combated those thoughts with his
response of, “rather be here so they can help me keep living, than not, and
dying”. He wants to get stronger, and he is ready to keep fighting. He has
started to refer to the hospital as a “hoptel”-a hotel with the added benefits
of healthcare services. This move will be challenging as we try to balance
ordinary life with time spent in the hospital.
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Add caption |
In the
midst of this hectic and worry filled time, there have been several joys and
blessings. The Lord has really been watching over all of us. He placed
incredible people around Dad at the hospital. Dad’s doctor from the ER came up
to his room to pray several times, his nurse practitioner, nurses, and the
administrator that visited have all been believers. We are surrounded by
spiritual support. Mom and I were talking about how God has a plan that is
greater than ours. Every moment we begin to worry, doubt, or are stricken with
fear, God shines his light on the situation and reminds us that he is in
control, and deeply care for us. Please continue to pray for Dad as he recovers
from this incident. We are hoping he will be able to come home soon.
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Singing song's that Dad wrote in the cowboy room |
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Young Fathers Bible Study |