The Hoptel

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.

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.

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.

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 2^nd 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 2^nd 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.

Maria reading the German Bible

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.

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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 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.

Singing song's that Dad wrote in the cowboy room

Young Fathers Bible Study