Wednesday, July 11, 2018

Final Post

It has been 6 weeks since daddy passed away, and a year and a half since I've updated the blog. Though, Karen has diligently and thankfully kept a beautiful account of it on her blog. To get completely updated, here's the link: Karen's Dr. Bob's Brain Blog
Daddy loved a good cigar!
I often couldn’t bring myself to write what was happening. Doing so would have made it more real, and honestly, the last year and a half of my dad’s life felt more like a constant dream state or alternate universe that I was watching as an outsider.

It’s still surreal that daddy is gone. The most intelligent, kind, loving, compassionate person I know, gone. There are so many people that I wish could have met him, so many people that will never know his wit and brilliance and loving heart.
Young Daddy
There isn’t a single day that goes by that I don’t break down and cry, wishing my dad were here. Wish I could see his smile and feel his arm squeeze me with the hug he gave me every time I saw him and the last time I saw him.

So many things have changed and shifted over the last year and a half. I want to remind everyone that I hate this cancer. I hate how it has stolen the person I love the most in the world. I feel like a part of me has faded away with his slow deterioration, literally like a part of my soul and being has been forever lost when Daddy took his final breathe. I hate how the essence of my dad, his smile, the way he looked at me like his heart would burst with love, and his brilliant mischievous mind was trapped in a body that was riddled with pain and immobility. When I got the rare moment of quietness that I got to lay my head on his shoulder and just be with my dad, he would whisper to me that we should dance. I agreed with him and would hold his hand and hum a tune that would be perfect for a waltz or foxtrot. He would tell me that he loves to dance with me and would close his eyes and smile.
Daddy and us circa '94
I cried. Often alone or with my face buried in his neck. Briefly. Before rebounding to try to be on full attention for everything else around me I was burying myself in.

I have always been a Dddy's girl
Dad has been so blessed in this past year. It's amazing how things work out. Last I wrote, we were still awaiting the arrival of baby Bobby in January 2017. The unraveling of his birth and timing of it all was so miraculous. Dad was at a pain management appointment in the building directly next to the women's hospital where Wendy was in labor with our sweet baby Bobby. We got the text that it was time to push when dad's appointment was rounding out. So, mom and Katherine took him to the Wendy's to eat a burger instead of having transportation pick them up. Just as they got back to the Women's Hospital, we got the word that Bobby was here and we could see him. The timing couldn't have been more perfect. Dad was in minimal pain, already out of the house, and directly where he needed to be to see his first grandson and his namesake directly after the birth.
Good old JC Penny picture

Baby Bobby has proven to be an absolute joy and blessing, as we all knew he would be. His infectious little giggle and the way he has a full (one sided) conversation with you makes your heart warm and happy. From what I remember Meme telling me about daddy as a little boy, Bobby may be following in his Opa's footsteps to a tee. He's so smart, curious, tenacious, and in a constant state of innocent wonder. He is one of the most coordinated little one year old's I've ever seen, which I'm sure will lead to plenty of climbing and exploratory encounters that will prematurely grey Marky and Wendy.

In addition to baby Bobby, we now have our sweet Charlotte. Daddy beat the doctor's assumption that he was close to his final breathe, twice, before Charlotte was born. Martin was an essential part in keeping Daddy alive while we were waiting for Charlotte's arrival, and afterward once again, before 
Thanksgiving before his Christmas Eve diagnosis
he passed away.  Their bond, though short, was miraculous. Charlotte was always calm in his presence, and still sleeps best for her naps in his bed.

There is no way to thank everyone for their outpouring of love and kindness. If there is one thing I have learned over dad's illness, its that he and mom have touched so many lives. It didn't matter what you looked like, believed in, how much money you did or didn't have, where you were from... there was never a stranger in my parent's house. We had visitors explicitly come to say their goodbye's from at least 9 states, Egypt, South Africa, Germany, and I'm sure more places I can't recall. He touched lives all over the world.

Mom and dad were inseparable, and their love for each other is one which any couple would aspire to. Their vows proved to be those which would hold fast. Through sickness and health. Mom never left his side, dad never had a bedsore despite having been in the bed almost for two years. There was never a question of her dedication and love. 
There was no questioning their love

Please make sure to watch Daddy's service. The accounts and the message are truly touching and a beautiful representation of who Daddy was. Daddy's service at 2PC

Also, please don't hesitate to email me your memories and stories of Daddy. None is insignificant in giving a full picture of who Daddy was. We are going to bind them together and make a book for the grandchildren to look back on and learn who their grandfather was. My email is

Friday, December 23, 2016

Year one

**Warning this post may be a little long and jump around a bit.**
Dad and me before his surgery
Today marks the first year since dad's surgery and unofficial diagnosis of Glioblastoma Multiforme. It would be two weeks before we got the official diagnosis, but the Dr. Sorensen, dad's surgeon had unfortunately seen many GBM4 cases and was fairly certain that's what it was. I remember mom handing me the phone in the waiting room which was used to communicate with the surgery team. He told me the details, I took diligent notes in my phone, trying to stay focused and ask the "right" questions as failed to hold back the stream of tears I was trying to keep my
mom from seeing. I'm an academic like my dad. I wanted the facts. I wanted the statistics and the possible outcomes on either side of the curve. I wrote them all down. Martin was standing right next to me and I vaguely remember asking him for clarification on some medical terminology and mostly I remember being numb. After hanging up with the surgeon, we went in to the chapel in the waiting room. Dr. Sorensen
Thanksgiving 2016
had already given mom the brief version and she had shared it with Katherine. I told her I would call Marky and Wendy, knowing they were waiting for a call to tell them the outcome. I had calmed myself pretty well, I told them the news. I began to sob, Wendy cried, I don't remember what Mark did, but I feel like he was trying to be strong and level headed. That's how Marky is. I gave them the statistics: median life expectancy is 15 months, most die before 12 months and only 5% live longer than 2 years. Dr. Sorensen said he had patients that were 10 years out, but that was not at all the norm. We would likely see more and more of the strange behavior and gradual loss of function. I didn't understand why this would happen to our dad. He was full of life, brilliant, kind, agile, talented, and only 60 years old. My girls needed him, he needed to see them graduate college, and see Mark and Katherine's babies be born. This was not how this was supposed to happen... and at Christmas.

Mom and dad
Last Christmas was not filled with joy and celebration of the birth of the One that brings dad so much comfort. It was terrifying, sad, uncertain, and dark. Martin took the decorations down for mom before dad came home. It was too much for her to have them up and I think she was almost angry about the contradiction of the season that was upon us and the season in which we were entering. We will be eternally grateful to the family and friends that brought us food, sat with us, prayed with us, read to dad, sang to him... and I personally am grateful to Martin's co-workers and their love and kindness, not letting Martin go to work and covering his shifts so that he could be with his new fiance during that time.

So much has changed in a year. Dad has gone from a vibrant, funny, happy person to someone much different. He is quiet, and almost contemplative. It's difficult to get him to smile at things that he used to, and he is rarely spontaneous and lively. Dad struggles every day. It's so shocking to watch and you realize how much you take for grated. Life. Your own daily existence. Dad struggles with staying awake, alert, mobility, independence, appetite... Some days he welcomes death, and others he smiles at the kind gestures of those that visit, play music, read the bible, have normal conversations. Dad isn't afraid of dying, he knows where he will go. I think he worries most about leaving us. For us, or at least me, it is hard to hold the two realities of mourning the loss of someone and having them physically in front you.

Annabelle loves cuddling with her Opa
Dad is looking forward to the people who will stop by after the church services on Christmas Eve, like they used to when my grandmother was still living. He wants to buy a new hat for Christmas Eve Service. He encouraged mom to decorate the house and even decorated some ugly sweater cookies. We are trying to be in the Christmas spirit. One thing for which we we are grateful is the fact that dad was given 3months with the size and location of his tumor. We are at a year. We have some small goals we are hoping will keep dad motivated to stay with us a little longer. Mark and Wendy are having the first grandson and he will be dad's namesake. The girls call him "Baby Bobby" or "Baby Opa." He is due to arrive at the end of January. I have also told dad that I want him to see me graduate with my doctorate in May. He just smiles and closes his eyes. Some days he asks to see Baby Bobby, and I think he is hoping he will be able to hold him after he is born. He wants to see pictures of Marky as a baby so he can tell if they look alike.

Dad loves going to Erling Jensen's
Mom has been so incredibly strong this entire time. It is so hard to be a caregiver and a spouse, and with the help of family and friends, she has managed to fare pretty well. It's overwhelming, and some days she has to go on a long grocery trip, or drive around the block, but she allows herself to take those breaks which is good. Please pray for her strength, compassion, and comfort surrounding every thing that is happening.

So right now, we are working on small goals and taking each day as it is. Dad is no longer doing any chemo, Avastin, or the Optune Cap.
We also had a great group of carolers that came to sing for dad the other day. He was so happy to hear and see them.
Thank you again to all of our family,  and friends. We would not be where weare without your constant prayer and support.

Monday, October 24, 2016

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 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.
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

Wednesday, September 14, 2016

The little things

I haven't updated in a while. Between school starting back, buying a house, and just life, I have been so BUSY!!
Annabelle and Opa relaxing on the couch
For us living with dad and seeing him on a day to day basis, we adjust to the changes in him as the new benchmark of his "normal." When I ask whoever has spent the day with him how he was, the response usually varies from "he had a good day," to "he was kind of tired," to "he was a little off." Those all sound somewhat promising. When people ask me how dad is doing, it's so hard for me to explain without sounding like I'm not expressing the gravity of the situation. Based on where he was. Based on where he could be. Based on where he "should" be from life expectancy estimates by doctors in the beginning... He is doing great. Based on who he is... he's not well. He's not who he was. At least the sustenance is different. He is slower to process, obsessive, impulsive, low tolerance for most things that aren't of explicit interest to him, tangential... the list could go on and on. Dad is still talking, he walks pretty well considering, he is able to perform daily functions for the most part, he recognizes us, and when he is with people not his family, he is very engaging.
Dad and the girls in his white seersucker

At the same time, he has fallen a lot, he is very weak, he is afraid he will die if he goes to sleep so he falls asleep a lot for short naps from exhaustion, he doesn't have much stamina or appetite (other than for ice cream, donuts, and chocolate), and his personality is drastically different. Dad is abrupt, has no filter, is impulsive, and sometimes just mean (combination of medications and tumor location cause this). He still holds his faith in God, and tells us kids how much he loves us. He enjoys having Adelyn tell him "you my favorite Opa in the WHOLE WORLD," while snuggling him and giving him baby kisses. He gains solace and comfort from the group of people that pop in and join in his Thursday night bible study at the house, and tries to do things with his friends that come by. 
More of dad's outings include the use of a wheelchair to help with navigating areas and simply for the fact that he gets tired. We notice that he seems much happier and alert when there are people visiting in the morning and early afternoon (when he has the most energy).
I love my daddy
For me, I vacillate between being sad, grateful, and angry. I want my dad back. Some days I don't know the person in the body that I barely recognize. Sometimes who he was before the surgery shines through and I try to grasp and hold on to that with every bit of my being. 
People say, "spend as much time together as you can," "video him as much as possible" "take lots of pictures." It's hard to explain that I know it seems to make sense, but I often don't want to. I want the pictures of my dad with my girls growing older to be like the ones when they were younger. So often the video footage and pictures highlight this horrible journey and what it has done to my dad. I want to have strong memories of when he was healthy and I want my girls to think of him like I do. I look at the pictures and videos I have from after the surgery... They make me so sad. I cry. I cry the most, and most frequently, when I look at the picture of my dad and me in his hospital bed before he went in to surgery. He has his trademark smile, with a hint of apprehension. It was the last time my "real" dad was here. It's the last picture I have of him.

We are so happy for Marky and Wendy!!!
When I look at recent pictures and videos, it's like I'm in a movie watching someone else's life sometimes. Watching someone else's dad suffer and the family scared and trying to hold a good face. Maybe it's just because I don't WANT it to be me. My dad. My family. He's too young. There are too many grand babies that need to meet him. Too many college graduations he needs to attend and weddings at which he needs to cry. There are too many recitals he needs to see and boo boos he needs to kiss. Why? Why my dad? Why my girls' Opa? Nothing gives me closure or answers. Nothing
makes me feel better or confident in the fact that our dad was chosen for this journey. Nothing. I've always had a selfish streak in me. It comes out strong with this. I selfishly want my dad.
This article explains better...

All of the grands!
We had no idea what was going to come out of the surgeon's mouth when he talked to us after the surgery. I had no preparation for the words and few statistics I was about to have to stumble over through sobs while I talked to my brother and sister-in-law, who were on a vacation at the time, and tell them what the doctor had just shared with us.

I wish I had documented every single silly song dad sang for my girls, had video of them reading together, had video of him at his school teacher talent shows. Many of these moments I have now in my mind. They are clear and full of detail. I don't want them replaced with what we are living now. I don't ever want them to fade. But they will. My memories will fade. They are only mine. Stored in my mind with my personal and
I think they are excited that it's a BOY!
internal vision and attention to details. Even if I remembered forever, my girls won't have them, and can't show them to their kids. It's all in my mind. One day, my mind may be like dad's. Who knows what will happen. I just want something tangible to document my memory and to immortalize my dad.

We have been looking through old family videos. Dad seems to enjoy them, but I cant tell how he feels about them. Does he look at them like he would as any 60 year old watching his 35 year old self? Does he see himself singing, dancing, being silly with his kids, and long for that so that with his grandkids? Does he see Videos of himself and me and think of Mia; himself and Katherine and think of Annabelle and Adelyn; himself and Marky and think of what it would be like if he could enjoy and play with baby Bobby when he comes in January. Does he watch the progression of his children and wife in videos and think about the progression of the next generation? Does he have a twinge of sadness that he may never meet Katherine's kids?
Lately I've struggled with happy thoughts around what is happening. I try to laugh with dad and enjoy the moment, but it is so, so, so hard.

Marky, Mom, and Dad
Despite the decline, we have gotten good news lately. The results from dad's MRI from Monday showed everything stable and looks just like the July MRI. Dad hasn't been able to wear his Optune cap much since Mackinac, so mom thinks this may be why it's just stable and not getting smaller again. Also, the EEG showed NO SEIZURE ACTIVITY! We were very happy with this as it means we are able to begin weaning some of the anti-seizure meds. We think these are the drugs that make dad in a bad mood some times and are really zapping his energy.

Since I last wrote, Marky and Wendy have moved back to Memphis, and we found out Friday that they are expecting a baby BOY!! After three granddaughters, everyone is happy to have a boy. I'm ecstatic that dad will be able to see his first grandson, who will also be his namesake: Robert Andrews Bolding, they will call him Bobby. If you ask Annabelle and Adelyn, they will tell you his name is "baby Bobby." They are excited to have a baby cousin, though Annabelle was miffed at first because "[she] wore pink" at the gender reveal. Lol. She seems to be over that now and is talking about how she will rock him and show him how to walk. I think the girls will be great big cousins.

Thank you all for your continued prayers, words of encouragement, comforting touches, and infectious happiness.  Don't forget we still have Dr. Bob shirts on sale and the proceeds will fund upcoming care for dad. These ship around the world. Check the site, they regularly have free shipping.

This is a video trying to give some explanation to the gravity of a Glioblastoma diagnosis. It's not like other cancers. There is no cure. Standard treatment is not promising. Duke's Polio vaccine trial is one of the hardest to qualify for with some of the strictest requirements, no, my dad doesn't qualify. But thank you for trying to relate and be helpful!

Wednesday, August 10, 2016

Mackinac Island 2016

Mom and dad on the plane on the way to MI
About 7 years ago, we went to Mackinac Island as a last minute trip over Memorial Day weekend. The weather was nice and unusually warm, causing the lilac trees to bloom about two weeks to soon. The workers were telling us how upset the regulars would be in two weeks at the lilac festival since all of the trees were blooming early, there wouldn't be any left for the festival.

Overall, it was a great trip. despite driving 20+ hours to get there, a lot of fun was had along the way. Based on that trip, I went with memories of dad and mom and Mia and the things that we did there before. Mark, Katherine, James, the little girls, and Paula came this time. So there were more people and opportunities than before.

That being said, this trip was completely different. Dad and mom stayed behind quite a bit because dad was so tired. The things we had previously done with them were done without them and we made new memories with the girls. [side note: Patoskey, Traverse, and Mackinac Island are BEAUTIFUL! If you have never been to that part of Michigan in the summer, put it on your bucket list!] 

Everyone at the lavender fields
We stayed in Patoskey for two nights and absolutely loved it. The owner of the Hampton Inn we stayed in was there and is a pediatric anesthesiologist. He happened to know Dr. Weir because of a Christian doctors fellowship with which they work. Small world! 
Nearby was a beautiful lake front town, a small beach, and yacht dock. We took the girls down and they played in the water, and Mark, Katherine, and Mia went swimming. 
Everything about the area was beautiful. The houses, the view, the quaint nature of the town. It was nice to be amidst such simplicity with comforts of modern day. 
We all went to a lavender farm one day.  James found it for us and it was amazing. Our tour guide was a 13 year old local boy named Will who blew us away with his personality and knowledge. The area smelled beautiful and the pictures turned out well. Not to mention there was some amazing lavender ice cream and lemonade which we all enjoyed! 

For the most part, there was only one major hiccup in the trip. While getting ready to load the ferry, dad stepped out of the golf cart and managed to lose his footing. He fell back and hit his head on the pavement. He had his Optune cap on and one of the discs in the arrays busted his head open. Dad, mom, and Mark made a short (really!) trip to the ER nearby. Dad got 4 stitches in his head and they were back on track about 2 hours behind us. 
Adelyn loved the flowers

Dr. Weir was amazing and called the ER to make sure they had all of the information they needed and the ER doctor took good care of everyone. The good part about the fall is that dad didn't have to wear his Optune for the rest of the trip. He gets to keep it off until the wound completely heals. 

Annabelle loved the swing
While at the ER I got information from Dr. Weir regarding dad's MRI from the Friday before we left. The scans showed a reduction in enhancement and that the midline shift is gone! Praise God on high!! This means that the swelling has reduced greatly but also that the tumor size has gone down. 
Now you know I've done my research in the area of Avastin, which is the drug dad is currently on for swelling. It's common for it to give misleading scans and show reduction when there really isn't any. So, I asked Dr. Weir about it. He confirmed that it's often the case, but because the midline shift is gone, he feels confident that the enhancement reduction  (decrease in actual tumor area) is actually
that. A reduction in the size of the tumor. 

The ferry on the way to Mackinac Island
Once dad, mom, and Mark made it to Mackinac, we were ready for the experience that dad wanted. We stayed at the Grand Hotel while we were there. It's a high fancy place where you have to wear a dress or coat and tie to be served after 6:00 pm. Dad loves to dress up and loved being dressed up and sitting on the huge porch. He wanted a locally brewed beer, but I don't think they found one.

The Grand Hotel
It was a little difficult to fully enjoy the island alongside dad because there are no motorized vehicles allowed on the island, and its pretty hilly terrain. We took a horse drawn carriage once and walked, rode bikes, or rode horses the rest of the time. Overall, the trip was great, and rather than going in to tons of detail, I'll just blast you with photos!!


Tuesday, June 21, 2016

Update and Father's Day

Sorry it has been a minute since I have last posted. I think of less posts as a good thing, because it means nothing is bad. I am making an effort to keep a post at least once a month on here to ensure the content is worth reading.

I think the shirt says it all
Since I last wrote, Katherine and Martin had their honeymoon, we went to Florida, had an MRI, and Father's Day!

I want to start off by saying that Martin is an amazing husband and encouraged Katherine to come down to Florida with us to be able to spend time with dad just two days after coming back from their honeymoon. He had to work, so he let his new bride leave him for 5 days and it is something we very much appreciated. Thank You Martin!

James and I planned this trip to Florida in hopes of giving mom some time to relax (she loves the beach) and give us time to hang out with dad away from the mundane routine of being around the house. The timing could have been better regarding chemo and such, but it was our Summer break and was the time we had to work with.

On the way down, dad had some episodes of falling at rest stops. After initially thinking they have been seizures, we came to the conclusion that it was more likely the case that dad was standing up too quickly after having sat for an extended period of time. In addition, dad had finished a chemo round the day before we left, this leaving him weak and with a variety of other side effects that weren't conducive to travel so soon. Dad pushed through, and by the second day, he was still tired but enjoying himself.
Isn't Mom beautiful?
Mom and the girls loved looking for shells and we made a point to take dad's arrays off a few times so he could walk around without his bag and wires everywhere. He seemed to really like that and everyone else was simply enjoying time with dad and away from the doctors appointments.

After returning home, dad had an appointment to have a follow up MRI. Dr. Weir was amazing and got us the results the same say instead of us having to wait for days or weeks like some people do. That evening he contacted me and told me the results.
Just like before. Opa ad Boo reading
Dad's tumor has remained stable since his last MRI with now evidence of progression of disease (that means no new growth!!). However, there is increased swelling (edema) around the tumor and this puts us in a kind of tricky situation. Dad's tumor is far too large to qualify for most of the newly diagnosed trails and if it were small enough, many of those trials exclude participants who have had SOC. Because dad's tumor has remained stable since his last MRI, he doesn't qualify for any of the trials marked for growth or recurrence. This is great because is means no growth, but it poses a very unique problem.
Many very promising immunotherapy trials do not allow for patients to have used a drug called Avastin. Avastin is an angiogenesis inhibitor, a drug that slows the growth of new blood vessels. This sounded very scary to me at first. I thought, if no new blood vessels can grow, how does the body repair itself? I spoke with Sheng and he assured me that this drug targets the vessels that supply the tumor. With the tumor being in the brain, we have a situation where the only part of the brain that has new vessel growth in someone my dad's age, is tumor. The glial cells don't require constant vessel growth, so it shouldn't impact the brain negatively. There are some side effects that I worry about such as intestinal bleeding, extreme fatigue, and some others...
Annabelle had to give kisses to Opa
Avastin is nicknamed "steroids on steroids." Now, it's not a steroid but it does the same thing that the steroids dad is currently taking, it just does it much more efficiently and without the muscle atrophy and weakened ability to heal that the steroids have. The biggest plus of this drug is that it frequently causes the swelling to go down so drastically that the patient feels almost normal. Obviously, this would be great.  This is where my anxiety kicks in.
I have been the one to do research, scouring journal publications, clinical trials, alternative medicines, etc. I am also the one who keeps an open line of communication with dad's doctors between visits. Dad trusts me to give him the information I gather and help make decisions regarding his treatment with his doctors. Dad obviously has the last say on everything presented, but getting the information and making sure I've looked at every angle for what it would look like to move forward with a treatment is scary and I am constantly afraid I will make or suggest the wrong thing.
Adelyn loves giving her Opa kisses
So, where we are now is looking for trails that will allow Avastin to have been used in the event the tumor begins to grow. Dad has an appointment with Dr. Weir tomorrow and I'm sure that will be discussed with the possibility of moving forward with Avastin infusions soon.

Boo insisted on sleeping with dad
Mark and Wendy were in town for Father's Day, and we all very much enjoyed ourselves. All 8 of us ate at Martin and Katherine's house before going to see Oliver at Theater Memphis and it was great. Watching the Fagin character, I could see my dad doing those kinds of dances when we were kids and I could tell dad was enjoying himself while at the theater. It was a loate play and by the end, dad was a little tired and slow, but it was a nice component for Father's Day for daddy and James and we were able to enjoy it as a family.

Please continue to pray for dad and his ability to beat this beast. We have no growth, so lets pray for shrinking of the tumor next! Be sure to thank God for keeping dad stable :) We thank all of you who have been with us from the start and those who continue to show your support and love by visiting and calling. I will update you as soon as something happens!