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. 

ER

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!!

 

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!

Katherine got married!!

Katherine's gift to dad

Saturday, May 21, my baby sister married a wonderful man. Martin has been such a blessing to our family and we couldn't imagine a better man for my sister. In preparation for her wedding, we had family and friends come in from all over the country and world. Katherine's beautiful friends showered her with love and support and the day went off without a hitch. With regard to dad, there were a couple of bumps in the road that Katherine took with great stride, patience, and grace. I wouldn't have expected less from her. She is the rock. Personally, I completely came apart multiple times between Friday and the father daughter dance at her reception, including her ceremony. Sorry about that Katherine.

mom and dad at the rehearsal dinner

Somehow on Friday, between all the family and last minute preparations, dad didn't take his medication in the morning. We knew by early afternoon because he had a seizure that caused him to fall. They immediately dosed him and had him rest. We wanted him to skip the rehearsal so he was strong for the dinner, but he insisted on coming. 

girls getting ready

Dad gave a wonderful prayer at the rehearsal dinner and was pretty strong most of the night. He walked around and enjoyed himself overall. So many people came up and showered Katherine and Martin with love and congratulations. The many speeches that were made highlighted how amazing my sister is. Her kindness and love of life inspires people and so many people commented on how she and Martin are a perfect pairing. Watching dad during these speeches, you could see him processing that everyone that meets Katherine thinks of her and loves her the way that we do. I can only imagine how proud my dad was to hear these accolades of his baby girl. 

On Saturday, meds were promptly dosed and the day at the church began around noon. The girls all hung around, ate, and shared stories and affirmations. If Katherine was nervous, you couldn't tell until we all lined up to walk down the aisle. While everyone was getting ready, many guests came early and joined dad in the sanctuary to hear the 12 piece orchestra warming up. Dad was in charge of the music at the church and was determined that the orchestra, with Diego and his sister on cello, would be there to usher Katherine and Martin in to the world as Mr. and Mrs. Haaga. 

Being in the back of the church, I was able to see dad and Katherine before they walked down the aisle. As the matron of honor, I was front and center, with my oldest Mia by my side, to watch daddy walk my baby sister down the aisle. This is the first time I couldn't contain my emotions. We had moved up plans and worked diligently since dad's diagnosis in December to make sure this very moment could happen. I was overcome with joy for my sister, compassion for my dad, and also sadness at the thought that now that we have gotten to this point, maybe dad won't fight anymore. I wanted to pause the moment. Make them stop, so dad would have something to fight and live for. 

After his seizure on Friday, he had told my mom that he only needed to stay alive for two more days. I needed him to still need to stay alive for this, every ounce of my being just wanted to slow this moment down and save it for dad. But it didn't. I knew it wouldn't. And so instead, I watched as Katherine came walking down the aisle. The most beautiful bride I'm sure almost everyone in that church had ever seen. With her dad... Wise, loving, strong at heart, but frail in body due to this monster that is taking him too soon from us. She walked with grace given to her from the many years of dance. She walked with the wisdom imparted to her by my dad. She walked with the love and kindness instilled in her by my mom. She walked. Slow. Beautiful. Purposeful. With my dad, straight in to the arms of the only man I could imagine being by her side on this day, and every other monumental day of her life. 

before walking down the aisle

During the ceremony, dad shook as he stood waiting for Sandy to ask him "who gives the woman to this man." It seemed like he gave a 10 minute homily as I stood there watching my dad shake and grab Martin for balance. This is where I watched as my sister's soon to be husband showed his love and compassion by holding dad's hand that grabbed his arm. He stayed focused on the words of the minister and maintained composure as I looked at him bawling and pleading with my eyes to please not let my dad fall. And he didn't. Dad gave Katherine away and sat down. The rest of the ceremony was seamless and Katherine and Martin were announced to the church as Mr. and Mrs. Haaga.

After the ceremony, we took pictures and went to the reception. Katherine and Martin had their first dance, and then dad and Katherine had their dance. This was where I cried the next time. Dad was a little thrown off by the way the band was playing the song, so he kind of was waiting until he recognized it. When he did, he pulled out all the stops with fancy footwork and spins. Once he started dancing, everyone clapped and cried. I watched and cried and saw my "real" dad out there with my sister on that dance floor. In his element and happy.

Everything about the reception and wedding was beautiful. The dances were great, the cakes were amazing, the German beer garden was relaxing and flowing with beer, the cigar station was occupied by dad and his friends, the band was outstanding, and the face painter had a line until she left. Everyone danced and ate and drank. Dad spent much of his time smoking cigars with his friends and joined mom for a slow dance and rounded out the evening dancing with me, then to Prince on the dance floor.
We all ushered Katherine and Martin out with sparklers and the day wound down.
My best fried Claire and her (now) fiance Drew, helped bring things to the house and hung out with dad playing guitar and talking. Drew lost his dad to GBM about 5 or 6 years ago, so he has a special perspective.

Dad, Mark, and Tim

Please continue to pray for guidance on dad's treatment and also for Katherine and Martin's new union. Thank you to everyone that came and those that helped and made this day possible!
You can find more pictures on Karen's blog http://www.karenpulferfocht.com/blog/drbobsbrain

Father daughter dance

Schilling Farms Middle School

 Dad taught at Schilling Farms for 15 years before moving to Collierville High School this past August. He loved it there and they loved him. Every year they have a fundraiser for a specific cause.

               

This year they chose to raise money for dad and brain cancer awareness. The school bought almost 200 Dr. Bob shirts and have had various other fundraiser components, one of which includes a teacher talent show. Dad, as I'm sure you have already guessed, was no stranger to these talent shows. In fact, he was an active participant the past few years. Today, we went to the school to watch the talent show and show support for the school and their amazing fundraising efforts. Dad has said over and over that he didn't want to go because he didn't want a lot of attention. Now, if you know dad, he isn't one to shy away from attention. I think he doesn't want attention drawn to the fact that he is sick. Dad is proud. He is also very much aware of his new apparatus as well as his physical limitations that make him less agile than before. In addition to that, these new meds have been impacting his general mood and making him more tired. We were so overwhelmed with love and support while we were there. Everyone had something to tell us about their interactions with dad. I was overcome with tears more than once. It was so fun to watch the teachers dancing and singing for their students. At the same time, my heart broke knowing that daddy will probably never dance and sing again. He loved those two things. Dad met mom when he was a singer in a band in Germany. He instilled his love for music with all of us and my brother, Mark, followed in his footsteps as a wonderful singer and musician. I remember being Mia's age and dad teaching me to do the waltz and foxtrot. He wanted to make sure I knew traditional, ballroom dancing basics. All three of us danced competitively until we were teenagers. 

I cried watching and knowing how much dad would have loved to be on stage and probably really wanted to see his old friends with whom he has worked for his entire teaching career. I can only imagine how heartbreaking it would have been to have to be a witness to something you love. Dad knows his limits. He mows how much he can handle. We were honored to go in his place, and I was saddened he didn't feel like going. Thank you Schilling Farms Middle School, and everyone that made today possible. We love you because you love our dad and truly appreciate the love you have for him and our family.  Please continue to pray for him and us!! 

 

It's been a while...

I'm sorry it's been a while since I have posted. We had to switch format because caringbridge changed their privacy options not allowing for a public forum any longer.
I want this to be a site that not only informs dad's friends of what is happening, but also brings awareness to anyone that googles brain cancer or glioblastoma. Our story is real life...

There have been so many things that happen and then resolve themselves, that I have tried  to wait and make sure I am passing along information that is accurate.

Since I have last updated, dad has gotten a new device that is supposed to help keep the tumor from growing. It is called an Optune cap. He is supposed to wear it 18-24 hours a day and it consists of four patches of arrays and electrodes that are positioned on his head and pulse electromagnetic waves through the brain to halt the division of tumor cells.
Dad hates this new device. It's cumbersome and limiting. He is annoyed by it everyday and it is contributing to the dampening of his spirits.

Since I last wrote, dad has had three of we think are TIA seizures. They are not the shaking on the ground type of seizures, rather seizures that present in dad as confusion, disorientation, and repetitive movements for about 10-15 minutes and then he "snaps out of it" and seems cognitively normal.

The neurologist has increased his anti-seizure meds and these have some rather unpleasant side effects. What we have seen with dad is increased irritability and sleeplessness. We think these are a result of the increased dose of Keppra, but I'm sure there is a cummulative effect as well... The idea that your days are numbered, thinking of how you will decline, worrying about your wife and children. I can't imagine fighting this demon, but dad has always been strong minded. I have no doubt that now is no exception.

Thank you for your continued prayers, and please share the switch to this blogspot with anyone you know that knows dad.

Daddy picking strawberries with Adelyn on Mother's Day

Shirts and update

We got the results from the MRI last Monday. It appears the tumor area is about 1cm larger all the way around. Dr. Weir was optimistic that this could be the pseudo progression he had warned us about, but may also be tumor growth. This is obviously not the news we were hoping for, but we are fighters along side dad, and are moving forward looking up.

Dad began his first round of 5/23 with the doubled dose of chemo and completed it on Monday. He hasn't appeared to have much negative impact from it and overall seems pretty good. Due to the larger scan and possible swelling, he has had his steroids (dex) increased to 2mg per day, which thankfully is still a relatively low dose. We noticed some cognitive clarity when the dex increased which tells us that the pressure was building but dad wasn't telling us that he was having headaches again. This is the kind of information we need from dad, but he doesn't want to worry us and is reluctant to disclose these things.

The radiologist and his oncologist were very happily surprised at how well dad is doing. He has some muscle atrophy from the dex and now that his skin isn't as sensitive, he is able to walk around outside more and get some good exercise to counter the effects of the steroids. Dad is also doing eye exercises to help his brain compensate for the loss of left peripheral vision in his eyes. He uses a funny mask to help with these exercises and the girls love it.

The next phase of dad's treatment will include Novacure (Optune cap) and we are simply waiting on the company to contact us to set everything up.

We have the tshirts available through a website for everyone to order their Dr. Bob shirts! The proceeds will go to helping fund travel expenses for a clinical trial if dad qualifies for one. In the event that he doesn't, the money will be donated to brain cancer research to assist in finding a cure for glioblastoma.

Please continue to pray for us and dad. The upcoming months will be busy with Katherine's wedding and dad's continued treatments and doctor visits.

Here is the site for ordering the shirts. Remember, May is brain cancer awareness month and we want to see you in your Dr. Bob shirts to help raise awareness! Enter the coupon code HAPPYAPRIL April 8-April 12 to get a 15% discount on the shirts!

https://shop.spreadshirt.com/drbobsbrain/?noCache=true

Post treatment MRI today

The past couple of weeks have gone well overall. Dad has been very tired and we think (hope) it's a result of lowering his dose of steroids. We think he may be having some headaches, but he doesn't communicate how he is feeling to us so we have to almost trick him in to disclosing headaches, auras, etc. We go by his behavior and try to decipher based on that if we need to ask different questions.

He has also had bouts of forgetfulness and odd behavior overall. I can only imagine how boring and frustrating it must be for him to be stuck hanging around the house or tied to someone else's schedule when he wants to go somewhere.

Dad had a follow up MRI today to check the tumor and determine what type of progress we have made. Again, there is some chance of pseudo progression being so close to final radiation, but hopefully we can get a good idea of where we stand.

This past weekend we were able to spend some good quality time with mom and dad as a family. Mark and Wendy came in town, our cousins Chris and Marvin were in town, and we all went down to Como to just get away from everything and relax.

We fished in the lake, rode the mule around the property, had great breakfasts and dinners at the cabin and enjoyed each other's company without appointments or having to watch the time to be anywhere. It was more evident that dad seems to be confused a bit more, but the time relaxing seems to have helped with that a little.

It's hard to relax when you are watching your dad's every move and trying to make sure he is ok, no new pain, that he isn't lost in his own mind, and that he is content overall.

Friday was also mom's birthday. Following in Bolding family tradition, Katherine made sure we had "Happy Birthday" banners hung around the cabin for mom, Martin brought flowers, candy, and a card, and Wendy had a cake. We really wanted mom to be able to relax as well.

We had an Easter egg hunt for the girls down at Como on Saturday. The littles had never really done an Easter egg hunt, so Annabelle in particular was extremely excited about finding ALL of the eggs. She even dumped her sisters' buckets in to her own so she could have "lots and lots of jelly beans."

On Sunday, we had a great family gathering at church for the service, and then went to the Crenshaw's (Wendy's family) for lunch. We loved seeing Molly, (little) Lucia, and Joe! It's a rare treat for all of the Crenshaw sisters to be home together and we loved spending time with all of them. Hal and Lucia have been such wonderful extended family and such a support locally, on behalf of Wendy, to my parents. They are such an amazingly sweet and generous family with the biggest hearts you could imagine. They have embraced all of our family, not just Marky and our parents, and we are so fortunate to have such kind people in our lives and "family."

Because of the increased confusion and general temperament shift, I have asked if we could get an "unofficial reading" on the MRI, but we will see what Dr. Weir says tomorrow.

Dad's sister is in town from Vicksburg and will be dad's personal chauffeur this week. I think we need a chauffeur/buddy for dad each week during the times which mom is at work. lol.

By the end of this week, dad should have the MRI results, be set up to begin the Optune cap, and be prepared to begin his first 5/23 of double dose chemo.

Thank you for your continued prayers and support. The dinners have been much appreciated as that is one of the only times all 6-8 of us sit together to eat.

Please pray that the MRI shows promise and we will be able to continue on the right track of stability and hopefully progression!