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!

Done with 42/30... Now we wait

Dad finished his radiation and first round of chemo. Provided the treatment has been effective, he will have a 4 week break, use the optune cap, and begin 5 days on and 23 days off (5/23) of chemo for a year or two.

The end of radiation has been bittersweet for dad as he has developed a close bond with his radiation team. Y'all have no idea how much daddy loves each of you and how much your kind words and dedication to dad has meant to him and us. THANK YOU!

All things considered, dad has done wonderfully. His counts stayed up to the point that his doctor said he didn't even look like he was on chemo. Dad is incredibly strong and resilient. He has been his whole life, and now has proven to be no exception.

Dad reported that his radiology team told him he would still feel the effects of the radiation for about 21 days after his last dose. It's a cumulative effect and hopefully the "fizzing around" will be effective! My understanding is that the radiation may cause what's called pseudo progression. This means that, on an MRI, it will give the illusion that the rumor has grown when it hasn't. It can be difficult to differentiate swelling from actual growth around the perimeter. Because of this, Dr. Weir is waiting 4-5 weeks before ordering another scan.

He has been a little more tired than previously, agitated, and kind of bossy. It's hard to determine if this is tumor, medication, restlessness, or a combination. Hopefully his next MRI will rule tumor out and we can tweak other factors.

Dad met with Dr. Pandey at West Clinic today to discuss moving forward with the Optune cap. This is a very interesting device that comes from Israel and has shown promise in keeping glio tumor growth at bay. It is 4 patches of electromagnetic discs that oscillate over the skull. The goal is that the oscillating will prohibit tumor cell division and keep it, at least, the same size as after radiation.

Because dad has begun "standard of care" (SOC) for the tumor, he is ineligible for some clinical trials that target rumors as "newly diagnosed." I am still in search of the best trial which will begin in the event that the tumor grows from this point forward. This has proven to be very tricky, because many trials have exclusion criteria which include tumor size. Dad's tumor is very large and pretty deep. As of yet, it hasn't crossed midline (hemispheres), but at the initial surgery it was very close.

Our cousin Marvin is coming in town tonight from Germany to keep dad company for the next couple of weeks. Mom returns to work Monday and we will need all the help we can to keep dad company and supervised while mom is at work.

The next few months will be tricky and anxiety driven with dad and planning Katherine's wedding. Please pray for peace and comfort during this time.

We are having t-shirts made to raise money for possible expenses related to clinical trials (travel/housing expenses), and will donate the remainder of the money to brain cancer research efforts. We have the rough draft of the "adult version" and are working on "kid friendly" shirts as well. I will post the link to order when we have all the shirt designs completed.

Thank you again for being there for our family and praying/sending good energy our way!

Karen has also updated the photoblog. We are so grateful for her love and willingness to document these times in a media for which dad has a passion. http://www.karenpulferfocht.com/blog/drbobsbrain

Day 20 of Radiation

We all went together to Low's bridal in Arkansas to find Katherine's wedding dress! It was quite the experience for our German family who aren't accustomed to the "go big or go home" attitude of the south lol. Katherine and Martin were recently engaged and originally planned to be married in December. Due to the current circumstances and the uncertainty of dad's diagnosis, they have chosen (with the pastor's blessing) to get married in May. While we had fun looking at dresses, and Katherine was stunning in everything she tried on (she should be a wedding dress model), there was a weight on our shoulders while we looked.

We cried at least once as the realization set in that we couldn't wait for a dress to be ordered, and yes, we know it's kind of short notice to just now be looking for a dress for a May wedding, because we were on a time crunch. An invisible timeline that we can't see the end of was forcing our hands in making decisions in what would be considered a short time frame. The worst part about it... We know everyone has a limited time on this earth, but we have been told our dad's time may very likely be shortened in a fashion that is devastating. And all we can do is watch and wait as it happens.

In the meantime, we cherish every moment spent with him. Savor the person that he still is, and tuck away these good times in the deep places of our minds to ensure we never lose them and despite what happens, who he may become, we will hold fast the memories of who our dad IS.

One night this weekend there were 22 people in my parents house eating and socializing. This is how our house has always been. A huge setting for community and fellowship. No one cares where you came from, how much money you have, your education, your disabilities, you are welcome at my parents'. This has not changed. I love being there when something so familiar takes place. It almost makes it seem like there is nothing different or out of place. Almost. Until you look up and see my dad with his huge scar and an oval shaped bald patch on the right side of his head where the radiation is blasting away at that tumor and destroying everything in its path...

Thank you for your continued prayers and support. We have at least a year of actively fighting this tumor with chemo, so your strength and faith is still very much needed!

Karen has also updated the photoblog.

http://www.karenpulferfocht.com/blog/drbobsbrain

Add caption

Today dad completed day 20 of his 30 days of radiation. Overall he is doing really well. He has some days worse than others where he exhibits some irritation, fatigue, loss of memory, and general confusion, but he's great considering.

One of dad's fist high school students (from back in the 80's) came to visit him. Anthony is from England and has hung around in Memphis since having moved here with his family when he was in high school. I met Anthony when I was in high school myself. Dad and I used to go to Otherlands coffee shop every Saturday morning from the time I was 14 until I was about 20. It was a rekindling of sorts of an old tradition that dad and I had of going to McDonalds on Saturdays when I was a very little girl. It was our special time where I got to be with just my dad and no younger siblings. I digress... So these Saturday mornings were spent hanging out with the diverse group of friends with which dad held company, and always have me an insight in to the social person that dad was aside from being "my dad." Anthony was one of these people, when dad began making comments about how he would like to see him, I contacted him to come visit.

He and dad spent hours talking about how dad was when he was a new teacher, discussing Anthony's new hobby of building models, looking at pictures of Anthony's recent trip back to England, and just having a great time in general.

Another connection that dad has is with the Confucius Institute at the University of Memphis. Dad and his mentor, Dr. Kung, wrote a grant together to facilitate the sharing of Chinese ideas, education, and culture through this program. One of the professors that had previously been in Memphis heard of dad's diagnosis. She sent one of the new professors now in Memphis to the house to represent her in giving her good wishes to dad. Dad was kind of confused at first because he didn't know this representative, but once we figured out what was happening, he was deeply honored that someone in China would send a stranger to our house to greet dad on her behalf. Another example of how dad touches lives across the world.

Since I last wrote, dad also had his first round of blood work done to monitor his platelets and blood counts. Dr Weir said that his tests all looked great and he thinks dad will remain healthy and strong through this round of chemo and radiation if his counts stay the way they are. Praise God!!

During this entire journey, dad has been adamant about starting a Christian fellowship at the house. He wants to begin with reaching out to men, of all ages, but in particular those with children to help them better minister to their children and lead by example. He has begun his first steps in this endeavor by having a bible study at the house in Thursday nights. I wasn't there for it last week, but heard that it went well and dad is planning for the next one tomorrow.
As many of you probably know, mom is from Germany. This past weekend, her sister and niece came from Germany for 4 days to spend time with mom and to visit dad. Sigi and Nina haven't been to Memphis since 2005, so it was great to see them here. They brought great candy and provided a much needed connection to mom's family while they were here. Mom's entire family is in Germany, so I can only imagine how difficult this has been for her not to have easy access to them.