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

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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.

Day 10 of 42/30

The past week of radiation and chemotherapy has been fairly uneventful. This is a good thing! Though dad initially has some decreased energy, he has rebounded for the most part. He had some neuropathy pain in his knees and some restless nights. He started some herbal supplements to help with the aches and side effects of the treatment, it seems to helping!

We are also waiting to hear back from Dr. Pandey regarding adding another supplement called Boswellia serrata, also known as frankincense (one of the gifts presented to Jesus!). Studies have shown that frankincense helps decrease cerebral edema is 2/3 's of patients, and it works on different anti-inflammatory pathways than typical meds such as steroids, which cause muscle atrophy and weakness long term. Not to mention they are very painful to withdrawal from. Fortunately, dad is on what's considered to be a very low dose of steroids for this condition. The frankincense would be best if we got it from a compound pharmacy, so once we get the approval, we will check insurance to see if it's something they can help cover.

Last weekend, dad's sister, Paula and Mark made it in town to visit. Mark is able to come every other weekend, so it's great when he comes. Paula is in Atlanta, so whenever she has a chance, she has made it a point to come visit. She is the "caretaker" sister. She has always been the one to make sure she is there for any family member that is sick, so it's nice to be on the receiving end of it.

We are still waiting on the feedback from Dr. Pandey regarding some trials. Sheng, a friend from church, has also offered his expertise regarding some of the mutations. He is a Lukemia researcher at St. Jude, and gave some insight on the importance of some of the mutations with regard to Lukemia treatment. He has done some additional academic research to try to help us narrow some trials for this initial stage, but also will be helpful in case we have to look in to trials for treatment of recurrent tumor. Another good friend of mine has also been so gracious as to offer her help and have her husband look at the mutations as well. Karen's husband Atman also works for St. Jude. It's such a blessing to have that hospital in our city because of the friends that specialize in cancers that work there, and their willingness to lend their skills.

Friday night, Martin (Katherine's fiancé) set up a fire pit and we made smores. Annabelle was mesmerized by the fire and it was warm enough that the pit was complimentary rather than needed for comfort while being outside. Diego came by that night to try his first smore. He became an expert quickly, toasting the graham crackers with chocolate on them, softening the chocolate just enough that it melted around the marshmallow when all the parts were put together.

Dad's long time friend Greg made his way to Memphis for a couple of days this week. He is a pilot and lives in Rhode Island. He brought dad some great salt water taffy, per his request, and hung out for a couple of days. Some of our closest friends have offered to hang out with mom and/or dad while dad is getting his radiation, and Greg was no exception. Dad, of course, had to show him the pyramid/Bass Pro Shop while he was here. I didn't get to see him after that, but I can only imagine they had a good time.

Dad has also had his eyes looked at again by Dr. Diaz at the VA. She seems to think that the loss of periphery vision and difficulty with distance seeing is a result of the optic nerve being compressed by the tumor/swelling. Dad's eyes look good overall and she is having him do some drops to reduce the pressure from the Keppra, and some sort of therapy to work out the rods and cones.

There is a meal sign up if you would like to contribute in that way. If you would like the link to sign up, please email or text mom or me.

Your prayers continue to be powerful as dad is still feeling relatively well and even improving a little. Thank you so much!