20 days after surgery

On Sunday, we gathered as our usual Sunday lunch group (family, john, and Mable) and headed out to Mayuri. We used to eat Mayuri almost every Sunday from the time I was pregnant Mia, until about a year ago. It was our family outing and we really like Indian food. It is pretty close to the food we had when we visited India, and we love the owners. They treat us like family and have watched the girls grow from babies in car seats to the little balls of personalities they are now.

Beginning about a year ago, we started to eat more at mom and dad's house, where dad would cook a family size meal and we would just hang around and chat afterward with no rush to go anywhere. It's great and we always sprinkle some Mayuri in every few weeks for good measure.

Mariam has been over regularly to cook and ensure we have the best food available for dad and make sure there is always something to eat. There are about 6-8 people at the house around dinner time every night, so we end up with a buffet style dinner. She leaves us tomorrow to return to Egypt and will be greatly missed.

Monday, dad had his oncology appointment at the VA to discuss treatment options. After a long talk and then calling and talking to them again today, mom and dad decided to use the VA instead of West Clinic for his chemo and radiation. Dad LOVES the VA, and though I think of it as a bland hospital, that's where he wants to go, so that's where he will go. The oncologist there also practices at the West Clinic, and assured dad that the treatment is comparable.

Today, he had his neurosurgeon appointment, and got his staples taken out. I asked if it hurt, and you can only guess dad's response.

"Well, I don't know what you mean by that. It wasn't any more discomfort than I had anticipated it would be when someone pulls staples that they shot in to your head out."

"Ok. Fair enough dad. But did it hurt?"

"Pain is relative."

"Ok... Never mind."

I think he's fine... Lol. His neurosurgeon also told dad that he could have a Guinness and smoke a cigar with his smoke hole buddies, so I think that lifted his spirits a little. He's anticipating being able to break up his day a little more and get out of the house.

He has been more tired overall. Also, he confuses my littlest ones when he first sees them each night. As soon as he is sure which one is which, he remembers, but it's still a little thing that's different than before. I think it's more a vision thing, but the tumor was pressing on his optic nerve, so hopefully that's some swelling that is still subsiding.

All three of dad's sisters will be coming in town to visit at some point this week. Paula came today, and Tommye Kay and Shela will be here Friday. That's also when Mark and Wendy will be back, and Katherine and Martin come home Sunday. It will be a completely full house!

We had hoped to get the genome results of the tumor today, but haven't heard back about that yet. I am eagerly awaiting those results because throughout all of my research, there are various target mutations that stand out as making the tumor more susceptible to the treatments which will be provided. They are meeting with the oncologist again soon to set up the beginning of chemo and radiation, so hopefully we will know before then!

I apologize for the short post, but I have become increasingly tired these past few weeks. My mind races, scanning through the data I've read, testimonials, clinical trial data... Trying to make sure I get the best information, present it to my family with confidence, and hopefully we can make the best decision with dad to ensure we have him as long as possible, with the best quality of life as possible. Like Karen and I were talking about earlier... I'm the kind of person that gathers all of the facts, plans for the worst, and hopes for the best. In this situation, I am also living each moment with dad in the present and and taking full advantage of the dad we still have right now.

Thank you all for your continued prayers and visits. They mean so much more than you could know.

Day 17 after surgery

As I wrote the title for this post, I realized it looks like it's been a while since we were all huddled in the family room at Methodist University hospital, waiting for the calls from the surgical team for updates on dad. That day, that call, has changed our lives. For those of you who have been pregnant, do remember thinking, "Ugh! I have to wait 17 more days to see my precious baby! 17 days may as well be 17 years!"

For me, these past 17 days have flown by, with everything concerning dad, and everything else seems to drag on in slow motion. I have a feeling that days will be reflected on as fleeting moments until there is some end, or at least (hopefully) a slowing down in this journey. Each moment is precious. As they should be anyway I guess. I've always struggled with balancing living each moment to the fullest and being neglectful of future planning for my intense focus on the present. Living today as if you won't have a tomorrow, carries new weight for me now.

My background is in Rehabilitation Counseling. In my masters program, I focused on dual diagnosis of acquired disabilities and mental health. As I watch my dad, I see things that are not my dad. Little things that prohibit him from driving and being left alone, among other things. I watch constantly to gauge whether or not he is getting worse or better in certain areas and try to keep in mind that the meds may have some impact on his behaviors. At the same time, I know there is still swelling, and he had someone cut in to his brain, move it around, and sew it back up. There's bound to be residual effect from that and only time (and God) will heal his brain.

As the days go by, I worry less and less about these quirks of dad's and focus more on simply spending time with him and letting him see the girls.

The girls love being at the house. The littlest ones are 1 and 2, and though they may not hang around dad like I would want them to, they love cuddling him and giving him hugs and kisses like always. They don't understand the potential gravity of the situation at hand, and I almost envy how they are experiencing the world around them right now. Without having skipped a beat and living full of sass, wonder, and excitement... Just like before everything happened.

One good thing about this GBM is that we always have someone at the house right now. There is no shortage of love and compassion lifting us up and holding our hands through all of this.

Our long time friend, Karen, and her family came by today with some soup and the most ridiculously amazing kale salad. She also played her ukulele for dad and got him to relax a little.

They all joined mom and dad tonight for a symphony performance at Buckman along with Mariam. Dad loves, and needs music. Especially now, when it seems to be the only thing that keeps him turned down a notch.

It rained most of the day today. Leading to plenty of puddles being splashed in and mom finding a huge night crawler for Mia to transport to the grass, which Annabelle referred to as a "little snake" when I asked about her day at bed time.

Dad watched the girls play, entertained guests, ate good food, and listened to good music. He was a little slower today and laid down with his eyes closed more than I have seen these past few days, but I guess that's what happens when you live each moment with as much enthusiasm as dad is right now.

Hildegard and her husband also brought some great classic German food which included one of dad's favorite things... rotkraut. Yum!!

Overall, it was a good day. I don't know about dad... But I already miss Katherine and Martin being home and can't wait for Marky and Wendy to come back.

Thanks for your continued prayer and support. Please don't let up, they are still very much needed! And pray for lots of snow tomorrow night! Lol.

(Because I only have video of Karen playing, I'll post Mia and Annabelle playing in the rain as today's picture)

15 and 16 days after surgery

For some reason, this is the 4th time I am writing this. I don't write down and then transfer what I am going to say, I simply write and edit here and there when I'm done. I've written this post 3 times in its entirety and gone to upload the picture, and then loose everything I've written... So... Here it is again. Lol.

The past couple of days have gone by seamlessly for the most part. Dad was put back on the higher steroid dose and the Keppra to help reduce the swelling and ward off the possibility of seizures. Because of this, he has been on "go" during the day. Wanting to run errands and calling everyone he can think of simply to talk with no end in sight. With this comes increased impulsivity and a slight stubbornness.

Yesterday was Katherine's last day in Memphis before going on a long planned trip with her close friends and their spouses/significant others. Dad took full advantage of this and had her run him around the city all day. By the time I came over in the early evening, they were both tired and just hanging around. I know the decision to follow through with her plans must have been a difficult one to make, but the timing, honestly, couldn't have been more perfect. Dad is doing well, he has a constant flow of friends, it's before dad starts his standard of care (SOC) of chemo/radiation, and it's before the semester starts. Katherine deserves this time to relax and enjoy herself, and she knows that dad will answer anytime she calls, and that we will be here for him while she is gone. God's timing is always perfect.

Diego came by this evening and brought food and his cello. Unbeknownst to him, dad had invited a houseful of people to hear him play. Uday and his family, David, John, Mariam, Mable, and of course we were all there to enjoy Bach's 4th Cello Suite. Adelyn even loved listening, and dancing while he played, clapping between movements.

It's so comforting to know that dad's friends aren't the type to disappear in difficult times. They have swarmed him and showered him with love and understanding. We are so grateful for this outpouring of support in this time and knowing it will help hold us over for when dad begins his SOC and will be more susceptible to infections in large groups of people (and grandchildren).

Mom took dad to pick Mia up from school today. This is a wonderful thing that allows for a sense of normalcy. Before dad was diagnosed, he would pick Mia up from school, on days that he was able, and they would go get ice cream and read the funnies together. Today, mom dropped them off at Baskin Robbins, and let them have their quality alone time. Mia loves her Opa and has expressed that it's not fair that this is happening to him. When we told her about his diagnosis, we cried together and let the overwhelming sadness and gravity of the situation pour over us. She asked why God would let this happen. I told her that, at that moment, I was so angry with God for letting this happen to him, and that even though I know he has a plan, it just didn't align with what I thought I wanted it to be. That's where I was at that time, and it was ok if she was too. Time would pass and God would show us the greater plan.

Speaking of plans...When dad went to the West Clinic the other day, the genome of the tumor wasn't ready. We want there to be some sort of target mutation that will suggest the tumor will be responsive to the SOC. Our goal is to halt the growth or reduce the size of the tumor so that dad will be able to live a long time, and with a good quality of life. We don't have the option of removing dad's tumor.

I sent dad's MRIs to two different Brain Cancer Centers, with the best surgical teams for this cancer, and both called me and confirmed that Dr. Sorensen did a wonderful subtotal resection, and that there is nothing more that can be done surgically.

Armed with that knowledge, I am now slightly changing my direction while searching for clinical trials. I really like the immunotherapy trials. It may be because i understand the concept the best, but they really do make sense! Part of the beast of this cancer is that dad's own body essentially protects it from treatment. The natural blood brain barrier makes treating it with medication (even chemotherapy) very difficult. These immunotherapy trials focus on (very simplistic explanation) training dad's body to identify and attack the tumor in his brain. This idea seems like a common sense one that a really really smart person decided to develop and implement.

There are other trials out there that use different medications, but I'm not educated enough in this field to fully understand the techniques and how they anticipate it helping long term. That's not to say one of those trials isn't THE trial, I just don't understand them as well. Nonetheless, I have them printed out, and will move forward with contacting their trial teams and see if a person can better explain it to me. To me, it seems like it would be much more risky to attempt to get a drug to pass the blood brain barrier and ensure it is strong enough to halt or kill the tumor, and not harm good brain tissue at the same time. I'm willing to learn though...

I wish I could upload the video of Diego playing, but a picture collage will have to do. Thank you again for your continued prayers and support. Our family, and dad, greatly appreciate it.

There are two new entries, a quite a few great pictures on Karen's blog here: http://www.karenpulferfocht.com/blog/drbobsbrain

Day 14 after surgery

Unfortunately, I haven't seen or talked to dad today...

He had an appointment with Dr. Pandey at the West Clinic, which went very well according to Mark and Katherine. She was very upbeat and thorough, which is always nice in these circumstances. She gave some promising information regarding the treatment options as well as alternative clinical trials, which I will be looking in to.

After the appointment, they went to lunch and Mark had to go back to Charlotte. He will be back Martin Luther King weekend with Wendy to visit again.

I mentioned yesterday that I had noticed dad was a little more distracted and moving a little slower. These symptoms became worse this morning with dad being a little more confused and disoriented, along with some weakness on his left side. Katherine and mom opted to take him to the VA, and obtain a CT scan to rule out anything serious that we needed to be aware of.

After 6 hours at the VA, again causing me to be frustrated with this hospital, they got in to the CT and were given the results. He has some swelling and a little bit of blood, but nothing that the consulting surgeon was concerned with.

His steroids have been adjusted and hopefully, will rectify the symptoms somewhat.

Please continue to pray. Thanks again.

12 and 13 days after surgery

The past couple of days have been fairly productive despite mom and dad not returning back to work at this time. Someone is with dad at all times. He needs someone right now as he heals, but more I think we need him too. We need to be in dad's presence and hear him talking, joking, singing...

Clinging to every word he says and tune he belts out knowing there is a possibility that it could all come to an end much sooner than any of us had ever anticipated.

Dad went to Collierville to visit his coworkers yesterday. He seems to think they were more excited to see Mark, Katherine, and mom, but I bet they were happy to see dad too. It was inservice, so his kids weren't there, but it was suggested that he make them a video message. Dad loves his job and has always had a genuine interest in his students and their ability and enthusiasm to learn. I'm sure his video message to them will be great.

There was a follow up with VA today and he seemed to check out according to them. I wasn't there, but am frustrated with them nonetheless. Dad didn't see an oncologist there and though we may get his treatment at West Clinic, it would have been nice to have a consult with the VA to see what they offer so that we can go to the West Clinic appointment armed with more information with which to make a good decision regarding dad's care and treatment protocol.

Dad's friend, Uday, and his wife, Sunita, came by yesterday and she brought some amazing homemade Indian food. It was so good that Katherine (who is allergic to lentils and chickpeas) ate enough for her tongue to go numb. It was REALLY good!

Almost every single day that Mariam has been in town, she has been busy making dishes for dad that we can freeze and pull out when the meals stop coming in. Her cooking is a true labor of love and she has worked hard gathering ingredients to fit the specifications of the recipes in a cancer fighting cookbook. So far, they have been great!

Dad seems a little more tired these past couple of days. When I see him in the early evening, he is a little slower and tends to, what appears, kind of daydream. He has some swelling where his glasses press against the incision on the right side, but hopefully they can confirm that these things are normal at this point where he is still recovering from the surgery.

I have made it a point to try and bring the girls by every evening just to have their little loving and energetic personalities around dad. He seems to appreciate having them around.

Thank you for your continued love and support. Please say a special prayer that we will hear good news about the markers of dad's tumor, and continue to pray for the clinical trials to fall in to place and for the DCVAX to become FDA approved and available to everyone with this diagnosis very soon!

11 Days after surgery

Today was such a moving day. James, Katherine, Mark, and I went to the ICF Sunday school class to be present when the class prayed for our family and dad. Mark's friends, Paul and his wife, were also there in support of us. It was so powerful. To be in a room full of internationals that speak English as their second language, and to hear them pray so powerfully is something that words cannot describe. Their message, though sometimes in very broken English, was clear and purposeful. They love my dad and mom, and our family so deeply.

We had a wonderful "traditional" Sunday lunch with family. Before this, we would always get together with Mable and John, and eat lunch as a family. It's the little things that help make things feel more normal, despite the looming uncertainties.

Dr. Kung and his wife, Lena, came by to visit dad today. He has been such a powerful person in my dad's life. Dr. Kung was dad's mentor when he was in college, and they grew to become friends and undertake very important projects that greatly benefit our community here in Memphis. Dad has traveled to China alongside Dr. Kung as part of a teacher exchange program many times. In addition, dad helped him write a grant to support the blending of culture and ideas with the Confucius Institute at the University of Memphis. Just more beautiful people that come to visit dad and show how truly amazing dad is as an educator and a person.

Our "aunt" Karen came today to photograph our family. I mentioned yesterday that she has offered to chronicle our journey through this time, despite the outcome. She is posting her beautiful pictures, telling our story, in her blog. You can follow along below.

Please continue to pray for us and for dad. We are taking these next couple of weeks and encouraging dad to rest to ensure he is strong when he begins his chemo and radiation regimen. Then the real battle will begin and we will need the love and support of our friends and family just as much as we have at the beginning of this journey. Thank you again.

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

Days 9 and 10 after surgery

The past couple of days have been very interesting. Dad's brain is working in overdrive and he is constantly talking and singing. Blues songs and gospel hymns. To anyone that will listen; visitors, neighbors going from their car to their house, family... It's been quite entertaining. The neurosurgeon resident took dad off of the Keppra (anti seizure medication) today and reduced his steroid, hopefully this will help temper dad's enthusiasm a bit and help everyone caring for him relax a bit.

Our long time family friend Mariam was so selfless and sweet to fly to Memphis from her home in Egypt to help out and be a support system for our family during this time. The past two days she has spent much of her time cooking for everyone. She has some great recipes from a cancer fighting cookbook and has also made some authentic Egyptian dishes that are her mom's recipes. It's been a real treat. We met Mariam through church, just another example of God providing for us.

Our "aunt" Karen came by yesterday and took some great pictures of dad. She is a photojournalist and so graciously offered to document our journey in pictures as we move forward. We will cherish her work, regardless of the outcome of the GBM, and are so blessed by her and her family.

Our Sunday school class is dedicating a portion of the lesson to explicitly praying for dad. If you would like to join us, please text me or mom and we can give you directions to the ICF class at Second Presbyterian. The Sunday school class starts at 9:45. Hopefully these prayer warriors will be heard and a miracle will happen with dad's diagnosis. We have a 9 year GBM survivor in our Sunday school class. His tumor situation was a little different than dad's but it's still encouraging.

I will be setting up a "take them a meal" site for people to sign up to bring food a little later in the week. We have had many people ask about this, so please know it will be organized soon.

Thank you again for your thoughts and prayers.