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