Wednesday, March 9, 2016

Done with 42/30... Now we wait

The rough draft of the tshirt. It will also say "I wear grey for dr. Bob" and have a grey ribbon for brain cancer awareness. 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 with his radiation team 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.

Dad and the radiation mask.

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