Tuesday, December 30, 2014

Cancer Happens.

As this year comes to an end, I would like to begin this entry by recognizing and thanking everyone who have lent us so much support over the last 18 months. From everyone who donated to our GoFundMe page (and outside of the GFM site as well),  those who brought meals, gas cards, and donated hotels to those who sent thoughts and well wishes, we thank you.  The Jack and Jill Foundation for a lovely Disney Trip and BeHeadStrong for being so supportive. Tim Kleumpers and the St Thomas Aquinas Rugby Club who always make sure our large yard is maintained, whether it be leaves, snow, or landscaping-thank you.  Brian Ponick and Lindsey King for both making numerous trips to St Louis with us, the moral support is much appreciated. The individuals who have been so good about checking in with us, just knowing we are in people's thoughts reminds us that we are not alone.  And finally thank you to our family.  This has not been an easy journey, but everyone has seamlessly stepped into new roles to turn an unthinkable situation into a tolerable one.
Winter 2014

As is for most families, December has been an extremely busy month in the Richards household. While we managed to squeeze in as many festivities and holiday cheer as we could, it was difficult to stifle the dispirited undertone.  We were met with devastating news at Dow's follow up with his neurosurgeon. Not only is there tumor regrowth, but it has grown back at an alarming pace.  It has spread deeper within the brain and is now in an inoperable location. In just a few short weeks, I have seen Dow's condition steadily deteriorate.  By this, I mean his pre existing symptoms have amplified and he has started having morning nausea due to increased headaches.  His left-sided paresthesia has worsened, as well as his vision.  He struggles with time concept and his level of anxiety and agitation have seemed to increase.  Brain tumors are very similar to Alzheimer's in respect that the patient, sometimes is unaware of a change in physical and/or mental status.  This can be quite challenging and frustrating for family, friends, as well as the patient.  Recognizing the root of the change can be half the battle. This is such a multifactorial disease that any number of symptoms can come, go, or stay without any warning and without any obvious culprit.  Our experience with this has been a moderate one. It's taken a lot of trial and error to figure out how to navigate when these situations arise and it's definitely a work in progress.

Summer 2014
Our treatment options have dwindled down to two. A phase I combo chemo trial or the novacure device in combination with avastin chemo. We have spent the last couple of weeks deciding which route to go. Finally, we have chosen the novacure/avastin treatment. A phase I trial typically is when they are testing medication dosages for toxicity and effectiveness for moving into phase II. At this point in time, I'm not willing to risk Dow's quality of life for such an early stage treatment. The Novacure however, has been FDA approved and has hard data showing that it can slow and reverse tumor growth. It's a crazy looking contraption that attaches electrodes to the head and runs a low level of electrical current through the tumor cells. This prohibits the cells from completing mitosis (cell division) and keeps these cells in a state of flux until they experience cell death.  Wild huh? The device works best if worn nearly 24 hours a day. While Dow is very hesitant to sport the "Professor X" look, he knows at this point in time-it's our best option.

The Sturm und Drang that 2014 has brought us has felt sometimes unbearable. This ebb and flow has helped me learn to temper my emotions and have brought me closer to a sense of acceptance as the new year approaches. The most difficult thing to accept is that this particular disease is very rare, and completely random.  There are no genetic predispositions, you can't "New Year's Resolution" your way out of an "at-risk" behavior. This could be anyone-but it's us. I know our lives will never be the same and I know how heartbreaking it is for Dow to watch himself transform and to see the affect it has on everyone around him. I also know that while many things are different,  his heart and soul are still the same. This is not something any of us chose. Cancer happens.

Spring 2014