Hello all. Thank you for your continued interest in how our family is doing with this life altering diagnosis, and its impending reality. We feel blessed to have such a strong network of people from the communities we have shared with others. As you likely know, we packed up and moved to Bismarck ND last year. The pandemic was the driver of that as there were limited work options and best of all, it allows us the  opportunity to all live in one house as well. Family time with random hugs, makes my heart flutter for sure!

A few months ago I had reached the extent of my treatment was told to look at clinical trials for my hope. Ultimately we landed at The IvyBrain Tumor Cancer Center at the The Barrow Neurological Institute in Phoenix AZ. They are well known for their Advancement in studying brain cancers.

Although their pharmacological clinical trial drugs did not work for me, as the blood brain barrier is tricky business. They did perform another surgery  and removed all they could of the tumor mass. With motor mapping, they tried to minimize the effect on my motor pathways however I was left with some debilitating symptoms which am trying to overcome through physical, cognitive, and occupational therapies. 

At this point we know there are still cancer cells, and the gluoblastoma will  continue to progress, as that is the nature of the beast, however we have found another potential treatment which could extend my life by maybe a couple years. It’s an electrode head device I would need to wear almost 24/7, called the OpTune. This device is very expensive and we are currently appealing to insurance. Hopefully we will know within next couple of weeks if it’s approved. 

If you work for a Government agency and have a Shared Leave program that you would like to contribute toward, my family is deeply grateful. I’m hoping to have enough coverage to extend my medical insurance to the end of this year. I know so many of you have contributed a lot already which has made such an enormous impact on my family. If you choose to contribute more leave, please reach out to my sister-in-law, Traci Orr @ 360-819-3818.

Thank you once again for your kindness, your support and your generosity, My family overflows with gratitude. Love Karen