The unexpected 2/02/2021

We anticipated some challenges with this new chapter of Sarah's medical care. We did not expect such a large roller coaster with the ability to start Sarah's chemo (we are still waiting after two insurance denials and now an appeal to the manufacturer, which we were warned about in the very begging, but it is taking even longer than the pros had guessed) or the challenges COVID-19 would bring. In our January telemedicine appointment with Dr. Blakely at Johns Hopkins, I suggested keeping the kids out of school to minimize risk of exposing Sarah to COVID while I act as her medical advocate since Dr Blondin Sarah’s neuro oncologist a Yale Ahmad told us she CANNOT get covid. Dr. Blakeley encouraged my husband and me to return the kids to school, citing that this is a long road and that we can't keep them out of school forever. Then, in the same breath, she told Sarah and me to bundle up, double mask, and drive to Yale for any and all appointments with the windows down and heat on. I couldn't help but wonder if she realized that the couple hundred miles between CT and Baltimore makes for much colder weather and a lot more snow. Well, as I anticipated, we had snow. A nor'easter barreled through on February 1 and Sarah's appointment was on February 2, we didn't have a choice but to put Dr. Blakeley's prescription to the test. Knowing a storm was coming, and knowing that our parents' half-mile driveway provides challenges to get in/out during a storm, Sarah left her all-wheel-drive Subaru with me on Sunday night. On Monday, we rode out the storm. Then on Tuesday morning, Sarah strapped on the new snowshoes Santa brought her and hiked with our Mom (who was bringing the toboggan with the emergency overnight bag) to meet me at the end of the driveway for the cold drive to New Haven. Fortunately, the weather had warmed to a brisk 35. We made it to New Haven without incident, for what we now see is the third of Sarah's many future MRIs (Next one March 3).

After our consult with Dr. Blondin to review the images we spent more time collecting and distributing paperwork to get Sarah on the Mekinist and to get images to Dr. Blakeley. The MRI Sarah got was twice as powerful as the last MRI and provided 3 times as many slides allowing her Drs to get a much better view. Tthe contrast that she was given was applied at a set time and a set rate so that subsequent MRIs can be repeated exactly the same and any changes can be measured and quantified.

We drove back home in rush hour traffic with a new storm that added a touch more snow and made for some very exciting driving. We watched as the car in front of us slid through the red light at the intersection we were approaching, but with some nifty driving skills and the quality of the Subaru we safely came to a stop at the light. We made it home in one piece.