Jan 23 - A Warrior
Our sweet boy has been a warrior over the last four days in the hospital. He’s been given three different types of chemo and just as many anti-nausea meds. He’s felt downright awful but has not complained once.
OHSU is known as a teaching hospital. We assumed this title only applied to medical students. Little did we know that we as parents would become students in this amazing classroom this week. We’ve been quizzed on the roles of cells, platelets, and are learning medical acronyms left and right.
In between stays in the hospital to receive chemo - our role at home in his healthcare will be critical. His health will be fragile. In full transparency - we have been overwhelmed and scared by our lessons this week.
Bradley and I are so blessed to have a community of love behind us, but also each other. As we poured over information together it was often filled with anxious tears and reassuring hugs.
We could not feel more confident and appreciative in the treatment roadmap that his medical team has designed and implemented for him.
Unfortunately someone who has never laid eyes on our son, who is likely without any medical degrees, and whose work is based in averages, money and algorithms - not personalized healthcare - does not place the same amount of trust in his amazing team.
We should be heading home (six hours away) tomorrow and then receiving a very simple injection at home or any local healthcare facility on Monday. BUT our insurance will only allow us to receive this simple injection here. “The plan didn’t match their algorithm.”
So we will stay a little longer, love on our warrior, and most likely take in a few extra lessons at this teaching hospital - at least it’s “in person instruction” and who knows - maybe we will send the insurance companies some algorithms of our own.
