2/13/2020 9:47pm

Not every couple plans on spending their 4 month wedding anniversary at the neuro-oncologist! Haha we ended up getting there late because of traffic, and also had to wait an hour and a half in the waiting room. After we finally got seen, they took blood and said his numbers were great. Then we met with the oncologist who immediately started telling us he needs to start chemo again soon, double the dose. She said that this round would be 5 days on chemo, 2 days off, continually for 28 days at a time. Then he would have a week break, and back on chemo again basically for a year. Josiah and I were floored to hear this right off the bat. We asked if she had taken a look at his MRI yet, and she said no.... Uhhh, so how do you know what the treatment plan should be next? Apparently this is their protocol for everyone with GBM. This was a surprise to us as well. After she finally looked at the MRI, she said that yeah he still needs to start chemo again as well as the Optune head gear which he would wear for 2 years sending electric pulses to try to stop the cancer growth. The whole time we felt like she was just throwing the generic plan at us without treating him like a unique case with a personalized plan. She didn't even talk us through what she wanted the treatment plan to be. She just said this is what is happening. So we were pretty upset, and we have talked a lot today about it. We have decided to do research on other cancer treatment centers that specialize in GBM. A place that will actually look at his MRI before giving the generic plan. She isn't a bad oncologist (maybe), but at the end of the day, we think she is just not the right one for us. We have already reached out to a few places. If it means flying to a different state once a month for him to be seen by a more personable neuro-oncologist, then so be it. Nothing is more important than his health. This is life or death, not treatment for a sinus infection. While there are similar cases of GBM, every body is different. Every tumor is different. Every craniotomy (brain surgery to remove a tumor) is different. The way a body takes to radiation and chemo is different. And so much more. We ultimately feel that maybe feeling this way after the visit could be a blessing. If it meant this to get the push we need to be in the right direction and place for him to get treatment, then it is all for the best. Thank you for your prayers, everyone! :)