“Hope is the pillar that holds up the world.”

Some good news today. First of all, the snails at the insurance company have approved the out-of-network exemption for the neuro-oncologist at Dana Farber, and now we are just waiting for insurance and DFCI to be on the same page so we can schedule the initial appointment. Second, Eric was able to get the fMRI scheduled for late-August, and then it got moved to 8/11. He saw the neurosurgeon on 8/12, who said that while some surgeons prefer to do the biopsy and resection in the same surgery, he prefers to do the biopsy stereotactically and then later do the surgery once the pathology/genetic results are back so he can be certain what he is resecting. I guess if it's a very slow-growing tumor, it won't make much difference, so we are trusting his expertise. 

It was strange to hear that they would do a stereotactic surgery, because that is how I used to do surgeries on mice in graduate school. I was injecting microRNAs targeting the Huntingtin mRNA into mouse models of Huntingtons disease. I would anesthetize the mouse, peel away the skin from the skull, position the machine over the striatum (navigating by the sutures in the skull), drill a small burr hole in the skull, and insert the needle slowly with the knob on the stereotax. Then the needle would very slowly inject the solution containing the microRNAs. I would then suture the skin and put the mouse on a warming mat to wake up. They would awaken drunkenly, staggering around, but they recovered quickly and their skin healed in a few days. It's odd to imaging the same procedure happening to Eric. However, it is a minor surgery, compared to a craniotomy and total resection of course. Regarding the mice, the microRNAs worked at decreasing mutant Huntingtin protein, but there was always glial inflammation around the injected cells. For Eric, it would be great if we could just get rid of the glia in the area as they are very much misbehaving. 

Anyways, the neurosurgeon wanted the results of the fMRI before scheduling the biopsy, and he also wanted to meet with the "tumor board" on 8/15 prior to making a plan (the conglomerate of surgeons and oncologists at BMC that meet weekly to review cases/surgical and medical treatment plans). 

The second bit of good news is that the fMRI report resulted in Eric's myChart account yesterday, and it seems like the tumor doesn't involve the "eloquent" area of the brain that controls movement and speech. There is healthy brain between the tumor and the parts of Eric's brain that activated when they asked him to speak or move his hands during the imaging. We haven't heard the neurosurgeon's opinion of the fMRI result yet, but to me the report suggests they will likely be able to do a total resection. As the extent of surgical resection is very tied to outcomes in low-grade gliomas, that is very good news. 

Nothing else new to report. I'll update this when we meet with the neuro-oncologist and hear back from the neurosurgeon. Otherwise, we are all doing alright, adjusting to this new reality. Family has returned home (they'll be back when Eric has the resection), the kids are starting to sleep a little better again (thank heavens), and our routines are slowly settling back into place. Eric has been on a surgery rotation so has been having to get up early and work long hours, and I have the new worry of him having a seizure due to sleep deprivation. But so far the Keppra has been doing its job. Quinn saw a therapist and actually loved it (to all our surprise). The therapist said, "She is so smart and self-aware. I think she is going to be okay."

So that's our news, some hopeful things for today. We are hopeful that we are all going to be okay.