Thursday, August 20, 2015

Eli two days ago after a haircut.
Eli woke up with double vision and nausea. We had a rough start today. It was stormy, I had an issue with something else that is important to me, then I couldn’t get the car to crank (I had accidentally locked it up when I unknowingly pulled on the steering wheel as I got in), then he told me he was having trouble seeing. By lunch his eyes calmed down, and he ate lunch. He is what I call a “Game Day” patient. He wanted the wheelchair because he said he could not walk straight because he could not see well, and really “wanted” to throw up while we were waiting. He was flushing, so I could tell he was worried about something, which was that his belly felt worse. (He was completely normal yesterday, nothing at all) He had his normal treatment scheduled for today, so thankfully, we were already going to the hospital. When the doctor came in to do his little neurological exam (touch my finger, touch your nose, raise your leg, move your eyes, walk this line, etc.), he did completely fine, complained of nothing, passed with flying colors. Of course, the doctor is looking at me like “what world do you live in.” So, not really anything to do, but watch and wait (and live every day under the weight of the sky) to see if it happens again, which I expect it to increase. I appreciate the “momcologists” that have messaged me, they know what it is like. Some kids have double vision that comes and goes throughout treatment, and are just susceptible to it when overly tired, or because of past treatment. So, I will hope it is that, overly tired because he went to bed late, but I wouldn’t expect him to have nausea. Anyway, most kids sort of have custom symptoms because each kid is different, their bodies are different, tumors are in different places, presented differently. When Eli was first diagnosed in 2011, looking back, his main symptoms were mild cold symptoms (which I wrote that he is having), neck pain (because the originating tumor was at the back of his neck, but it was resected, and he has no pain there, and there is no tumor there), nausea in the morning, (which he suddenly has), and eventually when the cancer had finally gotten out of control, double vision (which today is the first complaint he has ever had of that since before his original brain surgery. It corrected right after that surgery, and he has never had a problem since…) So, that’s why double vision and nausea with mild cold symptoms is a big deal to me. (Why the mild cold symptoms? Not really sure. The olfactory nerves up in the brain, I guess, the proximity of the sinus cavities, maybe. Eli does have a frontal lobe lesion, but I don’t know exactly).

I always like to think that this page, and my blog at is for you. So, that you can be informed, feel connected, and continue to pray for Eli. I always kind of think of it as my work and my hand in Eli’s healing, keeping the prayers going. But, it’s for me. I need it. Thank you for allowing me to reach out to you when I need to.

While preparing to update you, because I know that you are watching for it, I sat down to my stress-food lunch, and wanted to lead into the blog with something depictive of my morning and how I felt, so I googled “Hanging Cloud”, thinking the obvious: quotes about self-pity, perpetual sadness, living with sadness. Google shared with me that Hanging Cloud is the name of a Indian warrior from the Wisconsin territory in the 1800’s. The daughter of the chief of her band, she was a “full warrior”, meaning she was equal to the men in responsibility, skill, participation and accolades expected of a warrior. She was a legend in the Northern Plains among the native Americans and the settlers because of her conquests and because she fought and killed to defend her people. She was the pride her father, and a confident woman of purpose. The information infers that her status and accomplishments were important to her as well. When her chief father died, she defended her village from a massive attack, and one researcher wrote that she was most proud of that time in her life as a warrior. She did not marry a native American because none could prove to be her superior. So, she married three white men. Yeah, that didn’t work out so well, one left her as soon as they had a child, the other two left her for white women. I think she would have done better with an inferior Indian warrior. She had six children and died in 1919.

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