I just saw a post on wordpress’s main page before I clicked the little pencil icon to compose a message, that looked like this…
You’ve been granted the power to predict the future! The catch — each time you use your power, it costs you one day (as in, you’ll live one day less). How would you use this power, i[f] at all?
So, would you? Right now I am not so sure I can handle it.
I feel as though I am on a cliff. Evan is in the neurosurgical intensive care unit in a hospital in Charlotte. I know you may be wondering what happened to Chapel Hill. Quite simply, it wasn’t an option yesterday. As you may have read we live about 30 minutes north of Charlotte. Evan had a series of seizures yesterday that essentially didn’t break. He had to be put into a medically induced coma to stop the seizures from occurring. On top of this, his body is showing signs of an infection. He had a temp, his white blood cell counts were four times the norm, his kidneys weren’t working. This is called sepsis. This is horrifying for several reasons and this family has a particularly horrifying past with sepsis. You see, Evan has two siblings, one of which passed almost four years ago. She had a gallstone stuck in a duct for some time, required surgery to remove it, contracted pancrititis and after a series of more surgeries, became septic. She fought a very long time, but it was too much. So, as you can imagine this is critical. No, it is devastating. Evan is fighting two things: infection and seizures. He has been given a ton of antibiotics and steroids and is currently stable.
He hasn’t had any seizure activity for the last few hours; his body temperature is back down to 98.8. His blood pressure is normal without the help of medicine and he has some urine output. He has been breathing on top of the ventilator. He is fighting. This seems positive, which is why I am able to write right now, but there is a very long road ahead. His doctors don’t want to be all doom and gloom all the time, but they don’t want to give us false hope. I don’t want to do that for you.
This doesn’t change the fact that he has a deadly tumor that is growing. We are essentially borrowing time and with a glioblastoma you aren’t given a lot of it to begin with. I am staying positive because the negative is very real; it is very close. I don’t want anyone out there reading this to think he is better. He is fighting. He is trying. He is better than yesterday and hopefully that is something I can echo in the days to come. That is a step of thousands to come, but it is in a much better direction than he was in earlier.
So for those of you reading this for support because you are suffering from a brain tumor or know someone who is, don’t give up. There are cases of long term survivors and I am sure that road has not been easy. I hope that Evan will be one of those cases. That’s all I can do. That’s all any of us can do with a glioblastoma. For family and friends reading this, thank you for your support. I will try to keep things updated and I am sure you understand that it is very difficult to accurately record what is going on. I know you care so I am trying, but with a possible grim outcome it is difficult to jump online and convey that.
I am comforted by the fact that I have no doubt Evan knows I am here and he knows he is loved, not just by me, but by his family and friends. There is not one incidence, health wise, where I have not been with Evan since I met him. I slept in one of these hospital chairs that I am now in countless times: when he sprained his ankle playing basketball and insisted he broke it and needed to go to the ER, when he fell off the roof while working in WA, when he was taken back for MRIs to diagnose his tumor, when he got too dehydrated in Maine at the SCA event, when I was 8 months pregnant and he had his first EEG monitoring session. I remember once he had severe stomach issues and after 8 hours in the ER he was admitted to the cancer unit of this hospital (before radiation, after learning about his tumor); I was six or seven months pregnant and I woke up to Evan standing over me. It was 5am and he was just standing there looking down at me; it was a moment in a horror movie before a person gets smothered with a pillow, but I realized he had a stethoscope. After asking him what in the world he was doing he explained he wanted to talk to Addi and hear her moving around. We later slipped the stethoscope in my bag and Addi now plays with it when she is in Doc McStuffins mode. I have never left his side and I know he knows that. He knows I am here and he is not alone and that means everything right now. I am not going anywhere and I hope he isn’t either.
…and now a photo blast