Friday, April 22, 2005


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the beginning

The fight begins

fighting the good fight

The yeast infection was only the beginning. And we knew where it all was coming from. Seemed like 20 different doctors were in and out of that room all day. Then they were on to their next patient in the ward. They would wash their hands each time, but they NEVER WASHED THEIR STETHESCOPE!!! Not once.

A multitude of nasty bugs set up house on A's body. Including the dreaded VRE. We were assured that as long as all those bugs stayed OUTSIDE of his body, he would be fine. We started wearing masks when we visited him. To treat the nasties, A recieved a variety of experimental not-quite-approved-by-FDA-yet antibiotics which we were told we quite toxic. He got this stuff ALONG WITH the chemo. I think they upped the strength of the chemo drugs, too. I remember one day a nurse came to administer a dose. It was apparently very nasty stuff, those who had given it to him before wore protective clothing and a few layers of gloves. This nurse just had gloves on. She went to hook it up to the IV, when something slipped and a few drops of the stuff got on her sleeve. She flipped out and started screaming at me "YOU DISTRACTED ME!!! THIS STUFF CAN EAT THROUGH YOUR SKIN!!! LOOK WHAT YOU DID!!!"

Bitch. Learn how to protect yourself, and stop watching the fucking TV while you're doing it.

I do have to say, for Jamie's sake, that the vast majority of the nurses in the neurointensive care ward were the most wonderful people in the world. They got pretty attached to us and to A, even though they never heard him talk. They heard enough stories from us that they felt they knew him. The one guy, Gregg, had 4 kids that were home schooled, lived on a real working farm that they ran themselves, and STILL occasionally came in on his days off to check up on A.

Just wonderful people.

During this time, I was a zombie...set on automatic. I became the mouthpiece for the family. I would go to church on sunday, and have to face a multitude of questions from people. "how is he? how are your parents? how is E doing?" I would put on my brave face and try to answer without breaking down. "oh, he thinks he might have felt the doctor touching his arm yesterday" and they would smile and say "wonderful!" and I would die a little inside. My hope was wearing out.

A few times a week my mom would come into my bedroom in the morning and just break down crying on my shoulder. "I'm afraid he's going to die! what will we do? He's going to die!" How could I comfort her? I was fast losing hope myself, and I didn't have anyone's shoulder to cry on. My friends were still in school. I was all alone. And it was unfair. Unfair that I couldn't lean on anyone, unfair that my mom leaned on me while I felt just as helpless. The whole situation was unfair.

I cried alot. By myself.

In April my parents requested a new neurologist. The previous one was an arrogent bastard and we never really liked him. I found out much later that in January, when A was diagnosed with the GBS, my parents met with him to discuss treatment options. He told them "I don't think he's going to make it. I think the combination of the GBS and leukemia will kill him"

If I had been in the room I think I would have punched his face in. Bastard. You just don't SAY that to people...at least not in that matter-of-fact kind of way.

One of the weirdest things that happened during all this happened during my mom's watch at the hospital. There were three ministers at our church, and one would usually come by a few times a week. One day, one of the associate pastors showed up. He told my mother that several people in the congregation expressed concern that my brother's illness was being caused by...(I am not making this up)...evil spirits. And would my mother mind if he annointed my brother with some oil and said prayers to get rid of any evil spirits.

My mom, not sure whether to laugh or cry, told him to go ahead, every little bit helps. So A was annointed, and it did not one damn bit of good, of course. But how funny! Evil spirits? We're PRESBYTERIAN! The white breadiest of all the protestant faiths!

We still laugh about it to this day..."evil spirits." MORONS!

Here's where my order of events start to get fuzzy.

I think was a monday or tuesday, and I was taking my mom's shift during the day. A had been pretty quiet, not itchy, not needing much medicine, and he didn't really respond when I offered to read to him. I didn't think much about it. I was reading a book, and just sat quietly with him. A nurse came in to clean the bandages around his trach tube and to shift his position on the bed to prevent sores. I helped her out. She noticed something I hadn't - A looked puffier than normal. The skin around the trach was swollen, not red, but it puffed up over the bandages. Weird. Then I noticed the monitor. His blood pressure was REALLY low. Very weird. And his cath bag wasn't very full. Shit.

She came back a little while later and gave him a shot that was supposed to raise his blood pressure. Doctors came in and out. They spoke with nurses in hushed voices. A's kidneys weren't working properly. "why don't you hook him up to a dialysis?" They agreed, and A was hooked up to yet another machine. Wednesday, mom and dad had a meeting with some of the doctors. I sat with A, along with his friend J.

I have to say that E and A's friends were always visiting, bringing CD's, sitting with A while we'd grab lunch or dinner, chatting with him. C and her mother were frequent visitors, too. I loved C, she was so sweet. I think we all had assumed that A and C would eventually get married. They were just so much in love. Silly and premature thinking, I know, but I was looking forward to having C as a sister in law.

Anyway, my parents were at the meeting, and J and I sat with A. I knew that something was up. On the TV, the news was reporting a school shooting somewhere in colorado. It didn't really register with me. At some point, the social worker who had been assigned to us back in January, came to get me. My parents wanted me to join them in the meeting.

I walked slowly down the hall, slightly light headed. The social worker had such a sad look on her face. I opened the door, and my parents and some doctors were sitting at a long table. My parents were crying. Shit. shit shit shit shit shit.

"We're going to let him go" my mom cried out, too loudly, and broke down sobbing.

I can still hear her saying that, the devastation in her voice echos in my brain. It haunted me for a long time, that phrase. "we're going to let him go"

"NO!!! He's still OK! The dialysis is helping! Right! We can't....we can't just... give up!"

And the doctors told me to sit down, and they explained to me what my parents had known for a couple of weeks now, but never told me. Despite their best efforts, the infections on my brother's skin had spread all throughout his body. They were attacking his organs. Everything in him was failing, not just his kidneys.

There was no hope. They were going to shut off the ventilator. Friday morning.

Everything is a little blurry after that. I remember calling my church, asking them to send the head pastor over...NOT the "evil spirits" guy. I remember grabbing my purse from A's room, and trying to act normal in front of J, so he wouldn't know. But I think he knew, I guess E told him.

My parents spent the night in the waiting room. But I had to get out of the hospital. I had to be by myself, I had to call my friends, I had to get SOME comfort. My friends did the best they can. My best friend, who was at Penn State, cried with me. We had been friends since 6th grade, and she knew my brother. My college friends never really knew him, but did the best they could. I only slept that night, in the house by myself, because my body and brain were rock bottom exhausted.

The next morning, I drove back to the hospital to start the death watch. The pastor was there, and numbly, my parents began to make plans, a funeral, a memorial service. Not in the room, my dad decided. A might be able to hear us. But A had, as best we can tell, slipped into a coma, probably that monday as I sat with him, and never noticed.

A huge group of E and A's friends skipped school that day, and filled the ward. It was an odd variety of pierced, spiked, dyed, and all black clothing. Sitting in the halls, comforting each other.

My whole family spent the night in the waiting room, on uncomfortable couches, dreading the morning that came too soon.

Early, we sat in A's room and watched the technicians as they gradually turned down the respirator. A little more...a little more. The heart rate and blood pressure screen was shut off. But I could still hear it in the nurse's area. A was fighting. While his blood pressure dropped to barely anything, his heart beat was strong. The respirator was barely on. And we knew that it was time. I reached over and touched my brother's leg, to comfort him and myself, but jerked it back quickly. His leg felt dead already, cold and hard. As we stood around him crying, on Friday, April 23, at 9:06am, my brother lost the fight.

I will post more when I stop crying.