As soon as they left, Daniel got really tired really fast, so I took them both to bed. Alex was snoring in no time, but Daniel is here beside me pretending to nurse and breathing in grunts.
I have an uneasy fear, my momcology "intuition" (which we have already established is not exactly bulletproof) suggesting something is not quite normal with him. Maybe it's just more steroid stuff. I don't know. Maybe it's that I'm the responsible one when B is gone for work and I can't take the pressure, and look for boogie men. But I keep taking his temp. I keep scrutinizing his face. Feeling his pulse to see if it is racing. It's how uneasily he is sleeping beside me. It's the way his tummy is so distended and he has a pronounced limp. It's the fact that he is sweating so heavily when he sleeps. That his poop was extremely pale, almost white, until this morning when it turned back to yellow and gelatinous with mucus. That he's burping and farting like a frat boy. That his hand, caressing my face as he sorta-nursed earlier tonight, was shaky. That as I lie here and type on my phone, he is whimpering in his sleep beside me. That as I changed his diaper earlier tonight, the skin around his mouth and chin looked blue, even though his lips, fingernails and toenails were pink. It's all stuff that is probably nothing, but the sum of all the nothings has me nervous and on high alert. Maybe it's just that his newly bald-again head is reminding me that I should not relax yet. Or maybe it's just that I'm trying to sleep in a weird (to me) house with weird sounds and smells and feel all uprooted, not to mention alone and terrified of being the one in charge. Maybe that has everything feeling not quite right.
In spite of my foreboding, Daniel has been incredibly happy and in spurts, energetic today. Every time I ask him if anything hurts, he says no. So that's encouraging. My threatening freak out is probably all just caused by the weird side effects from steroids. But I wish he would breathe normally. He sounds in pain. He holds each inhale for just a moment, then exhales with a grunt. There are many reasons I am glad he is going through this so young, it saves him a lot of processing, but not having him verbal yet and able to describe what he is feeling is really frustrating sometimes.
Sunday night: ...and that's when I decided I was making no sense and just sounded like a crazy person, so I relegated those first paragraphs to the "never going to post" file and went to sleep, feeling a little better having at least expressed, if not shared, my uneasiness. But here we sit, inpatient again. I still think I was being a little bit crazy and paranoid, but even a broken clock is right twice a day, right? I'm not quick to claim any sort of secret mom knowlege, even though I am occasionally right. When weirdness strikes, it either is something or it isn't. Only time determines which. And later, we only remember the times it was something.
Early Friday morning, I called Bobby, who has been working most of the last two weeks in Wyoming, to inquire after his welfare, lack of sleep, how he was doing with keeping his truck between the white lines... the general lineup of worries I harbor when he is out driving through the night, providing for the four of us. He surprised me by telling me he would be home a little after noon to take his mandatory ten hours off at home, since his clock would run out somewhere around Ft Collins without allowing him to start a return trip to Casper, Wyoming. I loaded up the babies and went to pick him up from an undeveloped side street north of Loveland where he would leave his truck while he came home and slept, and when he got there, in spite of his having been behind the wheel since 10 pm the night before, he stayed up and played with Daniel until about 7pm. Daniel was so thrilled to see him he wouldn't let him out of his sight. We walked a mile to the park with Daniel in the stroller and Alex on my back, watched ducks and geese swim, collected leaves, Daniel walked through the sculpture garden touching and exploring every sculpture on the way back, and as soon as we got home with Daniel almost asleep in the stroller after his little walk, my parents pulled into the driveway. They had to come to Denver for a follow-up exam on the spot my dad had a malignant spot removed from several weeks ago, so took the opportunity to come see the babies at the same time. Bobby went to bed shortly after they arrived. I went to the store alone, kicking up my heels over being able to be out of my house and without small charges for the first time in two weeks, and bought groceries for dinner, which we made when I came home. We stoked a fire in the basement and settled in for a quiet evening in, careful not to make too much noise and awaken the sleeping one, due to be called back out to deliver a load of sand to Casper at 10:30 that night. At 8:45 I nursed and rocked Alex to sleep, then handed his sleeping sweetness to grandma and sat down with Daniel to do the same, and noticed he felt warm. The thermometer read 102.2. So, as much as the last thing I wanted was to make a trip to Denver to spend the night in the emergency room, I was a good girl and called in to report it.
The doc on call told me to find a local ER to assess him and do a CBC, which would give them a ballpark of what his immunity was doing. Basically, the protocal is, good immunity: draw cultures, then send us back home and give his body a chance to fight on it's own. Low immunity: draw cultures, then start antibiotics, because we don't have the luxury to wait to see if it's a bacterial infection or a virus. Then admit him while waiting 48 hours for any potential bacteria to grow on cultures. And if his immunity is very low, wait until it is less dangerously low before releasing him, negative cultures notwithstanding.
Knowing that a trip to a local ER generally results in a transfer to Children's anyway, and since most of the ambulance services are not in-network for our insurance so we end up with a self-pay in the thousands for every ambulance ride, I decided I would gladly drive an hour down to Denver to save ourselves such a bill. Not to mention the local ERs don't have the greatest track record with accessing his port. So my dad stayed behind to take B to his truck when his phone rang, and my mom packed a small bag while I packed a bigger one with clothes for all of us, wishing greatly I had done laundry that day, since all the clothes I wanted to take were dirty. Then we bundled two sleepy little boys into carseats, stopped for a tank of gas, and drove down to Children's hospital, where we spent only about three hours in the ER before we were shown to our room. 
(Daniel insisted on walking out of the ED and up to his 7th floor room, in spite of his shoes having stayed in the car.)
Which is where we are right now. In four hours, our 48 hours will be up. But his absolute neutrophil count, the presence of white blood cells that give the best indication of where his immunity is at, has dropped from 6,500 two and a half weeks ago, to 600 last Wednesday, to 230 when we came in night before last, to 90 last night. A normal person's ANC can range from 1,500-5,000. Daniel's was higher than normal either from steroids or because he was fighting a virus a week and a half ago. Anything under 750 is considered neutropenic, or severely compromised. Anything under 100 is considered critical. We won't be discharged until it has climbed back over 100, and since it still seems to be trending down, steadily on it's way to as close to zero as his last round of chemo can push it, we will be here until it bottoms out, then climbs back up.
But that is all just protocal. Whatever Daniel is fighting actually has an occasional stab of panic forcing it's way into my throat. His fever has been relentless since Friday night. It still has not broken. It can be temporarily controlled with Tylenol, but never goes below 100.4. They are reluctant to treat it with ibuprofen, since that can be a bleeding risk with his platelets also under attack, but have had to several times when tylenol has proven to be less than satisfactorily effective. When it climbs up around 103.8-104.1, his breathing becomes so hard and fast, his heart hammers, even his legs and arms are so hot I can hardly stand to hold him. His head, plucked-chicken bald but inexplicably soft, shiny scalp under a fuzz of straggly hairs, feels silky and hot against my cheek. I read somewhere that a cancer parent never forgets the feel of a child's bald head against their cheek. I don't think I ever will. Nor the sick smell of his diapers after round upon round of antibiotics have wrecked havoc in his insides. Nor the sweetish, acetone smell of his breath after a round of Erwinia that tells me he is ketatonic, his liver under attack. Nor the way he no longer even has to smell something to start to retch, he only has to think about it. (He heard someone who shall remain nameless let rip a particularly impressive episode of flatulence the other day and immediately began retching, in spite of the fact that he was upwind, removed from the immediate vicinity, and the pungence never even wafted past his sensitive little nose.) 
Bobby begged off work when they called him in Friday night, so he slept the rest of that night, catching up on his missed sleep from the two weeks he was gone, then he and my dad spent the next morning installing doggie doors in our house so Andy could be self-sufficient while they came down here the next day. My parents went back to Loveland that night. This morning and afternoon, my mom did laundry and my dad finished building the swingset he started two weekends ago with Daniel's help, and after a quick stop here to see babies again, they are on their way home right now.
So we wait. There is nothing to tell, our doctors tell us most of the time cultures are negative and they never discover the cause of the fever, and in the meantime we are on isolation, lest it is a virus that could expose the entire bone marrow transplant wing. It is hard sometimes to not think about the stories you have heard of such episodes that ended as worse-case scenarios. Because those are the stories you hear. You rarely hear of all the times the parents of tiny oncology patients sat up watching over their tiny, embattled bodies as they slept, fear twisting their guts and squeezing their chests, and it turned out totally fine. Even though I know this experience is not unique to us and more kids walk out of here and get on with the rest of their lives mostly unscathed than those who don't. And I still believe this will be us. One can't harbor thoughts of anything else without giving in to genuine crazy. Not to mention, this particular time in our lives is less than ideal for that. After all, we have a "Turning Three and Cancer-free" party to plan in a few months. And things in the future like preschool and play dates to think about, and a whole life ahead of us to spend worrying about him learning to drive, trying things he shouldn't, and waiting up for him to walk in the door, safe and sound. If we didn't want to know this terrifying love and loving terror that is parenthood, we should have never brought these beautiful little creatures into our lives in the first place.
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