And we aren't dealing with a necessarily terminal diagnosis...
And we aren't starving...
And we aren't homeless...
And we aren't uninsured...
And I'm not tied to a chair in a hot room holding a copy of today's paper in front of a camera while some uneducated zealot with a bag on their head screams about their own twisted ideology while brandishing a knife or machine gun, or in some damp basement while some sociopath is upstairs googling the best way to get away with rape, torture and murder, nor am I sitting here wondering if the same is happening to my missing child.
Wow, that went off the rails in a hurry. Careened, more like. Go home, brain. You're...dark.
Ok, fine. I'm whining. About first world problems. Don't I feel like a jerk. I should probably sign off now, because eighty percent of my intended subject matter just became irrelevant.
On to the rest of it...
Yesterday was the first day of our second round of Consolidation, the title given this fresh hell of nausea Daniel's chemo yesterday threw him into. His counts weren't high enough to start it last Friday, nor were they high enough to start Wednesday. We were actually somewhat relieved, because this gave us a whole extra week of letting his appetite return, his attitude improve, his energy levels soar before having to start the next phase coming at him like a loaded Mack truck with a cut brake line.
We "should" have only had to do this month once, but since his bone marrow biopsy results did not attain MRD (minimal residual disease), he was moved from the protocal for a low-risk categorization to one for high-risk, which means doubling down on certain phases like this one. We are on standard high-risk protocal, having turned down the offer of going on a clinical trial, since we still just assume he will respond beautifully, attain long term remission, and we will skip away from this whole experience unscathed. We have to assume this. Our whole coping mechanism is perched on this foundation. Anything else is too unthinkable to even go there, unless it is revealed in the future that we have to. Even stretching a safety net in the form of the smallest amount of expectation of bad news is just too much to consider. I have a thick, solid wall of NO built into my brain, and any thought of relapse, let alone being in the 5-10% who do not achieve long-term remission (long-term in Cancerese meaning five years) slams into it and ricochets right back into the shadows it shot out of. Someday, maybe I will have to-NO. But what if-NO. But shouldn't I prepare, in case-NO. No, no, no, and absolutely not.
We chose to stay on standard protocal because for high-risk patients, clinical trials mean more drugs to further minimize the odds of recurrence. For low-risk, they generally are testing the effectiveness of fewer drugs to determine what the minimum amount of treatment necessary might be. We felt, since the amount of cancer left in his bone marrow wasnt a large amount, we could risk going with the lower amount of drugs and still count on not having a recurrence. Because, well, NO.
So we already did this month once. We know what to expect. Except the side effects are hitting harder and faster this time. We spent our seven hours in the infusion center yesterday getting fluids to flush the chemo from his bladder faster than it had a chance to permanently damage it, and the actual chemo, thirty minutes of burning, watering eyes and dripping nose for Daniel. We decided this time to skip the insuflun, the little subcutaneous catheter inserted in his thigh to save him from needle sticks when we administer his cytarabine at home. I have given enough shots to myself through the course of growing two alive babies, I felt confident giving him shots to save him from possible infection from a contaminated insuflon, since it proved really hard to keep water and dirt out of it the last two times. I'm regretting this now, because every shot leaves a small bruise and he cries, but I had to make that decision for him- what would he rather: one shot, in exchange for being able to go to the splash park, take bathes, not wear long, hot pants? Or a less painful moment once a day for all day of less freedom? I hate making those decisions for my babies. I shouldn't have to.
Bobby spent the day at the clinic with us, but he had to take his own vehicle, due to some schedule conflicts early in the day. On the way back, we made it about thirty minutes before, from the backseat, I heard "uh-ohhhh." And Daniel began sobbing. I adjusted my rearview mirror and watched him as he began grabbing at his skull, and his crying became harder everytime we rounded a curve and the sun shone in his eyes, so I called the hospital to ask if I had permission to give him something for a headache. Twenty minutes later I was still on hold, and just as I was merging onto I-25 from the E470 tollroad, which we had taken to try to avoid rush hour on the south half of I25, he threw up all over himself. Since he was strapped into his carseat, he started gagging on the vomit since he couldn't get his head forward far enough to get it all out of his mouth, so I swung onto the shoulder, hung up on the hospital, called Bobby who was ahead of me to tell him why I was stopping, jumped out, unlatched his chest strap, let him get the rest of it out, then grabbed Alex's blanket, wiped off his chin and chest, buckled him back up and hit the road again for the first exit. We followed Bobby's car to a dance studio parking lot, where we got Daniel out of his seat, changed his clothes, and I used half a pack of wet wipes to blot the worst of it out of the carseat, while Bobby held a syrofoam cup (yay for cluttered vehicles) under his chin as he threw up again, and again, and again. And then rallied and assumed we were stopped because it was family fun time and insisted we unload the stroller and go for a nice, scenic ramble. With a resigned sigh and shake of his head, Bobby did just that while I got a now-screaming Alex out of his carseat, sat on a curb in the shade, and nursed him. And at that point, the sheer ludicrosity of the whole situation caught up to me. That a baby who does not even have the vocabulary to be able to tell me how he feels, has no frame of reference for judging situations to be unusual and has no comprehension of the concept of mortality is fighting for his life, that is ridiculous. That this is far from the worst thing to have ever happened to innocent children is inexcusable. That we can't protect our own children is unbelievable. And that I spend so much of my time being angry because he doesn't know to be is just...I dont even know where to put that. My tears at that point were hot and angry as I kept repeating to myself, "There is no reason for this. There is no excuse for this. There is no way anyone deserves this." 
(Yeah, I take pictures of the bad times too. Some day I'll show them to him, when he thinks life is too much, to remind him how much he has already overcome.)
Then Bobby and Daniel came back, we put the kids back in their carseats, and hit I25 again, our lost hour leaving us right in the thick of creeping Friday evening traffic. This time I left the cup in his carseat cupholder, and although he threw up again, this time he didn't spill a drop, but caught every bit in the cup, spit, wiped his mouth, and placed the cup back in the cupholder. Then fell asleep, a pale little man, far too old for his size, in my rearview mirror. And again, the anger vise closed on my heart until tears seemed too self-indulgent and I drove scowling fiercely at anyone daring to pass me as I sat in traffic.
We gave him a bath (and a second bath, after he threw up in the first one) and another dose of Zofran (anti nausea) when we got home, and this time it was effective enough to allow him to eat dinner a few hours later. It was 11:30 by the time I finally nursed him to sleep, then remembered to set my alarm for 1:30 to give him his 6mp (which we are back on for the next two weeks now) on a two-hour empty stomach. He fought me on it, barely awake, and we spilled some on his pillow and shirt, but he did go back to sleep without asking to nurse, (Alex was glad to take a turn for both of them, then I had to sit up and pump, thanks to Daniel's thankfully lacking nighttime appetite) and didnt wake up wanting to nurse until 5. So he did get three and a half hours of empty stomach after taking it this time. Seems like we should be able to get more, if we could just manage to get him in bed by 8. Not to mention then I could give it to him at 10 when we went to bed instead of setting an alarm for me to wake up to give it to him.
We left the windows open to let in the cool night air, and I lay awake listening to rain dancing across the canvas awning outside our bedroom window, the thunder gods conversing back and forth across the sky outside, and for a moment, I was back in the little white stone house in the Smoky Hill River breaks on the edge of nowhere, not much older than Daniel, feeling the thrill that was a summer thunderstorm, back when it never occured to me to feel fearful of the storm, barely aware that anything bad could happen. And then I lay there comparing my childhood to his. I eventually also lost my innocent assumption that nothing could ever hurt me, but I made it to my preteen years before life got cruel. He made it twenty seven months. And again, anger. But this time, not fury. Just sad.
Alex got me up at 4:30, a cooing, grinning ball of morning cheer. I was not, but I stumbled down the hall with him and held him on the couch so the other two in our bed could sleep, and tried to force my eyes to focus and not to fall shut, lest I drop him, as he told me marvelous things about being a baby. Finally, by 6:30, he had worn himself out, so I took him to the spare room and nursed him back to sleep, and I slept until 9 am, when Daniel finally awoke enough to miss me and come looking for me.
And now Bobby is at work until late tonight, I just gave Daniel his shot and nursed Alex back into a state of satiety, such a temporary condition for him. My mom called to ask how things were going, and I whined to her about my crappy day yesterday, my messy house, my miserable kid, and then my dad got on the phone and decided that they should drive five hours yet today to come up here tonight and make it better. Or at least cleaner. Sigh. I mean, yay, that we get to see them, and that Daniel gets a visit from some of his favorite people in the whole world when he is feeling so yucky, but I should know by now that as hard as it is for me to see my child become an oncology patient, it is as hard for them to watch me become a momcologist. When I wallow in self-pity, they are going to feel as sad and helpless as I do watching Daniel suffer. And they are going to go to great lengths to help me feel better. Because that is what parents do. Eventually, when parents don't set those pesky boundaries, kids learn that being a whiner will make their parents run around like crazy people trying to make them feel better, and they either like it and demand more, or they wonder if perhaps they should protect their parents from their emotions and try to be more objective about when they actually need help, since they know it is there, should they only ask. The problems arise when making your child feel better is impossible. I can always decide to be happier and save them ten hours on the road. Daniel can't decide to feel less painful, tired or nauseated.
This is him right now. Pardon my really bad 1st generation ipad camera...
I am monitoring a fever, so far up to 100.7. If it hits 101, I have to take him in. Which I'd rather cut off my big toe than do. Crossing my fingers...
On a happy note, remember this from a few weeks ago? 
This is Simone. She turns two years old today. Unlike Daniel, she was diagnosed as an infant, which puts her in a much higher risk category. This from her facebook page, at #supersimone:
She's a tough little nut. Her mom would give anything to see her guaranteed a normal future, go to high school, break some hearts with those doe eyes. She deserves far, far better than what she got. The thought that anything but a long, healthy life could be hers is another big wall of NO. If you feel like doing a bit of activism today, donate to childhood cancer research in honor of her. She has parents who would do anything for her, what she doesn't have is the luxury of a disease that is well understood with well-funded research.
...and...herewego. Dialing the hospital. On a weekend. Again. Even though I know and they know that it's probably just a reaction to his chemo, I am sure we'll be going in for cultures. Hoping, since his ANC was 900 yesterday, that they will let us get by with just cultures and not antibiotics...
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