I know there have been times when we have been contagious, leaving little droplet bombs of sickness in our wake, and it has been unavoidable that we have had to leave the house. At least for groceries, lest our recovery food consist of stale fritos and pickle relish. But if I find the person who left behind this virus we all have, because they HAD to go to Smashburger or Caribou Coffee the ONE day we decided maybe we could try to be normal, as normal as you can be while carrying a big yellow dispenser of antibacterial wipes and wiping down every surface your child might touch, I'll...well. I'll slay them with vicious rhetoric.
That fever that developed while I was writing my last post while also sort of parenting wasn't bacterial, thank goodness. It was viral. Which meant Daniel didnt need yet more antibiotics, but it also meant we all got the crud. So I guess what I am saying is, for the first time since he got sick, the rest of us actually felt almost as sick as he did. I say almost, because he was also on daily at-home shots of cytarabine, his most nauseating chemo, during this time. I'm afraid we all failed to maintain the Daniel Standard of Stoicism, except, of course, Daniel. Which reminded us again of how hard it is to function when you feel so yucky, and how well he does. We think it is tragically funny, almost, the way he eats with food in one hand and his just-in-case tupperware in the other, lest his food hit reverse once it's swallowed. Not funny exactly, just...he's so responsible. And in spite of the fact that his tummy is churning and he is miserable, it is delightful to watch his many processes.
The Virus did land us in the hospital for a night last weekend. My parents were already on their way up, so they just kept driving in spite of the changed plans. After having discussed it with the oncology fellow on call at Children's, I decided to take him only as far as the Children's Hospital North Campus, their satelite ER intake and urgent care about thirty miles closer than the main campus in Aurora.
Bobby was working, as he has been almost every day for the last three weeks. A tangential update on this situation: some local work has been located, but apparently the only reason the job was secured for Bobby's employer is that it was bid very low, which, among other things, translates to no detention pay- the hourly wage the drivers used to make for sitting at a wellsite indefinitely. When we started this job, they were paying drivers to be on call (if they sat longer than 24 hours), they were paying them a percentage of the truck's earnings, and they were paying them for every hour (except the first one) that they sat at a well. Which meant the only time they weren't potentially making money was when they were taking mandatory off-duty time. By now, with all of the pay cuts, the only time they are making money is when they are in a rolling truck. A truck that they cannot control when it is time to roll. A few times this week, drivers have been sitting ten hours at a wellsite while delivering a load. This translates to a lower hourly wage than the kid tearing your tickets at the movie theater or squeezing mayo on your drive-through hamburger. Which is not a good deal for a driver, because every mile on the road is a hazard, and if he should happen to be in an accident, this goes on his permanent record as a commercial driver, which would affect future hiring eligibility. Not worth it for minumum wage.
It turned out, taking the little sickie to the north campus was not a time saver. They had to send his blood via courier to the main campus in Aurora anyway. Then we had to wait while their lab analyzed it. Then wait while the doctor at the north campus conferred with the oncologist at the main campus. Then, finally, when they decided to admit us because, in spite of his fluids, his heart rate was still high and his fever was not subsiding, they would not allow us to transport him ourselves, they had to provide transport. On a normal day, riding in an ambulance would have been terribly exciting. As it was, he was tired and frightened. He was buckled into his carseat which was strapped to a stretcher facing backwards, and the only place for me to sit was the little rumble seat behind the driver. I thought I needed to ride along to offer comfort, but the comfort part turned out to be completely impossible, given that my view consisted of this:
Seven hours after having arrived at north campus, we were finally led to our luxury suite on the oncology floor at Children's hospital. But not before my parents also arrived at north campus, just a mile out of their way, and rescued me from a near coma by bringing fast food and milkshakes, and my mom held sleeping Alex (yeah, help always arrives about ten minutes AFTER the baby who has been screaming for hours calms down, allowing you to finally pay legitimate attention to the actually sick toddler, who has been quietly sobbing this whole time and having to accept you rubbing your knee against him as your best attempt at maternal comfort). My dad held Daniel, watching Youtube videos with him, and I suddenly sat there all out of a job. Except to inhale french fries and a cookies'n'cream milkshake at a dangerous speed.
Finally, in what felt like a stroke of genius at that late hour, I fished out my phone and gave it to him, and the hitherto uncontrollable sobbing stopped when he discovered he could watch videos of himself on happier days driving his firetruck, wading in the river, riding his trike. Encouraging narcisism? Probably. Yet another thing we'll have to deal with later, when we are no longer trying to problem solve in the moment.
My dad drove my vehicle to the hospital in Aurora and spent the night with us there, and the next day as well, while my mom organized the chaos that was my kitchen cabinets and diaper changing station, did laundry and straightened my house. By late afternoon, it was becoming very obvious that what Daniel had was a virus, not an infection. They were as anxious to shuffle us out of 7 east, the highly immunocompromised bone marrow transplant unit, as we were to leave. (They had put us on the east side because west was more full, and there was better nurse coverage on that side when we were admitted.) We weren't put on isolation until the next morning, so all of our night nurses were not taking contact precautions. I really, really hope that we were not responsible for some poor kid recovering from a bone marrow transplant getting this truly nasty crud we all now have.
Unfortunately for Alex, he is the only one with a small enough windpipe that the swelling that has caused us all to sound a little like a family of Batmans (Batmen?) has also threatened his breathing. Last night he finally got bad enough I felt like I had to sit up with him, making sure his airway didnt constrict completely, holding him upright in the bathroom with the hot shower plus a humidifier on, rubbing Baby Vicks on his chest and back, doing everything I could to keep the swelling down enough I didn't have to incure an ER charge on this month's medical bill. Daniel and I have met our deductibles, Alex and Bobby have not. Finally, about three am he started breathing easier, so I took him to bed and immediately fell asleep, but was awakened again at four by wheezing and gasping as he realized he couldnt breathe deeply enough to cry effectively, so back out of bed for more rocking and sushing until he calmed down enough the air supply again met the demand. And back to bed about five. And woke up at five thirty to a particularly cute but menacing toddler Batman demanding "Boo? Peeease?" In a deep, raspy voice. And then the tiny one woke up with a nose miraculously also clear enough to nurse, so I resorted to tandem nursing, which demands my arm muscles to hold them both on top of me, a total of forty five pounds of squirming, sweating, wheezing, gasping, biting little blessings, and I kept falling asleep and letting them roll off...which woke me up pretty effectively, actually, because it wasn't like either of them was considerate enough to unlatch on their way down. They were both back asleep by six thirty, so I peeled off my milk- and snot-soaked clothes, covered the apparently all-night, all you can eat buffet with a pair of tiny footie jammies I found in the covers, lest anyone wake up and think it was open for business, as if strategically placed footie jammies could actually stop the milk zombies, and all but died until nine. At which point I awoke, and rubbing my blurry eyes, stumbled down the hallway to find my phone and call the clinic to see if they could see Alex. I kept him alive all night, thank you. Daytime, drugs please.
Not one clinic had one space open, so I threw us on the mercy of Urgent Care, who usually won't see babies under six months, and they agreed to at least asses inTriage and "probably" refer us to the ER. And what d'ya know, by the time we got there, he was alert, smiling, not blue around the gills at all, and had a great O2 sat. So they gave us what I was there for without sending us to the ER, a listen to his lungs and a prescription for albuterol, and sent us on our way. As soon as we got home, he was back to sounding croupy and freaking out when the air wasn't there to cry with, but hey. We now have breathing treatments to try in addition to our home tricks for tonight.
4/18: ...at which point Alex, the only boy still awake, fell asleep, so I decided to try to nap.
Next day.
Last night was a cooler one outside, which worked in my favor. I got Daniel asleep at eleven pm, cleaned house until one am since Alex was not interested in sleeping anywhere except in his swing, and at one, gave Daniel his oral chemo, Alex his breathing treatment, and took him to bed. Where he lay gasping, barking, and snorting for the next two hours as I tried to prop him up on me, lay him on his tummy, on his side, anything to help him relax enough to sleep so I didn't have to get back up. I finally gave up, carried him outside and sat on the back patio with him in the cool air, the neighbor's sprinklers even adding some humidity to sooth his inflammed airway until he calmed down. Which lasted until I tried to put him back in bed. So I sat up with him until about five, trying different positions, before I finally relented on my personal rule of never allowing him to be in the swing if I am asleep and unable to monitor him. I moved his swing into the open patio door so he could breathe the soothing cold night air, bundled him up in his cozy fleece hooded jammies so only his face was exposed to the cold, laid myself down on the floor under the swing, and checked out. As did he, finally able to breathe easily enough to stop fighting as the sky was beginning to lighten to gray. Daniel awoke and discovered he had the entire bedroom to himself at seven, so he immediately crawled out of bed and came to find us, snuggled under my throw blanket with me on the floor and shared my Pillow Pet doggy pillow, and we all woke up again at nine, this time for good.
And now it is almost six pm, Bobby is home sleeping, and this whole house is a darkened, peaceful napatorium. Except me. For some insane reason, I can only fall asleep when it is somewhat necessary that I stay awake. Like while holding and reading to two little snotmeisters who refuse to sleep. Or in the middle of sentences while talking on the phone. Or leaning on my shopping cart while waiting to pay for my groceries. (Speaking of which, c'mon. It's 2015 in a safety-obsessed society. They should be putting parking brakes on shopping carts by now. We aren't all horses who can sleep totally unsupported when the darned things roll out from under us.) When everyone else sleeps, apparently the fact that my brain can now get reacquainted with it's own space gets it all giddy and it fights napping as hard as my two year old just did for four hours straight. This is also why it never works for people to watch my offspring so I can nap. As soon as my brain hears the word nap and discovers it is now a real possibility instead of just a vague longed-for dream, it becomes a kid on Mountain Dew, while also breaking into spontaneous song over finally being able to legitimately mull over stuff uninterrupted. And defiant. If I should suggest that it do something, like perhaps engage in a little REM cycle funtime, it runs off to do the exact opposite. Before my exhausted body quite comprehends what is happening to it, it is being used against it's will to raid the fridge, check Facebook and binge watch Netflix. And it's not like I haven't tried. I've tried controlled breathing and meditation techniques, calming music, even tried inducing a sugar crash to coincide with naptime. That went well. (Not.) Perhaps it was the method of induction- a 44 ounce blue coconut slushie. Had a coupon, hadn't had anything so artificial in years, but got all fixated because I was incredibly thirsty after a hot morning at the park. Chugged it so fast I got brain freeze like eight different times. Then I had gastrointestinal distress for three days, not to mention my breastmilk had a green tinge to it. Don't worry- I checked my kids that night to make sure they weren't glowing in the dark. The upside- I want to throw up in my mouth a little at the thought of a slushie of any flavor ever since. Funny, that's the same way I feel about pretty much any distilled alcohol, due to a few incidents that are best left where they occured- in the past.
So this has been one of those weeks. Mama never said there'd be days like this, either because she has blocked them from her own memory or because she knew you'd never make her any grandkids if you knew.
In the meantime, we are trying to play tetris with our Order of Life Events. We now know that we have a big, fairly unyeilding leash that is Children's Hospital for the next almost four years, so at least the question of if we should go back to Western Kansas with our tails between our legs and keep doing some version of what wasn't working for us before, while hoping for a different result, has been answered. We know that whatever our future looks like, we can be reasonably sure it will happen in the Front Range. This leaves our biggest obstacle- finding one income that can support a family of four with a stay at home mom, or less ideally, two lower incomes still high enough to support daycare. But there are more pieces to the puzzle, which is the reason we have yet to start turning over every stone looking for work. We need to find a better housing solution, because by the end of our lease in November we will have given over $17,000 to the person who owns the 1,075 square feet of house we rent. We could not-quite cut that in half with a mortgage, in exchange for a longer commitment to this area. Granted, this unstable time in our life is so not the ideal time to add a long-term financial commitment. But if we switch jobs right now, a mortgage company will not look favorably on us having so little employment history, thanks to us having been self-employed all those years and having switched jobs in October, let alone having just switched jobs again. We will look like an obvious flight risk. This is if we can even get a mortgage- we don't have a lot of savings for a down payment and don't have a really great way to prove we won't default on our loan, but if we can get lucky and find someone crazy enough to approve us, and we find a cheap enough fixer-upper and then don't fix'er up for a few years, we could get our expenses back under control. The fact that we are paying so much more each month to our landlord than we would to a lien holder makes this a classic case of being forced to rob Peter to pay Paul.
I know it isn't exactly socially okay to candidly discuss one's finances. And some might read this as us fishing for handouts or at least for a resounding "poor you." Heavens, no. This is just life. It's beautiful and exciting and some of it is a real freakin' drag. And we are discussing the ins and outs of an income, possible home ownership, and health insurance buying us the most cutting edge medical care, here. While billions go to bed hungry. We all make our own way, as much as our situations allow, and this is the time of life we are in. We are paying our dues right now as we fight, tooth and nail, for our kids to have it better. Everyone does it. Well. Not everyone. Bobby read an article to me the other day about how hard most of us millenials are struggling. (I consider us to be old millenials rather than young gen Xers- we are right between the two and we fit the millenial stereotype better.) It's not unique to this family. Turns out, with some notable exceptions, the only millenials who are doing well- owning their homes, having more than one or two kids on purpose, not living with their parents into adulthood are the ones who were born to wealth- who's parents paid or helped pay for college, who had assistance when purchasing first cars and first homes or help financing business ventures. Our parents tried hard, they did, and they handed us what they could, but both Bobby and I are only a few generations removed from dirt-poor Russian immigrants who stayed right in the dirt they landed in. They, then their children, stayed firmly put and farmed that dirt through the dust bowl, multiple national financial crises, depressed farm economy, and by the time our parents were giving birth to us, they were overshadowed by the baby boomers who already had all the big farms and the great jobs, and they struggled their whole lives as we are. Neither Bobby nor I thought we had the time, let alone the money, to go to college when we could enter the workforce immediately. We hurried into marriage so we could hack the American dream with a two-income household instead. Funny how that only works until one of you decides to stay home and raise your progeny.
But I truly subscribe to the theory that transparency is the way we connect and how we know we aren't alone in the big and bad, happy and sad. This is why I sometimes talk money. It is a big part of this big adventure we find ourselves on. It is as big of an obstacle as the strictly medical ones. I also want to provide a candid window into all aspects of this journey for the inquiring minds who want to know. This is why we are keeping close record of all of our mounting expenses, whether paid by us or by insurance. This is what it actually costs to get sick in our broken healthcare system. Well, correction- this is what it costs to get well. Getting sick is, and will always be free. 
Ever wonder what $1,000 looks like in Cancerworld?
So far, in twelve weeks of treatment, Blue Cross of Kansas has over $350,000 invested in Daniel. I feel like we should throw a party when we hit a half mil. A "what we aren't paying" party. Our out-of-pocket medical expenses are about $13,000 so far this year. This includes our insurance premiums as well as prescriptions, copays, out of network self-pays and deductibles. It doesn't include fuel in our car, tolls, and other random things we wouldn't be paying for if Daniel weren't sick. And it is because of your generosity, dear ones, that we are even sort of considering an attempt to finance a house. If. If we qualify. There is a good possibility we won't. The several grand you have sent us or left on the GoFundMe cousin Weylin set up is several grand of that $13,000. And for this, we are so humbled and grateful.
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