Blessed, but sometimes cursing.

Hello, dear ones. I've got a few minutes before I fall asleep to tap out a little update, and plan to keep it brief. I've just spent the last hour and a half rolling back and forth between two babies as they nurse frantically, fall asleep, and then awake just enough to fight, literally tooth and nail, to keep from losing their boob while the other one wakes up and notices his own boob has up and rolled away again. My usual trick is lying on my back, tilted toward Daniel, my arm flung out on his pillow, his head on my shoulder and his hand pulling his "own" breast (because let's face it, they aren't mine anymore) to his face, and my other arm wrapped around Alex, lying on his tummy on my uphill side, draped over me with arms and legs dangling, his face smashed into "his" breast. This is a good position to bounce out all the extra air Alex swallows in his enthusiasm using my only available hand. Sometimes his little fists slip off of me and shoot down right into Daniel's face, which causes Daniel to shove Alex away from him by placing the palm of his hand on Alex's face and pushing, which leads to Alex sputtering in indignant disbelief, then letting loose a with frustrated squeal and grabbing for whatever he can get his hands on to keep from getting dismounted against his will. And then, with Alex yelling and thrashing, Daniel often starts kicking and grabbing as well. I have seen this struggle play out in litters of barn kittens time and again. I feel almost exactly like an annoyed mama cat, lying there in the dark with my ears laid back and an irritated twitch in my tail as the nursing litter struggles on top of me. But then they finally fall asleep, milk-drunk, with the last mouthful unswallowed and dribbling out of their cheeks, and I gently roll them off of me, then lie there listening to their soft breaths, lay my hands on their chests to feel their tiny, quick heartbeats, and fall deeply, terrifyingly in love. 

It has been a long week since we left the hospital. I somehow missed the memo that if side effects were to hit from Daniel's high-dose methotrexate infusion, they would not manifest for 3-6 days after the infusion. I so smugly came home from the hospital reporting no major side effects, aside from a diminished appetite and some nausea. But several days later, the redness around his mouth turned into a full-on inflammed rash, sores developed in his mouth and throat so badly he all but refused to swallow, which meant at night his saliva ran out of his mouth and down his cheeks, burning his skin. Everywhere adhesive had touched his skin, days earlier, blistered up in a painful, itching delayed reaction. His voice turned hoarse from swelling due to the sores, and he took to digging at his skin, obsessively scratching his arms, legs, back, and scalp. I gave him Benedryl, which controlled the itching on his body where there was no visible rash, but anywhere the rash persisted, he dug at, leaving oozing gouges in his skin. On the day it was the worst, he kept disappearing and I kept finding him tucked into his bed, not asleep, but curled up in a miserable ball, only his eyes moving to follow me. All I wanted to do was curl up around him, draw him close and hold him tightly, but Alex would not hear of not being held, and in a classic case of the squeaky wheel getting the grease, I spent the day all but ignoring Daniel as Alex demanded my attention. When Alex finally napped, I had a bit of a public meltdown, posted on Facebook along with a picture of Daniel's face and chest, covered in rash and reaction to the tegaderm and adhesives used to cover his port access several days prior, while in the hospital. This doesn't show the sores on the back of his scalp, and the burn on his lower back from the Tegaderm that held down the glob of numbing cream on his lower back, prior to his lumbar puncture. I have to admit, I was silently cursing a good part of that day, angry. So angry. Furious he has to go through this. I lost the positive perspective I generally try to keep so I don't have to go to all the work to put myself back together after I lose it. I was livid over the unfairness of his suffering. But instead of tears, which are usually my go-to in situations where I am feeling helplessly angry, I was beyond tears. I just wanted to throw things and use strong language. Which I did use...in whispers as I did dishes in a very businesslike manner while Alex sat in the carrier on my back, innocently cooing at the very interesting world from his elevated vantage point.

Honorary aunties Christina and Lisa actually drove all the way up to Loveland from downtown Denver that evening, having witnessed my meltdown, to bring dinner, wine, various other goodies, and Benedryl anti-itch spray. The spray has proven to be wonderful, I have been rubbing it on his head, especially the back of his scalp, to keep him from digging at the scabs that formed from his obsessive scratching. While I felt foolish for my meltdown by the time they arrived, I hated to admit how good it felt to see other adults, have an adult conversation, and place Alex in another adult's arms for a few hours. Daniel slept on the recliner, drooling down the vinyl, sweaty skin sticking to it, and at one point, shifted and faceplanted off of it onto the floor, but he did not want to be carried to bed, so I left him there until he was sleeping soundly enough to put a diaper on him and put him in his own bed wearing jammies from Aunt Mary, with his plush Curious George from Alperts, and his green and brown hand-crocheted blanket from Aunt Marci. I love that his bedtime routine is all about items that, in his most vulnerable moments, represent the love of his village.

By now, the blistered skin that was affected by the adhesives has dried to dark brown and begun to peel off, and the bumps he scratched the tops off of are also scabbed over and drying out. I am almost beside myself thinking that we have to go back to the hospital in six days to do it all again. As it turned out, the hospital stay was a picnic compared to the after-effects of the chemo. 

Bobby came back early from Wyoming, where he had gone after finally getting back from North Dakota. Something must have happened to the three months of work that was lined out up there, because suddenly all of the trucks got either sent home or sent to other oilfields. We are still trying to figure out what our next move should be. As of this morning, he got dispatched on a local cement haul, which came with the offer that it could be a regular, dedicated run for the next few months if he was interested in not quitting. He could manage at least two nights home per week. While this is an improvement, it is not exactly the solution we have been looking for. Daniel is starting to be acutely aware when his dad is gone for long periods of time, and the stress of witnessing our stress over an erratic schedule, not to mention never being able to count on seeing his dad, affects him visibly sometimes. He doesn't need to live with feelings of abandonment, and I cannot keep him from feeling them. It breaks my heart to see him searching the house and yard for Bobby when he isn't here. He doesn't have the emotional maturity to logically process his feelings of abandonment. And this isn't helped by the fact that when it is just me and the babies here, my attention is always divided unevenly, with Alex demanding more of it. 

But this week wasn't all bad. We spent three days this week at the park, playing in the splash park, digging in the sand, wading in the river. My friend Shelby, who lives in Greeley, drove over two days in a row to let our boys play together. We spent two whole afternoons in the shade of a footbridge beside a stream, letting the boys coat their wet bodies in sand as we held their baby brothers, hers three months and mine four months old, and relaxed as much as was possible with toddlers and running water in the same place at the same time. 

We had another reminder of how fortunate we are to be insured when our insurance statement came in the mail. It turns out, the Erwinia shots in Daniel's thighs to replace the PEG-aspariginase IV infusion he reacted to are not exactly pocket change. Each shot is worth about $17,000. That's about $34,000/dose, since each dose is two shots, one in each thigh. The total for two weeks of these shots was $209,500 and change. To say we felt a little weak in the knees when we got that statement and realized we would not be paying it out of pocket is an understatement. Granted, apparently even the insurance company must've been a little shocked, because we maxed out and overshot our allowance by about eight hundred dollars. But that actually feels like pocket change compared to what it could have been, had we given into our temptation to drop our insurance premiums before Daniel's diagnosis to ease the monthly budget. Since we will be doing two more rounds (a total of twelve more doses, or twenty four more $17,000 shots), our patient responsibility will hit about $3,200, but then again, maybe it won't. Because by the next two rounds, Daniel's secondary Medicaid coverage should be in effect for just such things. And just today, a check from some of our village arrived in the mail that will help cover our self-pay. It is so humbling to receive help like this, and so overwhelming. This is something we might not have automatically done for others before Daniel's diagnosis, just write a check for a loved one who was dealing with an extra bitter dose of life. The fact that people have done so for us rips our hearts out, in such an affirming way. It is hard to articulate the feelings of opening an envelope filled with such love. Inevitably, an envelope that seems to arrive at the same time as our need, and somehow, we skate through each month without running too grossly over our budget. We are literally being carried, and it feels...helpless, humbling, tender, hopeful, sad, embarrassing, healing, and deeply loved. 

But back to the finances of cancer. Our insurance payouts have broken a half-mil. Our little darling is now worth over $606,000. We are so blessed by the fact that we are insured. We were born in a country and to a life where it was possible. We are not trying to treat a toddler with high-risk pre-B cell acute lymphoblastic leukemia while having to travel hours over unpaved roads to a clinic in some impoverished area where insurance is unheard of and our only asset is a family cow, or something. Nor are we dealing with multiple diagnoses, such as HIV or tuberculosis, and we have easy, immediate access to plentiful, clean water and safe food when his counts are dangerously low. So many cannot say the same. 

Optimist, pessimist, realist

Hello! We finally passed, and passed really well, to start our next round of chemo. ANC was 2,400. This stay has been defined by the continuation of the potty learning we were so into at home- we've lived pantsless for the last week or so, and saw no need to change that in the hospital. And Daniel has not had any major ill-effects from his first high dose methotrexate infusion so far, so whoop to that! It was an adventure potty learning while receiving fluids at 70 ml/hr- with recieving fluids in addition to frequent nursing, he rarely went a half hour between potties. And with a toddler's body-awareness, he rarely admitted needing to go until he really needed to go, so we hung pretty close to the potty chair. When we did leave the room to walk the halls, we either slapped a diaper on him or carried the urinal with us. And this is where pediatrics beats the pants off of normal, grown-up health care. (See what I did there?) If you weigh 28 lbs and are 31 inches tall, you can roam the hospital halls dragging your IV pole wearing only your shirt and tighty-whities and nobody blinks an eye. You can spend your time lounging around in a shirt and nothing else with your weiner wrapped around your thumb, and the nurses don't back quickly out of the room and call for a psych evaluation.

This picture is such a good one for contrasting how far we have come in four months. At the end of May, he still spent entire days in the hospital bed and cried when someone suggested he do anything. Literally anything. All he wanted to do was watch TV and maybe, just maybe, drive cars on his bed. As long as he didn't have to move too much. And the entire time his port was accessed, he clamped his head against that shoulder. And now? This pretty much sums it up. Pantsless, climbing on furniture, dragging the IV pole around and barely noticing the tubes hanging from him. That picture makes me so incredibly happy when I compare it to what he spent months doing:

We only had one potty accident the entire three days. And this was after his chemo was mostly cleared. But it was nice to be able to get away from the diapers when his urine was most caustic. As it is, his diaper area survived the chemo without developing sores, but his face was not quite so lucky. Wherever he drooled overnight has developed a painful-looking rash. Actually, my nipple on "his" side also developed a chronic stinging sensation and looked a little irritated after spending so much time in his mouth. I googled it to see if this was a "thing", and if it could possible affect Alex, but of course, as with every "breastfeeding a toddler through chemotherapy" question I have, the internet thinks I'm the one with cancer. I know there are moms out there doing this. And there have to even be some doing it while also breastfeeding a younger sibling. They just aren't posting or blogging about it, apparently, so even with the wealth of information accesible through a device that fits in my pocket, I'm still bumbling my way through a lot of this blind. He also developed some minor blood in his urine, which indicates irritation some other place in his GI tract. Not so unusual, but also not exactly ideal. Thankfully, his platelets are nice and high. His body has the ability to heal itself right now, at the start of this latest phase before our counts get knocked back again. 

My dad accompanied us to the clinic on Wednesday, entertaining Daniel while we waited an hour past our scheduled procedure time by being extra loud and destructive with him. If you've been in the main lobby of Children's Hospital, you know the "ball machine". It is a glass-enclosed mechanical wonder, a Rube Goldburg-esqe machine that does not perform any particular task except keep a number of small plastic balls moving circuitously through it, powered by one small motor carrying the balls to the top to begin their gravity-powered descent through a maze of carefully calculated bounces, tracks, levers, and funnels. Daniel, of course, is obsessed. He will literally never leave the display of his own free will. I have been known to get him from the elevators in the back of the lobby to the front door via a longer route through back hallways on days we do not have time to accomodate endless wonder, curtesy of the ball machine. 

So, the ball machine. They were servicing it when my dad brought Daniel up to the clinic while I took Andy, who would wait in the car for a ride to Kansas, potty on a patch of grass outside. When they stopped in the atrium to experience the wonder that was the now-opened-up ball machine, Daniel was presented with the most mind-blowing gift by one of the technicians- one of the mystical, magical balls heretofore only viewable through the glass. He accepted this bestowment with the solemn acknowledgement of the honor and responsibility that was now his as the owner of one of the core components of the ball machine, and held the treasured talisman carefully in his little fist. Once in the clinic room, after I had joined them, the two "kids" conspired to arrange their own version of the ball machine by placing the ball in the back of a small plastic dump truck on the cot, then dumping it out in just such a way the ball would bounce off the linoleum tile floor, ding loudly against the metal desk leg, then ricochet between chair legs until it wound up in some corner. And then they retrieved it to do it again. I cringed every time it thwacked a wall, knowing how well the noise was carrying to whoever was below us and beside us in other rooms, but being the only adult worried about such things, I was outnumbered. When the doctors finally came to get us for Daniel's lumbar puncture, he held the ball as grandpa held him, and when the propofol kicked in and he fell asleep, the ball rolled out of his hand, bouncing across the procedure room floor and under some monitoring equipment. Now, normally, the second Daniel is asleep, jaded by so many of these heartbreaking moments by now, we give him a quick kiss for luck and scurry out of the room while the door closes behind us, but grandpa Kevin lingered with the kisses, then after reluctantly turning loose of Daniel's limp little body, hit the deck and went scrambling after the ball on his hands and knees, past the ankles of the doctors, nurses and anesthesiologist, rummaged around in the tangle of cords under the computer stand, and finally emerged triumphant with the ball while the staff of the procedure room had no choice but to begin prepping Daniel for the procedure, ball drama notwithstanding. I have been trying to get a decent video of the scenario that is Daniel going under anesthesia for a while, and unaware of the ball drama that was to come, was surreptitiously videoing it on my cell phone. So yes. I have the whole thing on video. Minus my cringing in embarassment behind the camera, of course. It's funny now. I'm so thankful, again, for the fluid process that is pediatrics and the flexibility of those in the profession. That particular procedure room has, to hear tell, seen everything from convenient tooth extractions to haircuts on it's anesthetized occupants. One scrambling grandpa ball retrieval, not a big deal.

From the recovery room, we were shown to our room on 7 west, where we settled in for the next three days. Grandpa carried up our suitcases, potty chair, and toys for the next three days, then sneaked out while Daniel was preoccupied to avoid bye-bye tears. Late that night, Bobby finally walked in after having not seen his kiddos, outside of video chat, for two weeks. Daniel, with the aversion to wild displays of affection he inherited from his dad, tried hard but failed to suppress his face-splitting grin when he saw him. The two played hard for the next several hours. It was so exciting being all together again, we were still up late that night when the cafeteria closed and the 24/7 Grill expanded it's menu- the one big reward for being night owls in the hospital. During the day, when the cafeteria is open, the typical cafeteria selections apply. Not-so-fresh hamburgers, french fries, onion rings, pizza by the slice, salad bar. But after 10pm, the Real Food comes out. You'll wait a long time, but when you get your food, it really is death by deliciousness. That is, if the clogged arteries don't get you first. Our selection that night was loaded nachos. A divided tray plate so stacked with chips, cheese sauce, shredded cheese, bacon, green onions, and pickled jalepeños that it won't close, and weighs in at 4 lbs (the person ahead of me in the food line claimed to have put it on the scale once) of pure gut-punishing calorie overload. We suffered the gastrointestinal aftermath of our late night calorie dalliance for two days of being closed in a hospital room together with no fan in the bathroom. Totally worth it.

We shared a hall with some familiar faces this time. Simone was back, but unfortunately she was on isolation. Several other familiar faces were also there, plus we made another new friend, a little girl with a much more difficult cancer than Daniel's. As faces become more familiar, I am starting to become much more emotionally invested in the precious little warriors. I am still a virgin as far as witnessing one of them lose ground in their personal battles. So far, I am shielded from the heart-splitting agony that is a friend and fellow parent witnessing a child, with whom they have spent months if not years in the hospital, who is nearing the end of the most grueling fight of their lives and seeing hope of a normal life returning, relapsing. So far, this whole treatment process has been little more than a massive inconvenience for us. Mostly because I refuse to visit any other outcome. And my lack of experience, in our mere four months of being involved in this world, affords me that luxury. But little by little, I am beginning to see the signs that somewhere deep inside, I must be acknowledging the possibility of a less than ideal outcome. I see it when I realize I have thousands of pictures and videos on my phone of the most mundane moments, all characterized by one common thread- the normalcy of everyday life with a happy, innocent child. When Daniel was first diagnosed and it seemed impossible that he would ever walk, talk or smile again, I watched and rewatched three short video clips of him toddling around in the kitchen, humming a little made-up tune and "helping" me unload the diswasher, and every time I watched them, they simultaneously ripped my heart out and made me smile, grateful for having had the honor to spend such a momentously unremarkable moment with him, just being his mother. And now that those moments of perfect unremarkability are happening again, and he is once again filling the frame of my camera with the normalcy of toddlerhood, I can't stop recording it. And I can't bring myself to delete even the bad pictures or videos, the unfocused ones, the ones he is only in peripherally, or the ones he was supposed to perform for and didn't. Because, somewhere deep down, is this horrible suggestion that there is a chance. A small one, but still a chance, that these captured moments will someday be all I have left of this beautiful inconvenient time. Then I think, but isn't it time that already does that? These moments are passing us by no matter what our future holds. If cancer doesn't steal our baby, time will. Yes, if it's time that takes him, time will replace our baby with a beautiful adult someday, but these moments, these, right now, are so sweet because they are so fleeting. 

And then I realize Alex is not immune either. To be a parent, or more broadly, to wholeheartedly love, is to give your heart completely to something you have no guarantee won't be ripped from you without fate giving even the smallest nod to the magnitude of your loss. One could go crazy, lying awake at night with the thought that we have no promise we will all still be breathing by tomorrow. And from that perspective, does it even matter that one of us has a condition that is potentially life-threatening, while we all have the possibilty of falling victim to the many, many things that could rip our family, which is everything to us, apart? And then I wonder if thinking such thoughts makes me a pessimist, or merely a realist. 

So I guess I have to admit by now that the fear of relapse, of not being cured, of the reality that "long term survival" is a mere five years, is growing roots in the dark places, even as I confidently walk in the sunshine that is a good prognosis. It is affecting me deeply, knowing a handful of children who, in spite of being loved in a deeper, more complete, more dignifying way than most kids can even dream of, won't live until their next birthday, let alone grow up to be the kind of deeply caring adults such a childhood would make them. As I fight down the panic that comes from knowingly dumping substances into Daniel's body so toxic that a known occasional side effect is secondary cancers more deadly than the one he has now, knowing the alternative is no treatment, a route which, had we taken, would most likely have us mourning his death right now instead of celebrating his improvement, I also know that I have the luxury of panicking over worries like potential organ damage. I have the luxury of worrying about the adult effects of childhood cancer that a full two-thirds of childhood cancer survivors experience- infertility, relapse, secondary cancer. I have the luxury of walking, with his doctors, the fine line between risk and reward- hoping and calculating that his treatments will benefit him more than they will harm him. If he were terminal, we could treat his symptoms with no thought as to future effects- we could waste those tiny organs. We could addict him to painkillers. But the very fact that we are treating him with a wary eye to his future is a luxury not everyone has. And for this I am humbled. Because there is no difference between us and the parents who are not at Children's Hospital because they no longer have a child needing treatment. There is no reason they should not be us, or we should not be them. It could have been us, but for some inexplicable reason, it isn't. We are all good, and bad, generous, and selfish, and cancer doesn't care how deserving or undeserving we are. Some of us just got lucky, and are so deeply grateful for this, that every waking moment, we vow to rejoice over the things normal kids do that make their parents crazy. 

There is nothing fair about childhood illness. But one shortfall is more egregious than all the rest. And that is the amount of money given to researching childhood cancer. Cures for childhood cancers are not medicine's top priority. This is hard to imagine, given that the poster child for all cancers is often literally a child on a poster. With a bald head and haunting eyes, she invites us to donate to cancer research, and donate we do.

But this. 

National Cancer Institute's funding for pediatric clinical trials is $26.4 million. Funding for AIDS research is $254 million, and breast cancer is $584 million. Tough break for the kid on the poster. All she's really doing is tugging on our heartstrings so our donations can be repurposed toward adult cancer research. And although it is a broken record in the world of childhood cancer, it bears repeating: that is not okay.

It's all cake.

Hello and welcome! You know how sometimes things that seem necessary and needed just turn out to not be as important as you thought? It's like birthday cake. I mean, cake is tasty and all. Eat it by itself and it's fairly delicious. But I think most of us can agree (well, those of us who are still eight year olds on the inside) that the real reason birthday cake is so delicious is the death-by-sugar buttercream frosting. And the ice cream. Until, of course, you don't feel so hot. Wait, where was I going with this? Oh right. So if you take a second look, you really are getting a whole lot of unnecessary calories from the cake when all you really want is the ice cream and the coma-inducing frosting. And this is a metaphor for life. I am asking myself, as we plot our next move, just what is the cake? What can we shave off and still keep the best of the good stuff? 

Is it our third vehicle? But then which one do we get rid of- the car Bobby drives every day, the truck we won't be able to replace for the same money when we need it, or the family tank that hauls us all down to the hospital on a regular basis? Is it the house we want to buy? Do we need to buy? No. But $80,000 lost in rent over the next five years is a depressing thought. The dog. It's definitely the dog. Dogfood is expensive, he limits us in our rental options and forces us to have to pay more to get a pet friendly rental...yeah, the dog is the cake. But you don't just offload the family pet when things get tough. And this particular one is our firstborn. He was our child before our children. And I don't want my children to grow up without a pet. Especially a dog. Vacations would be the cake...if we took them. So would movies...if we went to them. Or dining out...if we did that. Or buying nice organic food...if that hadn't fallen by the wayside. Or cable TV...if we had it. Or gym memberships...yeah, excuse me while I stop laughing. We could sell our mountain bikes, but they are really not worth anything anymore- they are worth more to us in dreams of riding them again someday than the money they would fetch. And our road bikes were never worth much to begin with. And ditto our skis- they are five year old models by now, even though they are in pristine shape. I would think coffee would not need to be a daily expense, those little nine dollar bags of beans add right up, but Bobby seems to think it is necessary for continued functioning. Well. That does it. Clearly, we need to sell the children. 

Okay. Confession. My clumsy cake metaphor is influenced by the fact that I am trying to justify the fact that I just ate a bowl of ice cream. With a large dab of buttercream frosting on top. And now I don't feel so hot. The eyes are having a little trouble focusing as the brain whirs and threatens to overheat, my foot bounces manically and I feel all twitchy. This is why sugar is bad, kids. I am feeling the need to self medicate my exhaustion away instead of the obvious fix, which would be sleep. But it is just so fantastic to have the house to myself after the babies sleep, I end up doing all sorts of crazy projects that get me all high on creativity and then suddenly the clock says 3am and I know babies will be waking up at 7...

It has been a heckuva week. It started out with house hunting, Bobby and I looked at a few houses for sale last Saturday and Sunday. Then his phone rang and dispatch sent him to North Dakota for a load of sand to be delivered to Rock Springs, Wyoming. So on Monday, he packed one change of clothes, climbed into a back-up truck because his was in the shop, and bounced ten hours up to Williston while I continued looking at houses. It was a little frustrating having him leave for several days right then, because we had thought maybe we could have a little family time before he left on the 20th for three months for a job in Gillette, Wyoming, about four hours away. He was on his way back, set to arrive home Wednesday night, I put Daniel down for a late nap so he could stay up late to see Daddy when he walked in because he had been asking about him for three days, when dispatch decided to send him back for another load. And under somewhat murky circumstances. The dispatcher seemed unsure, had to ask higher ups if he was really supposed to go back to North Dakota, then they deflected his questions about his load header, usually sent promptly. Sure enough, when he arrived, he still had no load header, and there was no sand for him to haul back. No big deal, said dispatch, just sit there until we find some sand. Maybe we'll have a load for you to haul back Monday. In the meantime, maybe there will be a few local loads you can haul. 

No big deal. We should have known. Every time we attempt to make plans, work interferes. We have had days he was available to work turn into days, turn into weeks off in the last ten months, but we have had only a handful of days off we have known about in advance. Like an actual handful- like five. For the last ten months, with the exception of one four day ski trip, we have lived our lives around the possibility of the phone ringing. This means we have not gone where there was no cell service, not even up the road into the mountains for more than a few hours, those sneaked in when he should have been sleeping, in the last ten months. Although apparently management thinks he is luxuriating, lounging about, enjoying a lovely, unexpected mancation at a truck yard in Williston, ND (who wouldn't love one of those?) in reality, he has been sitting in his truck, ready to go, on-call for 168 hours this week. And since he gets paid by the load, we can't help but do the math. If he were making an hourly wage, this on-duty time translates to $5.95/hour. Yep. You read that right. There comes a time when, even though a little money is better than no money, it is worth it to leap into the unknown rather than to stay where one is at. We almost made this leap two months ago, but there was just enough promise by said shrugging management that things would get better, we tightened our belts and stuck it out. But after this last week...nope. It's not okay. Not anymore. Even if they were paying well, by this point our respect for this particular company is so far gone, their lack of respect for their employees so obvious, that staying would cost us our self respect. Which, let's be honest here, is even something we could live without. We've done it before. It's amazing what a person can put up with for a little filthy lucre. Who needs self respect when one is making bank? But when bank dries up, along with the mutual respect, there's no reason to stay. We can average better $5.95/hr in a 120-168 hour work week almost anywhere. Not that we will ever try something so crazy again unless the alternative is literally dumpster diving and living under a bridge.

This little hiccup, barely meriting a minor shrug in management, completely derailed the few plans we were trying to make to spend a little time together before Bobby left us again for three months. And all it would have taken to salvage the screw-up was the acknowledgement by said management that trucks do not drive themselves, they are driven by humans who have lives and families outside of their work. We could have avoided him being stranded with one change of clothes, in a borrowed truck with no food, no microwave, no coffeepot, none of the conveniences necessary to live in ones truck for twelve days in North Dakota, not to mention the loss of time with a family he thought he was going to get to see at least a few days before we all split up again for three months. There have been screwups like this in the past, but none quite so colossal. Or so casually brushed aside. And with the Gillette job looming over our heads, the thought that he would be living in his truck away from his family for three entire months...(cue one, lone, tumbling straw. It drifts downward and lands softly on the pile already sitting atop the strained back of the groaning camel...who crumples to the ground, back broken.) Bobby, who, just to be clear, in no way resembles a camel except in metaphor and maybe ability to hold water if that water is hot and infused with strong coffee, called his supervisor and did what he should have done months ago- quit. Gave his two week's notice. Which was not a decision he made lightly, because with no employment history, our being preapproved for a mortgage flies out the window. We had to turn lose of our dream of no longer renting in order for him to be able to quit the job. He still has to sit and wait for the sand to become available to haul back to Rock Springs, maybe Tuesday. Which will get him home late Thursday. He is so frustrated he says he really wants quit again today, since it felt so good yesterday. But instead of quitting every few hours for cathartic effect, he is reminding himself that the countdown is on, and he will make a few bucks these last fourteen days before we need to deal with the fires this will create for us.

What will we do for, you know, money? Good question. We're working on it. Our one foray away from self employment has been nothing but an exercise in frustration and waiting for someone else, seemingly less motivated than us, to find our work. When one relies on someone else to provide their employment, this means that one has no options when someone else drops the ball. If we were self employed again, as we have been most of our adult lives, we would always have the option to diversify, shake the bushes, try to scare up some more work. (See how I didn't even put quotes around the word "adult"? Yeah, it still feels like we're playing at this whole being grown-ups thing, but nothing will make you feel your age like having no idea how you are going to feed, house, clothe and provide medical care to the small humans you managed to make on two particularly fun Crested Butte mountain biking trips.) 

So we are scheming. Several postings on Craigslist by painting companies looking for help makes us think perhaps the house painting scene would be hospitable to another company starting up in town. Low overhead, just a guy with a sprayer, ladders and tools. It's not like we need to go big right away. Even one decent job a month would provide the same income trucking has been providing. It is surprising how low one's standards and expectations can be when one knows one is possibly just jumping from frying pan to fire. Me with my metaphors today, huh? 

I have been scheming, as well. Obviously my main job is being mom to these small humans, but what could I do at night or in the evenings, if Bobby actually had a job with scheduled, predictable home time? How could I get a degree while also being full time mommy? Could I write/make/sell/market/grow/sew something to supplement our income? 

As I was mulling this over the other night after I finally had the babies in bed, I got out my drawing pad and pencils, something I have not done in years. I have painted a few times in the last five years, but haven't touched my drawing pencils. My last memory of drawing was getting mad at a line that just wouldnt come out right, stopping halfway through a picture, throwing down my pencils, going outside, and then just...carrying on with my life. Eventually my drawing pad got shoved behind a couch where it stayed for many years and my pencils got scattered and lost. I brought my drawing pad home with me from Kansas when we were there for the fair, and just the other day, spent a few bucks on new pencils, kneaded eraser, and rub sticks. Now I have an ally I did not have the last time I drew. I have my ipad, which I can leave a reference picture on. With just the swipe of a finger, I can zoom in so the problem area is the same size as the problem area on my drawing, and carefully, line by line, transfer the picture until it is exactly the same. I did not do this so much for the art of it, or the creativity, but because I was feeling a little sad that I cannot afford to do portraits of my babies right now. Even if we could afford the actual photo session, we could not afford the prints. But cell phone photos, I have by the hundreds, and if I cannot afford to get prints that look professional, what I can afford is a large piece of paper and a drawing as close to photo quality as I can make it. I'm excited and pleased with how they are turning out. I have one of Daniel and Alex, and one of Daniel holding his chemo duck (the stuffed duck with a "port" he got his first week in the hospital so he's not the only one in the family with tubes hanging out of his chest) so all I have left to do is one of Alex. Which I did today while holding him on one knee and letting him nurse, but I didn't like it. The light was weird in the photo and I tried to fix it in the drawing, but it turned out weird in the drawing as well. I took more photos of Alex this evening on the back patio when the late afternoon light softened. I'll try again another day. 

I decided to own the fact that he is sick in this picture. Other times in his life, he will be posing with soccer balls or skateboards or whatever he is into. At this time in his life, his cancer is consuming all of us. But I love the way, in the photo, and I hope I managed to capture it in the drawing, his eyes are merry and sparkling in spite of it. He is one of these people who smiles with his entire face, and the smile transforms him from the thoughtful old soul he usually is to a whole other person, the impish little devil he should be at two and a half.

I googled custom portraits online this morning, and was not discouraged by what I found. Some were amazing and some were...not. Seems like mine are maybe not exactly amazing, but if I do say so myself, they're not as bad as some that are being sold. Well, advertised. I don't know if sold. Maybe that's something I could do for a few extra bucks.

The other thing I have been working on while Bobby is gone is the last few steps to qualify Daniel for a Medicaid Waiver. This is supplemental Medicaid, secondary insurance for insured but medically fragile people who make (or who's caretakers make) enough money they don't qualify for Medicaid or Supplemental Security Income, but who are at real risk of losing the assets they do have due to a diagnosis. This is to keep homes from being foreclosed on, vehicles reposessed, etc, when ordinary people like us who are, for the most part, kinda-sorta "making it" suddenly get hit with high medical bills. This is another thing that is probably going to get complicated, because the medical financial aid programs available change depending on income levels, and we have a very fluctuating income level. It has already been complicated, and now that we don't have a job, if we suddenly drop below a certain income level, the fact that we are on it becomes problematic and legally complicated if we drop into a lower income bracket where another program is allotted to fill the need. But it is something we still jumped through the hoops to do because this current insurance policy ends in November, and since we changed states, we must now change policies, and most other policies start in January so we were facing a gap in coverage. Plus the supplemental Medicaid should now cover prescriptions. I am slowly stopping the hyperventilating I've been doing when I think about all the bills we could potentially get hit with. The biggest bills, we are learning, come from ambulance rides. Because they will use whatever service is available, regardless of who is in-network, we have had to pay half of every transfer so far. And transfers can run into thousands. Our last transfer, from north campus to main campus, the doctor on duty would not hear of us driving him ourselves in spite of the fact he was not critical. I only noticed as I was signing the release that I could have refused transfer. Next time, provided he isn't critical, that is what I will be doing. Although now, if we have Medicaid to pick up that bill, shoot. No worries. Right? For the first time, we are thinking we will be okay. Now that the panic is leaving, we realize it was there. A month or two ago, we'd have sworn we weren't too worried. And believed it ourselves. But now that we have a safety net, it's easier to see the worry we wouldn't let ourselves admit then. 

Daniel's hair has started growing back. It never completely left, actually. It just got so thin we cut it short so it was less reminiscent of a certain badly combed-over TV personality and presidential candidate. New down started growing in before the old, longer hairs all fell out. Personally, I can't wait for his shiny little boy hair to come back and for him to more closely resemble himself back when things were normal, but at the same time, his bald-ish head has created a narrative for us so we do not have to explain ourselves. This has been an ongoing theme for us (well, me. I can't speak for Bobby),  the feeling that we owe those around us an explanation when something about us does't fit a standard narrative. Which is more about owing ourselves relief from their judgement than it is about owing them anything. During induction, it was the fact that he was a tantrum throwing, overweight, inactive little monster. It was so uncomfortable to feel the waves of judgement, probably real, definitely imagined, radiating off those around us. And the almost perverse pleasure of seeing the judgement leave their faces if we bothered to change their assumed narrative to the correct one. The instant a stranger's view of him changed from entitled little sociopath to tiny hero fighting for his life was...good. Like a drink of ice water on a hot day. Like coming home after a week in the hospital. The stress melted away as we saw them suddenly see us for who we were instead of who they assumed we were. 

Now it is the fact that I hustle him away from other kids at the playground, that if I so much as hear a sneeze, I swoop in like a mama hen, brush him under my wing, and sidle away, looking around suspiciously for the culprit. I chase him with a big yellow tub of antibacterial wipes in public places, grabbing his hands away from surfaces, wiping down the ones he is inevitably going to touch, smearing his hands with antibacterial gel every few minutes, shrieking at him to get his fingers out of his mouth, don't lick that, that's not food. I look completely deranged. I look like a paranoid germaphobe, and I'm sure other moms are sitting there thinking, "sheesh, lady. Let your kid live a little. Helicopter parent, much? Creating lifelong phobias and psychoses, much? Poor kid. I bet she's judging me, too, for letting my kid run around licking doorknobs. Well, fine. She's gonna judge me, I'll judge her right back. And maybe tweet about it while I sit here to make myself feel better about having fed my kids donuts for breakfast." As if real-life social interaction isnt enough of a gauntlet to run already.  

Enter the bald head. Instant ah-hah. The unmistakeable clue that what you are seeing is a mom just like you, probably not crazy at all, who got thrown into crazy circumstances. Because the most easily recognizable statement cancer makes is that shiny, bald skull. Of all the things it does to a body, the one everyone fixates on is the most visible one. The dark circles under his eyes could be bad parenting allowing lack of sleep and donuts for breakfast. His clumsy, stumbling feet could be a developmental delay. But the bald head is a dead givaway. And immediately, the judgement leaves, and in it's place, usually an earnest attempt at understanding. 

And so it all comes down to the question of what kind of person are you? Do you march to your own drum? Do you live not caring that you are being misrepresented? Do you need the understanding and support of those around you, or do you feel it is none of their business? This is not the first time I have come up against this question, this unresolved part of my emotional landscape. Deaths of friends and family, my childhood that was not always placid, the emotional aftermath of three miscarriages have taught me I am not generally okay with people making up a narrative about me based on my temporarily wrecked appearance, I must give them clues to a more accurate one so I am free to deal with my own stuff, already freaking hard, without feeling the added weight of judgement. Apparently I do not do well at all with unjust judgement. And obviously, my son's cancer is all about me. Obviously.

Which is what it all really boils down to. His hair regrowing, and my complicated feelings about it, begs the question of who this is really about. I mean, he's two and a half, so it's hard to know if he feels different, or feels the need to seem the same as his peers. Probably not, at this point. He simply is, regardless of how he is viewed. Self aware he is not. His life is a series of experienced moments lived from a single perspective, promptly forgotten, never revisited, never analyzed. It is me, the adult, who acutely feels the need to conform, to narrate, to honor him, our family, and myself with accurate self-expression. This is probably why it is therapeutic for me to blog about it- my own narrative becomes the official one. Is this okay? Although I strive for objectivity, my feelings are often extremely subjective. This also begs the question...is it okay to make this about me? How far might I take it once I decide it can be about me? We all have our own needs within a family unit, and I struggle with seeing this as strictly Daniel's fight. I see him more as the battleground for our family's fight. I catch myself, all the time, saying things like "our chemo", "we got blood drawn", "we threw up in our carseat", "we had diarrhea running down our legs in the clinic". Which is kinda hilarious, when one ponders these statements literally. But when I think about it from Daniel's perspective, I wonder if I am robbing him of his ownership and his personhood. Or if absorbing him into our family unit is just the natural order of things when one is two. So far, he has seen no need to assert his own personhood in any major way, such as weaning himself, choosing to sleep in a different room than us, wishing to play alone. Maybe me seeing him more as an individual will come when he starts presenting himself as one. Which, now that I think of it, does happen in small ways already- feeding himself, the fact that he takes himself potty and is offended when I suggest he might need to go, his insistance on picking out his own clothes.

And on that note, I should run. Grandpa K is here holding babies, playing with Daniel, and working on my car, which waited until B left to decide to have the battery die every time I didn't drive it for a few hours. Grandpa accompanied us to the lab this morning for bloodwork, trying again to pass to start chemo on Wednesday. If "our" ANC is 750 or above, we will check into clinic first thing in the morning for a lumbar pucture, then stay for the next several days in the hospital getting our first high-dose methotrexate. New chemo treatments are nerve wracking. But this is the first time we have known in advance we will be in the hospital, which opens up a whole lot of possibilities as far as how prepared I can be to be gone. Right now, the carseat cover and straps are in the washing machine after our last vomit episode. Not returning to a hot car that smells like vomit after four days in the hospital? Priceless.