Notes from the trenches

A few things have changed for me since that fateful April day we first heard the words "this may be something like cancer". Here is a partial list.

I cannot say things like "my kids are driving me nuts" without immediately feeling I should take it back. And then getting a little weak in the knees knowing what a privilege it is to raise children who have the ability to do so.

I cannot indulge in self pity without the acute knowlege that as far as cancers go, millions would kill to be us. Parents who hear the words "your child has leukemia" arm themselves to fight and worry about the future. Parents who hear "your child has an untreatable (degenerative disease, tumor, condition) know the odds of their child having a future is stacked against them.

I add a mental footnote to every plan that involves the future.*

 *If. *If this disease does what it is supposed to. *If there isn't a relapse. *If (unnamed, sinister posibility).

The things I thought I would feel, should my child ever be diagnosed with something that would kill him if not successfully treated, I don't. I thought I would feel a lot more despair, fear, anxiety. Instead, I feel a mix of awe at our good fortune of having the option of treatment and helpless anger at the assault on Daniel's innocence and the utter lack of reason in a child getting cancer. The anger under the surface of every lighthearted conversation is still surprising to me. As is the way these two seemingly opposing emotions fit together almost seamlessly with no apparent acknowledgement of each other. Like a couple married for sixty years who are as familiar with each other's movements as their own, but yet somehow manage to go for weeks without noticing each other's new haircut.

I don't think I believe everything happens for a reason. Believing this means believing an innocent, undeserving child is paying a ridiculous price in suffering for some obscure scheme to come to fruition. Believing this raises questions I can't deal with. Nor can I deal with the dissonance it creates in me to believe that a child might be expendable collateral damage in some grand project of personal or societal betterment. It is a far easier thing to accept that there is no question, no reason, a cell simply became disrupted and divided abnormally, and so did it's subsequent generations, and here we are after those cells crowded out the healthy ones. It didn't happen to us for a reason, something worse didn't happen to someone else for a reason. It just is. Time and chance. And now we deal with the raw deal Daniel got.

I feel simultaneously more connected and more isolated than before. People have reached out to us from the most unexpected places, people we have driften apart from and not spoken to in years. Friends I used to be in almost daily contact with rarely call me with random things they consider to be petty compared to what I'm dealing with. When I ask friends how their lives are going, before they tell me of daily frustrations, they qualify them through the lens of Daniel's cancer and downplay them before relating them to me. As much as I understand the daily grind of the small problems women commiserate about and help each other through, sometimes the thought does come unbidden that to have annoyances be my biggest worry would be luxury. But I miss mundane. Mundane makes me feel normal.

Sometimes I realize I have responded to something stressful with the sort of patience I wish I had. Sometimes I realize I have responded to something with love and empathy that actually merited banging my head against a wall. And sometimes my BS meter pegs out and I walk away. Anger or frustration over situations of daily life has become tedious to accomodate. Sometimes the high road, or rather the emotional bypass, while enabling less than ideal situations to continue and less effective for avoiding future repeat conflict, is just easier. 

Time in hospitals moves differently. In the lack of stimulation, time sometimes flows by unnoticed. In the same way pre-child me used to love long, sensory-deprived runs and bike rides after dark because they seemed to go by faster without landmarks to mark progress, suddenly I notice the sun has dropped behind the mountains from our seventh floor window and I have no idea what we did all day. We live in the cubicle that is our room, our daily routines shrunk down to an approximately 12x20 room dominated by an IV pole, and sometimes, time inexplicably shrinks as well while below us on Colfax Avenue the traffic moves, the world turns, the tiny people live their lives.

And the practical stuff. 

We've learned to shower in the morning, as early as possible, to experience warm water on 7 west. (7 east has abundant hot, or at least warm water, which somewhat compensates for the added restrictions over there.) 

We always order the maximum allowable food from the room service menu. Someone will eventually eat it, if not the patient. If you don't have an extra package of crackers hidden in a drawer, you may end up eating your own face in a bored moment.

When one hits the call light, it can take a long time for someone to show up, but foul up the bathroom that has no fan in the small space four people live and experience bodily functions in, and within seconds the room will be full of nurses, doctors, child life specialists, social workers, and even a housekeeper or two. I don't know how this works so efficiently. I have decided that in the rare event of a code situation, the effects of yesterday's broccoli will probably be more effective at generating a quick response than hitting the blue code button on the wall. Truth. 

Sleeping in hospitals is like camping- only your first night here is sleepless. After that, the exhaustion pushes you into slumber no matter what is going on in your room or outside your door. In this way, multi-day stays are best. The longer you stay, the better you sleep. Although somehow, you still manage to look like a strung out, greasy-headed druggie with big red veins popping out of the whites of the eyes and the inability to form coherent sentences. I hit the call light to report a beeping pump with a readout saying "Infusion complete". When the disembodied voice through the speaker asked if it could help me, I asked it to tell our nurse that our confusion was complete. Clearly, my mouth knows my brain better than I do and says what's actually on my mind. 

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.

Fair's fare

Hello! Welcome to the hamster wheel. You think you'll run just a little faster to keep on top of things, but no. Then things just come at you faster. 

At the moment, my mom is visiting for a few days. She is reading to the biggest baby while the smallest one sleeps. This should be the time I clean and get things done, but here I sit. Granted, I am on hold with customer service trying to resolve an issue that I have been needing to deal with for awhile, have taken Alex to his four month checkup, went with my mom on a eight and a half mile bike ride, did a little yoga on the back porch with my mom while Daniel "helped" us...

...went to Ft Collins and bought a bridesmaid's dress twelve sizes too large (long story, short explanation- procrastination) so my mom can help me alter it to fit, and went to a farmers market. Now I have more phone calls to make this afternoon and some house showings to set up. Our preliminary house shopping is a little depressing, realizing how little we can actually afford. One by one, our must-have list has shrunk. Pretty much the only thing that has survived the chopping block at this point is a small patch of grass for the dog to let himself out to use when we are gone. I realize if we were as "farmer" as where we come from, the very continued existence of the dog would be on the chopping block. But for us, an animal family member is a commitment for the life of the animal. It is still important to me to have my boys grow up influenced by the gentleness, the non verbal communication, the unconditional love that is a family dog.

We drove to Greeley to get a feel for few neighborhoods that had promising houses, because Greeley is slightly less expensive than Loveland is, but once we got over there, we felt something was missing. It felt more like Kansas or Nebraska with the smell of feedlots in the air and acres of cornfields, the mountains just a small part of the horizon. We love living here in Loveland's gentle foothills, close to biking and hiking trails, just a skip up into the mountains. Not to mention being only six miles from Ft Collins. If we can manage to find something in Loveland, we would prefer to live here. Even though we could probably find a newer, nicer house for the same money in Greeley. 

I have told B for years that the most important part of a homeownership to me is not necessarily the size or niceness of the interior, but an exterior that invites us outside. A covered porch, a little patch of grass, shade trees, all at a much higher premium in my mind than granite countertops or hardwood floors. The one request I do have for the interior is a kitchen that is not separated from the rest of the house by a wall. I spend so much time in the kitchen that I either want the ability for my family to gather, live, and play in the kitchen, or a kitchen that is just a part of a larger living area where said activities are already happening. Otherwise, I know from experience, the kitchen will be merely a place to let the tuna salad sit out all day as I am engaged with living and parenting in the rooms where my family is. Not the place to spend hours creating healthy meals, then actually cleaning up after. I do not understand why the organic flow of living has to be interupted by mama going into a separate area to cook and do dishes when it seems so simple to put the kitchen in a part of the house where the flow exists to enable easier multitasking.

We are almost done with our two weeks of Erwinia. The shots are painful and Daniel always cries. Worse, they are giving him a fear of needles he didn't have before. Now blood draws and port accesses have become more traumatic as well. His thighs have five distinct bruises each from his five shots in each thigh so far, and after he sits in his car seat on the way home he usually wants to collapse and cry when I lift him out of the car seat. After he has played for awhile, moved around and worked out some of the soreness, he gets happier. Unfortunately, this is only the first of three two-week rounds that have to happen in the next six months. The mechanism of this particular chemo is such a staple of treatment against leukemia, they keep telling us, it is very fortunate we at least have the option of plan B when a life-threatening reaction develops to plan A. An IV version of Erwinia is in the works, but not tested for efficacy to the complete satisfaction of those who approve such things just yet. 

Every time we go into the clinic, Daniel runs around more and gets into more trouble. I remind myself often, as I am chasing him up and down the halls as we wait for an hour after his Erwinia before they will let us leave, that this day seemed light years away back when he did nothing except sit, eat, cry, cry more, eat more, watch movies, eat and cry. Patience with his antics becomes much easier when I remember how I looked forward to this day. And it only takes looking beyond my own self absorbed nose to the hospital around me to see kids who will never run around licking every surface, insist on "helpfully" pushing the stroller, wander into random rooms to say hi to whoever is inside. The "why me's" turn from "why did we deserve to get cancer" to "why do we deserve to be so healthy, in spite of the cancer". This photo is from one of our Erwinia days, killing time in our clinic room. The stethoscope they leave in the room has provided much fun for us on days when it is hard to entertain him with the books and toys we bring from home. 

 

I decided, over the weekend, that we needed a getaway. My hometown's annual county fair was taking place, and remembering how much fun Daniel had last year, I really wanted to see his face light up over the rides again this year. The Leoti fair is a unique one. Years ago, after a traveling carnival cancelled on them, the town decided to try to buy their own. It is an ongoing project of searching for, purchasing, and salvaging rides as other carnivals or amusement parks sell their old ones, local farmers with welders, torches and paint doing what they do, but this small prairie town, population 2,500 or so, now owns their own carnival- rides, games, the whole shebang. The entire town pitches in, volunteers assemble and run the rides and games and food shack for four days in the late July heat, church ladies and volunteers cook and bake to provide food, vendors come out of the woodwork. A rodeo and a big school reunion take place over the same weekend. The fair works to draw Leoti's scattered kids back home from wherever they have settled down after they left for college, jobs and families in cities- the promise of food, friends, family and fun proves irresistible year after year. 

We went to our local lab to determine if Daniel's counts were high enough to expose him to a county fair and he endured a particular ungraceful, vein-blowing poke, the first time he has ever cried over getting his blood drawn (granted, he took one look at the exam table and thought he was getting more Erwinia, which was cause for tears of dread.) His ANC was 1,200, which was great, so we cleaned and packed, and hit the road immediately following our Erwinia shot and Vincristine infusion the next day.

I invited my friend Ginta and her daughter SueJean from Summit County to meet us in Denver and drive four hours east with us. Ginta was crazy enough to trust her housekeeping company (with her help from a distance) to run itself over an extremely busy weekend, dropped everything and came along. We engaged in girl talk and caught up after having spent almost no time together since we left Colorado nearly four years ago. It was a little too hot to genuinely enjoy being at the fair during the day, so we accepted a tag-a-long dinner invitation with my parents for a wonderful meal at a friend's house, cooked by his mother visiting from Mexico. Then, a little miserable while digesting an ethnically diverse belly full, stuffed with lengua and sauce, chicken and sauce, rice and beans, and rice pudding, both traditional mexican style and Indian style, thanks to a couple from India also there, and my mom's mennonite style sweet salad and pie, we made our way to the fair as the sun was setting and the heat was leaving for the day.

In spite of not feeling well after his chemo (neither Vincristine of Erwinia are particularly nauseating, but it seems like they are for him- he had thrown up in the car, again at dinner, and would again all over me in bed at 3am), Daniel did have an amazing time. Grandpa rode rides with him when I was busy. Ginta held Alex while SueJean and I rode my one big-girl ride- I guess I've just lost my stomach for terrifying heights and fast speeds in my old age. Or maybe it was just all the lengua and rice pudding. We shut down the fair that particular day, staying until midnight, baby and toddler bedtimes notwithstanding.

Then we headed fifteen miles into the dark nowhere that is night time in western Kansas, the full moon illuminating beyond our headlights, to the farm we called home the three years we lived in western Kansas. Right now a caretaker is living there, but the arrangement is that he has one bedroom, and the rest of the house, the other four bedrooms, are still free for family use. My boys'  godpapa Leroy showed up in the wee hours after having driven six hours from far eastern Kansas after work for the weekend of fair activities. 

Next morning, we had breakfast at the farm and reconnected with Marvelous Marvels, Marv the farm cat, who we had to leave behind when we moved to Colorado. We killed some time until after naps, then headed for Leoti, spent the rest of the hottest part of the day at Bobby's brother's house with Aunt Marci, plus Uncle Jay and Aunt Wendy, cousins Ariel and Ahna, and Ginta and SueJean. We stayed cool inside, let the cousins play together, and when we got hungry, ran to the fair and brought back an enormous tray of the flavors Leotians associate with the fair- chili potatos, bierocks, pie. The fair menu, basically unchanged year after year, is as much of a tradition as the rides, games, rodeo, school reunion and dance. We couldn't decide between the pecan, apple, cherry, peach or rhubarb pie, so we just bought one of each and had the uneaten portions for breakfast the next morning. Then, again feeling too full to be able to comfortably subject ourselves to spinning rides, as soon as the sun dropped low enough in the sky to provide a little relief from it's harsh rays, we walked to the fair for another evening of giggles. I was the crazy mother there racing around ahead of my toddler with a big tub of antibacterial wipes, wiping down the rides before loading him on them. I was also the crazy mother who's child insisted that she ride with him inside the cab of the tiny truck ride...who attempted to accomodate him. I didn't realize until after I was committed that perhaps they have bigger seats in the backs of the trucks for a reason. But I believe I do win "most ridiculous photo" for the 2015 Leoti fair. (Not that that's a thing.)

I think Daniel may be dealing with a little chemo-induced neuropathy in his feet. He was happy to walk around at the fair, but he fell a lot. And climbing onto rides, lifting his feet up to step over thresholds proved problematic. Now that he is home  I am observing a little foot-slapping, he is a little pidgeon-toed and sometimes walks on the outside edges of his feet. His legs and knees are covered in bruises from his many crashes. He doesn't lift his feet behind his legs when he walks, he lifts his knees up in front of him instead, leaning forward at the hips to compensate. I assume this is to keep his feet in his peripheral vision as he is walking to assure he lifts them high enough to keep from stumbling on the floor or ground. This is probably due to his Vincristine. I've heard the sensation described as thinking you are at the bottom of a flight of steps, and discovering you have one more step left when you try to walk normally. The sensation is delayed enough it feels as though the ground is constantly dropping away under one's feet. 

It is now two days after I started this post. My mom is back home in Kansas. I have simply had no time to write in anything except five minute spurts lately. You might be a mother of young children if you take your ipad to the toilet with you for a few moments of freedom to write as you, ahem, multitask. (And then find yourself thinking, "If only I weren't so regular. I could justify sitting here longer".) 

Right now, while I finish this post, I am allowing back to back Netflix episodes of Daniel Tiger's Neighborhood, an almost sickeningly cute show featuring a lisping little boy tiger and his friends, plus little ditties to help young children through common childhood situations. The modern-day continuation of Mister Roger's Neighborhood. Today's lesson is, "when you feel so mad that you wanna roar, take a deep breath and count to four." Good advice. Although mama usually has to count to forty. If only adults had a four second reset. Bobby got so lonely for his little boy the three days he worked nonstop and we went to Kansas, he sheepishly admitted that he had actually watched Daniel Tiger's Neighborhood all by himself in his truck, sitting at a wellsite in Wyoming, just to feel a little more connected. One might have finally embraced the constant barrage of juvenility that is parenthood when...? Actually, Netflix time is a particularly sacred time for Bobby and Daniel. Daniel rarely gets to watch anything when he is home with me, but when B gets home exhausted and want to do nothing but sit in the chair and cuddle with his boys, all of my rules fly out the window. The other day, Daniel stumbled off, bored, to play with his toys halfway through a Curious George episode and Bobby and I suddenly realized he was gone about ten minutes later- we were too emotionally invested in George's latest misadventure to notice his absense. These are the things that make us wonder if we are actually losing our minds. 

It has been a little boring now that Grandma is gone. We did have so much fun with her. Hours of playing, leading her around by her finger, showing her our toys, sitting in her lap as she read, and even a trip to the splash park and playground, where we ran through the spraying water, climbed on rocks, and spun around (or spun grandma) on various spinning devices. Mom, with her constant preoccupation with baby Alex's needs, is so unexciting by comparison.

We are almost finished with our two months of Consolidation. We would be done right now, had we not had the reaction that necessitated an extra two weeks of shots. We are doing no treatments this week except the Erwinia. But Friday, we get bloodwork to see if Daniel will pass to start the next phase, Interim Maintenance, Monday. We are scheduled to check into clinic at 9am Monday for a lumbar puncture with general anesthesia with propofol, which does not block pain receptors, but does make them sleep and forget what they have experienced. As he is receiving his intrathecal (spinal) methotrexate, they will also start fluids in preparation for his high dose IV methotrexate. Within six hours of recieving his spinal methotrexate, he has to start his IV methotrexate, but he has to be well hydrated beforehand. Which, since he cannot eat or drink before his procedure, he will go in a bit dehydrated, so it will take most of those six hours to push enough fluids to start the IV chemo. At which point a room on the seven west inpatient floor should be available for us to check in to for the next few days. Forty two hours after they start his methotrexate infusion drip at 10ml/hr, they will stop it and start leukovorin, a drug that reverses the effect of methotrexate. I don't remember how long the leukovorin actually runs for, I think until all traces of methotrexate are cleared from his body. We cannot leave until the traces of it are not there anymore, either in blood or urine, I'm unclear which. They monitor him and as soon as he tests clear, we can go home. This will be three or four days, most likely. Three or four days of being tethered to an IV pole. Superfun. This will be repeated every two weeks for the next two months. 

Our road map for the next two months looks like this: 

Days 1-56- Mercaptopurine orally every night on a empty stomach (I actually dread this more than four inpatient stays. It has been so lovely catching up on sleep after the figt of our last two weeks of MP every night. Breastfeeding and having to take drugs on a nighttime empty stomach just don't mix well.)

Day 1- 

Vincristine

Lumbar puncture with IT methotrexate

Start high dose IV methotrexate

Day 2- continue high dose Methotrexate

Day 3- start Leukovorin and monitor until Methotrexate clears- could take longer than one day.

Day 15-

Vincristine

Start high dose Methotrexate

Day 16- continue high dose Methotrexate

Day 17- start Leukovorin and monitor

Day 29- 

Vincristine

Lumbar puncture with IT Methotrexate

Start high dose IV Methotrexate

Day 30- continue high dose Methotrexate

Day 31- start Leukovorin and monitor

Day 43- 

Vincristine

Start high dose Methotrexate

Day 44- continue high dose Methotrexate

Day 45- start Leukovorin and monitor

Day 64- if counts pass, start next two month phase (Delayed intensification)

This is what our entire treatment plan looks like:

Induction- 1 month. This was our first month, that horrible month of steroids, and the month in which the biggest changes happened for Daniel. He gained seven pounds on his 27 pound body, became practically homicidal, and also had his cancer knocked back from the cancerous cells comprising over 85 percent of his bone marrow to being around .6 percent. 

Consolidation- 2 months. This would have only been one month, had we had fewer cancer cells left in his bone marrow after induction. I am unclear on if each phase after this would have been one month and became two months when we became high-risk, or if they would have been two months even on a low-risk protocal. 

Interim Maintenance I, 2 months.

Delayed intensification, 2 months.

Interim Maintenance II, 2 months.

Maintenance, 3 years.