Livin' la vida loopy

Hello from the land of sorta-normal. It feels weird. We still feel like we are living dangerously every time we leave our house. And quite honestly, we might be. We won't know until February 12 how Daniel is responding to his current dose of oral chemo. It is at "100%" right now, the baseline dose. If, on February 12, his absolute neutrophil count (ANC) is below 150 per 10 3/ul (you're welcome, my nerdy few to whom this means something) or, as more commonly stated, 1,500 (we healthy people have a range of 1,800-5,400) we will know that he responds well to oral chemo, so he can be put on a lower dose next month. If it is higher, he will need to be put on a higher dose to bring it down to around 1,500. In the meantime, we are Schrödinger's Neutrophil. Simultaneously there and not there. 

We live our lives accordingly. We leave the house, but we ask beforehand if everyone we plan to see is healthy. We compromise by playing outdoors instead of indoors when we go somewhere. We still don't take him into stores, but we did brave a Mediterranean restaurant one day this week. That was an embarrassingly exciting falafel platter. We bargain by only doing fun things every other day or so, to give his immune system a break to recover from our last outing. I don't think this is actually scientific or very effective, but it makes us feel all proactive and responsible while still getting to do fun things.

If you've been reading this blog for awhile, you'll recall that, aside from keeping a casual eye on red blood cells and platelets, Daniel's ANC is the all-important number. This number determines whether or not we can leave the house. Neutrophils are little white blood cells that float around eating foreign bacteria and viruses. If he has no neutrophils, bacteria and viruses are free to multiply at will with nothing to stop them. 

See the cells on the right side of the diagram? At an early point in the process of lymphoblasts turning into mature B lymphocyte cells in Daniel's bone marrow, they go wonky and turn into completely useless bulk with no "off switch". So, ya know, cancer. Which then crowds out all the other cells. It's a fine line his doctors walk between keeping his bone marrow suppressed enough that it has a greatly decreased chance of creating any more wonky cells, and active enough that he can actually, you know, have a life and not die from an opportunistic infection. Because they cannot selectively suppress only the B cells without suppressing all other cell lines, so they have to suppress them all just enough, but not too much. It honestly blows my mind that so many kids can go through this and not-die. 

It now occurs to me that I have blabbed about the existence of this blog to various interested (or merely polite) parties at Children's Hospital, including some impressive names in pediatric oncology. Who may read this and wonder whether they should laugh or cry at my grasp of pediatric oncology. If so, I would love a personalized lesson. Because I am educated entirely by Google at this point. I know just enough to know how much I don't know. And also enough to realize that it's a tiny bit more complicated than merely ingesting turmeric and cannabis and floating away all healed and immortal. Well. On this plane, anyway. You know, among the living. Ok, digging myself a hole. How about I just change the subject now. 

Our schedule is completely messed up. Yesterday morning, I went to a playgroup. This particular group has yielded some very supportive friends who really don't know us that well, because I took Daniel to it once, post-tibia fracture but pre-leukemia diagnosis when I was enormous and pregnant with Alex, and again one time post-diagnosis because I had yet to realize how drastically our lives had changed and just how compromised his immunity was, and it was outside in the sanitizing sunshine. And once post-induction, when he was still super fat and unable to crawl, so he just sat on a blanket and cried or asked to be held the entire time. It is a testament to how badly we needed a change of scenery that we braved taking him to a picnic to meet complete and potentially judgy strangers, as volatile as the mood was back then. 

Anyway. The playgroup. He played hard and had so much fun, cried when we left, I fed him lunch at home and he faded quickly. I nursed him a bit as we sang songs together (he loves humming along to my songs as we cuddle, rock and nurse), put him in his bed, and he was sleeping almost immediately. This was around 2 pm. Bobby had gone to work at 3:30 am and was supposed to be gone until 6 pm, but their next planned job was underbid by another company at the last minute, so he came home with no more work in the forseeable future. Could happen tomorrow, could happen a year from now. The nature of the oilfield. This was actually the first unscheduled time off he has had since his dubious promotion, so he didn't mind, but it's still a little unsettling any time it happens. So here is how the last twenty four hours have gone around here:

2 pm yesterday. I leave D in his bed and tell him I will be right back, I just have to go see why Alex is tragically falling apart downstairs. I nurse and rock Alex, who acts like he just might go to sleep too. Could it be? 

2:15. Alex gets a second wind. Screams if put down, but is only interested in trying to insert his fingers into my nasal cavities when being held. I carry him to keep him quiet and check on Daniel, who is passed out clutching Curious George and a plastic truck.

3:15. I'm scrolling through Facebook on my phone for the third time, checking my email for the second time, still holding Alex, who screams as though he is being threatened with dismemberment when put down. He keeps wanting to nurse, but also, definitely does NOT want to nurse. Also, clearly we'd both be happier if I would simply allow him to stick his fingers all the way up my nose, already. Also, he wants to be cuddled like a baby. No, not like a baby. On his tummy. No, not on his tummy. Hanging upside down off the arm of the chair. Actually, on the floor would be better. For the love of all that's holy, woman. Did you just put me ON THE FLOOR?!? 

4 pm. I decide daddy can watch/humor Alex while I clean the house, since I haven't heard much activity in the office where he was paying bills earlier, so perhaps he is just surfing the internet. I discover an empty office and a daddy-sized lump under the covers beside Daniel. Who is still breathing. I checked. Twice. 

I put Alex on my back in the carrier, hoping he will stay quiet back there so I can get something done. He doesn't. I take him out and sit with him on the basement floor surrounded by toys, and because I am sitting on the floor with him, he can be halfway content. Also, my hair is delicious. I color in my grown-up coloring book when he allows me to, a Christmas gift from a friend who knows me well. I get impatient with the picture being too intricate and taking too long to become beautiful already. Then I realize I don't have anywhere else to be so I fill a thousand little dots with pretty blues and violets and it is predictable and nice and makes me happy. Then I finish the picture and feel sad because now the next one is so very far from being as pretty and colorful as this one and I'm already impatient with it before I've even begun. I put away my colored pencils and reflect on the inconvenient effects of adult ADHD. Which I probably have. I mean, I was officially diagnosed as a kid. Ritalin literally made my school years livable. The fact that as an adult (or at least an overgrown kid) the smallest amounts of cannabis can focus me and turn me into a legitimately productive person makes me assume it isn't something I have grown out of. I haven't chemically self-medicated since before Daniel was conceived, having been either pregnant or nursing, or both, since. Writing is my current medicine. It is repetitive. It makes me slow down and think. It creates rhythmic flow to replace the jagged, disjointed jumble that is real life. For years of my previous life, art did that. Then running. Then biking. Mountain biking was my true magic bullet. The repetitive pedaling motion created calm, the beautiful mountain panoramas, the pain and the speed were sensory stimulation, the occasional dangerous thrills of near-crashes created adrenaline which left endorphins in it's wake, the exercise created a calmed, exhausted body to accompany a calmed mind. All things I apparently need to successfully pretend to be a well balanced individual. Except now I have kids, and a husband who works too much to allow me out of the house for even short rides, and art is almost impossible with two little helpers, but writing...sometimes I can write while also parenting. Sometimes. And sometimes, when the big one is sleeping and not helping, I can draw or color. When things need to get done around here, I listen to music or podcasts to occupy my mind so I can keep moving without having a thousand distractions get me all sidetracked, so I don't suddenly find myself organizing plastic totes in the crawlspace while forgotten muffins burn in the oven, a half-made meal sits on the counter, the dishwasher sits half-emptied, and wait...who's watching the kids? 

6 pm. Alex is full-on hysterical, having officially missed both of his naps. And still refuses to calm down. I get it, kid. I do. Here, let's just try some snuggling and boob again. I know we just tried this ten minutes ago, but humor me? 

6:15. Daniel wakes up. Four hours. How did he sleep for four hours? More importantly, what does this mean for bedtime? He crawls on my lap with Alex to nurse himself happy, still shaking off the sleepy cobwebs. And just like that, Alex stops sobbing, starts nursing, and his eyelids fall shut with an almost audible thunk. 

I lay Alex down next to the daddy-sized lump, then go downstairs with Daniel, suddenly feeling the effects of the last week of oral chemo-shortened nights. I make food for Daniel and me, eat it, then clean the kitchen. 

8 pm. I knock a mason jar off the counter into the sink, grab at it, knock a spaghetti pot over, grab for it instead and stub my toe on a chair, which whacks into a cabinet door. The daddy-sized lump wakes up. He appears in the kitchen doorway with a massive scowl and a sarcastic "Think you can make any more noise?" 

8:30. Having had some coffee, the daddy sized lump starts to resemble the less-scary, more-awake version of the daddy we love. He asks what I have made for dinner. I show him the Asian peanut vegetable salad Daniel and I had, and he opts for cold cereal. I take my first shower in three days, nearly fall asleep in the steamy bliss, and realize how exhausted I am. So, feeling like a true party animal, I give Daniel his oral methotrexate, which he takes every Friday night at bedtime, then leave him with his dad to watch whatever overstimulating junk they feel like, crawl into the bed beside Alex and become a mama-sized lump. 

9:30. Daniel starts to call for me, having noticed my absence. Daddy sends him upstairs. He joins us in bed. Still wearing jeans and big-boy briefs, unbathed and with unbrushed teeth. He nurses and cuddles for about a half hour, and falls asleep.

10:30. Daddy comes to bed. Alex wakes up crying, so I cuddle and nurse him back to sleep.

1:30. Time for Daniel's oral chemo, because it has been two hours since he last nursed. Except right then he wakes up needing to go potty. His loud announcement wakes Alex, who I have to let sit in bed and cry while I oversee the pottying. So now Alex is wide awake. And has slept for over seven hours. And thinks it is morning. And so is Daniel. So I change him out of his jeans into softer jammies, but leave his big boy briefs on. Living dangerously. Daddy apparently sleeps through this all.

I somehow get Daniel convinced to take his chemo, then merely cuddle with me without nursing while I keep Alex from falling out of bed by blocking his attempts with a foot and leg. Daniel seems to be relaxing, so I whisper that I will be right back, and he nods. Then I take Alex downstairs and attempt to rock him. 

1:45. I check on Daniel. He's sleeping. And also breathing. Weird, how easily he fell back asleep. Is there hope that oral chemo won't completely wreck us all?

3:45. Alex has squirmed, talked, squealed, giggled, tried in vain to find my nostrils in the dark, and has finally fallen back asleep. I creep back to bed. Daniel wakes up and asks to nurse. Guess what? It's been two hours since your chemo. Have at it, kid. 

5:00. Alex wakes up. I somehow sense it's going to happen, and come fully awake seconds before he does, and the second his mouth opens to cry, which will seal our fate and end our night, I shove a boob in it. He sighs, relaxes, and falls back asleep. I hear Daniel start to stir behind me in his bed, pushed against ours. As gingerly as I can, I ease the goods out of Alex's mouth, turn over as quietly as possible, and am right there in Daniel's face as soon as Daniel's eyes flutter open, so he needn't wake enough to try to get up yet. The confusion and panic leaves his face when he sees me staring at him from a creepily close proximity, and he nurses back to sleep. I sleep too, and have the weird recurring nightmare I have all the time lately.

I am back in the little white cinderblock house on the edge of the Smoky Hill River breaks, and surrounded by all the calves, horses, goats, sheep, pigs, dogs, chickens, guineas, and cats of my childhood. Everything is normal. Then I remember I have an animal, usually a horse, that is solely my responsibility to care for, and I start trying to remember the last time I fed it, watered it, or gave it exercise. Then I realize it has been locked in its stall, completely forgotten, for months. Sometimes I remember I've left a horse out at pasture for years without even checking to see if it is still standing. So I run to the barn or the pasture in a horrible panic, overwhelmed with crushing guilt and self-recrimination, knowing I am going to find it starved to death, asking myself how I managed to fail it so completely when it was so dependent on me for everything, when I was its whole world, imagining all those endless, excruciating days it waited for me to come save it while I was blithely living my life and then...I wake up, cringing from the horror of what I know I am going to find.

Of course, it doesn't take much of an expert to point out what is going on. Helpless small squishy things depend on me. Most of the time, solely on me, at least for their many daily needs (the fact that we all depend solely on B to provide for our actual existence probably gives him his own nightmares). Any time that I forget about them for a second and get involved in living my life, loading the dishwasher or folding laundry or even writing this blog, I jerk back to remembering them in a panic. Where are they? It is too quiet. Wait, did I put them to bed? Are they napping or dead? How could I forget I have two babies trying to kill themselves, even for five minutes? What will I find when I locate them? Cords/outlets/stair rail gaps/bleach/buckets/unlatched exterior doors/choking hazards/knives/top heavy furniture/plastic bags....what am I forgetting? And meds. Did I remember to give him his weekend antibiotics? His weekly oral chemo? His nightly oral chemo? Did I remember on Sunday, he was only supposed to have half a dose? Did I shut the garage door, or is the dog going to have access to the busy street? What if I forget to put the baby in the carseat and leave without him? What if I think Daniel is safely in the house but he is standing in the driveway when I back out? How do I know if I'm losing my mind? How do I know if the constant march of horrible possibilities through my head is an indication of an anxiety disorder or just being a parent? How would I manage to not do terribly stupid things without the voice in my head constantly yammering about horrible possibilities? Not to mention...what appointments have I forgotten to write down? Where should we be right now, instead of at home not wearing pants? Who else am I failing? And who put the ice cream away in the refrigerator again?

I feel like my biggest enemy right now is my own forgetfulness. Where is my brain? I have this constant uneasy feeling that I am most definitely forgetting something. But what?

 

Maybe it's just sleep. I'm forgetting to sleep. Yeah. I'm definitely forgetting to sleep right now, as I am lying here in bed obsessing over morbid things.

7 am. Alex opens his eyes, those big, beautiful pools of blueberry eternity rimmed by thick lashes that curl gloriously all the way to his eyebrows, his rosy baby cheeks lifting into a big grin at the sight of me, and he reaches for me, his chubby index finger plunging deep into a nostril. I jerk away, my eyes watering. The movement wakes Daniel. He realizes he has to go potty immediately, and because he was recently asleep, his legs are too wobbly to get him to the bathroom in time. I hit the ground running, dragging him with me, saying "hurry! Hurry! Don't go potty yet!" 

As I am helping Daniel pull his pants back up, I realize this is the first time he has slept all night without a diaper. Yesterday was the first day Alex went all day without a nap, which, while not really a milestone to look forward to, is still a milestone. And I am getting up nearly eleven hours after having gone to bed. On paper, we are looking gooood.

Bobby wakes up at 8:45. He wanders downstairs to make coffee, and asks me how it felt to sleep so well for so long. I am too busy wondering why there is a tiny sock in the egg carton to answer. 

Reboot

I always feel like, when I post during a gloomy spell, I owe it to my faithful few to reassure them when it's over, so they know it is safe to be around me again.

It is.

The weather has cooperated, I went outside, I played with my babies. 

Also, I went down hard with a stomach bug for about twenty four hours. I vomited frequently and violently for about five hours in the middle of the night, with babies sitting on me because I could not stop throwing up long enough to get them nursed to sleep, and when they did sleep, I couldnt manage to vomit quietly enough to keep them that way. So I allowed a late-night Clifford the Big Red Dog watchathon until they were both too exhausted to stay up and bounce on my volcanic belly any longer, then shivered and slept for about two hours curled in front of a space heater on the basement floor with them so we didn't wake daddy up before his alarm, then moped around the house all exhausted, queasy and achy for another day. No sooner did I feel somewhat functional again, then Alex sat up in bed in the middle of the next night and threw up all over himself and me, so I sat up all night the second night with him as his tiny tummy expelled it's contents several times per hour for the requisite five hours. And then, a day later, as he was sleeping off his second day of feeling yucky, Daniel went down. He threw up for eight hours. Poor kid was absolutely miserable. He literally lay around moaning. I suspect his massive pity party was compounded by it being the last day of a five day steroid burst. He would have had 'roid rage if he had had the energy. As it was, he just had 'roid heartache. And then the next day, daddy had off, which was a good thing, because he spent it either in bed or in the bathroom. What must it be like to not have to also parent when violently ill? I wonder. To just hide under the covers in solitary misery. Because as I was curled up in a ball with my knees under me and my forehead on the bathroom floor, begging higher powers for mercy, I had a nearly three year old drape his slippery new fleece blanket over me (so sweet, I thought), then clamber up onto my butt and slide down the slippery blanket, down my back and onto my head. (Not so sweet after all. Just a child's logic- who can resist a frequently erupting human slipper slide when one is up four hours past one's bedtime and totally overstimulated?)

But to have that all in the rear view mirror slapped my attitude right back where it belonged. After my body stopped trying to exorcise everything it had ever ingested, nothing seems quite so bad. In hindsight, it was a great reminder that there are a lot of really awful things I am not dealing with. Like trying to parent through chronic nausea. I really do feel like a petty little whiner letting things get me down like I did.  

Somewhere in there, the guest post I wrote last month about breastfeeding through my particular obstacles for Evolutionary Parenting (an attachment parenting website run by a PhD researcher mommy who I have a total girl crush on) went up, and like 70,000 people saw it, gentle mommies from all over the world read it and thought I was amazing and awesome. And then it was reposted on Kellymom.com's Facebook page. And another 300,000 people or so saw it. Which was incredibly validating, but also incredibly humbling. Because I do not feel like I am particularly amazing or awesome, I'm really just a one trick pony. And my one trick happens to be that I am breastfeeding my kids until they decide they don't need it anymore. And I am only doing that because I couldn't bring myself to fight the weaning fight when my kid was still so dependent on breastfeeding, and then balled up and got stubborn about it when my body tried to make me. And getting so many compliments made me feel like a total heel, thinking about the heroic battles every one of the women showering me with praise faces. Like working and parenting. Like low milk supply. Like lack of support. Like lives that are just too out of control to be able to sit with a kid attached to them for eight hours a day. Like depression, post partum or manic or just generally speaking. Like abusive and manipulative relationships that cripple their potential as mothers. Like romantic partners who refuse to acknowledge that breasts are not strictly sexual, but also feed babies. All the reasons some women aren't able to boob feed their kids at all, let alone for three years. And I realized I don't always give others the same affirmation I received from them. I communicate a lot, but it is all just talking about myself. This blog is my diary, but unlike my teenage self, I let everyone read it. I forget, sometimes, who all does read it. I assume that maybe there are a few who do. Like maybe my mom does. And a friend or two. But then someone I haven't spoken to in years reveals they know private things about me, things that are a little embarrassing and I haven't told anyone except... Oh. Right. The internet.

Then I realize, with great wordiness comes great responsibility to build up those who are struggling. While I'm struggling, others are drowning. 

But you, our friends, have kept us from drowning. You really have. You have supported us with your own money, which has literally paid our bills and kept "real" food on our table while we have struggled with this ongoing employment insanity.

You have fed us. And clothed us. And made us laugh, cry, feel so loved.

Those of you in the religious sect we no longer belong to have not let what could be seen as our betrayal of your faith stand in your way of pouring your goodness on us. We have always assumed you already know this, but in case there's doubt, we have nothing but complete respect for your faith, even the few but critical parts we cannot wrap our minds around enough to find unity with you on, and to feel that same dignifying respect coming from you has been so comforting. You may not be allowed to share our table or our handshake, but you share our sorrows and joys, and this is worth so much more to us than the occasional sting of your church-mandated avoidance of us. 

My fellow cancer-and-other-devastating-illness moms, some of you fighting a much, much more terrifying beast that we are, you beautiful, amazing, ridiculous people. You inspire the crud outa me. The first mom to pop into my hospital room came to the oncology wing from her own child's bedside on another floor. She bounced in big, pregnant, and beautiful, a lot of brilliant red hair and even more brilliant wit, and she made me laugh at the insanity that accompanies her child's terminal diagnosis. I feel like I should repeat that for effect. Laugh. Terminal. Diagnosis. Her daughter was born with Type 1 Spinal Muscular Atrophy. If you don't know what that is, it's basically ALS for babies. A steady progression of a degenerative disease that wastes a tiny, perfect body when muscles cannot receive signals from the brain to move, so they atrophy until even the ones responsible for the most basic involuntary movements slow and stop. The overwhelming majority of babies born with it do not celebrate their second birthday. And she made me feel like as long as we had life, we had everything. She greatly compounded my budding survivors guilt, but in the best way possible. 

My parents, who dropped everything to drive five hours to see us any time we needed help, and who had to be convinced not to do it more often. The Alperts, who I feel like deserve their own category, they have done so much for us. Our new friends in our new town, who, in spite of us not being able to actually physically see them, have casually and easily stepped right into roles usually reserved for people we have known a long time. I feel strange about the fact that I consider so many friends here soul sisters, even though we've never even stepped foot in each other's houses. What can I say. Social media. 

And the ones who stayed away. I know, the irony that is compromised immunity. The biggest gift some people have given us has been to love us from a distance. You have no idea how we wish that weren't the case. We miss your faces. 

I know I'm writing as if this is all ended. And it isn't. We still fight until August 19, 2018. But why save it until then? Just know that when I do finally get over myself, I remember how incredibly blessed we are. And those blessings take the form of you. 

Also, happy birthday to our little hero. We and almost everybody we know were too sick with digestive or respiratory maladies to throw him a party as we had planned, but maybe we still can, in March or April. Maybe we'll combine an "entering maintenance" celebration with a birthday celebration with little brother's first birthday in April (they're too young to know the difference anyway, right?) Last year at this time, his face started changing. I thought he was going through a growth spurt and it was just losing its rosy baby roundness. I thought wrong. What it was actually losing was enough blood to fill it up. But that was his second birthday. His third birthday he is emerging a happy, rosy-cheeked little warrior with almost normal amounts of blood in his face. His baby fat is coming back, thanks to ongoing avocados. B and I both got teary yesterday, going back through photos of his life so far. It has been the most wonderful experience, parenting that one. And his baby brother. Not that we haven't been elbows deep in body fluids a good part of it, and not that we don't miss the winter days we once spent knee deep in our favorite powder stashes as we sit in our house all winter shivering and poking our jellied midsections dejectedly, but still. Worth it. 

Avocadopocalypse

Well, January 4 came and went. Bobby was home, so he and Daniel went down to Denver to get Daniel's last high dose chemo. Ever. Obligatory if. Alex had the sniffles, so I stayed home with him to not spread them around the oncology clinic. In the week since, Alex hasn't shaken the crud. It's gotten worse. I had a sore throat most of the week, but I finally shook it two days ago. And Daniel has been...totally, perfectly healthy. Not one time has his temperature gone up. Not one booger. Not one cough. And I know he's compromised right now. I am so puzzled how Alex and I can be sick, and Daniel, whose immunity is less than one tenth of mine, can be fine. Unless it's still coming. Or maybe unless it's a mild case of influenza. Because only Alex did not get his flu shot (we normally don't flu shot, but we took every precaution this year). Daniel's counts were not high when he got it, but they were just high enough an immune response was still possible. If it is a strain covered by this year's shot, that might explain why it has been the plague Alex has not been able to shake, while the rest of us have been only mildly affected or not affected at all. 

On the 4th, Daniel's ANC was 120. I suspect that was too early to have been to the bottom and be coming back up, I think that was still on it's way down. We will see day after tomorrow what it is, and if it is high enough to keep our scheduled 8:30 am appointment at the clinic for the first spinal tap of his two and a half years of Maintenance. If I've learned one thing well through this experience, its that I just need to stop guessing at what is going on in his body. I'm almost never right. We've kept him home from things we could have gone to because we thought his counts were too low, only to find out they were fine. 

We thought maybe we would celebrate our last chemo before maintenance, but instead, the day just felt like more of the same. More cold, brown winter. More chemo. More driving to Denver. It didn't feel like a particularly exciting day. I mean, it's cancer, right? You can dress it up all you want, turn as many things into celebrations as you want, but the fact remains that what you are celebrating isn't a victory, it's that the beast you didn't want to fight in the first place took a hit that made it blink a little. But just because you landed a punch doesn't mean there isn't still TWO YEARS AND EIGHT MONTHS of swinging left. There will still be chemo. Lots and lots and lots (andlotsandlotsandlots) of chemo. And I am dreading two years and eight months of oral chemo so much. During the "trial runs" with oral chemo we did during high dose treatment, I just got more and more exhausted the longer he was on it, and by the time the two week bursts ended, I was a sleep deprived zombie. Oral chemo is a huge problem for us. What we do when we aren't on it works. Beautifully. The way Daniel sleeps next to our bed in his adjoining bed, and in the middle of the night, when the bad dreams wake him, he slides next to me and softly asks, "boop?" And as soon as he nurses, his tense little body relaxes and he falls back asleep, as do I. Unlike the nights when I can't nurse him, and his soft, sleepy requests escalate into loud, mournful sobs of deepest betrayal and wake Alex, who immediately assumes it is morning and tries to get up, and has to be dragged back and attempted to be nursed back to sleep while squirming, kicking, yelling and giggling, and then eventually wailing when he realizes night time is not over yet, while B, who is many wonderful things, but is not in any way a ray of sunshine when he first wakes up, says things in harsh tones he would regret saying the next morning if he even remembered saying them. Oral chemo steals three hours of sleep from us many nights Daniel has to take it. Whether it is because I stay up until after the required four hours of nursing-free time, punctuated in the middle by waking him up and giving it to him has passed, or leaving him to cry while I take Alex downstairs to try to rock him back to sleep, oral chemo is just...the shits. It really is. If I had a better word, I'd use it. But I don't, because it is a big, steaming, reeking, feculent, oozing bunch of...okay, fecal matter. (Why don't you tell us how you really feel? You say.) 

I don't want to wean him unless he chooses it. I don't. This time is so short, this time when he is so little. Do I want my body to be my own? Yes. Lactating? Over it. I am getting somewhat annoyed by the constant activity on my chest. I want to wear pretty clothes again, and real bras, and not constantly smell a little like sour milk. But I also see what it means to him. He has always been my snuggler. My little lover. My connoisseur of comfort. He thrives on that contact. Alex seems fine with a little snack and go, but for Daniel, nursing hasn't been about food since he was a year old. It is everything to him. It is a basic need, that reset in the middle of any stressful time that instantly returns him to his happy place. His need for it waxes and wanes, following the amount of emotional turmoil he is experiencing at the time. When his world is upended, he needs it a lot. When he feels yucky, he needs it a lot. When he is bewildered and needs help making sense of the world, he sorts things out while nuzzled into my breast. And when the good times return, when his world makes sense again, he barely acknowleges it. A few minutes at bedtime and he's done. But the mere fact that he gets jerked out of a deep sleep to have a hard plastic syringe of cold liquid shoved between his teeth bewilders him enough to need it again. And that's precisely when he cannot have it for at least another two hours.

Our chemo break right now has his face and scalp covered in bumps again. Every time we have a break, he breaks out. The hypothesis is detox. But this time, his scalp is also covered with the softest, downiest peach fuzz. It is impossible to be around and not compulsively rub it. Especially since it is located about hand elevation for an adult. He has had to simply accept that adults are going to rub his head without permission. They can't help it. They don't even realize they are doing it. It's just so soft and inviting. 

During this break, as soon as the nausea wore off from his last round, he developed a major avocado obsession. Every time he wanders into the kitchen, he asks for more "taos". It still gets me. I am not one of these mothers who somehow, magically knows what her toddler is saying all the time, when others are completely puzzled. He still has to train me. "Taos...towels?" I say. "Nnnnope! Ta-os!" He replies. "Your toes?" I ask. "No. Tah! Ohs!" And then runs to the refrigerator. "Oh! Avocados?" "Yyyyep! Taos!" He seems to be gaining weight. At least on his tummy. It's turning into quite the little Buddha belly, thanks to about a thousand extra calories worth of avocados per day. The effects of a diet comprised almost completely of avocados is...well. You do the math. I'm drowning in "guacamole". Potty learning is going great, actually, because he has like four enormous poops a day. And due to the extra oils, it doesnt stick to the inside of his big boy shorts. We can just roll his many accidents out of his pants into the toilet. But the amount of poop would make an adult proud. I mean, it's actually truly impressive that so much poop can come from one 33.6 lb toddler. (He recently weighed 15.3 kilos on the clinic scale! Seven pounds more than when he started treatment, we are up to our peak steroid weight, but it's healthy weight gain this time.)

With another big mile marker behind us, being closer to ending treatment also carries more worry of relapse being closer than it was when we began. Our obligatory ifs are threatening to become what-ifs. It seems like I have been coming across more stories of relapses lately. Just yesterday, I came across a blog written by a mom like me, with a kid who had the same diagnosis at the same age as Daniel- high risk pre-B acute lymphoblastic leukemia. She had even better odds than he does, because she was female, which comes with an upward bump in prognosis, her parents opted to put her on-study, which came with more chemo to prevent central nervous system relapse, and she was 100% cancer free after induction. Daniel, by virtue of being male, has a slightly lowered prognosis, hence the extra half a year of chemo over what he would be getting if he were a girl, we opted to keep him off-study, fearing side effects of the added drugs (plus, her on-study regimen relied heavily on PEG, so we would have been bounced off anyway once he had his reaction to it), and he did not quite meet MRD (minimal residual disease) at the end of induction. And she was fine. Totally fine. Until she wasn't. Until she relapsed, got an infection before anyone even really knew why she was sick, and within a day of them being told of her relapse, she died yesterday morning. 

Nine out of ten kids got to live at least another five years. She was the one who only got to live four months after her treatment ended and her port was removed at the end of maintenance. She started school. Her hair had finally reached her shoulders. Her parents started planning their lives again. Then she got sick again. Out of nowhere. 

This is my biggest fear. Do I actually think it could happen? No, not really. Nine times I can say no, and the tenth time, it's a maybe. Those are the odds. Well. Those are the odds of a fatal relapse. The odds of fatal treatment complications are somewhat higher. This is a number I don't know. Our oncologist says we needn't worry. He is doing so well. He is handling his chemo so well. 

Except, so did the kids who suddenly aren't making it. 

(Really? Shut up, dark part of my brain. I didn't give you permission to speak.)

As you may have gathered from my lack so far of happy commentary, I'm struggling a little. I wish I knew why. I've been feeling a little malcontent. I (we) really need a vacation. I've lost even the desire to go outside. The fog in my head and the heaviness in my limbs has me juicing lots of fresh veggies, attempting to do yoga while two wee ones use me as a jungle gym, reaching out to friends, trying to somehow introduce happiness and positivity into myself that isn't exactly there to radiate outward right now. I know I need to go outside and breathe outdoor air, but I would just rather cut off a toe than be colder than I already am. This house serves its purpose, but it does not seem to be particularly well insulated, and we try to minimize our footprint, both carbon and in our energy bill, by not running the heater at levels that would allow us to expose any skin below our necks. Plus, even though B is home about nine hours per day now, he is only awake about an hour and a half of that, and that time is spent showering, eating, and getting ready for another shift. Not watching babies so I can leave my house for a run. 

Winter will end. It will. It just seems endless right now. And we're tired. And housebound. But it will end. 

I hung a framed action shot of me flying down a trail on my mountain bike, bursting out of the deep pine shadows into sunlight, on the wall where I can see it. It was a trophy for being the overall winner in my age and skill category in a mountain bike race series back in 2011, my last race season. (I stood on the podium three days after my first miscarriage to receive it, after chanelling all of my hormone-fueled rage into the last race of that season and winning it by my largest margin ever.) The picture is from an earlier race, and my hair is flying from under my helmet, I'm grinning, and I look muscular and badass in my sponsored spandex. It reminds me that I wasn't always who I am now. And I won't always be. Everything changes all the time. And while I am struggling to find my happy, babies are getting bigger, and they'll never be who they are right now again. I don't want to miss that because I can't seem to be able to get past my first world problems.

But also, sometimes, I can't help it. I go where I don't want to. Sometimes, when I awake in the middle of the night to Daniel snuggled into my side with his head on my shoulder, I imagine waking to him not being there. Sometimes, when he makes me sing a particular song when we are rocking and snuggling, like the "fly, fly song" (Daydream Land, by Jewel), I have the thought that we would play it if we ever had to have a funeral...Shut up, brain. Just shut up. 

When things happen, people hypothesize as to why they happen. I have friends and readership of so many faiths and lack thereof, so I purposefully stay away from discussing our beliefs on this blog. It has become a place for me to explore the human side of our journey, the side that everyone who might have a similar experience will hopefully be able to relate to. There are blogs to proselytize and convert and convince of the existence or benevolence of a deity. And there are blogs to explore what it means to be human. I have more questions than answers to have this be the former, but being an honest, vulnerable human, that I can do. And that, I know well enough to write about. 

So instead of talking, which we often feel poorly qualified to do, we listen. We come from a background even conservatives would call conservative. I'm not kidding. We weren't horse and buggy Dutch, we had cars and electricity, but the "plainness" of our lifestyle was monitored closely by those in charge of their flock of faithful followers. Since they made the decision for us that we could not ask the questions we were asking from within the sterile walls of the religion, we have come to respect the many, many opposing beliefs of not only where we came from, but where we are. The places we have lived have been such cultural and religious tapestries, and it was in these places I realized everyone has their reasons. Valid, legitimate reasons. The way they believe is sacred to them, even when in complete opposition to others. And the most amazing friendships I have are the ones where we can gather and share the human experience without agenda.

But to ignore it completely, I suppose, would be to ignore a part of the questions we ask. Because we really have heard it all, I think. And that is okay. I appreciate people voicing to us their best guesses at making sense of the world. I appreciate the glimpses into their minds, seeing the world through their eyes.

And so we have heard that this might be our fault. Because of lessons we need to learn. 

And that it is punishment for past transgressions.

And that it is a test of our (name the virtue). 

And that it is a consequence of medical choices we have made for him. (X-rays and a Renal Lasik Scan at six months, fearing constricted ureters, or maybe us giving him his vaccines.)

And that it is just a consequence of living in a broken world. But one that is under full control of a benevolent God.

What have we gleaned from the many hypotheses shared with us, and our own experience? Things happen. They just do. They happen whether or not one trusts they won't. They happen whether or not one is thankful that they haven't happened yet. They happen to well balanced individuals and crazy ones, to good parents and bad ones, to rich and poor. Aside from a few lifestyle and genetic factors, cancer, especially childhood cancer, does not play favorites. And to think they are all micromanaged by a supreme being raises questions I am not sure I can answer, like why, if faith is the deciding factor, or bad things happen because we are being tested, or being punished, or being taught lessons, middle class and wealthy people must be the teacher's pets, because we get to have cancer be the worst of our worries while elsewhere, kids die of starvation, parasites, lack of clean water and lack of basic healthcare. 

So all we can do is shrug and acknowlege that we simply do not know. And be okay with not knowing. We had a round of bad luck. Others are dealing with luck so much worse than ours. We've also had some amazing coincidences fall into our laps. Things just happen, and nobody is immune. What matters is how we respond to them. To not let them define us. To love everyone, not just those who echo our sentiments back to us. 

And on that note, you, my amazing group of family and friends are so loved.

(Update: it took me an entire week to get this written this time, between all the interruptions! So his ANC was 1,000 on the 15th. Whatdya know. That was the day we started maintenance. We are now three nights into 947 days of maintenance. 947 nights of oral chemo. Three mournful midnight betrayals down, only 944 to go.)

And here is another picture of my little hero being brave.