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. 

Getting Weird

I started a post that outlived it's relevance before I got it finished after our Thanksgiving hospital stay. I reread it the other day and wondered if I should post it, because it will be lost if I don't and the emotions are still a part of this process. Wouldn't want to lose those, right? Right? 

Then, this morning, I had a bit of an epiphany that made me process a little of what I said in it. More on that later. Here it is. 

I had a weird feeling this time in the hospital. Something I've never felt before. Something almost embarrassing. 

I enjoyed it.

That's it. She's officially nuts. Run, before any of the crazy lands on you.

The thought of coming home felt like entering isolation. Sure, 4 am vitals, frequent IV bag changes, frequent monitoring of the fevers were a pain, but they were performed by living, breathing adult humans who were responsible and adulty. Sure, hospital food is not exactly fodder for a discerning palate, but did I have to scrounge in the fridge to come up with a menu, and then go to the work of preparing it, then clean up the mess afterward? And even though I don't really know our doctors and nurses, every few hours I had actual contact, with words and everything, with real, word-using people who possessed fully developed social skills and did not have to resort to communicating by crying and pointing. 

Maybe it was the way it snowed every night, so the lights of the city reflected off the clouds hanging low outside the big window in our room, on the back side of the hospital overlooking the grounds, not the street, parking lot, and cluttered roofs of the front side. It felt cozy, protected and safe. Unlike our new house, which sometimes feels unfamiliar, lonely and a little creepy when B is not home. We were not on isolation, so we could go play in the halls, which were practically deserted, given the low patient room occupancy and the fact that it was over the four day Thanksgiving weekend. 

Now that we are home, though, I am really enjoying it here. There is space. Quiet, aside from the babies, and textiles to absorb their racket. All of Daniel's toys. Netflix on the TV. Floors I feel ok about a baby and a compromised toddler crawling and playing on. Not to mention the glorious, glorious sleep we all got last night. It's good to be here. I don't know why I was being so weird about it. It doesn't feel creepy, just lonely. And I'm running the furnace at 67 degrees without guilt. Being warm makes such a  difference. 

I've been processing the fact that we are almost done with the first phases of Daniel's treatment and are about to enter maintenance. Like leaving the hospital and going home, it's a good thing. And like being discharged, I have to go and be all weird about it. For eight months, and one more to go yet, we have lived and breathed Daniel's treatment. We want to be normal, but what ever will we do with ourselves then? Just...be normal? Without living in Cancerworld? But...this is where we live. It's become familiar. I feel a little panicky about it ending, for some reason. Like maybe even my identity has gotten a little wrapped up in this whole process, and I'm going to have to unravel it now. Like the fact that we have become oncology parents has become a cancer in itself, and has invaded and metastacized to the rest of our identity, and now we have to start to excise it. And now will have no unique experience or perspective to offer, because we will become just as normal as we ever were. 

I am sure, positive, in fact, that ending this most intense treatment will be exactly like coming home was. As soon as we walk through the door into our new, boring, normal life, we will recognize that it feels and smells and sounds...nice. Like we can go to bed and sleep for hours. Like these eight months were a weird dream. Like we can't wait to put them behind us and conveniently forget that every day, more kids are diagnosed, more journeys begin, more lives are shattered. 

****

I think I have finally laid a finger on this troubling feeling I have had ever since that first full day of our new normal, April 23, the day I googled ALL and read, 90% survival rate. There has been a huge procession of emotions through this crazy head of mine, but one has stuck with me and it has created more awkward conversations than I want to admit. Almost always, when people ask about Daniel's diagnosis, I preface it with "just". Just ALL. Just pre-B. High Risk, because we didn't quite hit minimal residual disease at the end of induction, but not Very High Risk, still a great prognosis. I can't bring myself to speak of his journey without bringing up others whose journeys are harder, longer, or have less of a chance of success. I suppose the rest of you have seen this for a long time already, having the advantage of stepping back, scratching your heads, and asking yourselves "why is she even blogging about this if it's no big deal? Why does she insist on reminding us at every turn how much worse it could be?" I can't believe it has taken me this long to recognize a textbook response to trauma. I've spent most of my 32 years navel-gazing, trying to force past the walls my brain throws up to fool me, trying to see what is actually happening in the murky corners of that brain, trying to become as self-aware as it will let me. I read somewhere, once, that people who experience frequent lucid dreaming (where the sleeping dreamer knows they are experiencing a dream and can control the direction the dream takes) are less likely to be fooled by the waking directions their brain takes, to see through the mind's subterfuge and identify the root causes of emotions instead of merely reacting to the effects. I do experience lucid dreams, something that, when it happens, is a trippy, amazing adventure, to experience reality shift and become completely pliable, while also being aware that it is not normal, this is merely a temporary stop in a psychadelic dreamland. Which tells me I should be more adept than a good percentage of the population at not letting my brain hide things from me. And guess what. Still happens. 

But all that aside, the light bulb did not flicker on for me until this morning during breakfast as I shoving a steady trickle of sliced bananas into Alex's mouth and letting the thoughts come through at will. I almost heard the squeal of the brakes in my head. Survivor's guilt. It really might be as simple as that, I think. And it didn't come on gradually, it came on immediately, as soon as Daniel's leukemia was typed as ALL. Before that moment, it had been a horrible question of the type, dreading that it might be AML, that maybe it was some rare, random or even chronic type, but as soon as they told us it was the "good" kind, I got all weird about it. And I have been weird about it ever since. I didn't think it was survivor's guilt, because he hasn't survived it yet. But I don't truly think, aside from the obligatory ifs, that he won't. I started this journey pretty confident that no matter what might happen in the interim, he would not die from this. 

I have read and heard other moms talk about their children's ALL diagnoses being completely terrifying and devastating, of them being overwhelmed by the fear that they might be in the unlucky percentage. I have spent some time there as well. Or maybe not. Maybe I was experimenting with the fear. Or dipping my toes into the freak-out pool. When people compliment my strength, I feel a little squirmy inside, because I don't feel strong. The mothers who are facing terrible odds, they are strong. I am just lucky. Our diagnosis is "diet cancer". Which is also why the freakout happened a few months ago when I realized how quickly and silently a fatal infection, not-from-cancer, can occur. I had not been aware of just how easily that could happen before, hence the immediate crush of what I now see as the guilt complex that we don't have it very bad. 

Of course, it has come and gone. It left during the weeks of steroid hell, when I watched Daniel become a tiny would-be axe murderer with uncontrollable munchies. (Now I'm imagining Jack Nicholson's deranged hacking through the door in his famous "Here's Johnny!" scene, except in miniature, and into the refrigerator.) It left when he was in so much pain, face planting when he tried to crawl, and spewing vomit and diarrhea every time he rolled over. It left every time things got intense. But during the placid times, it came back in full force. It has tempted me to exaggerate our experience, simply to assuage some of the guilt over it not being worse, then, in self-recrimination at having been tempted to do so, I have swung the other way and minimized it. Which I also feel guilty about, because in doing so, I fear I have taken it away from Daniel. I haven't let him be a heroic toddler with a beastly (albeit not the worst beast) cancer diagnosis, I have just expected him to be a dismissive tiny adult. And he has obliged. In a way, perhaps it has served him well, because we have turned every needle poke into a game and he has barely acknowledged the pain. Maybe this is because I haven't let it affect me, being so overwhelmed by how much worse it could be, and he takes his cues from me, or maybe it is because he is the most resilient little boy ever. I don't know why he doesn't cry or fight his port accesses, his blood draws, his ara-C and Erwinia shots. I don't know why, as the screams of other little fighters ricochet around the shiny oncology clinic halls, he tries to grab his $17,000 syringes and help the nurses push their burning contents into his legs, whimpering a bit at the pain, but also, so eager to help. I thought it was just because he is two, and two years olds love to play at being "big", but the more I see other kids react completely differently, I wonder what makes him the weird calm one. The few extended breastfeeding studies that exist make the link between exceptionally calm, confident toddlers and the ready availability of the unique comfort that is boobs, and maybe this is the answer in his case...But I will never have a randomized control group in my little N of 1 trial, and the confounding factors are many and varied. 

As we near the end of his high-dose treatment, I feel a little bit of panic and anxiety mounting. At first I thought it was the loss of microcontrol over his treatment, and that certainly does play in to it. But mostly, I suddenly realize, it is because it feels like we are walking away. We are leaving the brain tumors, the incurable disorders, the hopelessness, the sadness, the kids who are unbelievably brave in spite of terrible odds. We know it is still there, that it will always be there inside those walls, that every day, a new diagnosis walks through those doors, another life shatters. And yet, we are to simply leave and live our lives. We are required to move on, in spite of the fact that we cannot unsee the things we have seen, we can't unhear the stories we have heard, we can't unknow the kids who won't or didn't leave the hospital. 

I read somewhere that a staggering number of patients and families who come through a childhood cancer experience live with symptoms of PTSD. I suppose I can see how that would happen. To live every day with death, to see every symptom as a sign, to be required to overreact to every little thing, lest it become fatal, this is practically the definition of war. I believe we will walk away from this without experiencing panic attacks with every reminder of our experience, but I now see that we won't walk away unaffected. Not only will I always wonder who Daniel would have been, what his potential was, without the massive loads of toxins dumped into his developing body and mind, I will not be able to give these worries the weight they deserve because I will always feel a little guilty that he survived it, practically breezed through it, that we still get to live a normal life, when so many other lives were cut short, changed forever, that some are not walking away. They are limping. Crawling. They will never completely recover. And some parents, parents like me, the only difference being the outcome of our baby's treatments, are leaving the shattered pieces of their hearts inside the walls of that hospital and going home to nothing. To know these people, to be invested in them, to hope with them, cry with them, to realize that you need, truly need them to survive this, and to know that if the worst should happen to them, your wholeness will cast even sharper shadows over their loss, revealing it even more starkly, this is also a unique torture that comes with survivorship. 

As far as news, we have gotten our fourth Erwinia shot (2/3 of the way through this $209,000 round, but who's counting?) Our nurse was awesome and even took the time to bring a whole other set of materials (includng a band aid and heat pack for sore muscles) for Curious George, so Daniel could give him his Erwinia. The gloves were a little big, but George was a brave little monkey. George is still wearing his hospital bracelet and bright orange band aid. We have been lucky this Erwinia round to not be on precautions and isolated in a room the entire time, so we roam the halls and make new friends while we wait the requisite hour after each shot to monitor for reactions. Our newest little friend is Cooper, who comes in every Friday for an infusion of an enzyme that keeps his body functioning. Daniel may have used his sad eyes, watching him and his sister playing with their Christmas presents through the glass infusion room door, to get himself invited in for matchbox cars and cookies. His mom keeps a Caring Bridge site for him, if you want to meet him too. http://www.caringbridge.org/visit/coopertippett/journal/view/id/567b5e9b4db921e17bcdc66c

I discovered his page also contained a Youtube video with Daniel (well, the back of his head, anyway) in it from our band with Brad Corrigan et.al. day last week, I'm reposting it here. http://youtu.be/NkO-Nz7PvvE I couldn't place why Cooper looked so familiar until his mom said they had jammed together last week. 

Merry Freaking Hallmark Christmas

It's Christmas morning. Whatever religion, tradition, vague belief system or lack thereof you subscribe to, don't, or wish you could to make yourself feel better, most of us at least acknowlege this day is a doozy. It's about family togetherness and, almost inevitably, this means making it work. Like maybe you are Jewish but you show up to your Christian family's thing, because grandma will be there and the cousins haven't seen each other in a long time. Or maybe you are particularly upset about the mindless consumerism around you, but you still found yourself scrambling yesterday afternoon because at the last minute you decided to put your own stuff behind you and get the niece something after all, and all you could find last minute was something that was, at best, momentarily delightful. Or maybe you have self-imposed dietary restrictions, but you decide that if it's between your own ideals or your aunt seeing you enjoy her buttery sweet potato casserole, you choose family. Not to mention you spent all day yesterday cooking just so you could bring something you can eat. 

Or maybe you aren't seeing family at all this year. Maybe you've just decided to not do it this year. For whatever reason. Maybe your kid is fighting cancer, and you can't risk anyone making him sick, bringing in one of the many plagues floating around out there in the real world outside the walls of your sanitized little house. If that is the case, you might be curled up in your fuzzy bathrobe right now while a tiny bald tot plays with the toys he unwrapped last night, when he was too excited to wait one more day to reveal the mysteries under the tree (an admittedly ugly, sad looking plastic tree you recently rediscovered stored in your parent's barn, having hauled it up there years ago after you found it in some condo you were cleaning during your Summit County ski bum days, when every December 26, on the busiest day of they year, as you were making like forty beds and scrubbing down twenty-something bathrooms during the six hours between when Christmas guests checked out and New Years guests checked in, you also had to figure out what to do with a half-dozen cheap plastic Christmas trees they had bought and dragged into their condos, and then couldn't fit in their luggage for the flight home, or even drag down to the garage with a "free tree" sign on it). You might be waiting for the rest of your family to wake up, although you aren't sure why, because then you will have to stop writing the longest parenthesized sentences known to man and actually do something, like make breakfast. Because even though you spent the entire day cooking yesterday with the proclamation that you would not be lifting a finger all day to cook or clean and you have an entire fridge jammed with delicious leftovers, that didn't include breakfast. Obviously.

Or maybe you know, or suspect, or have it on good authority that this will be the last Christmas you will spend with your child. While other families create traditions meant to carry into the future, Christmas Eve pajamas, milk and cookies for Santa, another year printed on a silver dollar in the toe of a stocking, you are simply trying to breathe and not blink, trying to save every moment and not miss a single thing, because this moment, right now, is what you will return to again, and a million times again, during future Christmas mornings when there is a jagged hole through all your favorite traditions where your child is now. 

Or maybe that Christmas morning was a year ago today, and you had no idea. Or you did, and now you are where you so dreaded being then. Now you are trying to decide if you can even face your extended family. Or do any of those things that once included a little person who was your world. You are wondering if you have forgotten any details, holding them and counting them and seeing a small face in your mind as you imagine it would be, older than the last memory you have of it. You are just trying to remember to keep taking breaths. Putting one foot ahead of the other. Pretending to be okay for those around you, who are pretending for you.

I admit it. I am not the biggest fan of this day. It contains too much pressure to make it a freaking Hallmark holiday. It is so much focus on biological family, when everywhere, family is what you make it. So much focus on the kids, when so many people have their hearts dangling by razor wire because of their children. Children they could not have. Children they could not keep. Children who were conceived but not born. Children who were never able to help decorate a tree. Children who loved everything about the holiday, and now it isn't the same without them. My heart is with these families today. I ache for them. I know they wouldn't want anyone else's holiday to be less magical because theirs is one of the hardest days of the year, but knowing they are out there makes me slow down. It makes me breathe and not blink, trying to save every moment and not miss a single thing, because this moment, right now, is what I will return to again, and a million times again, during future Christmas mornings when my own little darlings are gone. Whatever takes them from me. Best case scenario, age. College. Partners, their own busy lives. Worst case, tomorrow I have no promises that I won't be facing the future without them. They only time I have to hold them is now. If this moment passes me by, it may never present itself again. Time might see them grow into wonderful adults, but it will also take them away from me.

Christmas was good, growing up. My Grandma Christina saw to that. Not to say I didn't have two other grandmas who didn't also make it great, but I spent the entire season at Grandma Chris's house. She created a big extended family that made a point of getting together for the holidays. As soon as the last of the leftover thanksgiving pie had been eaten, I helped her get out boxes full of dainty dishes holding cinnamon scented votive candles, tack long pieces of bright yarn across walls to hold Christmas cards, even make popcorn garlands and bring in pine boughs to decorate with cinnamon sticks, dried orange and apple slices. I marveled at her heirlooms that only came out for the season- delicate table runners, depression glass bowls to be filled with the peppernuts and other tasty holiday dainties we would make. My grandparent's Christmas table was not only gathered around by family, but by community, their intentional family. The neighbors (in rural Western Kansas, anyone who shares a telephone prefix is a neighbor) who had no family of their own, friends who knew no invitation was needed, visitors who just happened to be on their way through, young people from Europe, spending semesters working in the Kansas farm industry. It was always chaotic, and it was chaotically normal for me. While for some families, Christmas was a time of exclusion, of withdrawing and focusing on their own families, ours was all about inclusion- making sure nobody was alone unless they chose to be. Providing festive cheer for anyone who might have a hard time providing it for themselves. Grandma's own childhood was a lonely one, a connundrum of being both a bit of a celebrity and isolated by her own parent's issues in a community that valued proper appearances. They were like a Pennsylvania Dutch version of the Von Trapp family, known through the Holdeman Mennonite congregations of the U.S. for their musical talent as they traveled the country giving singing lessons and demonstrations. The shared experience of minor celebrity did not hold the little family of four together as her parent's marriage fell apart, and she and her older brother were left dangling, unsure where they fit in. At 17, a young beauty with enormous light hazel eyes rimmed with long, curling lashes (the same lashes lying over her great grandson Alex's cheeks as he sleeps on my lap), she met a 24 year old farmer, and by the time she turned 18, she was married, pregnant, and worshipped the ground he walked on, as she would the rest of her life. As she made her own life, she did everything she could to make sure anyone at risk for feeling the way she had growing up was tucked under her wing, fed a cinnamon roll, and forced, against all of their intentions to the contrary, to smile, to join her as she sang carols and mashed vats full of potatoes, to experience the warmth she radiated. 

The carefree Hallmark holidays ended, eventually. Their oldest son, my uncle, was killed in a car accident at 33, leaving a wife, a four year old, a two year old and a three week old baby. That same year, the wife of the elderly childless couple who had spent so many Christmases with our family was mauled to death by a mule (because this apparently still happens in Kansas). The next-oldest uncle's family, by the time carseats were becoming mandatory and they had son #6, stopped coming down from Northern Idaho for special occasions. The family scattered. By the time grandpa was diagnosed with stage 4 adenocarcinoma spreading from his stomach, we had committed to spending Christmases working in the ski resort lodging industry, which is a jealous mistress at every single holiday, no matter the season, but especially Christmas. They tried, they still invited their intentional family, but the big, chaotic Christmases of other years didn't happen anymore. 

Grandpa was 67 in January 2004, grandma providing palliative care for him iside the home they had built together. When she called my mom to drive nine miles out to the farm one night because grandpa seemed to be choking, my mom sped through the night with plans of suctioning and CPR if necessary, but arrived to find him lying in Grandma's arms, no longer breathing. The family came together to mourn and to bury his embattled body, to provide comfort to Grandma, then returned to families and responsibilities. My parents brought Grandma to see us in Colorado that year for a late celebration after the Christmas and New Years rush died down for us. She did all the things she would have done other years- made peppernuts and date wheels, cooked big meals, sang her songs, and we tried to make it merry in spite of her having been recently widowed. She was young yet, at 60, her hair only graying during the two years she and grandpa had faced the loss of his future. She went back home to try to put her life back together, and during a snowstorm one week later, as she stoked a fire in the fireplace to chase away the loneliness and gloom, she just...stopped. After a long day of trying to call her, my mom drove the nine treacherous, dark miles through the snowstorm to find a dark house, cold ashes, and her with the fireplace poker, lying in front of them. Maybe it was a sudden, catastrophic stroke. Or a massive heart attack. Maybe an aneurism burst. We didn't investigate. We were too tired, too flat. We just dug another hole in the frozen dirt beside the fresh mound Grandpa slept under and lowered her down, the music suddenly, for the first time in all of our lives, silent. We wondered how we could possibly feel anything more, and simultaneously less, than we already felt. 

After she was no longer here to even attempt to bring her children, friends, and stragglers together for the holidays, the traditions died as well. Some of her remaining four children began traditions with in laws and no longer had time for our family. We scattered from literally one coast to the other. For Bobby and me, Christmas was a nightmare of customer service. We occasionally tried to make it special, but often, we were all just too exhausted and sick of people to even finish dinner and gather around the tree Bobby's sister always insisted on putting up. Having grown up with no mother, their own mom having died of metastatic breast cancer when she was nine, she took it upon herself to provide her brothers with a merry Christmas regardless of the circumstances. 

There was the Christmas almost five years ago, when my own mom was bald and exhausted as she fought the fight of her life against breast cancer. I don't even remember it, but it must have happened. We must have done something special. Surely we did. Surely we didn't make her experience that one alone.

Then we left Summit County and the ski lodging industry. In the last three years, we have tried to salvage the holiday. We have no traditions. We have no particular memories, the Hallmark Christmases we both have had are so far in our past they do not define the holiday for us. Every year, about a week before the 25th, we suddenly decide maybe we should do something after all, and we cobble something together, and we call it merry. Bobby's brother, sister in law and the little cousins don't come anymore, so we do our best to make it merry with Bobby's sister Marci, my parents, and usually, my mom's brother Leroy and his wife, Mary, whom we have named our babies' godparents. Except again this year, cancer has messed with Christmas. It's a good thing we have no traditions and don't really take it very seriously, because we might be really bummed by the fact we can't see anyone we love this week. As it is, we know the reunion is coming. We just have to rebound from this round yet and start Maintenance.

So that is the long version of why I don't particularly care much about Christmas. I love time with my family, but who needs a holiday to have that? I love things like crackling fires on wintery nights, but Christmas doesn't have a monopoly on that. And who says gingerbread houses, lights on trees, and ridiculously sweet treats are a Christmas thing, and not just a winter thing? I am okay with our loved ones buying my children toys for under our pathetic plastic tree that contains exactly four ornaments, but we didn't feel like we could afford to get them anything this year, since we are as solvent as we are because of the support of loved ones. Instead, we have focused on the pretty lights, the food, playing together as a family, the fact that Daddy is home right now. We don't, and in the future, probably won't do things like elf on the shelf or Santa. I get the whole making childhood magical thing, I do, and can respect others doing these things for their kids, and understand the thinking behind them. But we are still searching for those "us" traditions, and they are not it. The theme of our lives, at least the way I try to remind myself to live it, is about finding the magic in the ordinary, instead of creating it in the extraordinary. Belief in mythical characters doesn't seem essential to a happy childhood. Being completely honest with the small, inquisitive minds, and then being there to help them process, this feels more authentic. Which is why the whole "Christmas spirit" thing seems redundant. If we can't live the rest of the year with goodwill, seeking peace, having all those sickening Hallmark moments, finding the magic, celebrating the obstacles behind us and noting all the good things that have come our way, what's the point of going through the motions once a year? And as far as many of those things that are uniquely "Christmas", I never did them. We did food, and then more food, but not stockings, trees, pajamas, nativity scenes, Santa, or Christmas morning. I am only now learning about them as other families talk about them. I wish I were kidding.

Now as far as the religious part of it, that was a huge part of my childhood Christmas experience. Hymns and carols, the Biblical Christmas story, all that. As we struggle to find our own way to present these things to our own children, being honest about the things we don't know, being sensitive and respectful to the many, many different beliefs others have, we have no traditions yet. Maybe someday. I don't actually feel much pressure to "keep Christ in Christmas" or fight against some sort of imaginary "war on Christmas" because, well. We appropriated it first. We invented adopting holidays and then being freaked out that anyone else might do the same. I think we all know by now that it isn't actually baby Jesus' birthday any more than it's the day a jolly old white guy pops out of the chimney and grants material wishes based on the past year's performance. What began as a celebration of the winter solstice has come to mean so many things to so many people. To us, it is a great time to recognize that another year was ours to live. Winter is half gone, and spring is coming, if not visible yet. That everything passes.

And that was all she wrote, at least on Christmas day. Continued December 26:

Apparently, as evidenced by all that stuff I wrote while propping my feet in front of the fire yesterday, tangents happen in the absence of real news. It has been peaceful here at our house. Bobby turned down the option to go to North Dakota to work through the holidays, which also means no money. We did a lot of talking about it, and finally decided that if a penny saved is a penny earned, a penny not made is a penny lost, and we decided to simply make monetary payment in exchange for time together as a family these two weeks. This is our big investment for the year. Every dollar lost to time spent with each other through hospital stays, clinic days, time in our house, gathered around the fireplace, playing with new toys is simply a payment made to someone else who will earn it in our place, in exchange for us being able to stay in each other's presence. And there you have it. Classic freaking Hallmark, isn't it? 

We are almost done with Delayed intensification. I know, it seems like we barely started. But the last high dose chemotherapy this phase would have been PEG-aspariginase on Wednesday. Except that, due to D's inability to tolerate PEG, instead of one IV infusion, we have to get two weeks worth of shots of Erwinia aspariginase. Our schedule is normally Mondays, Wednesdays and Fridays, but due to both Christmas and New Years falling on Fridays this year, our schedule is Wednesdays, Saturdays and Mondays. Not that we mind going to the hospital on Saturdays. It's actually a bit of a bonus. It is quiet. The clinic was silent, immaculate, and deserted. They unlocked it for the four patients today who could not have their chemo schedules rearranged, we all arrived about the same time, a few nurses came over from inpatient to administer the drugs, and we just had to kill an hour afterward in the deserted halls while monitoring for reactions. This time, we opted out of messing up a clean infusion room, knowing we usually prefer to roam the halls anyway. Daniel became an ardent admirer of a 15 year old girl named Aliza, also there for Erwinia shots, who also opted for the infusion chairs beside the big windows instead of a private room. They share a diagnosis, except hers is more intense because of her age. They got their shots together, cheering for each other's bravery. Daniel watched her receiving hers, then helped her rub it better, and pull her pant legs back down to cover the bruises. Then she read books to him. New best friends. 

The lack of people in the clinic halls meant Daniel and Alex had free range of them. I even allowed Alex to crawl on the floor, since it was freshly mopped with very few shoes walking on it today. And as an added bonus, on top of our peaceful hospital day, the cafeteria had set out free fruit, veggie and cheese platters as a holiday treat in the dining area downstairs. We helped ourselves to delicious, expensive fresh fruit like we owned the place, practically swooning over it. Monday will be far more chaotic. 

After Erwinia ends, it usually takes two and a half to three weeks until counts hit nadir. And another week until they start to recover. So, although we are a week and a half from done with Erwinia, we are five or six weeks from counts rebounding. Daniel is looking pale to me. Maybe even a little yellow. His lips are pale pink. His cheeks still have a slight blush, but no glow. He has bruises everywhere. I know both his platelets and hemoglobin are lower than is healthy, but likely are not critical. We won't get more bloodwork until next Wednesday, but we don't need it to tell us everything is compromised. We are still just hanging out, not going anywhere except the hospital, enjoying the quiet and willing things to stay stable. Well. Enjoying as much quiet as the volume control of two babies allows us.

On January 29 (ish), Bobby reluctantly starts his next new work adventure. He has been turning down offers of a promotion to Field Coordinator for several months already, but finally caved. He really doesn't want to have to be in a supervisor position. He would rather just hide in his truck, where nobody bothers him. Especially since the pay raise does not really compensate for the added headache. However, the position also comes with a guaranteed schedule. Four days on, a day and a half off, four nights on, a night and a half off. Not only will he know the hours he will need to be there, he will know the days he will have off. We have not had more than five minutes lead time on this information in the last year and a half. I am so grateful to him for doing this for us. Exchanging his nice, warm, clean truck for a job managing people, which is his nightmare, not to mention a twelve hour shift on his feet, walking 9-10 miles per night. Again with the adulting. Why are the options never good ones?

Much love to our dear ones. I hope your holidays were wonderful, and that you didn't blink. 

First lasts

Hi! Welcome back. We have been home from the hospital eight days now, and Daniel's counts have climbed high enough to start our next round of chemo. Our last round before maintenance. It feels...I haven't decided. When we were at the beginning of his treatment, looking forward to where we are now made the next six (which became nine) months seem like an eternity filled with uncertainty. Now it is our story. Now we no longer wonder what will happen, we know what did happen. Already, our memories are beginning to betray us, to paint the last eight months in the colors of our choosing. Definitely rosier than when we were going through them. I remember the smiles, and only my photographs and written words really remember the relentless diarrhea, the 'roid rage, the countless times I cleaned vomit out of the carseat, the sheer exhaustion of the simultaneous new cancer diagnosis and new baby. I am glad I wrote it all down in the moment, because reading back, I already find a different account than the one in my head. I remember things much more simplistically than I recorded them. And in the times where there are no happy memories, I sort of just have...no memories. The mind can be such a crazy optimist, at the cost of keeping it real. 

We are starting to hit our lasts. Our first last was our last doxorubicin infusion. Our second last was today, when he finished his last cyclophosphamide infusion. Our third and fourth lasts will be this month, when we have our last cytarabine and our last erwinia. Of course, we still have some firsts ahead of us, too...we start our first thioguanine tonight, and we have yet to experience oral methotrexate, which we will take during maintenance. 

I met a newly diagnosed family (because it is the family that is hit by the diagnosis, not just the diagnosee) today, and as we were talking, I was thinking about all the things I wish I could tell eight months ago me. I feel like I am finally getting this whole pediatric cancer world figured out just as we no longer need it so badly. Thank goodness, but also...I feel a little like I've earned a degree I won't be able to put to use. Hey. Nobody said it had to make sense.

So. Dearest bewildered, leaky, post-partum, milk-spraying, maternity pants wearing, unshowered, refusing to cry eight months ago me. Listen up. Because I'm about to drop some knowlege on you.

Take real pictures. Not just of the one time in twenty four hours you see your little darling grin a little, but of your faces, with your eyes that look kinda like the holes the dog leaves in the snow when he pees. And of your kid who looks like Jabba the Hut on meth. You aren't taking pictures to celebrate where you are now, you are taking them to celebrate where you will be. If you don't take them, your memories can't be trusted. You may not want to remember now, but you will. You can't measure your own strength if you don't remember how heavy the load was at this point. Although you think you could never forget, you will. Surprisingly quickly. 

Make friends whenever you can in the hospital. This guarantees several things- you will find people who have it so, so much worse than you do, you will feel like a whiny little amateur when indulging in your own pity party. You will find people who know ex. actly. what you are going through. You will realize that all sorts of people have sick kids, including people you would not normally be friends with. And then you will put that thought right out of your mind, because the kids are all that matter. You connect over the kids. You realize that some adults make it about the kids, and some make it about themselves, and you decide to always, always be the one who makes it about the kids. And inevitably, you will meet a family with a kid who is going to die. Once you become emotionally invested in a kid who won't grow up, everything else seems pretty manageable. Nothing about your living children is too big of an inconvenience. Making friends with people who have sick kids will be the most comforting and potentially devastating gift you can give yourself. But even if you end up wrecked and grieving with them, it's also a gift to see the world through the lense of a family whose world has crumbled. It's uncomfortable, but also, can cause such deep gratefulness for the gentle weight of an alive, if sick, child. For the times stuck in a hospital room that are also times spent together. For every "bad" day spent in their wonderful presence.

Take to the halls anytime you are not on isolation. Because you are only a cough away from being put on contact precautions at any time, and unable to leave your room. If you are not on isolation and counts are high enough and you have permission, go outside. Go eat in the cafeteria. Pretend to be normal. You can put an IV bag and pump on the wagons provided by the hospital and pull it pretty much everywhere on the campus. 

Use plastic totes instead of suitcases. So much easier to store in the shelves in the patient rooms. Easy to wipe down. 

There is no reason why you, the parent, cannot weigh diapers, record intake and output, draw up pee samples to send to the lab, get your own water, bathe your child yourself, make their bed with new linens daily...honestly, anything that doesn't require assistance or a four year degree plus special pediatric hem-onc training to do. The nurses pull double duty as your own personal waitstaff at the hospital's request as the hospital seeks high patient satisfaction and understands that even with stellar care, if a patient is feeling petty and put-upon they won't give good survey results, and it's tempting to think that, for $7,000/night, they can do just that...but seriously. They are there to do the stuff a parent isn't qualified to do. And it doesn't take a degree to run a gram scale and write down amounts on a whiteboard or keep a toddler from soaking his port access in the bathtub. Don't worry about overstepping. Just ask if there is any reason you can't do yourself whatever it is they are doing for you. There might be, but there might not be. The nurses are fair and wonderful people, but also stressed out humans who can't find the time to pump, if breastfeeding their own young, eat, or even pee sometimes. 

Certain menu items come in bigger portion sizes by default, making it easier to stretch a child's tray to feed multiple people. Quesadillas. Sweet potatoes. Side chef salad. Mixed fruit smoothie. Milkshake late in the evening (it will arrive completely melted if you order it earlier in the day. Just one of those mysteries.) Cutie oranges instead of a banana, because oranges come in twos. Also, corn chips are your friend. Keep several unopened bags in your hospital tote. Because you can order refried beans, nacho cheese, and salsa from the kitchen, but not chips, at least not if your child is on a toddler diet. And chocolate. Or twizzlers. Or whatever your go-to stress food is. Keep it packed and ready to go. (Raisinettes, in my case.) 

If anyone wonders what to get you for hospital creature comforts, tell them you would like a Yeti Cup. This is a not-exactly-cheap, but extremely insulated cup that will keep water ice-cold all night long. You can also make sure your hospital bag includes chapstick and vaseline (because the dry hospital air will actually crack the inside of your nostrils and it's gross to stick your chapstick up your nose), fingernail clippers, tape, and scissors (you'd be surprised how often you need scissors. Mostly for opening popsicles, but also for cutting medical tape and various other projects). And a non-hostile, somewhat silly laminated sign to tape to the outside of your hospital door to inform the staff of sleeping babies. This says, "We're really nice people and know you have a job to do, but on the other hand, if it can wait...." And then take the sign down as soon as naptime ends so they actually take it seriously. 

And last but not least, keep yo freaking laundry done! Because it is stressful enough waking up in the middle of the night to a raging fever and needing to pack and get out the door and into the emergency room in a hurry, without having to realize the only pants you have that are not crumpled in the laundry under a wet, stinky towel are three sizes too small, have a gaping hole in the butt, are missing the drawstring and fall off several times a day, or that even those poor excuses for clothing are dirty and you have no pants at all to wear, let alone pack for a week's stay in the hospital. Let's face it, you are going to get weird looks in the hospital sporting the fierce black pinstripe slacks you haven't worn in ten years, purple flip flops, and a shirt that has some name brand from your teenage preppy years in big letters across it, covered in paint splatters and about two inches short of meeting your pants. So not the way to be taken seriously as a parent on top of their child's medical needs. 

Edit: my oncomom friend Heather says she would add two things to this list- one, ask. For anything. Extra time off chemo until after Halloween? Might be impossible, might just be something they are willing to allow. Because after all, going into Halloween already queasy really limits the amount of candy-induced sickness a kid can create for themselves. The doctors aren't monsters, they can occasionally share the privilege of making a kid vomit with things like fun-sized snickers. (She didnt go into a candy tangent while offering this advice, that part was me.) But for real, the worst that can happen when asking for anything and everything hospital-related that might make life easier is they can't accomodate. And two, order food before your little darling gets hungry, it takes awhile to receive it. You can call the kitchen from your cell phone so you don't even have to interrupt hallway funtimes to order the noms. Actually, in CHC, you can call any hospital extension from your cell phone. Just dial 970-77 before the five digit extension number. 

And while I'm editing, here's another. Shower as early in the morning as possible. 7 West has a hot water shortage. Also, the white blankets in the blanket warmers are so much softer than the scratchy green ones in the hallway linen closets. But actually, just smuggle your own soft blanket in. Actually, smuggle two. Because yours will probably get barfed on. And then try to remember not to absent mindedly toss it into the hospital laundry bins along with the barfy sheets. That stuff goes to an offsite laundry facility with a several week turnaround and it's practically impossible to get it back. I'm still mourning the loss of the softest, snuggliest baby blanket ever. Curious George accidentally went into a laundry bin once, too. Thankfully, he was missed before the laundry was taken by housekeeping, and retrieved. That was a narrowly averted disaster. 

...And now it is several days later. We have had two days of high fevers. Although these necessitated trips to both a local ER and Children's hospital for assessments and cultures, we were able to stay outpatient because of his high counts so far. His platelets and ANC won't hit nadir (lowest low) for another week or two yet. The fever was probably a side effect of chemo, but because nobody can know that for sure, we still have to treat it like a "real" fever, indicating a possible bacterial infection. And it certainly brought Daniel to a halt like a real fever. He is usually somewhat fine, if subdued, until his fever climbs over 103. Above 103, his heart rate goes way up, his breathing gets fast, heavy, and grunty, he shakes uncontrollably and vomits. It was a little scary for us this time, since every other time he's had such high fevers we've had nurses to help us assess him. This time it was just us.

By today, it has dropped steadily down to 99.9. Since he is still getting daily doses of ara-C, the chemo they thought was the culprit, I am thinking maybe it was the Cytoxan, the high-dose chemo he had on Monday. Fever is a less common side effect of that one, but far from unheard of, according to the Internet. Happily, we won't get to test the theory with his next Cytoxan infusion, since this was his last one. Ever. Boom. 

I hate the weeks I have to give him his ara-C shots at home so much. They sting him pretty badly, judging by his whimpers. These shots are the only time I  have to personally hurt him. The rest of them, the nurses administer while I am the one to help him feel better. We do have the option of an insuflon, a small catheter into his leg to inject into to save the pokes, but that means no baths and the sting of the chemo in his subcutaneous tissue is in the same spot day after day. And as much as he hates his shots, I think he would hate losing his bathtub splash time worse. 

I seriously love that little freaked-out-but-determined face. 

It's been a week full of a lot of mixed emotions. So many reminders of why I should never, ever indulge in complaining or wallowing, because it could be so much worse. So many kids have it so much worse. The mom of a teenager with Ewing's Sarcoma (rare bone cancer) laughed ironically with me the other day when she asked what Daniel's diagnosis was and I waved dismissively and said, "Oh, just ALL." And we talked about how much has had to change for us, to use the word "just" before my child's cancer diagnosis in a completely non-sarcastic manner. 

Those first few days after Daniel's diagnosis, I referred to Daniel's type of cancer once or twice as "pretend cancer". Our doctor looked at me strangely. That feeling has somewhat stayed with me as I've been rattling around in a world filled with infants facing truly terrible odds, even after years of chemo, brain tumors that very few have even heard of, let alone know how to treat, kids spending months in isolation after transplants, kids who are paraplegics. No, it hasn't really felt like we are pretending anymore when he has been at real risk for life threatening complications, but I still feel like we have "diet cancer". "Cancer (light)". Just one calorie, not quite the real thing. When Daniel's little friend Simone suddenly died not-from-cancer, I suddenly had to face the reality that even diet cancer can have a devastating conclusion, but now that that's been dealt with, or perhaps just neatly compartmentalized, we are back to feeling so grateful that we have dodged so many bullets that so many others were not able to. 

Not to mention the non-cancer cruelty we have been witness to this week. It's been a week of yucky reality. Especially with yesterday's heartbreak of Daniel's aunties who were so excited to bring their own baby girl into the world only to receive the news that the baby girl has such a devastating condition the pregnancy has to be terminated now, at twenty weeks, unless she dies naturally very soon. I'm struggling hard with this. I know the feeling of a suddenly, unexpectedly empty womb, but my experiences were after weeks of loving and excitedly planning for those babies-who-weren't, not months. Not after a nursery was created. Not after they had a sex and a name. And they left my body privately and naturally, without cold, harsh medical procedures. I simply cannot even process what this beloved couple is going through. But I'm angry.  When did life get so unbelievably cruel? How can so much pain exist in such a beautiful place? Why does choosing to love always mean so much agony?

On a happy note, Bobby's cousin David has nominated Daniel as a guest of honor during his Marine Corp motorcycle club's annual cancer awareness poker run. They let us know the other day that he will be one of two kids with cancer there that day, being shown a spectacular time by the riders. This happens in April, which is exciting because by then his counts should be high enough to attend, and seriously, I can't think of anything he would like more than a day with a whole bunch of guys and their shiny, loud motorcycles. Although he will be allowed to have a motorcycle himself some day over my dead body. Just saying. After I kept him alive through cancer, I'm not about to let him straddle a whole bunch of horsepower with my blessing. Not until he proves to me that his prefrontal cortex is fully functioning and he is capable of a non-reckless decision making process. 

And now, bath time is over. Bath time is my time to check out. As long as I am in the bathroom, these two can splash without parental interference, and I am free to write, sitting perched on the toilet lid to referee if needed. Or pull little heads out from under the water should they become too submerged. This is also the time we video chat with grandpa and grandma. They haven't seen their grandsons with clothes on in weeks. But they catch up with each other while grandma and grandpa cook dinner and the littles splash and show off their bath toys. 

Bobby is back home now from New Mexico and by some strange blessing, working locally again, we will be able to bring Andy the Dog home soon, and life is feeling pretty darn complete. Here's hoping yours is too.