Last great day...for awhile

Hi, and welcome back. So it turns out the house closing has been postponed. Not our fault, we had all the info to our lender on time but he didn't get it to the underwriters until about a week later, so now we are running about a week behind our original closing date. Which has us all stressed out, because if it doesn't go through now, we do not get our ernest money back, since it was "us" who didn't honor the closing date listed on the contract. New closing date gives us three days to move, clean and repair this place.

I wish someone would tell me if we are going to have another kid some day. If I could send the baby stuff on down the line to the next breeder, we would have much more free closet space. I have started doing so with the clothes, but I know where they are. If we should happen to procreate again, I would probably just ask to borrow them back for the few weeks-months in each size. 

Daniel is feeling... Bratty. Loud. Basically a giant, awesome pain. Loud fits, loud shrieking over funny happenings, no regard for the feelings and tender skin of those he throws toys at, swings broomsticks at, pulls and shoves around. And constant singing, in his own language which, being his mother, I should understand, but I don't. And constant nudity. Which is all an indication of how much energy has returned during this chemo break. He is being a normal toddler. I feel like we have skipped nine months of normal toddlerhood, which usually gathers force slowly enough that a parent doesn't really notice the difference between present day toddler and nine months ago toddler. Nine months ago, before he went down so hard and fast, he was really into helping. In a very sweet sort of way. Like so into being helpful that all I had to do was tell him how helpful it would be if he always went potty in his potty chair, and whatdya know, his whole world suddenly revolved around subsequent potties in the potty chair. No true effort required on my part, as long as I noticed the signs and was available to pull down his pants. 

Now he looks right at me, then dramatically grabs a handful of food, holds it out, and opens his hand, letting the food drop to the floor where it is promptly eaten by the waiting dog. In spite of repeated reminders, in varying degrees of strength, that Andy has his own food and our food is for the people to eat. He forgets Alex is a breakable baby who feels the owies Daniel inflicts. And so does Andy. He is still quick with the kisses if we call owie on his shenanigans, but apparently as long as we "cure" the owies, we can inflict them at will. And oh, the emotional sensitivity. If he does cross a line and a parent express displeasure, the tears. They roll down the cheeks as we sob inconsolably, immobilized by the crushing weight of the grown-ups unmet expectations. How exactly is one to parent such a sweet, tender young thing with almost no concept of empathy and the lid blown off of nine months of pent up toddlerhood? After all those months of him lying there, miserable, shaking with pain, all those days of exhaustion, the last several months of being washed around by wave after wave of nausea, the days when his bottom was bleeding and oozing, when his skin was too itchy to be able to think about being a normal, bratty two year old...now that he is on a chemo break and apparently feeling much, much better, all the deferred busy-ness of those idle months is coming out. Don't get me wrong. I love it. Normal is never, ever something I will complain about. I'm just caught unprepared for it and scrambling to bring my parenting up to his speed. 

This is slightly complicated by Alex learning to crawl. I have gotten lazy about things like plastic films, cords, uncovered outlets, long pokey things (sticks, spoons, etc) lying around.  Now I suddenly have a newly mobile baby who is absolutely brilliant in exactly two ways- convincing us to hold and feed him whenever he desires, and self-destruction. 

There are two opposing ways of looking at Daniel's situation, and I struggle every day with which narrative I should internalize. I admit, I compare our situation to others. All the time. I am constantly looking for clues as to how I should feel. 

There's the nurse in the hospital who draws Daniel's blood, who tells me her own young son has leukemia as well, and also reacted to PEG, and has to get Erwinia shots, who's attitude seems to be, sure...loads of kids get leukemia. She acts like it's just one of those things that happens to kids. No big. Give 'em some chemo, send 'em on their way, good as new. We have the good kind of leukemia. So basically only slightly more problematic than the common cold. The moms I know who just quietly go about their lives, as if this really was just a hiccup. Nothing more. 

There's viral story of the sweet wishes granted some kid who has the same kind of cancer as Daniel, and the portrayal of the kid as such a tragic figure, a disadvantaged little cancer victim confuses me. The random mom in some other state who's facebook page I come across who's toddler, as far as I can tell, is on a parallel journey, the same prognosis as Daniel, but who somehow has over 10,000 facebook followers and a huge donation-supported fund complete with huge fundraising concerts. Like as if they're deathly ill.

These things make me wonder if there is something I don't know...should I be more worried? Or am I being overractive and thinking I am somehow entitled to unwarranted sympathy, as evidenced by the very existance of this blog and Daniel's facebook page? 

One side of me is influenced by the casualness of the medical staff taking care of Daniel, breezily prescribing drugs in such a way that suggests they don't give the potential side effects another thought. The "no big deal" attitude. The fact that we rarely actually see "our" doctors, the ones making the decisions in Daniel's treatment, that we were told at the beginning how familiar we would get to be with the staff, but we barely remember anyone's names yet, and I think, perhaps this is because we just have what, as far as cancer goes, basically amounts to "pretend" cancer. If we had "real" cancer, it might be a different story.

Then I stumble across the story of some kid with ALL who died (social media, presenting all the worst case scenarios), or I read some study where a certain percentage of the kids did not recover, and I start to feel I have been entirely too flippant and irreverent about this whole thing. Because if I don't take this seriously, some sadistic twist might drop us on the wrong side of the statistics. 

The facts are that one out of ten don't survive the "good kind" of cancer. That's ten out of a hundred. If three hundred all happened to attend an elementary school together, that's thirty kids. Which is pretty terrible when you look at it in terms of something like, say, a fire, tornado, or even a school shooting that leaves thirty of three hundred kids dead. But pretty good when you consider the brain tumors that take all three hundred. 

I don't know if I really have a point, except that comparing us to others like us gives me clues as to how I should be reacting, in a way. I am so lost and confused in this whole Cancerworld experience, I don't know if the correct narrative should be to minimize or dramatize. Of course, ideally I would do neither, and this is what I try to shoot for, but then I wonder if I am unknowingly doing one or the other. I spent three hours online the other day going through Daniel's flow cytometry report number by number, word by word, trying to make sense of it to give me an indication on the specifics of his diagnosis, and therefore, prognosis. I know more about genetics and proteins than I did before, I know that his cells are hyperdiploidy, have a lot of DNA, which is more likely to respond to treatment, but the internet doesn't have a place for me to ask the specific questions I have, but do not even know enough to word them precisely to his doctors to get the answers I want. Which really just boils down to, tell me where he is compared to the kids who have relapsed. Tell me this precise kind of leukemia never comes back. Tell me you've never seen a kid with his exact genetic markers and his exact pathology not respond to chemo. Tell me if my heart is safe. Tell me there's no way we will be the one in ten, because those other kids all had some genetic difference that made them relapse. Tell me there is perfect logic and science in this treatment and there will be no unforeseens and we will see him grow up. Tell my heart it will never have to shatter. 

Last night, for some reason, the dreads attacked me again. Fear made me reach out in the dark and place my hand on his back for reassurance. In the dark, my monsters-under-the-bed foreboding in full force, his back felt unnaturally still, hard and cold, and I could not immediately hear him breathing, nor feel his breath making his back  rise and fall. I freaking lost it. Literally. I couldn't breathe, instant nausea, my heart lept out of my chest. I grabbed his ribs and shook him hard, and he whimpered a bit in his sleep, then rolled over. The flood of relief was instant and turned every muscle into mush. I lay there shaking and breathing hard, every nerve on high alert, willing the fight or flight response to leave my body, my arms wrapped around him, my face freshed against his skull, obsessively kissing his forehead and breathing his scent. The rest of the night, I tried to sleep but couldn't, and when dawn began to lighten the room, I finally slept and dreamed horrible, bizarre dreams. And ever since, I haven't quite been able to shake that feeling of sheer, panicked, abject horror. Ever since then, I've been obsessing over needing to know that I will never feel that way for real.

Tomorrow it all starts again. Our three week break is over. It was really only a week and a half break, because it took the first week and a half for him to start to feel better. Tomorrow we get a lumbar puncture with intrathecal methotrexate, vincristine, doxorubicin, and we start a week of dexamethasone, the vilest steroid. This phase has two weeks of Dex, with a week off between them. I guess we'll see how he reacts, now that his body remembers it's last experience with them. At the moment I am sitting in the recliner nursing him to sleep and he kicks his feet and squeezes my skin, sweating profusely in this vinyl chair under his warm little body. My parents are here. It took awhile to get him out of their bed and out to the living room to make an attempt at rocking to sleep. He just feels so good. He was turning their bedroom light on and off, shrieking and giggling and not interested at all in sleep, just a half hour ago. He ate food like a real boy all day. He played super hard with the Early Intervention Assessment Team, with whom we met this morning to determine his eligibility for programs once he ages out of Early Intervention in three months when he turns three. I know, right? Three! 

My dad has appointments all day tomorrow getting a cancerous lesion removed from his ear, a non-serious, non-spreading sort of thing, but apparently something University Hospital is more qualified to do than their local clinic. My mom will come with us to the Children's oncology clinic, we'll get Daniel's procedure done, then hopefully have some girltime with Aunties Christina and Lisa before we go home to pack and clean and prepare to move. If the closing goes through. If. 

And now the wee darling is sleeping in my lap. My alarm is set for 6:30 in the morning, and he can't nurse anymore after 4 am because his appointment for anesthesia and lumbar puncture is at 8:30. It is hard for me to remember when he finds me in the dark, and I don't wake up enough to realize what he is doing. So far, in seven months of these procedures, we have not sabotaged our procedure time slot with irresponsible nursing. I don't intend to start now. 

See ya on the flip! A crazy two and a half weeks full of crazy schedule starts tomorrow. After tomorrow, the first day we have nothing scheduled for is November 8. Between medical appointments, speech therapy, physical therapy, and our trip to the wedding in Tahoe, we are busy people for the near future. 

Better off dread

Hello, dear ones! 

I figure I had better take this opportunity to write, because I may be an illusive creature until after November 1. There may be quick updates, but we are scheduled to close on the house October 20, and will start moving in as soon as that's in the bag. We have a trip to Denver for chemo and a lumbar puncture October 21 (that is, if Daniel's blood work drawn on the 20th clears us to start his next phase the 21st), then we plan to come back and do as much moving as is possible until we need to hit the road for Tahoe for Auntie Rochelle and Uncle Don's wedding. (In our family, you inherit the title "Aunt", but you can earn the title "Auntie". I guess Uncle has no such distinction.) The 23rd and 24th are wedding related activities, then we drive home the 25th and 26th, and Bobby goes back to work. We have to have our rental house completely cleaned, repaired and vacated by the 31st. At some point, when Bobby has time, we will make a trip back to Kansas for the rest of our stuff, which has been sitting at the farm for a year now. 

Has it really been a year since we moved out here? Our rental agreement says it has. Our baby, six months old today, says so as well. I was fourteen weeks pregnant, barely looking fat, when we rented this place. The fall colors in the back yard are an indication as well. Last winter felt sooo long. Can we really be heading into another one? Our summer was, to say the least, a little disappointing. Between Bobby's erratic work schedule and Daniel's illness, we did almost nothing we had planned to do. I'm not complaining, because the alternative, not having Daniel with us, is unthinkable. At the rate he was fading seven months ago, his treatment is the only reason he is in our lives right now. But we have done a lot of telling ourselves, in the last year, that this is temporary. The job, the illness, the isolation, it WILL get better. Some day soon. 

We took a quick trip to the Denver zoo this morning because the rest of this fall, starting next Tuesday, will either be incredibly hectic or we will be on house arrest hiding from flu season with a low ANC, and it sounded like B would not be needed at work until afternoon. We took advantage of the zoo pass my parents got for us to leisurely explore, letting Daniel take the lead. The pass removes the pressure to get our money's worth out of each visit. Mostly. Daniel's dad still didn't quite have the patience to spend the entire time in the "Tropical Discovery" building watching turtles swim while we tried to swim against the current of people (germy, germy people) just to stay in one spot until Daniel was ready to move on. Daniel saw one kid climb on a rock to get a better view into one of the aquariums, and immediately realized the possibilities. All he could see from then on were opportunities for climbing while observing. All his parents could see was goodness knows what plague smeared all over the rocks, shiny from the grease of many, many hands. 

And then B's phone rang. It was work, and they needed him ASAP. We thought we had hours yet. We obviously thought wrong. So, each carrying a little boy, we raced to the car, then rode the bumpers of the cars in front of us all the way back to Loveland. But for awhile there, it was awesome. I mean, watching turtles swim in circles? Can't beat that. Not if you are two years old, anyway.

Daniel's appetite is back. If we weren't on a break, we would have started another methotrexate infusion yesterday, and would be feeling all itchy, exhausted and nauseated today. These breaks are amazing. We don't realize how much his treatments knock him back until he gets a chance to recover, and suddenly he turns into a happy, energetic little boy who actually likes his food. 

Unless the financing falls through yet before we close on the house we are trying to buy, we only have five days left in this house. I'm reluctant to leave it. I think it's just that I have no tolerance for more change right now. It's been a heckuva year. Moving to a new town, job uncertainty, new baby, isolation, freaking pediatric cancer... And now, another house where our stuff is, where our life is supposed to happen, but isn't actually home. Just walls. More awkwardness, meeting new neighbors. Hoping they aren't horrible. Months of waking up somewhere strange, not remembering where I am those first few foggy moments.

The place that most feels like home to adult me is Summit County, and now Summit County feels weird, since we don't have a home there. When we drive through, I feel like I should be driving to the back of Summit Cove to that double-wide trailer house with it's pile of skis, snowboards, snowshoes and bikes in the living room, forest service trails out the front door, roaring woodstove and view of the snow-capped continental divide out the bedroom window. It's still my space. It's the flooring we laid down, the countertops we built, the walls I textured and painted, the light fixtures I hung myself because I was too excited to wait for help...the place we first tried to make a baby, the place we came home to when those hopefull cells didn't stay put, the place I curled up after crying and searching all night for Andy the Dog when he ran away (and finding him the next morning huddled under a staircase at the Keystone Inn). It's the place we finally lived alone and learned how to be married without the distractions of roomates. So many things about that place made it home, but strangers live there now. 

Kansas feels familar, even more so than Summit County, but it also feels like someone I used to be. Even the three years we lived there before moving to Loveland, the ghost of my painfully awkward teenage self stalked me. I forgot I was strong and independant and badass. I lived in a bubble, a peaceful valley I rarely left, and my life revolved around garden, kitchen, my husband, my new baby. That was idyllic at times. But also weird. I missed the thin air and daily adrenaline of Summit County.

I want to feel about Loveland like I felt in Summit County. A strong sense of place, and my place in that place. It's been a year now. When will it become home? So far, in spite of all the things that have happened here, it still feels like just another place to be. I still feel a little ambivalent when I come home to it. It's not that feeling I used to get popping out of the Eisenhower Tunnel on westbound I-70, or rolling down the hill between Frisco and Silverthorne on eastbound I-70. There's no "ahhhh, home" sort of moment. 

I dunno. Right now, I just feel...fearful. Uneasy. Unsettled. I don't really buy into unexplained precognitive, intuitive stuff. I think those "something's wrong" feelings we all get from time to time happen when our subconscious sees something in our surroundings that does not fit a pattern. I think the disruption to my pattern is the looming change of moving. I am now remembering the times (no doubt fueled by pregnancy hormones) after moving into this house, when I felt so isolated and unsettled. When I didn't even know who to call to make myself feel better, because it wasn't my old friends and my family I missed. They were still only a phone call away. It was everything that made my life my own. My husband was gone for days at a time, my house didn't feel like home, and I just needed my mommy. I do remember that. Needing my mom to tell me everything would be fine. Pacing this small, then-unfriendly house, not wanting to be here, not wanting to be anywhere else. Within six months, it passed. Now it's this house I am afraid to leave. I'm not sure I want time to just keep coming at us. The future scares the pants off of me sometimes. It frightens me that I suddenly find myself with so much to lose. And no promises that I won't. 

That's the problem with being too happy, with being surrounded by exactly who you want to be surrounded by. With being in a golden time in your life. It can all end so quickly. I know this sounds morbid, but it wasn't like I wasn't thankful, every single day, that I had a healthy, happy kid before Daniel was diagnosed. That didn't get in the way of him being the 1 in 287. (That's kids who will be diagnosed with cancer before they turn 20, by the way.) And I can't help but think of all the things we aren't guaranteed- we aren't guaranteed that Daniel won't kick cancer's butt, only to do something stupid as a teenager and get himself killed. We aren't guaranteed that Alex will grow up. We aren't guaranteed we, their parents, will both be around to see them grow up. All we are guaranteed is this precise, perfect, glorious moment, right exactly now. So why do I still insist on spoiling it with the dreads? 

So there's my honest and vulnerable moment. Maybe tomorrow the dreads will have turned into the happies. These delicate brain chemicals, keeping humans guessing since forever.

In the meantime, this: a moment I want to never end. Little brother, who thinks the sun rises and sets on big brother; big brother, who deigned to give little brother a hug for no apparent reason except he decided he liked him. Although in the next moment he planted his foot on little brother's chest and tipped him over backwards. All in the name of love, of course. 

And also, this. They migrate toward each other in their sleep. Well, they migrate toward me. Or rather, where I usually sleep, between them. But when I'm not there, they end up cuddling each other instead.

And this. Because I have to share the angelic adorable before it damages my heart. 

Interim Maintenance, out.

Hello and welcome back to the sweet suite where we sit watching the last high dose infusion of bright yellow methotrexate slowly drip from a bag, down a line, and into our baby. 

We didn't think this was going to be the last one. We were told by our nurse (with knowlege of and access to our treatment plan) that we were going to have a two-month Interim Maintenance, a two month Delayed Intensification, another two month Interim Maintenance, then three years of Maintenance. So six months from the start of this phase until Maintenance. Except the last time we were here, we started asking the rounding doctor (since we have not seen our doctors, attending or fellow, since Daniel's PEG reaction) about our timeline, since we have been planning a trip to our friend's wedding in Tahoe the end of October since long before Daniel was diagnosed and needed to finally be able to solidly commit to going. Since she was the rounding inpatient doctor on duty that day, she was not particularly familiar with Daniel's treatment plan, so she asked for time to find out what we needed to know. The next day, she popped in with a roadmap for our first month of Delayed Intensification, said a whole lot of emails had been exchanged between her and our doctors, and the consensus seemed to be that he would head straight into Maintenance after Delayed Intensification. Later, Daniel's doctor, at least his fellow, stopped in because he had a minute and had heard we were asking about him, to answer any questions we might still have. I asked if that had changed or if it had always been the plan, and he said the second Interim Maintenance was for very high risk patients, not merely high risk, as Daniel is. 

So. Two more months of intense...intensification. Nothing about that word, in relation to chemo, sounds fun. But at the same time, I am literally terrified about hitting maintenance. I know, it should be a celebration, right? And we plan to treat it as one. But maintenance is scary. It feels like we're being thrown back into the ocean. The hospital has come to be comforting. Constantly knowing where his counts are by way of frequent blood draws is how we maintain our illusion of control. When people ask how he's doing, there's something to tell them. ANC, hemoglobin, platelets. These things dictate our response to life. If he's pale, what is his hemoglobin? Does he need a transfusion, or is he just tired? If he falls and hits his head, what are his platelets? Should we be worried about bleeding? And do we need to stay home, or can we be around other people? What is his immunity like? Check his ANC. And  that other specter, relapse, is unlikely during intense treatment. If it were to happen then, it would be picked up on sooner. But it won't. Because no. 

This stay has been the easiest one, so far. Daniel has more energy this time than other times. Bobby has not gotten any calls to go to work so he has been here with us, all but the first day. The nausea has been so much better. Daniel is actually eating so far. Not anything from the hospital kitchen, of course. But I brought all his former greatest hits from home- kettle corn, corn chips, ginger snaps, grapes, strawberries, sliced bread, bananas. Getting him to eat is like throwing everything we can think of at the wall, hoping something sticks. Pretty much, we have to give it to him, he will put it close to his mouth, and the mouth will either open when he smells it, or it won't. And that's that. Nothing will change the mouth's mind. So yesterday, the mouth opened for a grape in the morning, about four grapes in the afternoon, a few bites of watermelon, about half of a cutie orange, a square of dark chocolate, and late last night, about a dozen corn chips dipped in refried beans. And considering what he normally eats while getting methotrexate, this is phenomenal. 

...and now we are home. I have tried for four days to write this post. Just can't seem to get it done. Mostly because I had a lovely post all written, then had to jump up to deal with something, didn't get it saved, the app closed on it's own, and I lost all but the first two paragraphs. 

Daniel is looking a little bit rough this morning. The effects of two months of high dose chemo are mounting, as far as his physical appearance. His hair is growing in so thick we actually have to wash it. He even woke up with a tiny scruff of bedhead the other morning. But his skin is looking pale, his eyes droopy and sunken, his eyelids bruised. His nose drips all the time. The adhesive from his port dressing  left oozing lines of broken skin again, his chest criss-crossed by the brown discoloration of former lines. Methotrexate causes skin darkening at the sites of skin breakage long after the scabs have fallen off and the skin has healed. He still has dark spots on his scalp from the sores his rash turned into two months ago. But by all appearances, his maladies are all in his appearance this time. He is spinning around in circles, singing, then falling over when he gets too dizzy at the moment. Of course, if falls too hard, he also cries for a bit. He's being mercurial. But what he isn't doing is throwing up uncontrollably, unable to even keep his anti-nausea meds down, as he was two weeks ago after his last infusion. He even "helped" me cook him two eggs, then opened the mouth as I cut bite sized pieces one at a time. Because we've become a little OCD about our food presentation. We like our food to stay whole until we eat it, not be pre cut into bitesized pieces. It's just prettier that way. So now we sit and chew our mouthful, swallow it, then yell for mom to come cut another bite. Whatever. Seriously, whatever it takes. The appetite is so touch and go, a disappointing meal presentation is grounds for refusal to eat. So if I have to learn how to cut tomato florets and garnish with pretty little herb sprigs and spirals of citrus peel and aesthetically drizzled oils, well. Just let me get my lemon scorer, I'll be right there. 

Since we had no lumbar puncture this time, check in was later than usual, 11 am. Bobby was working, but I took this opportunity to take Daniel to the zoo early in the morning. We got there about 9, and I decided to forego the stroller and simply throw Alex on my back and make the morning all about going where Daniel wanted to go. No racing around putting on mileage and seeing all the animals we could, just a little boy leading his mama around by the finger, exploring. So in two hours we scarcely moved beyond the gate. We looked into every window, investigated every door to every indoor habitat to see if it would open, and then we discovered the feline house, with all of the cats in their inside cages. As an adult, it hurts a little to see big cats pacing and panting, perturbed at being in a small structure. I know the whole feel-good thing, zoos are necessary for conservation funding, and also for creating a personal experience so humans even care about such things as species extinction. But I always struggle with seeing something as wild and predatory as a tiger or a leopard- how can they possibly not be in hell in a zoo habitat? It's one thing if it's the lemurs, or even the monkeys, entertained by the human's interactions, ropes for swinging...but big cats unable to run doesn't feel right. But Daniel was enthralled. The pacing tigers were amazing to him. He ran back and forth with them. And back and forth between the two enclosures, giggling and clapping everytime one of them looked toward him. I had hoped to stay out of indoor spaces, the outdoor air having sanitized the rest of the zoo overnight, but he was having none of it. And he was having none of not touching every. single. surface. I finally got him out of the feline house and on to the seals and polar bears, and that was it. Our time was up. And it was tragic. 

At the hospital, I unloaded all of our gear for a multi-day stay into a wagon at the front door, then left it there while I parked, then hauled the whole thing up to the clinic with me, since I would not be able to go down for it after we were admitted without taking two boys down with me, and I couldn't leave the floor when Daniel was actively getting his infusion, in the rare event his line would break and spill chemo in an area that was not a specific oncology area. Three people in a room for three days take a lot of stuff. I try to make it less every time, but by the time I bring the suitcase with countless clothing changes for babies who tend to soil clothing a lot, especially one on a lot of fluids, plus the pack'n'play to keep Alex contained, plus the potty chair, plus a soft blanket for each of us and a spare to replace the one that will inevitably get chemo pee on it, plus a variety of snacks to tempt Daniel with (the more he eats, the more he drinks, the better he poops, the faster the chemo clears), plus toys, books, crayons, and movies. And diapers. So many diapers...it's a lot of stuff.

The only hospital drama this time was right at the beginning of his infusion. His blood ph was 7.5 upon arrival, so no sodium bicarbonate needed to adjust it. After four hours of pre-hydration, they started his Methotrexate about 5 pm. They always start with a bolus, a higher amount given over 30 minutes, then start his 24 hour drip. Halfway through the bolus, the nurse practitioner came by to check on us. Daniel was all enthused about playing with her, but when she picked him up his line just barely caught on the IV pole base, and snap! The line broke. Right at the end of his port access line. The port access is a needle that sticks into the port under his skin on his chest, and it has about a six inch plastic line hanging from it with an end that screws onto the rest of the tubing.

Something was defective about the way that tip was attached to the line, and with the smallest tug, it came apart. Now, if this had happened further down the line, all that would have had to happen was the line be clamped, and removed so no blood could flow out of his port and no chemo out of the line. But as it was, the clamp slipped off and bounced away when the tip broke off, and the nurse practitioner immediately had her hands full manually clamping off the line from his port, suddenly an open access right into and out of his artery.  I jumped up asking how I should clamp off the chemo line as chemo was running out onto the floor, but she barked at me to run for the nurses instead, so I hustled out to the nurse's station and returned with one or two in tow, which were soon joined by several others. Everybody ignored the running IV pump while getting the line from Daniel's port clamped and secured, then clamped off the chemo line, then had to reaccess his port with a new needle. Which is always traumatic for him, especially without deadening cream and so soon after the first time he'd been poked and accessed. Then they restarted his chemo bolus at a higher rate to still keep it within it's 30 minutes, and finally were able to call for a chemo spill clean up. Which was a whole process in itself- special suits, goggles, the works. I was really glad someone was there when it happened. Because my first concern was the chemo spill, not having noticed the location of the break was allowing blood to run out of my kid's body. I really do appreciate our unusual occurences happening when the professionals are in the room. From drug reactions to split lines, it all waits to happen until there are witnesses who know what to do about it.

Not to mention, this all happened as Daniel was running around completely pantsless. So until everything calmed down, he sat with his bare butt on the NP's lap. Which I didn't notice, and neither did she, until she went to pull him further onto onto her lap and accidentally ended up grabbing a handful of...junk. Instead of diaper. So then I grabbed a diaper and put it on him, a bit belatedly. 

Daniel had gained weight again this time. Thank you, boobs with your overabundance of milk and overactive letdown that forces him to drink more than he wants to. They may be responsible for Alex's gas and tummy troubles, but they are also responsible for the fact that a toddler on chemotherapy's weight gain is following a healthy curve. Although me eating for three is no small part of my life. I'm not losing the baby weight like I did after Daniel was born, and I can't seem to be able to even try. Because creating a calorie deficit makes me pretty much grind to a stop. When my last meal is all used up, I am instantly shaky and exhausted. I don't think I make that much milk until Daniel's nausea gets so bad he won't even nurse. Then I realize that every six hours or so, he consumes over six ounces. Because that is what I have to pump just to keep things less painful. 

I know all sorts of people pass through the hospital. It takes all types. One of the clinic nurses gave me a compliment I was not quite sure hiw to respond to. We were in the clinic halls, playing with toys with Alex on my back, and she laughed and said, "Every time I see you, you'd never know anything is going on with you. You seem so at ease with this all. You always have it together." Clearly, she didn't notice our mismatched socks, my overgrown eyebrows, the fact my baby hadnt had a bath in four days. Which probably were not the details she was referring to anyway. How do I feel? Certainly not traumatized or particularly stressed out. Why would I? It sucks, what Daniel is going through. But nothing else has changed, really. We are just living life in a different location sometimes. Sometimes our life happens in a tall brick building in Aurora, sometimes it happens in a little house in Loveland. But aside from the big facts, the little moments keep happening. Nowhere is this more evident than in the fact that over the course of Daniel's treatment so far, Alex has changed from a sleeping, eating, pooping newborn to a laughing, bubble-blowing, shrieking baby scooting around the floor on his tummy, rocking on his hands and knees, grinning at and flirting with everyone he sees. Alex didn't put his life on hold for cancer, why should the rest of us? Do other families live in an endless state of suspended animation? Not the ones we know personally. Should we be more worried? Maybe I'm just too clueless to know how freaked out I should be. 

A few minutes later, a little boy a year or two older than Daniel ran past us, followed more slowly by his mother. A nurse asked them brightly if they were done now. The mother fell apart, crying in her arms. I didn't try to overhear, since the mother was hunched away from me speaking quietly to the nurse, but couldn't help but hear, "They found a blast". Relapse at the end of treatment. Sky falling. Fragile hopes, shattering. Future, so much harder now. While my life in the hallway was all about the fun of being with my boys, hers was crumbling around her. And then I realized, this is why. Fear. Not to say we actually have it together, because we don't, but different people respond to fear different ways. A day spent giving into fear is a day that could be spent basking in the sunshine that is being Daniel's mother, lost forever. Fear has us one hundred percent certain that we will be in the nine that beat it, not the one who doesn't. Fear is what is behind the door we have our backs to. On this side of the door there is nothing to fear. There is just days of cuddles and playing together in a room with an IV pole, family walks around a green park-like campus, movies and books and games together as a family. The best years of our lives. The golden time when our children are small and innocent, and we are their everything, as they will always be ours. And besides, if we are the one instead of the nine some day, we just cannot afford to trade one happy memory in on a sad, terrified, or freaked out one. These memories are treasures that only we can deny ourselves. 

I think this must have been going on in my head already on April 22, the day he was diagnosed. The conviction that it was only real if I let it be. The mundane, the details, those are real. But they are also sweet. They are fun. They are time together. As I was trailing twenty minutes behind the ambulance carrying a weak, pale Daniel and a worried Bobby down to Denver, the emptiness of Daniel's carseat behind me felt like a physical hole. A chill against my back. All I wanted was to be back in his presence. I see this in Bobby all the time as well. Daniel's presence heals him. Time away is just time to pass until he can gather him in his arms again and feel his okay-ness. We held ourselves together by sheer force of will fueled by the numbers- this is the best type of cancer to get. We are only dipping our toes in the pool that is Cancerland. We are playing "a day in the life of cancer parents". It's like cancer voyeurism. Not actually us. Not actually our real life. Just an experience we are currently immersed in. Mountain biking in Moab, hiking in Hawaii, driving through the jungle in Mexico, child with cancer in Denver, climbing mountains in Summit County, exploring canyons in Utah. I called this blog "Daniel's Big Adventure " because I didn't want to give into any sort of thinking that this was anything but a temporary stop, an exploration of the way the other 47 kids in the U.S. who are diagnosed with cancer every day live their lives.

It became more real when Simone died. Until that point, all the kids seemed okay. Because they were still breathing. As far as our experience with kids we know personally, they would all survive this and go on to live long, healthy lives, they would all fight hard and by virtue of fighting hard, would win. Any other outcome was just speculation. Now we realize they won't all win. But still. Even with the Russian roulette that is childhood cancer, with Acute Lymphoblastic Leukemia, only one is a live round, hidden among nine blanks. What are the odds, really? Well. One out of ten. Those are the odds. 

I don't know how it is in other rooms, but the nurses say some parents won't ever even change a diaper while inpatient. Which I don't understand. We are Daniel's caregivers. We want to be. It's another way to feel in control. The doctors and nurses are there to provide the technical care we are not qualified to give. Every time we get a new nurse, they act shocked to discover we chart our own intake and outputs, weigh each diaper, and draw urine samples every two hours to send down to the lab. I always reply something to the effect of, while it might take four or more years of specialized education to make sure my son gets the right drugs at the right doses and the right times, and to monitor his health, his lungs, his digestive processes, his vitals to know when they need to intervene, I am pretty sure it doesn't take four years to figure out how to operate a gram scale, measure pee in a hat pan, don a pair of blue gloves, draw up a syringe full of pee and put it in a bag. Or to write down specifics of bowel movements and urine output. And for goodness' sake, it certainly does not take four years to figure out how to walk down the hall for a cup of ice water. Or to make Daniel's bed with fresh sheets and bathe him. Just tell me how specific I need to be for your charting and I'll handle it:

Because Daniel felt so much better this time, we were able to escape the hospital a time or two, after his infusion ended. We went for a walk Thursday night, hoping to coax a grin out of Daniel, but as excited as he had acted about leaving the room, once we got outside, he wilted a bit. So we walked for us, dragging him along as he pondered life in the wagon behind us. In order for Bobby to make the most of his time out of the hospital, he extended his walk by using one of the University research/admin buildings for a stair run: 

The next day was a better one, so we escaped for lunch down at the small row of restaurants that serves staff and students in the middle of the campus. It got warm with Alex on my back, so Daniel was pretty proud being so big, able to pull Alex in the wagon behind him. It tried our patience as he wondered aimlessly, running the wagon into planters or into the grass, and finally, out of concern for the sun on his skin, extremely susceptible to sunburn with the methotrexate in his system, and the fact that his IV pump battery was quickly running down, we finally had to carry him back to the hospital. There were tears. 

And so ends Interim Maintenance. Well, it actually ends on October 13, when we give him his last mercaptopurine for this phase, and get a week off. If counts pass, we will start delayed intensification October 21. This kicks off with a bang, a lumbar puncture with IT methotrexate, a week on- week off- week back on dexamethasone (the steroids that so kicked his butt during Induction), and two weeks of Erwinia shots, those horrible, stinging, painful shots in his thighs that make him not want to walk. It's the two month long uphill sprint to Maintenance. 

In the meantime, we have somehow managed to jump through a lot of hoops and are signing a thirty year lease with a mortgage lender the end of this month. If all continues to not fall through. I feel like "thirty year lease" is a more accurate way of saying it than "buying a house". Because people who have great jobs and incomes buy houses. People like us, we have to let the bank buy our house and we pay rent to them for thirty years. At the end of which maybe- we hope- we can get at least some of it back. But it sounds like our preliminary loan approval went through, so we're rounding third base, at least, with the process. The monthly budget will be easier by next month, with housing costing several hundred dollars less. Doing the math revealed to us that owning a home would have to lose us $80,000 in repairs or depreciation in the next five years to leave us better off renting, with rental prices so high. Because that is what we would pay in rent to stay in this house or one like it for five years.

Sorry this post has been disjointed and events not exactly in order. I've written it in about a dozen different sittings. I've lost content four different times, by way of life getting in the way or writing. I guess I got the mental health advantage of writing it all out, if you didn't get to (have to?) read it all...

Amazed by the science

We interrupt this blog to discuss something I have been wanting to take the time to put together for awhile. This post has been sitting incomplete for over two months already. Maybe it's time to pull it out of the drafts folder.

So here goes. All of the treatments Daniel is on, what they are, and why they are the ones chosen for his particular cancer. 

We see "miracle cures for cancer" touted everywhere. And it is easy to understand why. Why wouldn't we want to hope and believe that answers are available, free, and easy? It is so alluring to believe that maybe healing can be found in something simple without walking the fine line of a drug threatening to kill the body the cancer lives in, in order to kill the cancer. Drink this juice. Flush this organic coffee...ahem...where the sun don't shine. Eat two pounds of strawberries a day. Cannabis oil. Turmeric. Vitamin C. Essential oils. 

The more I find out about how cancer works, the more I realize what a truly complex disease this is, and how impossible a one-size-fits-all approach would be. As well as how oversimplified so many of the common things we hear about cancer are, especially in this age when everybody with a wifi connection is a health expert. Things like "sugar feeds cancer", "cancer can't grow in an alkaline body", "a healthy immune system will protect you from/cure cancer", and "natural killer cells!" If only it were that simple. It does seem like it should be when one hears about the latest triumph of an overhauled diet, a concentrated plant compound, a new way to help the body heal itself. Sure, we can limit our exposure to things that create damage in our bodies. And we can give our bodies the best possible building blocks to support healthy cell replication. Just like we can cut down our chances of getting a flat tire by not driving through a construction site. But once we remove all the things that will likely cause a tire puncture, we aren't guaranteed we won't still go out one morning to drive to work, and find a flat. Because sometimes, tires leak and cells just don't quite replicate like they should. Always have, probably always will. Genetics. Random errors in the millions/billions of complicated DNA replications that occur every day.  

I came across an excellent article the other day that explains how cancer is not a modern disease, why some things may work sometimes, but why nothing will work every time. How not only is every body different, but so is every cancer, how cancer is becoming less of a death sentence the more we continue to unravel the mysteries of DNA, and what sort of therapies are on the horizon: http://gawker.com/green-juice-will-not-cure-your-cancer-1705579750

The thing is, some of these "miracle cures" do work, to a certain degree and in certain applications. Maybe even well enough to catch the interest of researchers. Many things can kill cancer, but not many can do so effectively enough to bet Daniel's life on it. But the thing that has most blown my mind throughout this experience so far is the sheer amount of research that has gone into the creation and use of the drugs we do have, which have made cancer (albeit slightly) less terrifying than it ever was before. Who figures these things out? Who even knows to look at these obscure mechanisms and functions within cells, and finds ways to change the way they behave? Who figures out the millions of tiny factors that go into making our bodies tick along on a cellular level? Furthermore, who, once they start to understand the way the body works and the medicines we take to help it heal, can say that an entire field of study is suppressing emerging discoveries that might work in order to keep using the ones that don't? If it (whatever It is) works as well as the internet says it does, the medical field generally wastes no time co-opting it, isolates whatever it is that makes it so effective, synthesizes or finds a way to mass produce it, and makes a craptillion bucks.

Plants, they say. Nature has given us everything we need to heal ourselves. Traditional cures, folk remedies. Go back to ancient times. Essential oils and plant compounds. And this is sometimes true. Instead of ignoring folk cures, modern medicine has taken a look at the ones that produce actual, major results, and has given us, for just one example, Vincristine. Vincristine is a plant alkaloid, extracted from the leaves of the Catharanthus Roseus, or rosy periwinkle. In the '50's, while studying this plant because if it's tradition of being a healing plant, and having discovered it contained a very high number of plant alkaloids, researchers found one of these alkaloids caused mice with leukemia to live longer. This is because it interferes with the function of microtubules, which are responsible for moving nutrients through cells, so the cell cannot divide properly (or, in the case of cancer, improperly). Fast forward, it was approved for use in humans. Because it was very effective. This is an example of something that is free to everyone, a common plant, that "big pharma" had no interest in suppressing for profit but instead studied to see what made it effective, isolated the active compounds, and now sells for far more than they would have ever made selling drugs that do not work as well. It causes a little nerve weirdness, I believe jaw pain, tingling and numbness in the fingers and toes, and hair loss, which for Daniel, was not complete loss, just a slow thinning. Daniel has had many Vincristine infusions, and will have many more in the next three years.

Granted, I am sure I am doing a lot of oversimplification myself, here. My murky understanding of these things barely scratches the surface. I know only enough to know I don't even know how much I don't know. (Y'know?) Again, with questioning my life's choices and not getting a degree in a scientific field that would better equip me to understand these things, because I really do want to understand. 

Nutrition. Well...that's complicated. In the late '40's, it was observed that mice with leukemia given folic acid did much worse, experiencing much more rapid deterioration. Apparently folic acid fed the cancer exceptionally well. So off to the lab, where they synthesized a substance, methotrexate, almost identical to folic acid. Almost. So close our cells do not know the difference, so the uptake of this substance, which does not behave like folic acid, crowds out the uptake of folic acid. And sure enough, without folic acid feeding them, the cancer cells die. By the '50's, methotrexate was being used to treat cancer in humans. Of course, blocking folic acid uptake for too long is problematic for overall health. So when it is given in high doses, after allowing it to work for twenty four hours, another drug is administered. Leukovorin, a form of folic acid, again feeds the cells and stops the effects of methotrexate in the body.

A lot of chemotherapy treatments are based on limiting needed compounds to cells at certain times in their cycles using substances that were formulated to be almost identical to a substance in food or created by the body. So close to identical the body doesn't know the difference, but just different enough they are unable to perform the same function, the absence of which starves the cell at certain times in it's cycle, screwing with the cell's ability to replicate. Nucleic acids are substances within cells that allow them to transfer their genetic information, including the information telling them how to replicate and when to stop replicating, from one generation to the next. Purines and pyrimidines are two of the building blocks of these nucleic acids. Cytarabine, the subcutaneous shots we've been giving Daniel at home, is just similar enough to pyrimidine that the cell tries in vain to use it instead of pyrimidine to build these nucleic acids. And Mercaptopurine does the same, mimicking purine to gain access to the cell, then damaging it from the inside out, thus preventing the cell from passing on it's instructions to divide too rapidly on to the next generation. Without this misinformation, the next generation of cells returns to it's standard rate of replication. Thioguanine, an upcoming oral chemo, does the same with guanine, another compound essential to cell replication.  

I think we've talked about bacteria-derived asparaginase, the way it works in the body to break down the amino acid asparagine, which healthy cells make for themselves, but cancerous cells have to draw in from the body in order to survive. And you'll remember Daniel's swelling reaction to it, and our resulting switch from E-coli derived PEG (polyethylene glycol) Asparaginase to Erwinia Chrysanthemi derived asparaginase. In 1953, it was observed that lymphomas regressed when treated with guinea pig serum- literally what it sounds like. Serum from the blood of guinea pigs. Apparently that's a thing. So they took a closer look and determined it was not the actual serum suppressing the cancer, but an enzyme in it called asparaginase. So they began looking at asparaginase from other sources, comparing the effectiveness, and determined the most effective asparaginase enzyme comes from two bacterias- E.coli and Erwinia chrysanthemi. This is an example of research weeding out treatment that is slightly less effective in favor of treatment that is more effective. So far, Daniel has had three doses of asparaginase. Well, two and a half. The third dose was that $209,000 series of shots. Which we have two more rounds of.

In the 1950s, an Italian research company began looking for anticancer compounds in soil microbes. A previously unknown strain of bacteria, Streptomyces peucetius, which produced a red pigment, was discovered near a 13th century castle, the Castel del Monte. The active compound in the bacteria was isolated and used to create an antibiotic that was effective against tumors in mice. The two research teams who discovered it called it Daunorubicin, a combination of "Dauni", an ancient tribe that once lived in the area, and "rubis", French for "ruby", after it's red color. In the 60's, the trials moved from mice to humans with leukemia and lymphoma. By the late 60's, it became apparent the drug, while effective, could also cause fatal damage to the heart. With later changes, intentional mutations to the compound, a different red colored antibiotic was created and named Adriamycin, which was later renamed doxorubicin. Doxorubicin has even better anti cancer properties than Daunorubicin, but unfortunately the heart toxicity was not changed by the tweak. This is why Daniel recieved an echocardiogram at the beginning of his treatment and will be monitored while receiving Doxorubicin. No other drug has the potential to damage his heart like this one. It works by stopping the movement of an enzyme, topoisomerase II, through the cells it comes into contact with. Without this enzyme, supercoils in DNA cannot relax to begin replication, nor can they reseal, so no replication of those cells means no errors in replication get passed on to the next generation. Or something. I read somewhere it has also been referred to as "Red Devil" or "Red Death" because of it's color and toxicity level. This is one still looming, one we have not recieved yet. I believe this is one Grandma Sandi also got. Or was it Grandpa Jim? I can't remember anymore. I only know it sounds familiar.

The last drug in the arsenal that's being used to treat Daniel's cancer is cyclophosphamide. I am admittedly very foggy on the details of precisely how this one works, but it has to do with disrupting DNA. Toward the end of the first World War, mustard gas was being used on troops, instilling terror of biological warfare- a weapon nobody could fight. As the beginning of the second World War loomed, chemists were frantic to find an antidote, so they started by studying the effects of mustard gas in the bodies of soldiers affected by it. Since the ability of mustard gas was known to suppress immune cells, the same cells that are overproduced by leukemia or lymphoma, it was theorized that it might be effective at suppressing cancerous immune cells as well, and could be used to treat existing leukemias and lymphomas. In the following years, the formula was tweaked and honed to be more damaging to cancerous cells and less toxic overall, and evolved into, among other formulations, the drug cyclophosphamide. Since it is highly toxic, they try to limit the doses to the absolute mimimum needed. The most noticeable side effect, aside from the usual chemo lineup of hair loss, nausea, potential organ and tissue damage and various neuropathies, is how badly it makes Daniel's eyes burn when it is being administered. Tears run down his cheeks and snot pours from his nose faster than we can mop it up for the thirty minutes it takes to push it into his bloodstream. These infusions are accompanied by six hours of as much fluid as he can handle to limit it's chances of staying in his body long enough to create life threatening side effects, including a secondary cancer such as Acute Myeloid Leukemia or bladder cancer. So far, he has had two doses of cyclophosphamide. I believe Grandma Sandi also got this one.

Together, these drugs represent an attack against cancer from every known angle. Since no single line of attack is going to be one hundred percent effective, if one misses mopping up all the haywire cells, another will hopefully succeed. Yes, there are risks. Huge ones. And yes, there is the probability other lines of defense already exist that are not mainstream yet. But leukemia was the first cancer to be successfully treated by chemotherapy. This complicated (to us) barrage of treatments has been fine-tuned for over sixty years. Hospitals all over the country share their info with each other, participate in the same clinical trials, give identical treatments and painstakingly chart results, and this has turned a death sentence into a sometimes (depending on the subtype) over ninety percent chance of long-term remission. This is better odds than any "natural" alternative treatment for this type of cancer. And there is a reason for this. The reason is collective knowlege from thousands of research labs and brilliant minds who understand disease and the human body far better than I can ever hope to. And lots and lots of failures, aka deaths, which they learned from. And continue to learn from. We keep repeating to ourselves that we live in the right time, in all of history, to get cancer. And the time will just keep getting better the longer we live. If we had not waited eleven years to have Daniel, but instead began having kids immediately after we got married, we would have gone through this ten years ago. And in the last ten years, success rates have inched up just that much more. It's a great time to be alive. And to stay that way.

Words to live by

Hello and welcome to baby naptime, mama write time. It may be 5:30 in the evening, but both babies are simultaneously napping. I'll take it and call it a win. 

Grandma Sandi is here at the moment, folding my laundry. She drove out from Kansas for two days of baby snuggles. I keep telling her that while folded laundry is nice and all, and she's welcome to keep doing it, she's the only one who bothers. My philosophy is that life is too short to wear matched socks, underwear with crease marks or shirts without wrinkles. Looking wrinkled is just my way of telling the world I have better things to do than to spend my day putting away clean laundry, and they should be just be glad it's clean as evidenced by the wrinkles from lying in a pile on the couch, and that I don't smell as bad as I look. And besides. A mother who looks too put together is just suspect. Not relatable. Clearly has superpowers and therefore will never be able to hang with underachievers like myself, or even upper middle achievers like most other women. This is, naturally, why I have yet to lose those last fifteen pounds Alex left on my hips when he exited in April. I keep it to make my friends feel better about their lesser shortcomings. (And because I like the simplicity of only having to choose between big and bigger yoga pants when I dress myself.) And why my eyebrows often grow down into my eyelids. And why I always have dried milk on my shirt and spit-up on my two pairs of yoga pants. And I let people into my house when it is less- far less- than sparkling. And why my kid eats french fries in the car and I leave the dehydrated ones tucked into his car seat indefinitely. It's hard to make these sacrifices, but I do it for my friends. So they won't feel intimidated by me. So they can even feel a little bit better than me. Because everybody needs to feel superior now and then. And if I can't provide that service for my friends, who will? 

I do, however, currently have about twenty jars of soup all packed and ready to go in the pressure canner- grass fed beef vegetable stew, chicken tortilla soup, and gumbo. So there's that. Look at me inching up the achiever spectrum.

Last night, we went to bed at a decent hour, like 9:45 pm, and after Daniel had finally nursed himself to asleep I set my alarm for two hours to give his tummy a chance to empty for his mercaptopurine. The alarm jerked me out of a coma, clawing and panicky, and grabbing at the source of the awful noise, but that was not as unpleasant as getting poor Daniel out of his own coma to take it. We ended up waking the entire house, me wrapped around his thrashing little body, holding his head against my shoulder as I tried to convince him to open his mouth, then swallow, while he fought. The whole time, me shhh-shhhing and trying to speak soothingly to him, reassuring and trying to calm him when the only thing that would actually work to calm him was nursing, while all I really wanted to do was exactly what he was trying to do- fling the syringe across the room. And then, of course, he had to cry himself back to sleep without boob, just my cuddles, which he scorned because I could not/would not give him boob for two more hours while the Mercaptopurine absorbed. So he lay there crying inconsolably until his sobs quieted into deep breathing again, and I lay there with a giant engorged boob leaking all over, and the one thing we both needed, we couldn't do. Because cancer. Finally at 4 am, I tried to gently wake him to help me out by nursing, but he was in too much of a fog to wake up. I was soaked in milk, so I got up and pumped a little- just eight ounces- out of "his" boob to relieve some pressure so I could sleep. Then at 4:30, Bobby got up to go to work, so I got back up as well to take him to his truck eight miles away. By the time I got back, grandma had moved to the bed, taking up residence in my spot between two half-waking babies, so I climbed into B's side and grandma, Daniel, Alex and I finished out the night in varying degrees of snuggle. Such is sleep in our house these days. Fluid. Multigenerational. Organic. Sometimes indecent.

Indecent as in, I awoke in the hospital the other morning to sunlight and a nurse changing Daniel's overflowing diaper. I was lying on my back with my arm flung out beside me, Alex asleep on my arm, the neck of my shirt pulled down, one boob out and staring the nurse in the face as she bent over us. I felt so incredibly classy in that moment. There is just something about waking up from sleeping flat on your back in the presence of strangers, drool running down your cheek, eyes unfocused in the brightness, breath whistling through several big dried boogers in your nose thanks to the hospital air that makes the Sahara Desert seem like Seattle, while flashing your son's caregivers with funbags that are just not quite so much fun after two full term pregnancies and lactating for the last 30 months straight that just puts your whole life into perspective. To quote the male nurse I awoke to fishing around in the dark one night under my sleeping bottom looking for Daniel's IV tubing, "We really should know each other's first names before we get to this point." Words to live by. I feel like this is a statement that sums up most of my life these days.

This last Methotrexate infusion knocked Daniel on his bottom, nausea-wise. His zofran is not really keeping ahead of it. I tried zantac twice, but he barfed it back up immediately both times. He has become genuinely terrified to go to the bathroom, crying and clamping his hand over his mouth when he pees, the dark yellow, strong smelling pee of a dehydrated little boy wafting past his face and making him retch. He cries and heaves when I change his poopy pants, too. And just the motion of sitting up in bed yesterday morning was cause for vomiting. He wants to nurse, but refuses to swallow. He puts his lips on my boobs, but with his mouth shut. The familiar position of nursing is comforting to him without needing to taste or swallow anything. He needs to be peeing at least one milliliter per kilo per hour, if he pees less, he will need to go in for IV fluids. Today he has peed 200 ml in 13 hours, and he weighs 13 kilos. This means he has managed, even with his nausea and mouth sores, to drink exactly 31 milliliters more than the absolute minimum required to stay out of the hospital. That's like the equivalent of one large swallow of water. His eyes are starting to look legitimately...chemo-ey. That particular shade of bruised brown creating circles under them, down onto his cheeks. Hs face looks pale and tired. Here he is, sleeping with his little yellow pan close to him, lest he need to barf...

One more high dose Methotrexate infusion. We can do this. He can. ...I hope. Every one gets worse in it's way. The first one, that rash. The second, that fever. The third, this nausea. I hope it's not a new one next time that's worse. It hurts to see him so miserable. 

I really think I am a better person for the experience of this interesting little stop in cancerland. More peaceable. More patient. Quieter. Sadder, but with more depth of emotion and empathy. It isn't that these things weren't there before, I just didn't give them as much airtime. This experience has me less reluctant to feel. And I feel...more. More determined to live in the moment, every moment. More aware that with every breath, everything can change. More heart, more love to go around. But please don't make me a liar by suggesting this is the reason my baby got cancer. Because I just can't. I might not respond to such a suggestion with any of these listed qualities. There is no way I can be okay living in a world, or with a belief system, or subscribing to a philosophy that suggests an innocent child is merely a pawn in a scheme of "it all works out for the best". Who's best? Certainly not the child's. To suggest such a thing is to suggest a child's suffering is justified. No, I mostly just live in a world where there are consequences. Consequences of our human imperfection. Of random errors and mutations in genetic code. Of incomplete DNA replication. Of even lifestyle choices that may damage DNA and disrupt the successful replication of cells. But some master plan arranging cruel circumstances involving sweet, undeserving toddlers to achieve some future goal? Just no. 

Of course, to claim personal betterment as a result of less than ideal circumstances is a very human thing to do. We as humans tend to maintain our baseline. This is our psychology. People who want to be happy tend to be happy with the road taken and vilify the road not taken. Winning the lottery doesn't make someone a happier person years after the fact, just generally less stressed out about the lack of money, specifically. We make a life and find happiness with the person we did marry, and eventually convince ourselves we couldn't have possibly been happy with the one we didn't. Whatever our level of contentment before inconvenient or tragic circumstances, it tends to be much the same afterwards in moment-to-moment life, given an undetermined amount of time and coping. Granted, when one is missing an important person that once enriched their life, there will always be a giamt chunk of happiness missing. But choosing cheer (however modified by grief) in moments that call for it does not change. Previously happy people who have become handicapped usually say it has made them a better person. Previously pessimistic people who experience incredibly good luck find ways to still be unhappy. As long as our delicate balance of chemicals in the brain plays along and keeps us from clinical depression, statistically we will eventually return to the outlook we've always had. Or so the studies say. So perhaps, when I say I like who I am becoming over who I was before, I am simply being human enough to attach meaning to senseless, random life.

Simone's devastated, grieving mama made a comment on Facebook yesterday that has made me reflect a little bit. She said (and I paraphrase) perhaps it was having a sick baby, but her patience with Simone was limitless. Never did she lose her temper or snap at her. Their relationship was one of unbroken trust. (She went on to say it was now that she felt she had let her down, when she could not save her, which, while heart-wrenching, is exactly how I imagine myself feeling after this time of being intensely needed, should we be that one in ten who won't walk away from this.) And I thought, this is how it has been since Daniel was diagnosed. I attempted to be aware of the emotional undercurrents making him act out before his diagnosis, and did my best to understand them and react accordingly instead of taking the easy way out by addressing the effects of the emotions instead of their root, but now I would not dream of being angry with him. Not even in the middle of his steroids when he did nothing but scream for fifteen hours straight. I didn't even take out my frustration on people who weren't him. I have just lost my desire to lash out, for the most part. Well. Until lately, when I made the in-hindsight dubious decision to go back on birth control. Now I save my snark and mads for Bobby. Which I'm not proud of, just cannot tell a lie... We're both trying to tough out this first month or two of me trying to rise above, in spite of being a crazy person, to see if it gets better. If not, life's too short to spend it being a mostly well-balanced person trapped inside a crazy head.  Better the baby box be a ticking time bomb than me be one.

Twice, before he was diagnosed, I lost my calm with Daniel. Both times were during a particularly unstable time for me, thanks to pregnancy hormones, stress of relocation and Bobby's insane schedule, and both times were in the middle of the night when he would wake up crying, go out to the dining room, and sit in his chair wanting eggs. So, thankful at least he was wanting to eat, I scrambled him an egg. He took one look at the plate, grabbed it, and flung it, eggs, fork, and all, across the room. Even shattered the plate once. And just as quickly, I grabbed his little hand and smacked it. Both times, he stopped crying in shock, then, whimpering, saying "uh-oh!" he held his hand to my mouth for kisses to make it better, unable to comprehend that I had intentionally caused him pain. And in my sudden crushing guilt over my betrayal, both times I told him over and over I was sorry, gathered him against me and we sat in the recliner in the dark kissing away his owies, physical and emotional, letting the storm pass, until he fell asleep. 

Now, in hindsight, I know he felt weak, tired and achy, his blood supply diminishing every day, his appetite lacking, and was as irrationally angry and irritable as I was while incubating a tiny human inside me. Now I know what was going on. Now I want to tell every parent I see punishing their kid instead of sitting down and truly listening to them how I was goaded, twice, into violence, and how this still haunts me, because both times, I only betrayed and confused my beautiful little person by simultaneously being the person who caused him pain and protected him. Had I continued doing this, by now he would have realized I was not hurting him accidentally, and he would have had to try to understand why. I know we all have to find our own way with our own children and base our reactions on their personalities, and what I am witnessing in an ugly moment is not always representative of what actually is the norm. So I don't judge by first impressions. But I do know that losing it with my babies is something I just don't do anymore. And a lot of it is because, having looked behind the door that is the posibility of ever losing one of them, I don't want to have a single regret. Whether my time with them ends with them loading up a vehicle and driving away from me headed for college, marriage, career, or just bumbling around finding their own way, or whether it ends before that, unexpectedly and tragically, the daily knowledge that this moment is the only one we are guaranteed makes me a better person than any amount of resolve ever could. I hope I never lose this perspective. 

We are often complimented at the hospital, clinics, and labs we frequent on my "well-disciplined" child. I hear often from the staff that they can tell immediately which children receive discipline at home and which ones get a "cancer pass". Or simply have parents who don't discipline. I shrug it off because I don't really have a child who demands a lot of discipline, so I will never know if it is nature, nurture, or if maybe the terribleness is simply delayed with him. What I do know is if we never tried to understand, if we assumed every meltdown was simply him deciding to be naughty and confrontational, we would miss so many opportunities to understand and show him love, but gain so many opportunities to foster hurt and betrayal. The same desire to understand applies to our sleeping arrangement. How many times does he awake in the night in sudden, childish terror to find us close, breathe a sigh of relief and fall back asleep? How many of those raw, vulnerable moments would I miss with him in his own room, door closed, not allowed to come out? Or, as in the case of my own childhood memories, paralyzed in the dark, too terrified of the monster under the bed to be able to call out, let alone run down the hall to my parent's bed? I need him close to me as much as he needs me close to him right now. To spend eight hours of every twenty four away from him squeezes a band of anxiety around my heart. The time is coming when he will insist on his independance. It is already starting, him pushing me away from him so he can go to sleep in his own bed, pushed against ours. Someday, I will nurse him to sleep for the last time. Someday, he will sleep in our bed for the last time. Someday, he won't be there for me to love him back to sleep after he wakes up confused and afraid. I won't feel his panicked breathing calm with only the weight of my hand on his back. And someday, Bobby and I will have our bed, our room, our space, eventually even our entire house to ourselves. We can wait. 

My friend who's baby has a diagnosis that is unquestionably terminal says there is one thing you cannot do when you know your time with them is limited. You simply cannot leave anything on the table. You make absolutely sure, as much as is in your power, that you do. You go. You experience. Because one day, and you never when, it will end and you will be left only regretting the love you didn't offer, the experiences you didn't give them, the happiness you didn't feel. (Again, I paraphrase.) And to this, I ask myself, but isn't this life? Childhood is, by it's very nature, fleeting. Life doesn't come with guarantees or do-overs. Even those of us with healthy babies aren't guaranteed tomorrow with them. Live. Go. Do. Laugh. Love like it could all end tomorrow. 

That's not too dark, is it? In this strange new world, it doesn't feel dark. It feels like the opposite of dark. It feels like the only way to arm ones self against the dark. 

Song for Simone

Last night, as I was trying to get Alex to sleep, I looked up my long-dormant private blog to find the letters I had written to my future baby during the year of emotional and hormonal upheaval that was two miscarriages and a growing concern that I might not be able to ever get past eight weeks of pregnancy, the discovery that supplementing progesterone could keep a baby in there, and the fear, the closer I got to my due date, of losing him as my heartbeat synced itself to his. I lay there nursing and reflecting on how we hope, and we plan, and we bring these little humans into the world thinking we know what we can expect of our lives with them, and then we can only hang on for the ride when sometimes, we realize the ride looks nothing like we thought it would. Then I signed into my blogger account and retrieved this letter, written at the very beginning of our baby journey.

Dear you

since you don't exist yet, I don't have a name to call you. Any name I would give you at this point would define you, and I don't want you to be defined by anything but you. As time goes by, the circumstances of you will define you, but for now, you are just you.

How do I introduce myself to you? I am your...I am me. I want to be your mother, and I hope I will be, and if i never am, it will break my heart. We have waited so long, just the two of us, and we have done so much and we have gone through so much, and now that we have finally come to the realization that we are ready for you, I want nothing more than to hold you in my arms. Today. I don't want to wait. I love you and I want you, right now.

Whether you will come from us or from someone else, I honestly don't care. I want to show you that nothing matters, whoever conceived you and carried you could never love you as much as I do. But adoption is a long process, and B wants to try to have our own baby first. He says he does not have the energy to deal with beaurocracy and home visits, he would rather deal with a pregnant wife. So right now, it is all about timing and trying to be in the same place at the same time, because it's a little hard to make you without physically being together. B has lived in Kansas for two and a half months, but I have only spent about a week in Kansas so far. I am still living in Colorado. I was pregnant, but six weeks later I miscarried. I thought that maybe that was you, but it wasn't. That was something that wasn't going to happen.

Any way you come to us, I want you to know one thing. I can't wait to meet you.

I could give you our history, but I think you will hear enough of it. Maybe, as time goes on, you will need to know, and I will tell. But right now, it seems a little bit exhausting to me to recount it all. I am living in the future right now. I like it there. You are there. I love you.

Love, Me.

Reading those whispers of love echoing from the me who was not yet a mother, but at the same time so much more of a mother than I am some days now because I was not distracted then by the day to day stuff, I feel I could learn a lot from that sad would-be mother who would have given anything to meet her child. The ride we are on is all a part of what we hoped for- the chance to love fully and unconditionally. No matter the places the ride takes us. Knowing there is a place the ride could go that is a dark place we almost never dare visit because it is just too horrible to think about- that at any given time, we are only a breath away from returning to a time before this new light switched on in our lives. To have the world be as it was before them, only now to be aware of the beautiful personhood of that little person who took your heart, to have felt the reality of their presence. And suddenly to find yourself sitting there, surrounded by everything they surrounded themselves with, but no warm little presence that is them, that is too horrible to think about. The cold that is so much colder in the absence of the constant, trusting warmth and gentle touch. The loneliness that is not only their absence in the moment, but the absence from every future moment. The contrast between the life that made your life mean more, and the sudden darkness you can't even allow yourself to contemplate, should that life be snuffed out. 

When you hear the words, your child has an illness that will kill him if not treated with a treatment that may also kill him, you crack open the door to that dark place, and then, when you see the darkness with your own eyes, you realize there is no way you can go there unless there comes a time when it gets so bad there is no other place you can go. So you close that door, and every time those horrible fingers rattle the knob on the other side, you throw your back to it, lean your weight against it, and stare straight into whatever source of light you can find, burning it into your retinas, and you focus on petty things because anything is better than that door and the darkness behind it.

As I was lying there with my babies snuggled against me, reading the love letters I had written to my future child, seventy miles away in the hospital we had left a few hours earlier, absolutely out of nowhere, even with their backs pressed firmly against it, our friends Mike and Traci's door suddenly flung wide open and swallowed them. At 9:46, Daniel's little friend Simone took her last breath. On a normal, everyday sort of evening in her hospital room, where she was staying because of a cough, her breathing suddenly became labored. Within twenty minutes, she was down in PICU. And twenty minutes later, she was gone. Completely unexpected. One moment, ordinary and "normal", just playing the hospital game of waiting, and then next, gone. I had decided not to go see her on our way out of the hospital earlier because we were discharged during rush hour and wanted to get home as early as possible. Silly, now, in hindsight. I should have. 

Yesterday the world was insanely cruel, but made more sense than it does today. Yesterday the world had her in it. Yesterday, her mom was another breastfeeding mama with a sweet little two year old constantly asking for boob and comfort, trying to not go crazy in isolation. Today, the baby who has been the center of their universe for the last two years is just...gone. Leaving nothing except toys and clothing, her dad's empty arms, her big sister with a missing sibling, her mom's painfully full breasts. No gentle warmth and tiny, exploring fingers, no big smiles and little giggles, no trusting gaze letting her parents know that in her eyes, they were the whole world, as she was theirs. The weight of the nothing she left behind is just crushing, even to us, standing on the threshold of their door looking in, blown away by the sheer magnitude of the emptiness behind it. We have both cried off and on for hours, crushing our babies, their warmth and their life, to us, wrapping our hearts around them so tightly that if they are ever torn away, eveything we are will be torn away as well. 

And this happens every day. Everywhere. To live is to know joy and then, suddenly, unimaginable pain. To be a parent is to wear your heart outside your body, where anything can happen to it. And to do your best, knowing that your best is no match for a tiny body bent on self-destruction and the treatments that wear it out to the point that they can no longer fight. 

This is Simone, the last time we saw her, two weeks ago on the day after her relapse was confirmed. This is warmth and love, trust, soft skin, tiny hands and feet, new hair, fragile hope for a successful T-cell trial that could still save her life. The world without her just doesn't feel right. 

We should be sad, but we should also be furious. Because if more than four pennies of every dollar donated to cancer research went to cancer patients under twenty years old, some treatment lying in theoretical form in a dusty drawer somewhere because it never received funding to move beyond theory might have saved her. Instead, the treatment she got wrecked her tiny body until it just couldn't hold her inside it any more. 

She is loved, exquisitely and completely. But she deserved more. She was supposed to grow up. It wasn't supposed to end like this.