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...