No regrets

I'm finally in bed. I have nursed and rocked and fed and played with two precious little boy people all day, finally got them both asleep an hour ago, made a big batch of oatmeal and then ate it from the pot while watching Netflix, remembered to chug water to make up for forgetting to drink all day, took a shower, and finally, finally, I'm calling this day. In spite of the fact that it's not even today anymore, it's tomorrow. Or however that works. 

I'm finally lying here between these two boy people, and I can hear them both breathe unevenly as they dream, catching their breath, sleeping sighs and whispers. 

...so much for that intended post. I fell asleep. Try again. 

It's now several mornings later. It was an interrupted night again last night. I lost count how many times Daniel woke up, yelling (yes, yelling) BOOOOO??? BOOOooooOOOOoooOOOOO!?!? While frantically groping in the dark for my boob, yanking on my shirt, fingernails gouging my skin. If I so much as use my arms to block these attempts while waking up enough to get things out for him, he falls apart, and while Alex can sometimes miraculously sleep through one or two yells for boo, he definitely wakes up once the crying starts. Another issue lately is that Daniel has started trying to control his diaper situation and wants it changed if he pees in it even once, even though it is still plenty dry. And says no to cloth diapers, which feel wetter against his skin. And refuses to not wear a diaper at all. And if I should put a cloth diaper on him anyway, or make him go without (which is mostly an issue when it's cold, since he can't pull his pants down by himself and refuses to ask for help- he was more agreeable to being diaperless and pantsless when it was warm than diaperless and pantsed when it's cold), again with the melting down. It's loud and it's long. Not to mention we are back to waking up and climbing out of bed to go look for food in the middle of the night, yelling for mom to come along and act as our personal after-hours chef. So this is how it would have been during induction if he had been able to walk. Not much different, except I carried him around the house following his pointing finger instead of following his little feet. 

In reality, the 'roid rage has only been at this pitch for a day or two, and he stops the steroids tomorrow night. I only have to get through one more day of this storm gathering force before it levels off, then slowly, over the next two weeks, abates. It only seems difficult in the moment. Okay, more than difficult. Overwhelming. I keep having to stop and put it in perspective. At least he's here and healthy enough to be so difficult. I'm only so exhausted because I have two amazingly active little boys who love me so much they can't let me out of their sight. 

It is the same thing, though, as induction was- the pain causing his fists to clench, the constant shivering (at least I hope that is just steroids), the constant crying, the constant need to nurse for comfort, the sleeping drenched in sweat. His body language constantly suggests he isn't content, he is always pacing, looking for something (usually food) to be the thing he wants, and nothing fixes his malcontent. 

I've been making a mental list lately of the things normal kids can have that sick kids don't get. I know it might not be the healthiest thing to spend mental energy on, but on the other hand, I feel like if I am constantly aware of these things, I can constantly be creating substitutions to try to hack the childhood he isn't getting. Like I mentioned in my last post, body autonomy is a big one. There are just so many things that create balanced individuals, things that start in baby- and toddlerhood, that sick babies and toddlers don't get in the same ways as other kids do.

Control of their environment. Toddlerhood is the time of life when kids start to experiment with their impact in their surroundings. They test their boundaries in healthy ways, thriving on making choices, and the ways their adults react to this is a big deciding factor in their level of confidence later. This includes the "by myself" phase. The "No!" phase. Except they spend so much of their time in a highly controlled environment where choice is simply not an option. 

Consistency in discipline. Every parent inside the walls of Children's Hospital says they give no sickness passes. Including me. Except, if I'm honest, I do. Because some of Daniel's behavior, I cannot identify the source of. Sometimes it comes enough out of nowhere, I can only try to hang on to my own control as I search for causes. Which is why a normal kid throwing tantrums, his food, his toys, or his baby brother would get reprimanded in the same way every time. But I have to assess every incident- is he telling me something or just being a horrible child? Have I tried to get him to eat and this is his way of telling me his tummy hurts? Have I tried to get him to walk and he has gone jelly-legged because his legs hurt, or because that is what kids do when they don't want to go somewhere? And now that we are on an extremely high dose of a steroid, the side effects of which looks like this...

...now I don't know what is causing it. Is it normal toddler boundary-pushing or drug-induced homicidal impulses? When eight of the twenty most common side effects are negative emotions and impulses, and so many of the others (pain, headache, irregular heartbeat) can cause such emotions, how can I not give him a pass and just try to ride out the storm and simply offer unconditional comfort instead of discipline? What I do know is, I can't discipline him for acting out when he has so many potential side effects causing his less than awesome behavior, and he barely has the vocabulary to tell me what he wants for early dawn snack, breakfast, second breakfast, elevensies, lunch, afternoon tea, dinner, bedtime snack, and midnight snack, let alone the vocabulary to report the havoc being felt in his little body. Body language is the only language he has right now. So I tell myself that when the nightmare ends, we will just have to sort it all out and unlearn all of the things we have learned. (Kinda like we do every time grandpa leaves.) In spite of the fact that unlearning and relearning takes ten times as long and ten times as much consistancy as learning something the first time. It's a case by case process. What may look like inconsistency is possibly me attempting to consistently give every new challenge the same consideration and tailor a suitable response instead of having a pat reaction. Well. I try, anyway. Some days are more successful than others. 

Healthy food experiences. As if it isn't hard enough managing a fickle toddler palate already, try adding treatments that actually change the flavors of foods from time to time. One day, an apple will have a nice, sweet-tangy flavor. The next, he could very well be biting into an apple expecting the same sweet tangy flavor, only to encounter something best described by adults on various internet cancer boards as a delightful mix of cardboard and chewing on tin foil. Not to mention the sudden unexpected emesis issue. I still occasionally have a problem with hot ham and cheese after it turned on me as a child and came back up. 

Constant pain. Normal kids have "owies". Sick kids have surgical procedures. Needles. Incisions. Bone pain beyond the normal growing pains. Splitting headaches. Stomach cramps that are not just gas, but actual damage to the intestinal tract. Mucositis, which is inflammation and open sores in the mouth and mucus membranes. Constipation or diarrhea, never any in-between. I think the chemo has finally started affecting Daniel's nail beds, loosening and irritating them, because he comes running to me for owie kisses on his fingertips often these days. Pain eats at a person's psyche. Chronic pain is a predictor for clinical depression. Depression should not ever be part of a parent's concern for their small child. 

Lack of socialization. As if kids aren't cruel enough as it is, and as if sick kids don't already feel as though they have simply seen more than their peers will ever understand, and as if this doesnt make them a little weird and hard to relate to in their peers' eyes, they simply can't go to that germ and virus-ridden birthday party, play date, pool party. And once your peers have seen you puke, forget about being the cool kid. (Although cool -or whatever the equivalent is these days- is not something Daniel is old enough for yet, thank goodness). The few times Daniel is able to be around kids, he watches them play. He laughs at them. He follows them and observes. But he never initiates play. It's just not something he has learned how to do, to be a kid among kids. 

I'm sure there are more. The thing is, we will get to leave this time behind us. (Obligatory mental "if" aside.) So many kids don't. It is happening early enough for us, we dont have to deal with missing school or having to explain to him why he can't do things with other kids right now. And there's only so much bodily damage a toddler can cause us during his fits of drug-induced rage. It's all just his normal, as far as he knows. He will be able to be a normal kid by the time he starts school. Nobody will even need to know about this time in his life if he doesn't want them to.

I stated on Daniel's Facebook page early this morning while up at 4:20 with him making quesadilla after quesadilla, only to have chewed-up quesadilla spit back out and another one loudly and tearfully demanded, that I wanted my baby back. I edited it when I woke up this morning to say my "sweet baby", because there are moms everywhere who would give anything to have their babies back, no matter what their baby's moods would be like. The babies who didn't get to emerge from this experience. Every time my optimism slips and I wallow a bit, I have a mental image of the moms who have lost their Daniels all lining up behind me, hands on hips, mouths in disapproving lines, their empty dining room chairs, empty little shoes, and empty toddler beds shouting their pain, and revealing the knife I've twisted in their hearts with my unfortunate choice of words. A knife that undoubtedly twists every time a mom of a living child complains about motherhood. 

The thing is, this experience is not a big deal in the grand scheme of things, as long as we walk away from it. But if we don't, it is the biggest mountain in our lives. It will all be more tragic if he should not survive, if he should relapse. If not, it will all be minimized in the future. Already, the seven months behind us are turning into a blur. It seems, in hindsight, like a stressful few weeks. We don't really remember the agony of diagnosis, of infections and fears of typhlitis, the tummy pain that had him writhing for a week, all the vomiting in the car, the nights of his pulse racing and his body buring up, of weeks of counts being nothing, of being extremely immune compromised. 

I feel this way about the year we spent watching my mom fight for her life after her breast cancer diagnosis. A year? How could it possibly have been a year? Because what I remember is: crying in a parking garage when she called with the news. Coming home to flowers from my husband, because even though I wasnt the sick one, sad is a kind of sick. There was the big family camp-out reunion in the space of time between the diagnosis and the follow up appointment which would tell us things like stage and type. And then nothing, until driving to Houston. No details. Finding a hotel in the middle of the night in Houston. Falling apart when my hotel room door closed behind me. A few minutes of impressions from the clinic. The dress she wore. The other patients. The healthy, sinewy freckled legs beneath a hospital gown, from which protruded a sallow, sunken face and bald head of a young woman, another patient in the oncology clinic. She looked like one of those puzzles in which you mix and match head and body and legs, put together the wrong way. Her strong-looking legs were the wrong ones for her exhausted face. Then there was my mom finally allowing herself a cry in a gazebo, then a traffic jam. Then a few flashes of Shaw Cancer Center. A few first impressions of doctors. A first infusion in the infusion chairs overlooking the valley outside. Her obvious mix of fear, depression, and vulnerability lying alone in the radiation room under the massive, noisy machine, arm up, breast exposed. Her shiny head. Me wanting to tell her to not be self concious and wear her baldness with pride, but not being able to say the words because although her strength was beautiful, the baldness just represented the most obvious physical marker of cancer's ugliness. So although bald may have been beautiful, to me it wasn't. And I couldn't lie about that to her. So I bought her pretty scarves instead. I feel differently about Daniel's bald head. Fiercely proud. But that is because he will survive, obligatory if. I'm not sure I believed it with her. We tend to go back to our last experience when forming our expectations for our next one. Her cancer followed Grandpa's horrible suffering, his two year decline, the tumors that no treatment was effective against, and his death in the hospital bed in his living room in grandma's arms. Daniel's cancer follows my mom's victory. She is the big reason I now know cancer isn't a death sentence. 

There are a few flashes of pre-op huddles, surgery waiting rooms, her surgeon's almost hilariously graphic description of the handfuls of coagulated blood they dug out of her surgery site after it hemorrhaged inside and her shunt could not drain all of the blood. The different mood every time she awoke from anesthesia, tracking her true mental barometer through the process. The physical therapy she did at Shaw that began to solve some of the chronic pain issues she had dealt with her whole life. The fuzzy hair growing back. My disappointment that she wasn't able to spend more time with me, that she always had to go back home to Kansas between treatments. A later surgery for the second elective mastectomy, which I know happened, and remember the consult beforehand, but not really the surgery. Her pain after the tissue expanders were pulled out and permanent implants put in, her feeling betrayed by her doctors having downplayed the pain before the surgery. 

And that is pretty much that entire year (two years, if you count the second mastectomy). And it is all completely subjective. Our memories are reconstructions, not recordings. It was a terrible time, and one nobody wants to revisit, but at the same time, it revealed depths of strength in all of us, especially her. We should have taken more pictures, I should have written more. I wonder if I gave her the encouragement I should have, if I was there for her, if I let her have her moments of victory. Because I just don't remember.

I already feel the same way about the first half of Daniel's treatment. I didn't take pictures. I didn't record emotions. It all felt ugly, and I didn't want to feel it. I wanted to just exist in the future, projecting into a time after it was all over. Some time in the last few months, I have come to embrace this time we are in as part of our story, rather than a departure from it. In doing so, I have had to let in all the ugliness and fear I had barred outside the door for the first half of it, and feel every emotion. I didn't want to have to. 

Bless sweet baby Simone's heart, I believe she was mostly responsible for this. Until she relapsed, all of our encounters with other sick kids at the hospital were just snapshots of "we're fine". She was our first one to go from a holding pattern of "fine" to not fine. I did a lot of processing during that time, because even though she had a higher risk of relapse than Daniel, she made even our smaller risk so much more real. Relapse no longer just happened to pale, sick, already dying kids. It comes out of nowhere just when lives are getting back on track, just two weeks into maintenance, to vibrant, happy, doe-eyed little girls with their whole lives ahead of them and young, friendly, energetic parents. And even then, it was a devastating departure from the plan, but it wasn't going to end. She would get in a T-cell trial. It might be successful. If not, she'd get a bone marrow transplant. There were more things to try. Nobody was having the death conversation.

And then, one night, she just stopped breathing. She didn't fade, she didn't even spiral. She crashed. In two hours. Her mom posted her official cause of death last week, after her autopsy results were in. Acute sepsis. No infection, no bacterial source was found. She was healthy. She was perfect. She was tolerating treatment. And now she is dead.

Which brings us to another absolutely terrifying realization. Simone did not die from cancer. Not technically. She died from sepsis. She will become a statistic for death from sepsis, not necessarily death from cancer. She won't impact the cancer prognosis for other kids with her kind of cancer. No cancer cells were found in her body during her autopsy. The two weeks of treatment she got after her relapse was effective. But with no immunity, her body couldn't fight infection. Bacteria killed her, not cancer. Even though she would still be alive if she hadn't had cancer. 

I have been wondering about this, but I was afraid to ask the question, mostly because I already knew the answer. The statistics count deaths specifically caused by cancer cells affecting the body's functioning. Full stop. If one should, say, develop chemo-induced neuropathy in one's feet leading to a fall down a flight of stairs, guess what. Not cancer. If a brain tumor led to blindness, which led to stepping in front of a moving bus, not cancer. If low blood counts allow an asymptomatic infection to take over one's body to the point it causes massive organ failure with no warning...you get the picture. 

I'm not really spending a lot of time dwelling on this stuff, but I am starting to give it airtime in my brain. My most recent epiphany, though, is the revelation of what is happening here. I am finally moving forward with processing. Look at me, healthy mental processes and all. I'm so proud of my little brain, doing what it is supposed to in spite of also trying to get in it's own way. The trick, I imagine, is to move through this stage without getting stuck here indefinitely. Acceptance, or as I said earlier, embracing this time as part of our story instead of an unpleasant footnote, requires accepting the ugly, the terrifying, the reality of how messy it is, and calling it all beautiful, because it is a part of us now. Seeing my mom's cancer journey as an ugly deviation ended up being okay because she survived it. But had she not, the last several years of her life would not hold many memories for me. Good ones or bad ones. In choosing not to embrace it when it was happening, I've blocked all but a few flashes of memory from my mind. 

I don't want to do that with Daniel's story. I feel as though I somewhat denied my mom the true acknowlegement of what a hero she was. I want my little hero to have every moment. 

Isn't it great when you come through a confusing time, then look back and can see what was happening? I feel this way about the puzzling dreads of the last month or two. I didnt, and don't, want to give into pessimism or fatalistic thinking, but my mind insists on going there. No amount of determination can truly change my mental state. But now, with an inkling of the purpose of the dreads and the effects of having ridden out their storm, they have brought me to a place of more presence. It's hard to explain, but I don't want to forget the badness anymore. I wish I had taken more pictures of fat Daniel, weak Daniel, screaming Daniel, instead of only keeping the rare ones of Daniel smiling through his misery. Because those pictures and memories I chose to keep may eventually become my reconstruction of this time, complete with an "aw, shucks, it wasn't that bad" attitude. And it was bad. It was (hopefully) one of the worse things Daniel will ever experience, and he did it only two years after entering this world, and I don't want to take that away from him. 

Chemo in costume

Hello, and welcome back. It has been a crazy big week or two. There was the trip to Lake Tahoe for the wedding. A total of sixty four hours from leaving our driveway to returning to it, thirty of which were spent on the road. It's all a bit of a blur of brown desert, endless nursery rhymes and songs to entertain babies in carseats, lots and lots of kneeling in the car, hanging the boobs into carseats so I didn't have to take babies out to nurse them, which led to a bit of a backache by the time we got home. But the wedding was fun, if a bit rushed for us. Daniel made an absolutely adorable ring bearer, completely distracted by the little treasure-chest ring box he delivered down the aisle, stopping often because he just couldn't manage to walk and fiddle with the latch at the same time. He looked (and I think he felt) very handsome in his tux. I was honored to be a bridesmaid in such a gorgeous wedding, and for such a wonderful couple. I met Rochelle mountain biking in Summit County, on a Diva's ride. The Mountain Sports Outlet Divas were a bike team I rode with and later raced for, back in my other life. There was an incident involving clipless pedals and a perfectly placed fall connecting her kneecap with sharp broken granite that required a long walk down the hill back to town and a drive to the ER for stitches, and I offered to walk with her as her knee stiffened up too much to pedal, drove her to the hospital, and then, stitches in place, went out for a late dinner in Frisco. This became the beginning of my friendship with Rochelle. Since then, she moved to Portland, met Don, and they have biked across the United States west-east, backpacked through South America, and just this summer, hiked the Pacific Crest Trail from Mexico to Canada, finishing just a month before their wedding. Their trail-conditioned thighs were up for a night of dancing, and so was Daniel...until he suddenly wasn't. One moment he was spinning on the dance floor, dodging the adult's knees, and the next, he was lying in the middle of it going to sleep while wedding guests tried not to step on him. My little man is such a dancing fool. He has all the rhythm and natural moves that I do, which is to say, none...but that doesn't stop him. He tried to pull me onto the dance floor during the couple's first dance, but I managed to keep him pulled back. But as soon as it ended and everyone went to eat, he took my hands and we twirled with the floor all to ourselves. It was a moment. 

We took his batteries dying as our cue and left before the festivities ended, knowing we had limited time to get back home, and drove east until we were both unable to keep our eyes open anymore, five hours to Elko, NV, where we didnt even have the energy to bring the suitcase into the cheap, stinky motel room, but slept in our wedding clothes. Then ten hours home the next day.  We got home Sunday night, dropped into bed and were able to sleep in for a few hours before we had to go to Denver for Daniel's Erwinia shots Monday.

Tuesday we closed on the house, signing the last papers by 4:30 pm, then came home and began moving the big furniture. By late that night, I had helped move couches and beds up and down stairs while carrying an eighteen pound baby on my back and redirecting a sad, whiny toddler, and I was one incredibly tired mama. And B was a tired daddy. But we had enough stuff to spend the night in the new house, and the next day we got more, and we had all but the kitchen moved by the time my parents showed up Wednesday night. Uncle Leroy and Aunt Mary showed up Thursday night for Haloween festivities, this being the first year Daniel was old enough to realize all the fun that could be had. And then, right on cue, I woke up with a scratchy throat Friday morning and Alex woke up snotty and coughing. 

I kept my potentially diseased self home with definitely diseased Alex and helped my parents and Leroy finish cleaning up the old house and moving the last of the kitchen to the new one while Bobby and Mary took Daniel to Denver for his Erwinia shots. I missed Daniel getting to tour the clinic's "Candyland" extravaganza and see all the other wee oncology patients in their halloween costumes, but Daniel apparently had a ball running around in his "man with the yellow hat" costume and Curious George doll, collecting candy and toys. He reconnected with Kaylee the pink unicorn, whom we know from other stays, for an adorable picture...

...and brought home a bag of treasures. 

The next day, Saturday, we reserved for doing fun kid's stuff. Grandma Sandi and Aunt Mary accompanied The Man with the Yellow Hat, his little brother the monkey, and his mama the giant polyester banana to the Gardens at Spring Creek, Ft. Collins' community botanic gardens, where there were lots of kid-friendly activities for Daniel and pretty little corners with fun plants for adults. We got back home in time for a quick break, then it was back into the costumes for trick or treating, which involved me introducing myself to the new neighbors, then going back to our old neighborhood to visit our old neighbors. 

Unfortunately, that was the last fun clinic day. The next two trips to Denver, with Alex still croupy and sick, we had to scurry into the clinic and hide ourselves in a room before we spread any gems, then stay in that room the entire time we were there. Which is usually about two hours, one spent waiting on the doctor to authorize the shots, then for the shots to show up from the pharmacy (at $32,000, I imagine it's fairly important they not send the shots up until all proper protocal has been observed and they are certain they will, in fact, definitely be able to administer them.) We had one more pair of Erwinia shots today, now we get about a month long Erwinia break. 

Now we are back home, having made it back from Denver in time for speech therapy, a whole lot of eating, a little crying, and now a late nap. Both babies fell asleep in the clinic, which made for an adorable picture of my wee angels...

It was a weird day. Daniel seems more wiped out than I have ever seen him. The lack of life in his eyes and his face right now hurts me. He will occasionally have spurts of energy, but he has fallen asleep multiple times today after asking to nurse. Not that I mind the break. I wish he could just do nothing but sleep until these steroids are behind him. He could wake up happy and not have to spend so much time sad and upset.

Daniel has now had his third and final Doxorubicin infusion, which is a big relief to have behind us. This last one has him looking particularly "chemo-ey". There's really no other way to explain the way his face looks. Pale, exhausted, the deep circles under his eyes not bluish, as they would be if he were healthy but tired, but that unhealthy brownish color. I am not sure at what point he will have a follow up echocardiogram to reassure us the doxo left his heart unscathed, but I am assuming that will happen at some point. Not that it does a bit of good at this point. It isn't like we can change anything by knowing. 

His ANC dropped from 6,500 (higher than a normal person's upper end of 5,000 - it often jumps like that when he is fighting a virus, plus apparently steroids can make it jump up as well) to 950 yesterday. 1,500 is the low end of a normal person's. So we are definitely heading into our upcoming month of neutropenia. Just in time for Thanksgiving. If his counts pass, he will start his next round of chemo November 20, which will really knock them back as well as amp up his nausea and probably cause his hair to fall out again. In the meantime, we get two weeks of no trips to Denver. I can't express how lovely this will be after having made that trip six times in two weeks. Even though it is only a little farther than driving from our house in Kansas to Garden City, which is no big deal, it is a much bigger deal when it is in bumper to bumper stop and go traffic. It's exhausting. We have started taking I-25 all the way to Denver more often because when the traffic is moving, it is faster than E-470 by virtue of being six miles closer with minimal road construction. But the traffic is much heavier and accidents happen much more frequently. There's an app for telling us which way to take when we get to the 470 junction and check to see which way is moving more quickly at that point. Regardless, not driving that road for two weeks sounds amazing.

I haven't said anything to his doctors yet, because I'm not sure of what I'm seeing myself, but it seems like after his last two doses of Erwinia, about an hour after his shots as we are leaving the hospital, he has gotten really shaky. Not feverish, just shaky. It has passed fairly quickly, though. We still have one more two week round of it. I just hope we can get through it without starting to develop a reaction. Time will tell...

In the meantime, the 'roid rage...rages. Daniel's is less rage, although there is definitely some of that, but more sadness with fits of agitation. He feels spectacularly sorry for himself one moment, disolving into loud, mournful sobbing over anything and everything, then he rallies and runs around the house slamming into me, Bobby, Alex and Andy, hitting and pushing. There is hardly any in between. His patience is nonexistant, and this is exagerated by the fact that we don't always understand his requests. 

Some of it may just be that he is almost three years old. He has also started to need to control his environment. For himself, by himself. The new house has a small playhouse in the back yard, which he recognized immediately as his. He took possession, filled it with his toys, and has been practicing ownership with it. He decides who is invited in and who is not even allowed to look in it's direction. I've decided to let him have all the control over his little house he wants and respect his wishes. I ask before visiting him, and allow him to tell me yes or no. Mostly no. The other night Aunt Marci was invited in (or at least her face was, while video chatting with him on my phone) but I was escorted right off the premises and back to the kitchen. I wish I had the option to allow him the same autonomy with his own body. Allowing him complete control of the little house is my compromise for him not being able to choose whether or not to allow strangers to touch him, hurt him, examine his body, invade his space. Having a child who is also a cancer patient completely wrecks the lesson that is so important for protecting a child against potential sexual predators- your body is your own. Nobody can touch your body without your permission. You choose when, where, and by whom you may be touched. I have started asking him for hugs and kisses often, just to give him the chance to say no and to observe me honoring his no. I would love it if other family members did the same when with him. If he says yes, it is an incredibly sweet moment. If he says no, it's just him taking control of something he can control, and it reinforces his body autonomy. It's win-win. Not that this is something I spend a lot of time dwelling on, but unfortunately we live in a time and place where we can not control every creep our kids will come into contact with. It can't hurt to be intentional about it.

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...