Classic, if not classy, moments

Hello again from our 7th floor room in the clouds! #3 of four methotrexate infusions this phase (I believe there will be eight total?) is pumping into my baby's little body as I write. The two of them are finally asleep after two hours of fighting. By the time they checked out everything was tragic. Well, Daniel's world becomes tragic when he is exhausted. Alex just gets furious. I've managed to give birth to a little me in that one. Truly terrifying, the way his squeals of excitement can turn to hysterics in the blink of an eye. His emotional barometer is a touchy one. Daniel's seems to mostly depend on how he feels physically. Alex is all about the whim of the moment, it seems. And social interaction. He's unencumbered by the fear of failure, and his favorite pastime is copying the expressions he sees on the faces around him. Our favorite game of late is the "how do we feel" game. I exaggerate an emotional expression on my face and hold it until he copies it, or at least attempts to, then I change it suddenly. This is cause for shrieks and gales of laughter, after which he tries to copy my new expression. His other favorite thing is roughhousing. Being thrown in the air, dropped onto a pillow, dangled upside down, spun around, pulled backward by his feet, suddenly being pretend-dropped. I call him our turbo baby. Everything with that one is just bigger, stronger, faster, louder. At five months, he wants food. Yells and grabs for it when he sees it. It took Daniel ten months to even show interest, and then eating was a studious practice. At five months, Alex wants to stuff his face with abandon, gasping, gagging and sputtering, with me freaking out ready to grab and heimlich him. I suspect he may get teeth much sooner than Daniel, as well. I am fairly inconsistent yet with allowing him to get his hands on "people food". Some days, he seems more ready than others. I did allow him his own piece of watermelon the other day, with wildly enthusiastic results and a little tantrum or two when he dropped it, but this was not actually the norm for what we are doing, food wise, yet. 

We have been enjoying our last few weeks of freedom before flu and RSV season descends upon us. Bobby's dad was out for a week over last weekend, and we went to North Lake Park to ride the train, which, after Labor Day, is now parked for the winter. This coaxed a few giggles out of Daniel. And also cost a little lecture for me, sitting on the platform waiting for Daniel and Bobby to ride the train, from the station master, a member of the Lyon's club in charge of the train. He didn't appreciate that my shirt had the word "Evolution" across the front, and the definition on the back that detailed Keystone Resort's evolution into a fancy schmancy Vail Resorts ski area. I must admit, I had no patience to hear him out. Another day, I might have politely listened, played along to see how far he would take it, but on that day I had a piece of dirt stuck to the backside of my eyelid (ha, yes. I had a mote in my eye), a stream of tears running down my cheek and a red, stinging eyeball, not to mention I was walking the fine line of risk vs reward, allowing my toddler to ride in a train infested by goodness knows what plague with a Labor Day crowd. So when he informed me the word "evolution" was offensive to him, I just laughed breezily and said, "Oh, I know it can be. Don't worry. It's actually referring to the evolution of Keystone ski resort". And reflected, as he probably didn't, on how society polices each other according to our own beliefs and misconceptions and how alienating this can be, how we interact with each other less due to our apathy when we know nothing about each other, and how we tolerate each other more put of empathy when we know each other well, but when we know (or think we know) just enough about each other to snap us out of apathy, but not enough to create empathy, that's when we gain the boldness to try to be each other's moral police. And that I should probably wear that shirt more often as a personal lesson in love and tolerance. Then I wiped the snot from my nose, thanks to my irritated eye, and shifted my focus from possibly well intentioned but obnoxious old man to innocent sick kid with a big grin on a rare day out.

As far as how we all are, tomorrow the sun may rise and with it, new optimism. But right now it is after midnight and I am sitting up, wondering at what point I should even try sleeping, because the tot in the bed is getting 135ml/hour fluids and methotrexate, and a diaper will only hold about 250ml before it starts to leak toxic, florescent lemon-lime tinted pee all over the bed. He just soaked his blankie and Curious George doll that comprise his night-night essentials. Plus, I just gave him his mercaptopurine, changed his clothes and bedding (which meant moving Alex, who was sleeping at the foot of the bed, so it also meant nursing and rocking him back to sleep) so it's best if I stay out of sight as long as possible. Daniel may otherwise awake and demand to nurse, the enzymes in my milk binding his mercaptopurine and allowing it to pass out of him without being absorbed, defeating the purpose. 

I guess I just have the sads tonight. I had the mads earlier, feeling a bit put-upon by the universe, angry about cancer somehow managing to reach into every part of our lives and dictate exactly what we can and cannot do. Mostly cannot. Even as I think these things, let alone write them, I think of people so much more put-upon than we are and feel guilty, but I justify my feelings by feeling mad and sad for them, too. It just sucks. All of it. The words "kid" and "cancer" shouldn't belong in the same sentence. Cancer shouldn't belong in any sentence. Tonight, instead of being grateful we live when we do, with cures for cancers as advanced as they are, I am sad it isn't the future yet, when things are even better. As I am so humbled by the generations of those who sacrificed their lives to be the statistics and data that turned into the treatment we are now getting, I am also a little angry that Daniel is still just a statistic in this massive medical machine.  

I am frustrated by never being able to make plans, and if I make them, never being able to follow through with them. I am frustrated that I am living in a new town, and am unable to mingle with people and make new friends. I am frustrated I can't address Daniel's growing lack of interest in playing with other kids as he becomes more and more isolated and more and more attached to his possessions over his relationships because rrelationshios are literally dangerous for his health. I am frustrated we have to pound the road between Loveland and Denver so often. I'm frustrated by all the early mornings, the fractured sleep, the lack of appetite and unpredictable food preferences, the constant packing and unpacking of the suitcase between trips.

I am frightened by the harshness of the treatments being dumped into Daniel's tiny body. Frightened by the fact that the most intense part of his treatment is ending in five months, because I can no longer trust that his body will do as it should and not suffer the same glitch that created his cancer the first time. Right now, I have the comforting thought that we still have five months to mop up any rogue cells. But at the end, mopping opportunities behind us, I will second guess that we did not do the more intense clinical trial, that sometimes we did not make it a full two hours after mercaptopurine before nursing, I will even second guess the french fries I let him eat because at least he's eating, sure his deplorable diet during treatment will encourage his cancer to come back. 

But mostly, I'm just sad for him and all the children. The helicopter hovering above our window before landing out of sight on the roof above our heads is a novelty for Daniel, but me, all I can think is, someone's baby is on board. Someone's life is shattering into a million fragments of fear and uncertainty right now.

(Next morning, continued after waking... I fell asleep with my forehead on my iPad for a long interrupted night of diaper changing, pee sample collection, vitals and beeping IV pumps.) 

Bobby decided he needed to work during this stay, so he has been in and out. My dad, hearing this, decided I should not try to do clinic and lumbar puncture day by myself, even though I was game to try with Daniel's general anesthesia and Alex's ever increasing needs. So he drove out late Tuesday night, went to bed after midnight, and the whole house was up at 4:30, thanks to Alex waking up completely happy, kicking, squealing, giggling in the dark. I finally got up with him and took him to the living room to play on the floor so Daniel could sleep. Grandpa, who was awakened by the happy noise, got up and offered to hold him while I went back to bed, but no sooner was I back in bed with Daniel than Daniel woke up asking for boo. Which he could not have, due to his procedure scheduled in a few hours, so I suggested he go check the living room, where he was surprised by grandpa who had arrived after he went to sleep. We traded babies, I took Alex to bed where he eventually wore himself out and consented to bring nursed back to sleep for the few remaining minutes left before the alarm rang, and Daniel and Grandpa dozed in the recliner together. Then we got a late start, so we broke the speed limit all the way to Denver, where Grandpa ran Daniel up to the clinic while I parked, unloaded the stroller, installed Alex in it, got my stuff gathered up. As soon as Daniel was awake in the recovery room, we moved into our inpatient room on the oncology floor, grandpa carried up our many blankets, toys, suitcase and potty chair, then left to drive four hours back home just as Bobby arrived, his night shift behind him. Bobby spent the rest of the day playing with Daniel while I entertained Alex, and in the evening we traded off our caregiver duties to allow each of us a two mile walk through the Anschutz/ University Hospital Campus. After a day of being inside with crying babies, my walk under leafy trees in the balmy evening breeze allowed the stress and anger of the day to slide off me, leaving only the actual underlying emotions- just the sads. Which haven't been helped by the fact that this stay's particular monster looks to be nausea. Every time it's been a different monster. The first time, that nasty rash. The second, time. That extra two days we spent waiting to clear. This time, we have vomited three times already this morning, and he's curled in a ball under his blankie, a pale little boy who's given up on trying to be normal or active. 

The big visitor this weekend was Aunt Mary. She arrived Saturday morning on the airport shuttle, surprising Daniel as he walked out the front door to check the status of the neighborhood and the weather. No wonder the kid has to wiggle out of bed first thing in the morning for house and yard patrol. He just never knows who might have showed up during the night or be standing outside his front door with no warning. The two of them were fairly inseparable the next three and a half days, except when Mary was allowed to hold and play with Alex. Which was interrupted more often than not by her being dragged away by a finger to go "see" things, mostly Daniel's toys. It was amazing and relaxing having her there. I just walked out of the house to go buy groceries. Twice. Just walked out. Grabbed my purse, got in my car and left. It felt sinful. We cooked mostly healthy food, relaxed in a dark house during afternoon baby naps, went to the park and library story hour, where I once again felt a little judged by the other parents for my slathering of purell, my not letting him play with the stuffed animals, the purell-ing of the toy train set, and encouraging Daniel to join into the activity songs...from a distance. We even got to sit in a coffee shop long enough to have a cuppa joe before the toddler meltdown chased us out the door. 

All in all, it's been a very blessed week, surrounded by family, enjoying the sweet pleasure of little things- good food, love, happy activities with Daniel that are free but also priceless- hours of drawing and playdough on his little picnic table in the back yard, reading, snuggling, park and play time. But it's always the lovely, normal weeks that reveal the insanity of the crazy times. On my walk last night, when I turned toward the towering glass and brick of Children's Hospital, I wished I didn't have to. The last thing I wanted was to go back inside the building, away from the sounds and scents of lawn sprinkler dampened dusk. 

But now we are back here for a few days, and again already with the troublesome thoughts I ignore most days. The frightening side effects of Daniel's treatment. The sleeping punctuated by being a caregiver. The being a caregiver. The wondering if maybe I'm not doing as well as I or anyone else think I am, maybe I am actually losing my mind, just slowly enough I don't notice it going. Or maybe this isn't even a legitimate hardship, because others have it so much worse. Maybe I'm being a huge baby. Maybe I have it really good, especially compared to other's hardships. Maybe I just can't handle being a grown-up.

^As if I might forget the giant responsibility, right? 

Or maybe it's just the hormones. TMI, I suppose, but we finally gave up on trying to make permanent decisions about our future. Knowing we are not in a good place to decide whether we are done having babies, but also that another pregnancy right now is probably one of the few things that would push us right over the edge, I went on birth control for the first time in over seven years. And almost overnight, have become a raging chocoholic with a bottomless appetite, tearful outbursts and a short temper. Bobby tells me he hasn't seen me this unstable since my first miscarriage. I don't know what to do about this. Insurance just spent $2,300 to have a tiny piece of hormone releasing plastic inserted in the incubator for up to five years to keep anyone from accidentally taking up residence in there, and now, even though it is only a small fraction of the hormones an oral contraceptive would release, hence my decision to go with it, I am suddenly a sad, weepy, raving lunatic. I want it gone. I want myself back. But then I am right back where I was a week and a half ago, with no 99.98% effective, reversible at any time plan in place. Even celibacy is less effective than that. Statistically. Again, with the being an adult with adult problems. I'm so over it. 

It's a lazy day here in the luxury suite. Two of us are passed out, the third is nursing himself into a milk coma, and I am considering joining the siesta. After throwing up the third time this morning, followed by another dose of the Zofran he had thrown up, plus some Zantac followed by a little nap, Daniel climbed out of bed feeling much better and braved a bite of string cheese, so we took to the halls to get a little exercise. He lost no time dragging me and his IV pole to the playroom, where Flashes of Hope, a volunteer photography session for patients and their families happened to be doing hair, makeup, and photography sessions. Thrilled to finally be here on the same day they were, I signed us up and hopped up in the chair to get all prettified while Daniel played. Just in time, Bobby showed up after his night shift to join us for the pictures. By the time they were ready for us, Daniel was looking a little sober...we thought he was just tired, so we started to clown around to coax a smile out of him. Well. We suddenly got something out of him, but it wasn't a smile. It was his string cheese, all over himself and the photographer's drape. After he had heaved into styrofoam cup for a while, perched on the nice black-draped ottoman, he perked up just enough to get some non-crying, if not exactly smiling pictures of him surrounded by his family. I truly feel like they are going to be perfect. Real. Representative of this time in our lives. Bobby with bags under his eyes and hair smashed by his hat, fresh from twelve overnight hours in his truck and trying to not look too annoyed. Me with fresh hair and makeup, determined to make it work and refusing to admit it was a bad idea and that I had lost this round, genuinely laughing at the irony of Daniel's waiting to barf until he could do so with perfect timing. Alex hanging over my arm, almost an afterthought, crusty eyes mesmerized by the pretty camera and the pretty girl behind it, oblivious to all else. And Daniel, cuddled close between us, unamused, pale and exhausted with chunks on his shirt. It's a moment, and I hope they don't edit it too heavily, because as far as moments go, it was pretty much classic.