Fair's fare

Hello! Welcome to the hamster wheel. You think you'll run just a little faster to keep on top of things, but no. Then things just come at you faster. 

At the moment, my mom is visiting for a few days. She is reading to the biggest baby while the smallest one sleeps. This should be the time I clean and get things done, but here I sit. Granted, I am on hold with customer service trying to resolve an issue that I have been needing to deal with for awhile, have taken Alex to his four month checkup, went with my mom on a eight and a half mile bike ride, did a little yoga on the back porch with my mom while Daniel "helped" us...

...went to Ft Collins and bought a bridesmaid's dress twelve sizes too large (long story, short explanation- procrastination) so my mom can help me alter it to fit, and went to a farmers market. Now I have more phone calls to make this afternoon and some house showings to set up. Our preliminary house shopping is a little depressing, realizing how little we can actually afford. One by one, our must-have list has shrunk. Pretty much the only thing that has survived the chopping block at this point is a small patch of grass for the dog to let himself out to use when we are gone. I realize if we were as "farmer" as where we come from, the very continued existence of the dog would be on the chopping block. But for us, an animal family member is a commitment for the life of the animal. It is still important to me to have my boys grow up influenced by the gentleness, the non verbal communication, the unconditional love that is a family dog.

We drove to Greeley to get a feel for few neighborhoods that had promising houses, because Greeley is slightly less expensive than Loveland is, but once we got over there, we felt something was missing. It felt more like Kansas or Nebraska with the smell of feedlots in the air and acres of cornfields, the mountains just a small part of the horizon. We love living here in Loveland's gentle foothills, close to biking and hiking trails, just a skip up into the mountains. Not to mention being only six miles from Ft Collins. If we can manage to find something in Loveland, we would prefer to live here. Even though we could probably find a newer, nicer house for the same money in Greeley. 

I have told B for years that the most important part of a homeownership to me is not necessarily the size or niceness of the interior, but an exterior that invites us outside. A covered porch, a little patch of grass, shade trees, all at a much higher premium in my mind than granite countertops or hardwood floors. The one request I do have for the interior is a kitchen that is not separated from the rest of the house by a wall. I spend so much time in the kitchen that I either want the ability for my family to gather, live, and play in the kitchen, or a kitchen that is just a part of a larger living area where said activities are already happening. Otherwise, I know from experience, the kitchen will be merely a place to let the tuna salad sit out all day as I am engaged with living and parenting in the rooms where my family is. Not the place to spend hours creating healthy meals, then actually cleaning up after. I do not understand why the organic flow of living has to be interupted by mama going into a separate area to cook and do dishes when it seems so simple to put the kitchen in a part of the house where the flow exists to enable easier multitasking.

We are almost done with our two weeks of Erwinia. The shots are painful and Daniel always cries. Worse, they are giving him a fear of needles he didn't have before. Now blood draws and port accesses have become more traumatic as well. His thighs have five distinct bruises each from his five shots in each thigh so far, and after he sits in his car seat on the way home he usually wants to collapse and cry when I lift him out of the car seat. After he has played for awhile, moved around and worked out some of the soreness, he gets happier. Unfortunately, this is only the first of three two-week rounds that have to happen in the next six months. The mechanism of this particular chemo is such a staple of treatment against leukemia, they keep telling us, it is very fortunate we at least have the option of plan B when a life-threatening reaction develops to plan A. An IV version of Erwinia is in the works, but not tested for efficacy to the complete satisfaction of those who approve such things just yet. 

Every time we go into the clinic, Daniel runs around more and gets into more trouble. I remind myself often, as I am chasing him up and down the halls as we wait for an hour after his Erwinia before they will let us leave, that this day seemed light years away back when he did nothing except sit, eat, cry, cry more, eat more, watch movies, eat and cry. Patience with his antics becomes much easier when I remember how I looked forward to this day. And it only takes looking beyond my own self absorbed nose to the hospital around me to see kids who will never run around licking every surface, insist on "helpfully" pushing the stroller, wander into random rooms to say hi to whoever is inside. The "why me's" turn from "why did we deserve to get cancer" to "why do we deserve to be so healthy, in spite of the cancer". This photo is from one of our Erwinia days, killing time in our clinic room. The stethoscope they leave in the room has provided much fun for us on days when it is hard to entertain him with the books and toys we bring from home. 

 

I decided, over the weekend, that we needed a getaway. My hometown's annual county fair was taking place, and remembering how much fun Daniel had last year, I really wanted to see his face light up over the rides again this year. The Leoti fair is a unique one. Years ago, after a traveling carnival cancelled on them, the town decided to try to buy their own. It is an ongoing project of searching for, purchasing, and salvaging rides as other carnivals or amusement parks sell their old ones, local farmers with welders, torches and paint doing what they do, but this small prairie town, population 2,500 or so, now owns their own carnival- rides, games, the whole shebang. The entire town pitches in, volunteers assemble and run the rides and games and food shack for four days in the late July heat, church ladies and volunteers cook and bake to provide food, vendors come out of the woodwork. A rodeo and a big school reunion take place over the same weekend. The fair works to draw Leoti's scattered kids back home from wherever they have settled down after they left for college, jobs and families in cities- the promise of food, friends, family and fun proves irresistible year after year. 

We went to our local lab to determine if Daniel's counts were high enough to expose him to a county fair and he endured a particular ungraceful, vein-blowing poke, the first time he has ever cried over getting his blood drawn (granted, he took one look at the exam table and thought he was getting more Erwinia, which was cause for tears of dread.) His ANC was 1,200, which was great, so we cleaned and packed, and hit the road immediately following our Erwinia shot and Vincristine infusion the next day.

I invited my friend Ginta and her daughter SueJean from Summit County to meet us in Denver and drive four hours east with us. Ginta was crazy enough to trust her housekeeping company (with her help from a distance) to run itself over an extremely busy weekend, dropped everything and came along. We engaged in girl talk and caught up after having spent almost no time together since we left Colorado nearly four years ago. It was a little too hot to genuinely enjoy being at the fair during the day, so we accepted a tag-a-long dinner invitation with my parents for a wonderful meal at a friend's house, cooked by his mother visiting from Mexico. Then, a little miserable while digesting an ethnically diverse belly full, stuffed with lengua and sauce, chicken and sauce, rice and beans, and rice pudding, both traditional mexican style and Indian style, thanks to a couple from India also there, and my mom's mennonite style sweet salad and pie, we made our way to the fair as the sun was setting and the heat was leaving for the day.

In spite of not feeling well after his chemo (neither Vincristine of Erwinia are particularly nauseating, but it seems like they are for him- he had thrown up in the car, again at dinner, and would again all over me in bed at 3am), Daniel did have an amazing time. Grandpa rode rides with him when I was busy. Ginta held Alex while SueJean and I rode my one big-girl ride- I guess I've just lost my stomach for terrifying heights and fast speeds in my old age. Or maybe it was just all the lengua and rice pudding. We shut down the fair that particular day, staying until midnight, baby and toddler bedtimes notwithstanding.

Then we headed fifteen miles into the dark nowhere that is night time in western Kansas, the full moon illuminating beyond our headlights, to the farm we called home the three years we lived in western Kansas. Right now a caretaker is living there, but the arrangement is that he has one bedroom, and the rest of the house, the other four bedrooms, are still free for family use. My boys'  godpapa Leroy showed up in the wee hours after having driven six hours from far eastern Kansas after work for the weekend of fair activities. 

Next morning, we had breakfast at the farm and reconnected with Marvelous Marvels, Marv the farm cat, who we had to leave behind when we moved to Colorado. We killed some time until after naps, then headed for Leoti, spent the rest of the hottest part of the day at Bobby's brother's house with Aunt Marci, plus Uncle Jay and Aunt Wendy, cousins Ariel and Ahna, and Ginta and SueJean. We stayed cool inside, let the cousins play together, and when we got hungry, ran to the fair and brought back an enormous tray of the flavors Leotians associate with the fair- chili potatos, bierocks, pie. The fair menu, basically unchanged year after year, is as much of a tradition as the rides, games, rodeo, school reunion and dance. We couldn't decide between the pecan, apple, cherry, peach or rhubarb pie, so we just bought one of each and had the uneaten portions for breakfast the next morning. Then, again feeling too full to be able to comfortably subject ourselves to spinning rides, as soon as the sun dropped low enough in the sky to provide a little relief from it's harsh rays, we walked to the fair for another evening of giggles. I was the crazy mother there racing around ahead of my toddler with a big tub of antibacterial wipes, wiping down the rides before loading him on them. I was also the crazy mother who's child insisted that she ride with him inside the cab of the tiny truck ride...who attempted to accomodate him. I didn't realize until after I was committed that perhaps they have bigger seats in the backs of the trucks for a reason. But I believe I do win "most ridiculous photo" for the 2015 Leoti fair. (Not that that's a thing.)

I think Daniel may be dealing with a little chemo-induced neuropathy in his feet. He was happy to walk around at the fair, but he fell a lot. And climbing onto rides, lifting his feet up to step over thresholds proved problematic. Now that he is home  I am observing a little foot-slapping, he is a little pidgeon-toed and sometimes walks on the outside edges of his feet. His legs and knees are covered in bruises from his many crashes. He doesn't lift his feet behind his legs when he walks, he lifts his knees up in front of him instead, leaning forward at the hips to compensate. I assume this is to keep his feet in his peripheral vision as he is walking to assure he lifts them high enough to keep from stumbling on the floor or ground. This is probably due to his Vincristine. I've heard the sensation described as thinking you are at the bottom of a flight of steps, and discovering you have one more step left when you try to walk normally. The sensation is delayed enough it feels as though the ground is constantly dropping away under one's feet. 

It is now two days after I started this post. My mom is back home in Kansas. I have simply had no time to write in anything except five minute spurts lately. You might be a mother of young children if you take your ipad to the toilet with you for a few moments of freedom to write as you, ahem, multitask. (And then find yourself thinking, "If only I weren't so regular. I could justify sitting here longer".) 

Right now, while I finish this post, I am allowing back to back Netflix episodes of Daniel Tiger's Neighborhood, an almost sickeningly cute show featuring a lisping little boy tiger and his friends, plus little ditties to help young children through common childhood situations. The modern-day continuation of Mister Roger's Neighborhood. Today's lesson is, "when you feel so mad that you wanna roar, take a deep breath and count to four." Good advice. Although mama usually has to count to forty. If only adults had a four second reset. Bobby got so lonely for his little boy the three days he worked nonstop and we went to Kansas, he sheepishly admitted that he had actually watched Daniel Tiger's Neighborhood all by himself in his truck, sitting at a wellsite in Wyoming, just to feel a little more connected. One might have finally embraced the constant barrage of juvenility that is parenthood when...? Actually, Netflix time is a particularly sacred time for Bobby and Daniel. Daniel rarely gets to watch anything when he is home with me, but when B gets home exhausted and want to do nothing but sit in the chair and cuddle with his boys, all of my rules fly out the window. The other day, Daniel stumbled off, bored, to play with his toys halfway through a Curious George episode and Bobby and I suddenly realized he was gone about ten minutes later- we were too emotionally invested in George's latest misadventure to notice his absense. These are the things that make us wonder if we are actually losing our minds. 

It has been a little boring now that Grandma is gone. We did have so much fun with her. Hours of playing, leading her around by her finger, showing her our toys, sitting in her lap as she read, and even a trip to the splash park and playground, where we ran through the spraying water, climbed on rocks, and spun around (or spun grandma) on various spinning devices. Mom, with her constant preoccupation with baby Alex's needs, is so unexciting by comparison.

We are almost finished with our two months of Consolidation. We would be done right now, had we not had the reaction that necessitated an extra two weeks of shots. We are doing no treatments this week except the Erwinia. But Friday, we get bloodwork to see if Daniel will pass to start the next phase, Interim Maintenance, Monday. We are scheduled to check into clinic at 9am Monday for a lumbar puncture with general anesthesia with propofol, which does not block pain receptors, but does make them sleep and forget what they have experienced. As he is receiving his intrathecal (spinal) methotrexate, they will also start fluids in preparation for his high dose IV methotrexate. Within six hours of recieving his spinal methotrexate, he has to start his IV methotrexate, but he has to be well hydrated beforehand. Which, since he cannot eat or drink before his procedure, he will go in a bit dehydrated, so it will take most of those six hours to push enough fluids to start the IV chemo. At which point a room on the seven west inpatient floor should be available for us to check in to for the next few days. Forty two hours after they start his methotrexate infusion drip at 10ml/hr, they will stop it and start leukovorin, a drug that reverses the effect of methotrexate. I don't remember how long the leukovorin actually runs for, I think until all traces of methotrexate are cleared from his body. We cannot leave until the traces of it are not there anymore, either in blood or urine, I'm unclear which. They monitor him and as soon as he tests clear, we can go home. This will be three or four days, most likely. Three or four days of being tethered to an IV pole. Superfun. This will be repeated every two weeks for the next two months. 

Our road map for the next two months looks like this: 

Days 1-56- Mercaptopurine orally every night on a empty stomach (I actually dread this more than four inpatient stays. It has been so lovely catching up on sleep after the figt of our last two weeks of MP every night. Breastfeeding and having to take drugs on a nighttime empty stomach just don't mix well.)

Day 1- 

Vincristine

Lumbar puncture with IT methotrexate

Start high dose IV methotrexate

Day 2- continue high dose Methotrexate

Day 3- start Leukovorin and monitor until Methotrexate clears- could take longer than one day.

Day 15-

Vincristine

Start high dose Methotrexate

Day 16- continue high dose Methotrexate

Day 17- start Leukovorin and monitor

Day 29- 

Vincristine

Lumbar puncture with IT Methotrexate

Start high dose IV Methotrexate

Day 30- continue high dose Methotrexate

Day 31- start Leukovorin and monitor

Day 43- 

Vincristine

Start high dose Methotrexate

Day 44- continue high dose Methotrexate

Day 45- start Leukovorin and monitor

Day 64- if counts pass, start next two month phase (Delayed intensification)

This is what our entire treatment plan looks like:

Induction- 1 month. This was our first month, that horrible month of steroids, and the month in which the biggest changes happened for Daniel. He gained seven pounds on his 27 pound body, became practically homicidal, and also had his cancer knocked back from the cancerous cells comprising over 85 percent of his bone marrow to being around .6 percent. 

Consolidation- 2 months. This would have only been one month, had we had fewer cancer cells left in his bone marrow after induction. I am unclear on if each phase after this would have been one month and became two months when we became high-risk, or if they would have been two months even on a low-risk protocal. 

Interim Maintenance I, 2 months.

Delayed intensification, 2 months.

Interim Maintenance II, 2 months.

Maintenance, 3 years.

Indication for vindication

Hello, dear ones, and welcome back. What a week it's been! I do feel like I must be slowly chipping away at the sleep deficit. B worked several shifts that ended about midnight, which meant he didn't show up right at bedtime and completely derail it. Not that he means to, but it is so exciting when Daddy gets home. And not just for the little boy who waits all day to play with him. Evening playtime is as exciting for the daddy who just got home. Several evenings this week Daniel and his dad have been outside in the dark, several hours past bedtime, running through the sprinkler, because B got home just as Daniel was about to lose the fight and breathed new life into Daniel's campaign against bedtime. And then Bobby's hours got switched around, and he started leaving for work in the wee hours, which meant suddenly we all had to try to go to bed extremely early. This constant change in routine is not exactly how a two year old operates. Finally, in desperation late the other night, when Daniel kept dragging me into the back yard to play and Alex would not stop crying, I threw Alex onto my chest in the carrier, then dug the tent out of the garage and set it up in the yard in the dark. Then, enlisting Daniel's "help", trying to be quiet so we didn't wake Daddy on the other side of the open bedroom window, we filled it with blankets and books and lay inside it reading by headlamp until Daniel began to get drowsy. This wasn't exactly as idyllic as it sounds because Alex was not even close to sleeping either, and must've had a tummy ache, because no amount of nursing, bouncing, singing or reading would shut him up. Finally, as I read book after book to Daniel, with him holding the book and turning the pages, I found the sweet spot for Alex- on top of me on his tummy as I lay on my back, my hips flexed up so that my butt was lifted off the ground, bouncing him off of my hipbone. Think yoga. Bridge pose. With a bit of a twist so that one hip was higher than the other to provide the perfect twisting motion. It was as uncomfortable as it sounds, not to mention a genuine cardio workout. But it did the trick after about fifteen minutes- his head dropped onto my sweaty chest and he was asleep. I ever-so-carefully rolled his fifteen pounds off of me, then curled up with Daniel and read Dr Seuss and nursed him until he was also asleep. And set my timer for two hours so I would wake up to give Daniel his 6MP, the oral chemo he has been taking, and has to take at night on an empty stomach. 

I somehow got the 6MP into him without waking him too much, and we all awoke early the next morning to chilly fog, our hair and blankets damp. But that night reset us. Because of our restless night in the backyard, Daniel napped at noon instead of 4 pm, then was ready for bed by 9:30 that night. Which meant I could stay up until 11:30 to give him his 6MP, then stay up until he fell asleep again without nursing, then go to bed myself and not be yanked out of oblivion by the timer, or worse, forget to set it. We are going on three days of this sleep-friendly new cycle. Hopefully Bobby's schedule will keep supporting it. Although last night, he got home about twenty minutes after I had given Daniel his 6MP, and when he leaned over his crib rail and kissed him, Daniel woke up and immediately began demanding boo, and no amount of boo-less cuddling would comfort him, so daddy had to hold him on his boo-less chest and rock him back to sleep. That's what Daddy gets for thinking he can sneak those midnight kisses.

In Bobby's long absences lately, I have been working on weaning Daniel off of media. We overlooked his media obsession when he was not able to walk, but now that he is walking I am feeling the need to address it. This has led to me being particularly ready for an early bedtime after having spent all day engaging in actual parenting. Turns out, it is genuinely hard work being a real parent. We have built train tracks. Ridden strider bike. Taken a half hour to do chores that would normally take me five minutes, thanks to me "needing help". Read so much Dr. Seuss I am getting genuinely good at steamrolling through the longest of most nonsensical and grammatically challenging words. Got so tired of reading certain rhyming childrens books I made up tunes and sang them to him instead. Fueled my own media addiction by listening to podcasts through my earphones while playing trains, building lego towers, walking down the sidewalk with him as he shuffled along on his balance bike. We have 48 media free hours down, other than a movie on the road today as we drove to and from the hospital. It has been hard to not rely on any sort of go-to babysitting device to distract him from wanting to maul me for boo as I deal with little brother's frequent wailing spells as Alex discovers he is about to be left to starve and be carried off by jackals, and loudly reminds us of his presence to thwart the eminent  abandonment. And then nurses with the frantic desperation of a baby who has suffered a close call with being forgotten behind a bush somewhere and very nearly wasted away completely. (This state of starvation and abandonment is fairly obvious by how gaunt he is these days, don'tcha think?)

(I know, baby about to fall out of swing. I took this pic to illustrate the importance of strapping him in when it must be used. He's all but grown out of it, but it's such a handy thing to keep him from getting stepped on by the dog.) 

I have had to accept that tandem nursing is unavoidable and try to find somewhere to go in my mind as I am tandem nursing, since, with the stuffy noses, Daniel's latch has changed so much the nursing aversions I felt during pregnancy are back. 

Nursing aversions. They are hard to explain to someone who hasn't felt them. When nursing works, it works. You can sit there with both nipples in little mouths and let the oxytocin wave wash over you, relax, feel all the feels of maternal love and warmth and closeness, and you dont even feel the actual nursing. Just the comforting weight of two contented little bodies melting into yours. But then. Sometimes, it simply doesn't work. Something changes in your hormones, or in their latch, or maybe you are just touched out and feel like you can't handle being touched by another living creature for one more second. And then anything on your nipples feels just...awful. Wrong. Crawl out of your skin wrong. Nails on a chalkboard wrong. Rip off your face and chew on it wrong. You feel violated. All you can think about is getting them off of you, but your commitment to the greater good keeps you there gritting your teeth, counting the seconds until it is over. And then the little humans who depend on you for every calorie, every vitamin, every mineral their bodies need to grow get stuffy noses and can't breathe and nurse at the same time. So they latch sloppily, suck frantically, let go, gasp, accidentally bite, and at last, as they are drifting off, lie there with nipples lightly held between their teeth, and horror of all nursing aversion horrors, flutter and flick their tongues in vague attempts at sucking. Nothing makes the skin crawl like nipple flicking. Sorry, you who didn't think you needed to be educated on what a nursing aversion feels like. And have somehow blocked the fact that nursing involves nipples. 

This, of course, has come with impeccable timing, his cytarabine giving him round the clock nausea at the same time this so-far two week virus has made it impossible for him to taste food. He has eaten about a dozen bites of solid food all week. The rest has all been breastmilk, which is a fortunate side benefit of the comfort nursing he wants to do when he feels yucky- he accidentally ends up eating and drinking. And it is so easily digestible he rarely throws it up, unlike any of the solid food he has tried to eat all week. The hours spent transferring what must amount to quarts if not gallons of breastmilk from my body to his the last two weeks makes me want to cry a little over my lost sanity. But it was worth it this morning when both of the doctors who saw him commented immediately on how well-nourished he looks for this stage in his treatment. I needed to hear that. 

We officially gave up on vacationing in our near future this week and sold our camper. Bobby's cousin Wendell needed a place to stay this summer in the Grand Junction area, and we decided we needed money for our upcoming stab at homeownership worse than we needed to get away. It still made us sad to see it go, and sparked a lot of nostalgia over our glorious summer in it exactly a year ago, all the woodsmoke scented dusks, starlit nights filled with the music of Slate Creek, days remembered in flashes of violent color- wildflowers exploding against handlebars, daggers of sunlight and white aspen trunks, startled deer and squirrels jumping from the trails in front of our mountain bikes. We had some of the best times of our lives in that camper. As Bobby so artlessly informed Wendell, a little too good of times, given our uncertain future at that point, between jobs and homes, since Alex was born exactly eight and a half months later. (Not that we'd trade him in- we're pretty happy, in hindsight, that we got a little careless during our summer of fun.) And having so helpfully provided him with that visual to enter his mind uninvited when he is relaxing in that same camper, we sent him on his way. 

Which beings us to today. Our appointment for chemo was at 10:30, and the zoo opens for members at 8:30, so we hit the road by 7:30 and spent an hour and a half before our appointment wondering under the leafy canopies enjoying the cool early morning and the deserted zoo before the general public began pouring in. Most of the animals were still in bed, but we weren't necessarily there for the animals. We were there to spend time together. Bobby was out of hours for the week and had to take a mandatory twenty four hours off today, as luck would have it, so he was able to go down with us. It felt like a little slice of the vacation we aren't going to take. Daniel was happy, Alex slept in the carrier on my chest, Bobby and I were able to visit and gossip like we haven't had time or energy to do in a long time. 

And then on to Children's, where our infusion room was all set up. I was feeling nervous about this particular chemo, PEG-asparaginase, because it is the one Daniel has had borderline reactions to before. I have felt a little bit frustrated over this, because I feel like I have wasted so much breath trying to tell everyone the weirdness he has experienced before when receiving it. The first time, the first week after his diagnosis, he got very shaky and his skin turned a bit of a mottled purple color, but when I mentioned this to the nurse, she looked at me a little strange, humored me by looking at his color with me, brushed it off with an "if you say so" sort of attitude, and told me to hit the call light if he started to swell up, itch, or cough. Which he did not. He finished his two hour infusion, and within fifteen minutes was back to his normal pale color and lying comfortably, no longer clenched and shaky. So I dropped it. Forgot about it until he had the exact response, but more pronounced and with fever and vomiting, to his second dose a month later. This time we were in the clinic instead of inpatient, and it did concern them enough they stood beside him with their anaphylaxis kit, lest he start to react in a life threatening way. They then ordered a blood test later in the week to determine if he had developed antibodies to this chemo, but they also drew blood cultures, which came back positive, so they blamed his reaction on having a bacterial infection, started him on a whole lot of nasty antibiotics, and cancelled the test for antibodies. 

I dreaded this infusion all week, fearing that this would be a worse reaction,  but trying not to freak out since I was the only one who thought his first "reaction" was anything to even mention and that his second one mirrored the first, infection notwithstanding. 

Dr Alpert showed up just as they were starting it, bearing a gift bag from Christina and Lisa. Daniel pulled out fistfulls of tissue paper, discovering inside a Curious George tee shirt, a Curious George doll, and a hardcover book, the complete Curious George collection. Plus audio stories. He got a big grin when we put the shirt on him, and we read him a little from the book while he held the doll, quite pleased with himself. Then Dr. Daniel, his oncology fellow and fellow name bearer, came in and Curious George was momentarily forgotten as the two of them raced cars across the bed while the Dr. Daniel assessed him. And then, just like that, the drugs kicked in and almost mid-giggle, he began to cry instead. He hid his face against Bobby's chest and began to clench and shake a bit. Then he began to grab at his mouth. I caught a glimpse of his top lip through his fingers and it looked...funny. I pulled his hands away from his face, and sure enough, it was puffy. I told his doctor this, and in the time it took to confirm we weren't seeing things, his lips had nearly doubled in size. He began coughing. The next time I looked at his face, his lips had doubled again, his cheeks were swelling upward under his eyes, and were covered in hives. At Dr Alpert's suggestion, I tried to get him to open his mouth to see if his tongue was swelling, and as far as He would let me see, it wasn't. Dr. Daniel quickly clamped off the bag of PEG, so the pump started beeping, which brought the nurse who then realized he was reacting and spun around to get drugs to stop the reaction. In the meantime, his O2 sat dropped into the low 80's and his pulse shot up, the swelling reached his jaws and chin, and his fingers becan to swell, his hands covered in hives. I vaguely caught on that something was wrong and they couldnt get into the med room, or something... but they had emergency bags... I'm not really sure what the story was there, but apparently there was a bit of stress outside our room as well, when they could not access some of the items needed. Suddenly the closet-sized infusion room was filled with about eight people and a crash cart. And then someone pushed benedryl and cortisone through his IV, and only moments after the benedryl entered his bloodstream, he fell asleep. Which I was not expecting. Suddenly he was no longer crying, but limp in my arms. I had a tiny private freakout that I'm sure lasted longer in my mind than in reality, poked his cheek, which made his eyes flutter. Ok. Good. Still conscious. I poked it again. Less flutter. I may have looked a little wild-eyed and was opening my mouth, trying to formulate the question when the nurse said, "Aaand he'll be getting really sleepy now from the benedryl." Oooh, right. Benadryl. Sleepy. Whew. Down, adrenaline. I always forget how much faster IV meds take effect, especially ones pushed quickly.

Slowly the hives smoothed out, his cheeks began to shrink, then his lower lip. His upper lip was still fat, but by the time I am writing this it is only a little bigger than normal. Our room cleared out until only our nurse was still there, and after observing him for two hours, she administered his Vincristine, the second chemo he was scheduled for, de-accessed his port and let us leave, with a prescription for benedryl for the next 24 hours and instructions to monitor for swelling at home. We let him sleep for a little while and watched as the swelling continued to leave his face before heading home. 

It could have been worse. Obviously allergic reactions can range in severity from minor itching to major airway obstruction and possiblly even organ failure. We had a mid-level reaction. For this we are thankful. Even though we coulda lived without any reaction at all... And I guess I do feel a tiny bit less crazy about freaking out over earlier, smaller reactions. Maybe I even feel a little bit vindicated. Not that I wanted vindication badly enough to have him be completely miserable for hours. 

Tonight we are back to mama sitting up, awake and watching over sleeping babes, watching tiny faces as they dream, placing my hand gently on tiny chests as they rise and fall and marveling over the little heartbeats that are always there. If there is a delayed reaction, I won't see if happening if I am asleep. He is due for more benedryl at 1 am. After that, if all is quiet and his face is still it's own familiar shape, I will take them both to bed with me and sleep curled around them, lest anything try to take them from me. Times like these, I feel a little like a mama mouse with a nest of tiny, pink helpless pups. It's not like I can protect them, not truly, since I'm far from the biggest thing around. But I can pretend fiercely.

Obviously, he will no longer be able to take PEG-asparaginase. This leaves us with it's less ideal cousin Erwinia asparaginase, which must be given in six intramuscular doses over the next two weeks. Each dose means a trip to the hospital and two shots, one in each thigh, which apparently burns badly when administered, then observation for an hour to monitor for reaction. 

According to my quickie internet education on the role PEG-asparaginase plays in the treatment of leukemia (my grasp of chemistry and microbiology is admittedly laughable), asparaginase is an enzyme extracted from various types of bacteria that breaks down the non-essential amino acid asparagine, which is something normal cells produce on their own, but leukemic cells do not and need to draw from circulation in the body to thrive. Depriving these cells of asparagine starves them. Or something. This asparaginase is most commonly extracted from E.Coli, and attached at a molecular level to polyethylene glycol, or PEG, basically a big sugar molecule (I think? Ha! Me and chemistry. I know. It's like wading through a swamp in the dark, trying to gain understanding of these mechanisms with no basic existing grasp of the concepts behind them) that extends it's "plasma half life", causing it to release slowly and making a smaller dose more effective. But since Daniel has now developed antibodies to the asparaginase extracted from E.Coli, they have to use asparaginase extracted from a different bacteria- erwinia chrysanthemi. Since it is not as long lasting or slow-releasing in the body, instead of a single IV dose metabolising, releasing, whatever, over the course of two weeks as PEG does, it has to be continuously administered intramuscularly over the course of the same two weeks. The internet also told me given his allergy to PEG-asparaginase, he has a 33% chance of having a reaction to Erwinia asparaginase. Crossing our fingers. 

We go in on Mondays, Wednesdays and Fridays the next two weeks for these burning shots. They said putting a thick layer numbing cream on his thighs and covering it with plastic wrap to hold it in place will help a little. Not entirely, since the intramuscular injections will be deeper than the numbing cream can penetrate, but a little. I trying to ignore the fact that we will be driving 720 miles of I25 over the course of the next two weeks. One of my kids is a good carseat rider. The other is pretty sure the jackals know where to find him and the carseat is a good place to be abandoned to the ravages of starvation.

Asleep at the wheel

Hell and welcome. Ha! That was a typo. I think I'll leave it. It is too fitting to fix. 

I know there have been times when we have been contagious, leaving little droplet bombs of sickness in our wake, and it has been unavoidable that we have had to leave the house. At least for groceries, lest our recovery food consist of stale fritos and pickle relish. But if I find the person who left behind this virus we all have, because they HAD to go to Smashburger or Caribou Coffee the ONE day we decided maybe we could try to be normal, as normal as you can be while carrying a big yellow dispenser of antibacterial wipes and wiping down every surface your child might touch, I'll...well. I'll slay them with vicious rhetoric. 

That fever that developed while I was writing my last post while also sort of parenting wasn't bacterial, thank goodness. It was viral. Which meant Daniel didnt need yet more antibiotics, but it also meant we all got the crud. So I guess what I am saying is, for the first time since he got sick, the rest of us actually felt almost as sick as he did. I say almost, because he was also on daily at-home shots of cytarabine, his most nauseating chemo, during this time. I'm afraid we all failed to maintain the Daniel Standard of Stoicism, except, of course, Daniel. Which reminded us again of how hard it is to function when you feel so yucky, and how well he does. We think it is tragically funny, almost, the way he eats with food in one hand and his just-in-case tupperware in the other, lest his food hit reverse once it's swallowed. Not funny exactly, just...he's so responsible. And in spite of the fact that his tummy is churning and he is miserable, it is delightful to watch his many processes.

The Virus did land us in the hospital for a night last weekend. My parents were already on their way up, so they just kept driving in spite of the changed plans. After having discussed it with the oncology fellow on call at Children's, I decided to take him only as far as the Children's Hospital North Campus, their satelite ER intake and urgent care about thirty miles closer than the main campus in Aurora. 

Bobby was working, as he has been almost every day for the last three weeks. A tangential update on this situation: some local work has been located, but apparently the only reason the job was secured for Bobby's employer is that it was bid very low, which, among other things, translates to no detention pay- the hourly wage the drivers used to make for sitting at a wellsite indefinitely. When we started this job, they were paying drivers to be on call (if they sat longer than 24 hours), they were paying them a percentage of the truck's earnings, and they were paying them for every hour (except the first one) that they sat at a well. Which meant the only time they weren't potentially making money was when they were taking mandatory off-duty time. By now, with all of the pay cuts, the only time they are making money is when they are in a rolling truck. A truck that they cannot control when it is time to roll. A few times this week, drivers have been sitting ten hours at a wellsite while delivering a load. This translates to a lower hourly wage than the kid tearing your tickets at the movie theater or squeezing mayo on your drive-through hamburger. Which is not a good deal for a driver, because every mile on the road is a hazard, and if he should happen to be in an accident, this goes on his permanent record as a commercial driver, which would affect future hiring eligibility. Not worth it for minumum wage. 

It turned out, taking the little sickie to the north campus was not a time saver. They had to send his blood via courier to the main campus in Aurora anyway. Then we had to wait while their lab analyzed it. Then wait while the doctor at the north campus conferred with the oncologist at the main campus. Then, finally, when they decided to admit us because, in spite of his fluids, his heart rate was still high and his fever was not subsiding, they would not allow us to transport him ourselves, they had to provide transport. On a normal day, riding in an ambulance would have been terribly exciting. As it was, he was tired and frightened. He was buckled into his carseat which was strapped to a stretcher facing backwards, and the only place for me to sit was the little rumble seat behind the driver. I thought I needed to ride along to offer comfort, but the comfort part turned out to be completely impossible, given that my view consisted of this:

Finally, in what felt like a stroke of genius at that late hour, I fished out my phone and gave it to him, and the hitherto uncontrollable sobbing stopped when he discovered he could watch videos of himself on happier days driving his firetruck, wading in the river, riding his trike. Encouraging narcisism? Probably. Yet another thing we'll have to deal with later, when we are no longer trying to problem solve in the moment.

Seven hours after having arrived at north campus, we were finally led to our luxury suite on the oncology floor at Children's hospital. But not before my parents also arrived at north campus, just a mile out of their way, and rescued me from a near coma by bringing fast food and milkshakes, and my mom held sleeping Alex (yeah, help always arrives about ten minutes AFTER the baby who has been screaming for hours calms down, allowing you to finally pay legitimate attention to the actually sick toddler, who has been quietly sobbing this whole time and having to accept you rubbing your knee against him as your best attempt at maternal comfort). My dad held Daniel, watching Youtube videos with him, and I suddenly sat there all out of a job. Except to inhale french fries and a cookies'n'cream milkshake at a  dangerous speed.

My dad drove my vehicle to the hospital in Aurora and spent the night with us there, and the next day as well, while my mom organized the chaos that was my kitchen cabinets and diaper changing station, did laundry and straightened my house. By late afternoon, it was becoming very obvious that what Daniel had was a virus, not an infection. They were as anxious to shuffle us out of 7 east, the highly immunocompromised bone marrow transplant unit, as we were to leave. (They had put us on the east side because west was more full, and there was better nurse coverage on that side when we were admitted.) We weren't put on isolation until the next morning, so all of our night nurses were not taking contact precautions. I really, really hope that we were not responsible for some poor kid recovering from a bone marrow transplant getting this truly nasty crud we all now have.

Unfortunately for Alex, he is the only one with a small enough windpipe that the swelling that has caused us all to sound a little like a family of Batmans (Batmen?) has also threatened his breathing. Last night he finally got bad enough I felt like I had to sit up with him, making sure his airway didnt constrict completely, holding him upright in the bathroom with the hot shower plus a humidifier on, rubbing Baby Vicks on his chest and back, doing everything I could to keep the swelling down enough I didn't have to incure an ER charge on this month's medical bill. Daniel and I have met our deductibles, Alex and Bobby have not. Finally, about three am he started breathing easier, so I took him to bed and immediately fell asleep, but was awakened again at four by wheezing and gasping as he realized he couldnt breathe deeply enough to cry effectively, so back out of bed for more rocking and sushing until he calmed down enough the air supply again met the demand. And back to bed about five. And woke up at five thirty to a particularly cute but menacing toddler Batman demanding "Boo? Peeease?" In a deep, raspy voice. And then the tiny one woke up with a nose miraculously also clear enough to nurse, so I resorted to tandem nursing, which demands my arm muscles to hold them both on top of me, a total of forty five pounds of squirming, sweating, wheezing, gasping, biting little blessings, and I kept falling asleep and letting them roll off...which woke me up pretty effectively, actually, because it wasn't like either of them was considerate enough to unlatch on their way down. They were both back asleep by six thirty, so I peeled off my milk- and snot-soaked clothes, covered the apparently all-night, all you can eat buffet with a pair of tiny footie jammies I found in the covers, lest anyone wake up and think it was open for business, as if strategically placed footie jammies could actually stop the milk zombies, and all but died until nine. At which point I awoke, and rubbing my blurry eyes, stumbled down the hallway to find my phone and call the clinic to see if they could see Alex. I kept him alive all night, thank you. Daytime, drugs please.

Not one clinic had one space open, so I threw us on the mercy of Urgent Care, who usually won't see babies under six months, and they agreed to at least asses inTriage and "probably" refer us to the ER. And what d'ya know, by the time we got there, he was alert, smiling, not blue around the gills at all, and had a great O2 sat. So they gave us what I was there for without sending us to the ER, a listen to his lungs and a prescription for albuterol, and sent us on our way. As soon as we got home, he was back to sounding croupy and freaking out when the air wasn't there to cry with, but hey. We now have breathing treatments to try in addition to our home tricks for tonight. 

4/18: ...at which point Alex, the only boy still awake, fell asleep, so I decided to try to nap. 

Next day.

Last night was a cooler one outside, which worked in my favor. I got Daniel asleep at eleven pm, cleaned house until one am since Alex was not interested in sleeping anywhere except in his swing, and at one, gave Daniel his oral chemo, Alex his breathing treatment, and took him to bed. Where he lay gasping, barking, and snorting for the next two hours as I tried to prop him up on me, lay him on his tummy, on his side, anything to help him relax enough to sleep so I didn't have to get back up. I finally gave up, carried him outside and sat on the back patio with him in the cool air, the neighbor's sprinklers even adding some humidity to sooth his inflammed airway until he calmed down. Which lasted until I tried to put him back in bed. So I sat up with him until about five, trying different positions, before I finally relented on my personal rule of never allowing him to be in the swing if I am asleep and unable to monitor him. I moved his swing into the open patio door so he could breathe the soothing cold night air, bundled him up in his cozy fleece hooded jammies so only his face was exposed to the cold, laid myself down on the floor under the swing, and checked out. As did he, finally able to breathe easily enough to stop fighting as the sky was beginning to lighten to gray. Daniel awoke and discovered he had the entire bedroom to himself at seven, so he immediately crawled out of bed and came to find us, snuggled under my throw blanket with me on the floor and shared my Pillow Pet doggy pillow, and we all woke up again at nine, this time for good.

And now it is almost six pm, Bobby is home sleeping, and this whole house is a darkened, peaceful napatorium. Except me. For some insane reason, I can only fall asleep when it is somewhat necessary that I stay awake. Like while holding and reading to two little snotmeisters who refuse to sleep. Or in the middle of sentences while talking on the phone. Or leaning on my shopping cart while waiting to pay for my groceries. (Speaking of which, c'mon. It's 2015 in a safety-obsessed society. They should be putting parking brakes on shopping carts by now. We aren't all horses who can sleep totally unsupported when the darned things roll out from under us.) When everyone else sleeps, apparently the fact that my brain can now get reacquainted with it's own space gets it all giddy and it fights napping as hard as my two year old just did for four hours straight. This is also why it never works for people to watch my offspring so I can nap. As soon as my brain hears the word nap and discovers it is now a real possibility instead of just a vague longed-for dream, it becomes a kid on Mountain Dew, while also breaking into spontaneous song over finally being able to legitimately mull over stuff uninterrupted. And defiant. If I should suggest that it do something, like perhaps engage in a little REM cycle funtime, it runs off to do the exact opposite. Before my exhausted body quite comprehends what is happening to it, it is being used against it's will to raid the fridge, check Facebook and binge watch Netflix. And it's not like I haven't tried. I've tried controlled breathing and meditation techniques, calming music, even tried inducing a sugar crash to coincide with naptime. That went well. (Not.) Perhaps it was the method of induction- a 44 ounce blue coconut slushie. Had a coupon, hadn't had anything so artificial in years, but got all fixated because I was incredibly thirsty after a hot morning at the park. Chugged it so fast I got brain freeze like eight different times. Then I had gastrointestinal distress for three days, not to mention my breastmilk had a green tinge to it. Don't worry- I checked my kids that night to make sure they weren't glowing in the dark. The upside- I want to throw up in my mouth a little at the thought of a slushie of any flavor ever since. Funny, that's the same way I feel about pretty much any distilled alcohol, due to a few incidents that are best left where they occured- in the past. 

So this has been one of those weeks. Mama never said there'd be days like this, either because she has blocked them from her own memory or because she knew you'd never make her any grandkids if you knew.

In the meantime, we are trying to play tetris with our Order of Life Events. We now know that we have a big, fairly unyeilding leash that is Children's Hospital for the next almost four years, so at least the question of if we should go back to Western Kansas with our tails between our legs and keep doing some version of what wasn't working for us before, while hoping for a different result, has been answered. We know that whatever our future looks like, we can be reasonably sure it will happen in the Front Range. This leaves our biggest obstacle- finding one income that can support a family of four with a stay at home mom, or less ideally, two lower incomes still high enough to support daycare. But there are more pieces to the puzzle, which is the reason we have yet to start turning over every stone looking for work. We need to find a better housing solution, because by the end of our lease in November we will have given over $17,000 to the person who owns the 1,075 square feet of house we rent. We could not-quite cut that in half with a mortgage, in exchange for a longer commitment to this area. Granted, this unstable time in our life is so not the ideal time to add a long-term financial commitment. But if we switch jobs right now, a mortgage company will not look favorably on us having so little employment history, thanks to us having been self-employed all those years and having switched jobs in October, let alone having just switched jobs again. We will look like an obvious flight risk. This is if we can even get a mortgage- we don't have a lot of savings for a down payment and don't have a really great way to prove we won't default on our loan, but if we can get lucky and find someone crazy enough to approve us, and we find a cheap enough fixer-upper and then don't fix'er up for a few years, we could get our expenses back under control. The fact that we are paying so much more each month to our landlord than we would to a lien holder makes this a classic case of being forced to rob Peter to pay Paul.

I know it isn't exactly socially okay to candidly discuss one's finances. And some might read this as us fishing for handouts or at least for a resounding "poor you." Heavens, no. This is just life. It's beautiful and exciting and some of it is a real freakin' drag. And we are discussing the ins and outs of an income, possible home ownership, and health insurance buying us the most cutting edge medical care, here. While billions go to bed hungry. We all make our own way, as much as our situations allow, and this is the time of life we are in. We are paying our dues right now as we fight, tooth and nail, for our kids to have it better. Everyone does it. Well. Not everyone. Bobby read an article to me the other day about how hard most of us millenials are struggling. (I consider us to be old millenials rather than young gen Xers- we are right between the two and we fit the millenial stereotype better.) It's not unique to this family. Turns out, with some notable exceptions, the only millenials who are doing well- owning their homes, having more than one or two kids on purpose, not living with their parents into adulthood are the ones who were born to wealth- who's parents paid or helped pay for college, who had assistance when purchasing first cars and first homes or help financing business ventures. Our parents tried hard, they did, and they handed us what they could, but both Bobby and I are only a few generations removed from dirt-poor Russian immigrants who stayed right in the dirt they landed in. They, then their children, stayed firmly put and farmed that dirt through the dust bowl, multiple national financial crises, depressed farm economy, and by the time our parents were giving birth to us, they were overshadowed by the baby boomers who already had all the big farms and the great jobs, and they struggled their whole lives as we are. Neither Bobby nor I thought we had the time, let alone the money, to go to college when we could enter the workforce immediately. We hurried into marriage so we could hack the American dream with a two-income household instead. Funny how that only works until one of you decides to stay home and raise your progeny.

But I truly subscribe to the theory that transparency is the way we connect and how we know we aren't alone in the big and bad, happy and sad. This is why I sometimes talk money. It is a big part of this big adventure we find ourselves on. It is as big of an obstacle as the strictly medical ones. I also want to provide a candid window into all aspects of this journey for the inquiring minds who want to know. This is why we are keeping close record of all of our mounting expenses, whether paid by us or by insurance. This is what it actually costs to get sick in our broken healthcare system. Well, correction- this is what it costs to get well. Getting sick is, and will always be free. 

Ever wonder what $1,000 looks like in Cancerworld? 

So far, in twelve weeks of treatment, Blue Cross of Kansas has over $350,000 invested in Daniel. I feel like we should throw a party when we hit a half mil. A "what we aren't paying" party. Our out-of-pocket medical expenses are about $13,000 so far this year. This includes our insurance premiums as well as prescriptions, copays, out of network self-pays and deductibles. It doesn't include fuel in our car, tolls, and other random things we wouldn't be paying for if Daniel weren't sick. And it is because of your generosity, dear ones, that we are even sort of considering an attempt to finance a house. If. If we qualify. There is a good possibility we won't. The several grand you have sent us or left on the GoFundMe cousin Weylin set up is several grand of that $13,000. And for this, we are so humbled and grateful.  

Go for the no's

Hi! It's a...day, here. Hot. House is a wreck. Nobody slept well. Several weeks ago, in the hospital, I'd have killed to sit in my messy house and stare at the walls for a bit. But...well, no but. Actually, thanks, me. That does make me feel better. At least we aren't admitted. 

And we aren't dealing with a necessarily terminal diagnosis...

And we aren't starving...

And we aren't homeless...

And we aren't uninsured...

And I'm not tied to a chair in a hot room holding a copy of today's paper in front of a camera while some uneducated zealot with a bag on their head screams about their own twisted ideology while brandishing a knife or machine gun, or in some damp basement while some sociopath is upstairs googling the best way to get away with rape, torture and murder, nor am I sitting here wondering if the same is happening to my missing child.

Wow, that went off the rails in a hurry. Careened, more like. Go home, brain. You're...dark.

Ok, fine. I'm whining. About first world problems. Don't I feel like a jerk. I should probably sign off now, because eighty percent of my intended subject matter just became irrelevant.

On to the rest of it...

Yesterday was the first day of our second round of Consolidation, the title given this fresh hell of nausea Daniel's chemo yesterday threw him into. His counts weren't high enough to start it last Friday, nor were they high enough to start Wednesday. We were actually somewhat relieved, because this gave us a whole extra week of letting his appetite return, his attitude improve, his energy levels soar before having to start the next phase coming at him like a loaded Mack truck with a cut brake line.

We "should" have only had to do this month once, but since his bone marrow biopsy results did not attain MRD (minimal residual disease), he was moved from the protocal for a low-risk categorization to one for high-risk, which means doubling down on certain phases like this one. We are on standard high-risk protocal, having turned down the offer of going on a clinical trial, since we still just assume he will respond beautifully, attain long term remission, and we will skip away from this whole experience unscathed. We have to assume this. Our whole  coping mechanism is perched on this foundation. Anything else is too unthinkable to even go there, unless it is revealed in the future that we have to. Even stretching a safety net in the form of the smallest amount of expectation of bad news is just too much to consider. I have a thick, solid wall of NO built into my brain, and any thought of relapse, let alone being in the 5-10% who do not achieve long-term remission (long-term in Cancerese meaning five years) slams into it and ricochets right back into the shadows it shot out of. Someday, maybe I will have to-NO. But what if-NO. But shouldn't I prepare, in case-NO. No, no, no, and absolutely not.  

We chose to stay on standard protocal because for high-risk patients, clinical trials mean more drugs to further minimize the odds of recurrence. For low-risk, they generally are testing the effectiveness of fewer drugs to determine what the minimum amount of treatment necessary might be. We felt, since the amount of cancer left in his bone marrow wasnt a large amount, we could risk going with the lower amount of drugs and still count on not having a recurrence. Because, well, NO.

So we already did this month once. We know what to expect. Except the side effects are hitting harder and faster this time. We spent our seven hours in the infusion center yesterday getting fluids to flush the chemo from his bladder faster than it had a chance to permanently damage it, and the actual chemo, thirty minutes of burning, watering eyes and dripping nose for Daniel. We decided this time to skip the insuflun, the little subcutaneous catheter inserted in his thigh to save him from needle sticks when we administer his cytarabine at home. I have given enough shots to myself through the course of growing two alive babies, I felt confident giving him shots to save him from possible infection from a contaminated insuflon, since it proved really hard to keep water and dirt out of it the last two times. I'm regretting this now, because every shot leaves a small bruise and he cries, but I had to make that decision for him- what would he rather: one shot, in exchange for being able to go to the splash park, take bathes, not wear long, hot pants? Or a less painful moment once a day for all day of less freedom? I hate making those decisions for my babies. I shouldn't have to. 

Bobby spent the day at the clinic with us, but he had to take his own vehicle, due to some schedule conflicts early in the day. On the way back, we made it about thirty minutes before, from the backseat, I heard "uh-ohhhh." And Daniel began sobbing. I adjusted my rearview mirror and watched him as he began grabbing at his skull, and his crying became harder everytime we rounded a curve and the sun shone in his eyes, so I called the hospital to ask if I had permission to give him something for a headache. Twenty minutes later I was still on hold, and just as I was merging onto I-25 from the E470 tollroad, which we had taken to try to avoid rush hour on the south half of  I25, he threw up all over himself. Since he was strapped into his carseat, he started gagging on the vomit since he couldn't get his head forward far enough to get it all out of his mouth, so I swung onto the shoulder, hung up on the hospital, called Bobby who was ahead of me to tell him why I was stopping, jumped out, unlatched his chest strap, let him get the rest of it out, then grabbed Alex's blanket, wiped off his chin and chest, buckled him back up and hit the road again for the first exit.  We followed Bobby's car to a dance studio parking lot, where we got Daniel out of his seat, changed his clothes, and I used half a pack of wet wipes to blot the worst of it out of the carseat, while Bobby held a syrofoam cup (yay for cluttered vehicles) under his chin as he threw up again, and again, and again. And then rallied and assumed we were stopped because it was family fun time and insisted we unload the stroller and go for a nice, scenic ramble. With a resigned sigh and shake of his head, Bobby did just that while I got a now-screaming Alex out of his carseat, sat on a curb in the shade, and nursed him. And at that point, the sheer ludicrosity of the whole situation caught up to me. That a baby who does not even have the vocabulary to be able to tell me how he feels, has no frame of reference for judging situations to be unusual and has no comprehension of the concept of mortality is fighting for his life, that is ridiculous. That this is far from the worst thing to have ever happened to innocent children is inexcusable. That we can't protect our own children is unbelievable. And that I spend so much of my time being angry because he doesn't know to be is just...I dont even know where to put that. My tears at that point were hot and angry as I kept repeating to myself, "There is no reason for this. There is no excuse for this. There is no way anyone deserves this." 

(Yeah, I take pictures of the bad times too. Some day I'll show them to him, when he thinks life is too much, to remind him how much he has already overcome.) 

Then Bobby and Daniel came back, we put the kids back in their carseats, and hit I25 again, our lost hour leaving us right in the thick of creeping Friday evening traffic. This time I left the cup in his carseat cupholder, and although he threw up again, this time he didn't spill a drop, but caught every bit in the cup, spit, wiped his mouth, and placed the cup back in the cupholder. Then fell asleep, a pale little man, far too old for his size, in my rearview mirror. And again, the anger vise closed on my heart until tears seemed too self-indulgent and I drove scowling fiercely at anyone daring to pass me as I sat in traffic.

We gave him a bath (and a second bath, after he threw up in the first one) and another dose of Zofran (anti nausea) when we got home, and this time it was effective enough to allow him to eat dinner a few hours later. It was 11:30 by the time I finally nursed him to sleep, then remembered to set my alarm for 1:30 to give him his 6mp (which we are back on for the next two weeks now) on a two-hour empty stomach. He fought me on it, barely awake, and we spilled some on his pillow and shirt, but he did go back to sleep without asking to nurse, (Alex was glad to take a turn for both of them, then I had to sit up and pump, thanks to Daniel's thankfully lacking nighttime appetite) and didnt wake up wanting to nurse until 5. So he did get three and a half hours of empty stomach after taking it this time. Seems like we should be able to get more, if we could just manage to get him in bed by 8. Not to mention then I could give it to him at 10 when we went to bed instead of setting an alarm for me to wake up to give it to him.

We left the windows open to let in the cool night air, and I lay awake listening to rain dancing across the canvas awning outside our bedroom window, the thunder gods conversing back and forth across the sky outside, and for a moment, I was back in the little white stone house in the Smoky Hill River breaks on the edge of nowhere, not much older than Daniel, feeling the thrill that was a summer thunderstorm, back when it never occured to me to feel fearful of the storm, barely aware that anything bad could happen. And then I lay there comparing my childhood to his. I eventually also lost my innocent assumption that nothing could ever hurt me, but I made it to my preteen years before life got cruel. He made it twenty seven months. And again, anger. But this time, not fury. Just sad.

Alex got me up at 4:30, a cooing, grinning ball of morning cheer. I was not, but I stumbled down the hall with him and held him on the couch so the other two in our bed could sleep, and tried to force my eyes to focus and not to fall shut, lest I drop him, as he told me marvelous things about being a baby. Finally, by 6:30, he had worn himself out, so I took him to the spare room and nursed him back to sleep, and I slept until 9 am, when Daniel finally awoke enough to miss me and come looking for me. 

And now Bobby is at work until late tonight, I just gave Daniel his shot and nursed Alex back into a state of satiety, such a temporary condition for him. My mom called to ask how things were going, and I whined to her about my crappy day yesterday, my messy house, my miserable kid, and then my dad got on the phone and decided that they should drive five hours yet today to come up here tonight and make it better. Or at least cleaner. Sigh. I mean, yay, that we get to see them, and that Daniel gets a visit from some of his favorite people in the whole world when he is feeling so yucky, but I should know by now that as hard as it is for me to see my child become an oncology patient, it is as hard for them to watch me become a momcologist. When I wallow in self-pity, they are going to feel as sad and helpless as I do watching Daniel suffer. And they are going to go to great lengths to help me feel better. Because that is what parents do. Eventually, when parents don't set those pesky boundaries, kids learn that being a whiner will make their parents run around like crazy people trying to make them feel better, and they either like it and demand more, or they wonder if perhaps they should protect their parents from their emotions and try to be more objective about when they actually need help, since they know it is there, should they only ask. The problems arise when making your child feel better is impossible. I can always decide to be happier and save them ten hours on the road. Daniel can't decide to feel less painful, tired or nauseated. 

This is him right now. Pardon my really bad 1st generation ipad camera...

I am monitoring a fever, so far up to 100.7. If it hits 101, I have to take him in. Which I'd rather cut off my big toe than do. Crossing my fingers...

On a happy note, remember this from a few weeks ago? 

This is Simone. She turns two years old today. Unlike Daniel, she was diagnosed as an infant, which puts her in a much higher risk category. This from her facebook page, at #supersimone:

She's a tough little nut. Her mom would give anything to see her guaranteed a normal future, go to high school, break some hearts with those doe eyes. She deserves far, far better than what she got. The thought that anything but a long, healthy life could be hers is another big wall of NO. If you feel like doing a bit of activism today, donate to childhood cancer research in honor of her. She has parents who would do anything for her, what she doesn't have is the luxury of a disease that is well understood with well-funded research.

...and...herewego. Dialing the hospital. On a weekend. Again. Even though I know and they know that it's probably just a reaction to his chemo, I am sure we'll be going in for cultures. Hoping, since his ANC was 900 yesterday, that they will let us get by with just cultures and not antibiotics...

Mom instinct (or something)

Hello again. It's another beautiful morning in Northern Colorado, chilly after last night's rain, and now's the time we should be walking to the park or something before the heat gets us later. But the biggest little is eating breakfast for the first time in a long time. Because his mom got smart and started giving him zantac a half hour before. Which his doctor suggested I try for his nausea two weeks ago, and I forgot about. Again with the parent of the year award. It makes sense that it is an acid issue, made worse by anticipation of eating when his stomach prepares for food by increasing acid, because he always seemed to be all excited about eating until he got in his chair with a plate of food in front of him and got the first bite to his lips. Then he'd gag a bit, throw his fork back in his plate, and be done. Or he'd get brave enough to try a bite, then spit it back out. Or throw it up, if he actually got it swallowed. I've started setting his place at the table with an extra tupperware container to catch whatever might come back out of his mouth. In the hospital last week, the disposable, covered, divided plates his meals came in were actually great for this. The compartments, uneaten food. The lid, chewed and sometimes swallowed food. I feel it is a testament to how second nature this all is becoming to me that I had a thoroughly enjoyable meal of Daniel's leftover baked salmon and sweet potato meal from his plate, the lid of which was filled with recently vomited salmon and sweet potato. I was just relieved we had managed to catch it in the lid and hadn't spewed it all over the uneaten food a few inches away. That would have been a sad waste of perfectly good, if cold, food. Girl's got standards. Since me being the solo adult during hospital stays means escapes to the cafeteria are rare and I am unwilling to spend $8 on another tray of the same questionable food bub gets, my hospital diet consists of ordering for the patient the max allowable amount, then eating his leftovers. It's a good thing this particular toddler has an advanced palate so I'm not stuck with mac'n'cheese every day. Regardless, the menu isn't terribly extensive. After even a few days, the cafeteria starts to seem like a glorious, glowing beacon of noms, just waiting to be devoured. 

Poor kiddo is getting a complex relationship with food, I fear. He is barf trained in the same way he potty trained himself. We ask him in an oh-so-matter-of-fact voice if he needs to barf when he starts getting "that look", and he immediately picks up his tupperware container, holds it up to his face, and obediently gives us an experimental retch. Then tells us, oh-so-matter-of-factly, "nnno!", and sets his container back down. Just like he tries to potty when he doesnt really need to. 

Speaking of, he took himself poop the other day. Yes, I know. Body function bragging, so not the reason you are here. But this is a big deal. It is only the second time. The first time, this happened...

Granted, he did try to do it in the potty the other day while running around pantsless. But his obsession with closing doors bit him in the...well, the metaphor actually works this time. He came hobbling as fast as he could outside where I was, yelling, in his best "Timmy in the well" voice, "BOOP! BOOP! BOO-ooo-OOOOP!!", grabbing my hand and urgently pulling me to the closed bathroom door, although it was no surprise what I found there, considering the evidence that was on his legs as well. He stood there shifting from foot to foot, nearly hyperventilating as I wiped him down, anxiously watching as I got out the foam cleaner and scrubbed the carpet. And then, sighing with a pleased grin, happily pronounced, "There!" And, all better, hobbled off, his whole world set aright again. I know the feeling. When the metaphorical boop is back out of the carpet, everyone can relax so much more easily. 

After all of the dire warnings when we left the clinic after our Friday chemo about using my mom instinct and bringing him in for bloodwork if something didn't "feel right", my mom instinct kicked in on Tuesday and prompted me to take him in a day before his scheduled bloodwork, which we had to get to make sure he "passed" with high enough counts to continue his chemo regimen on schedule. Well. Maybe my obviously infallible instinct (the same instinct that missed the fact that he was living on the verge of passing out from lack of blood for two whole months before his diagnosis) was clued in by the fact that he was being a complete pain, either sitting and staring or melting down, when it should have been happy excited time since grandpa and grandma were here. Reminded me of how he acted before he was diagnosed. Fool me once. So grandpa, Bobby and I loaded up the two babies and took a little outing to Denver, where they drew his blood and determined his red cells were only slightly lower than they had been on Friday, but his white cells had dropped drastically, which would explain why the skin breakdown on his butt is back with a vengeance, refusing to even attempt to heal, and his ANC is 190. A normal ANC level is 1,500-5,000, and he had to be up to at least 750 twenty-four hours later to pass for chemo, which was highly unlikely, so they cancelled our appointments for the next two days and rescheduled another blood draw and chemo attempt for next Tuesday and Wednesday. We were happy to see that it had decided to resume it's downward trend after psyching us out with it's three day upward bump, so maybe I hadn't entirely sabotaged it with breastfeeding after mercaptopurine, it just hadn't bottomed out yet when we were discharged. We had been told they wouldnt let us be discharged if ANC was under 200 while on antibiotics, so I was a bit concerned they might decide to readmit him, but my fears were unfounded and we left Denver in the thick of rush hour, fighting our way up I25 for 60 miles, and got home to find big Bub had a package waiting for him. Not a small one. The next hour was a mess as the entire family, including Daniel and Andy, very helpfully assisted the assembly of one bright red ride-in firetruck from honorary Aunties Nicole and Carla. Which only got built enough to be functional, still missing bumpers, ladders, eyes, etc, before it had to be taken outside and driven up and down the sidewalk with many giggles and squeals. And attempts at running over unsuspecting feet. Who taught him that violence is so hilarious?

Bobby and my dad had just enough time time to buy chinese takeout and a birthday cake for dinner, but we had no time to eat them before Bobby's phone rang. A load had been located from Casper, WY to Cheyenne, WY. Right now, thankyverymuch. 

Sighing and rolling his eyes at the complete lack of ability to plan ahead even five minutes with this job, but thankful they had managed to throw him a bone in the form of work, he shoveled in a few bites of orange chicken and a slice of cake and left. Oh, right, I may not have mentioned it was my birthday...32 years I've managed to not fail at staying alive! I know 32 might seem a bit young for celebrating an accomplishment like being alive instead of bemoaning getting older, but bless their hearts, I have a few homies who weren't so lucky and didn't manage to emerge from their 20's. I feel so lucky with each reminder of the fragility of life. Like birthdays. 

My mom stayed here while dad left that evening yet to go home and work for the week, then return this weekend to pick her up. Her check-up was less thorough this time, hopefully because she is already four years past her own nightmare of chemo, double single mastectomies, radiation, reconstruction, and re-reconstruction. But she was given the all-clear for another six months of assuming she is cancer free. Cancer, you jerk. Haven't you had about enough fun with our family by now? Wasn't it enough to take Bobby's thirty two year old mom, not to mention a twenty nine year old pregnant woman, a forty eight year old mom, a sixty seven year old grandpa? You had to mess with grandma Sandi and little Daniel as well? Are you about done yet? 

I took full advantage of having an adultier adult around last night to go out for my first girls night out without a baby since...I believe early December of 2014, when Marci and I drove an hour to Garden City for a movie and left Daniel with his dad. Once I adjusted to the odd "something's missing" feeling that is the rare absence of children, I promptly forgot all about them and had a fine time. 

And now I sit here watching Alex sleeping in his swing while Daniel and his dad are outside driving firetrucks and lighting sparklers. Daniel had his first experience with fireworks the other night thanks to grandpa. We wouldnt let grandpa light any loud ones out of respect to the neighbors, but sparklers, ground blooms and smoke bombs were just Daniel's speed. He was fairly mesmerized, when he wasn't hurrying away squealing, "uh-ohhh! Uh-ohhh!". That's not the face of a budding pyromaniac at all...

Bobby keeps limping along job-wise. It sounds like he has the option to work, as long as he is willing to haul over the road. And now he is doing some temporary oilfield hauling up in Wyoming. We are still searching for work, but still hesitant to just jump into another stop-gap oilfield or trucking job. The irony is, all of the trucking companies in the area are still hiring. All have big "Now hiring!!" signs. Even Bobby's company is hiring, constantly needing to fill the seats left vacant by the guys who got tired of waiting for work and quit, lest butts in seats are suddenly needed. They hire drivers who sit until they quit, then they hire more who sit until they quit, and so on, just to have drivers ready to go at a moment's notice, hungry and willing to work. 

And when Daniel's cheer runs out, baby Alex is the cheer in our lives, his hundred-watt toothless smile lighting up the room, his coos and almost-giggles eliciting like responses from whoever is holding him. There was a time, not so long ago, when I was terrified I would not feel for him what I felt for my first baby. I have to say, it has been different. I am probably getting more sheer, unhindered delight out of my budding relationship with Alex than I did with Daniel, because my relationship with Daniel was part terror that something might happen to him, fear I wasn't being a good parent, the overwhelming responsibility of doing all the right things to carefully mold a secure, happy young human. Alex was thrown directly into the chaos that was our existing lives without the luxury of time to dwell on such things. Even his birth ended up being indicative of how things have gone since. I was so exhausted after several week of intvervals of non-progressing labor that by the time my induction was scheduled, I was ready and psyched to just get induced already. I was prepared for another drug-free labor.  I felt strong and ready and well-rested after an oddly quiet night, contraction-wise. Then my induction was rescheduled for the next day because the hospital got busy, and that whole day I was literally in labor again, and that whole night I sat awake on the living room floor, puffing and rocking through intense contractions. By my 7am appointment I was exhausted, nervous, and had zero tolerance for more pain and every other inconvenience. So I gave it a half-hearted shot, induction without drugs, and soon, hanging from the ceiling tiles with contractions unlike anything I had felt before, wickedly stabbing, diabolical daggers that did not let up before the next one hit, I managed to gasp that I was ready and willing for drugs. And then settled into my new normal, deciding right then and there I would never second guess myself or tell myself I could have done it differently, and enjoyed what I got in return- not being out of my mind when he emerged a mere fifteen minutes later from my sort-of numb body. And then, enjoying my new resolution to stop second guesng myself, did what came naturally instead of what was proper and expected- tandem nursed him and his brother a short while later, slept with him in my bed instead of the basinet, brought him home, threw him in the wrap on my chest, and carried on with my life. Somewhere in there, just bobbing along through a fairly overwhelming new situation, we must have bonded. I know it wasn't immediate. It might not have even been in his first two weeks. But then his cheeks began to fill out, his eyes became bright and intelligent, and I realized he was a real tiny human instead of just movement inside me, or a red, wrinkled, froglike creature who was completely dependant on me. Now I am in love. Literally head over heals. Maybe some mamas feel this way immediately, but maybe the most honest ones can say it actually did take awhile. Or that they thought they loved them as much as possible when they were born, but their love grew by leaps and bounds as their babies grew.