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.
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.
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