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?)
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.
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