Blessed, but sometimes cursing.

Hello, dear ones. I've got a few minutes before I fall asleep to tap out a little update, and plan to keep it brief. I've just spent the last hour and a half rolling back and forth between two babies as they nurse frantically, fall asleep, and then awake just enough to fight, literally tooth and nail, to keep from losing their boob while the other one wakes up and notices his own boob has up and rolled away again. My usual trick is lying on my back, tilted toward Daniel, my arm flung out on his pillow, his head on my shoulder and his hand pulling his "own" breast (because let's face it, they aren't mine anymore) to his face, and my other arm wrapped around Alex, lying on his tummy on my uphill side, draped over me with arms and legs dangling, his face smashed into "his" breast. This is a good position to bounce out all the extra air Alex swallows in his enthusiasm using my only available hand. Sometimes his little fists slip off of me and shoot down right into Daniel's face, which causes Daniel to shove Alex away from him by placing the palm of his hand on Alex's face and pushing, which leads to Alex sputtering in indignant disbelief, then letting loose a with frustrated squeal and grabbing for whatever he can get his hands on to keep from getting dismounted against his will. And then, with Alex yelling and thrashing, Daniel often starts kicking and grabbing as well. I have seen this struggle play out in litters of barn kittens time and again. I feel almost exactly like an annoyed mama cat, lying there in the dark with my ears laid back and an irritated twitch in my tail as the nursing litter struggles on top of me. But then they finally fall asleep, milk-drunk, with the last mouthful unswallowed and dribbling out of their cheeks, and I gently roll them off of me, then lie there listening to their soft breaths, lay my hands on their chests to feel their tiny, quick heartbeats, and fall deeply, terrifyingly in love. 

It has been a long week since we left the hospital. I somehow missed the memo that if side effects were to hit from Daniel's high-dose methotrexate infusion, they would not manifest for 3-6 days after the infusion. I so smugly came home from the hospital reporting no major side effects, aside from a diminished appetite and some nausea. But several days later, the redness around his mouth turned into a full-on inflammed rash, sores developed in his mouth and throat so badly he all but refused to swallow, which meant at night his saliva ran out of his mouth and down his cheeks, burning his skin. Everywhere adhesive had touched his skin, days earlier, blistered up in a painful, itching delayed reaction. His voice turned hoarse from swelling due to the sores, and he took to digging at his skin, obsessively scratching his arms, legs, back, and scalp. I gave him Benedryl, which controlled the itching on his body where there was no visible rash, but anywhere the rash persisted, he dug at, leaving oozing gouges in his skin. On the day it was the worst, he kept disappearing and I kept finding him tucked into his bed, not asleep, but curled up in a miserable ball, only his eyes moving to follow me. All I wanted to do was curl up around him, draw him close and hold him tightly, but Alex would not hear of not being held, and in a classic case of the squeaky wheel getting the grease, I spent the day all but ignoring Daniel as Alex demanded my attention. When Alex finally napped, I had a bit of a public meltdown, posted on Facebook along with a picture of Daniel's face and chest, covered in rash and reaction to the tegaderm and adhesives used to cover his port access several days prior, while in the hospital. This doesn't show the sores on the back of his scalp, and the burn on his lower back from the Tegaderm that held down the glob of numbing cream on his lower back, prior to his lumbar puncture. I have to admit, I was silently cursing a good part of that day, angry. So angry. Furious he has to go through this. I lost the positive perspective I generally try to keep so I don't have to go to all the work to put myself back together after I lose it. I was livid over the unfairness of his suffering. But instead of tears, which are usually my go-to in situations where I am feeling helplessly angry, I was beyond tears. I just wanted to throw things and use strong language. Which I did use...in whispers as I did dishes in a very businesslike manner while Alex sat in the carrier on my back, innocently cooing at the very interesting world from his elevated vantage point.

Honorary aunties Christina and Lisa actually drove all the way up to Loveland from downtown Denver that evening, having witnessed my meltdown, to bring dinner, wine, various other goodies, and Benedryl anti-itch spray. The spray has proven to be wonderful, I have been rubbing it on his head, especially the back of his scalp, to keep him from digging at the scabs that formed from his obsessive scratching. While I felt foolish for my meltdown by the time they arrived, I hated to admit how good it felt to see other adults, have an adult conversation, and place Alex in another adult's arms for a few hours. Daniel slept on the recliner, drooling down the vinyl, sweaty skin sticking to it, and at one point, shifted and faceplanted off of it onto the floor, but he did not want to be carried to bed, so I left him there until he was sleeping soundly enough to put a diaper on him and put him in his own bed wearing jammies from Aunt Mary, with his plush Curious George from Alperts, and his green and brown hand-crocheted blanket from Aunt Marci. I love that his bedtime routine is all about items that, in his most vulnerable moments, represent the love of his village.

By now, the blistered skin that was affected by the adhesives has dried to dark brown and begun to peel off, and the bumps he scratched the tops off of are also scabbed over and drying out. I am almost beside myself thinking that we have to go back to the hospital in six days to do it all again. As it turned out, the hospital stay was a picnic compared to the after-effects of the chemo. 

Bobby came back early from Wyoming, where he had gone after finally getting back from North Dakota. Something must have happened to the three months of work that was lined out up there, because suddenly all of the trucks got either sent home or sent to other oilfields. We are still trying to figure out what our next move should be. As of this morning, he got dispatched on a local cement haul, which came with the offer that it could be a regular, dedicated run for the next few months if he was interested in not quitting. He could manage at least two nights home per week. While this is an improvement, it is not exactly the solution we have been looking for. Daniel is starting to be acutely aware when his dad is gone for long periods of time, and the stress of witnessing our stress over an erratic schedule, not to mention never being able to count on seeing his dad, affects him visibly sometimes. He doesn't need to live with feelings of abandonment, and I cannot keep him from feeling them. It breaks my heart to see him searching the house and yard for Bobby when he isn't here. He doesn't have the emotional maturity to logically process his feelings of abandonment. And this isn't helped by the fact that when it is just me and the babies here, my attention is always divided unevenly, with Alex demanding more of it. 

But this week wasn't all bad. We spent three days this week at the park, playing in the splash park, digging in the sand, wading in the river. My friend Shelby, who lives in Greeley, drove over two days in a row to let our boys play together. We spent two whole afternoons in the shade of a footbridge beside a stream, letting the boys coat their wet bodies in sand as we held their baby brothers, hers three months and mine four months old, and relaxed as much as was possible with toddlers and running water in the same place at the same time. 

We had another reminder of how fortunate we are to be insured when our insurance statement came in the mail. It turns out, the Erwinia shots in Daniel's thighs to replace the PEG-aspariginase IV infusion he reacted to are not exactly pocket change. Each shot is worth about $17,000. That's about $34,000/dose, since each dose is two shots, one in each thigh. The total for two weeks of these shots was $209,500 and change. To say we felt a little weak in the knees when we got that statement and realized we would not be paying it out of pocket is an understatement. Granted, apparently even the insurance company must've been a little shocked, because we maxed out and overshot our allowance by about eight hundred dollars. But that actually feels like pocket change compared to what it could have been, had we given into our temptation to drop our insurance premiums before Daniel's diagnosis to ease the monthly budget. Since we will be doing two more rounds (a total of twelve more doses, or twenty four more $17,000 shots), our patient responsibility will hit about $3,200, but then again, maybe it won't. Because by the next two rounds, Daniel's secondary Medicaid coverage should be in effect for just such things. And just today, a check from some of our village arrived in the mail that will help cover our self-pay. It is so humbling to receive help like this, and so overwhelming. This is something we might not have automatically done for others before Daniel's diagnosis, just write a check for a loved one who was dealing with an extra bitter dose of life. The fact that people have done so for us rips our hearts out, in such an affirming way. It is hard to articulate the feelings of opening an envelope filled with such love. Inevitably, an envelope that seems to arrive at the same time as our need, and somehow, we skate through each month without running too grossly over our budget. We are literally being carried, and it feels...helpless, humbling, tender, hopeful, sad, embarrassing, healing, and deeply loved. 

But back to the finances of cancer. Our insurance payouts have broken a half-mil. Our little darling is now worth over $606,000. We are so blessed by the fact that we are insured. We were born in a country and to a life where it was possible. We are not trying to treat a toddler with high-risk pre-B cell acute lymphoblastic leukemia while having to travel hours over unpaved roads to a clinic in some impoverished area where insurance is unheard of and our only asset is a family cow, or something. Nor are we dealing with multiple diagnoses, such as HIV or tuberculosis, and we have easy, immediate access to plentiful, clean water and safe food when his counts are dangerously low. So many cannot say the same.