It would be remiss not to mention remission

Hello all! Thanks so much for all of the well wishes for today! I may have lain awake this morning in the wee hours plotting just how to best get the small one out of bed, past the kitchen, and out the door without a hunger-induced freakout, since he was NPO until his procedure. He was already awake at 4:30 saying, "Up! Cheese? Peeeeease? Cheese? Up! Up!" Since his procedure was scheduled for 8:30, he had to stop eating solids 12:30, no breastmilk after 4:30, and no drinking clear liquids after 6:30. I let him nurse until about 4:45, then gently and nonchalantly rolled away from him, and he miraculously fell asleep, not realizing that this would be his last meal for hours. And stayed asleep until it was time to leave. Unfortunately, I couldnt risk sliding out from between the two sleeping babies either until it was time to leave, lest I risk waking them, so while B showered and repeatedly asked if I was going to get up, I stayed perfectly still, plotting my moves once my feet hit the floor- closet for clothes, sprint to kitchen and stuff a banana in my face, switch off the kitchen lights, change Daniel's clothes, and hurry him to the car, facing away from the kitchen on the way past. It did not work exactly as planned because I had not discussed this with B, so I had to leave Daniel sitting in bed half dressed and confused while Bobby sat on the couch checking the weather online and eating a bowl of cereal, clinking his spoon loudly against the bowl. I cringed with each clink, holding my breath and not mentioning it lest I sound completely deranged. But it did not alert Daniel to the fact that breakfast was being had without him, we got him dressed and hustled out the door, and by the time he realized he had missed breakfast we were down the road and he knew there was no food to be had, so he settled for merely whimpering and whining instead of loudly crying. 

Once we got to the hospital, his requests for food changed to "Peeeease, boo? Maw, boo?" (Sob, moan.) "Boo? Boo? Peeeeease?" For about an hour while they accessed his port, ran his blood, and prepared for his procedures. The mommy hormones responded to his heartbreaking begging by causing said boos to let down painfully and messily, and Alex also cried because he was getting hungry (not that he ever isn't hungry) but I refused to nurse him where Daniel could see, lest we introduce full-on hysterics. Then the anesthesiologists came for him, so Bobby carried him into the procedure room where he was okay until Bobby told him he loved him and would be there when he woke up, which alerted him that he would be going to sleep, and the tearful breakdown started again. And then quieted as his lights went out, and we left to go down to the cafeteria for breakfast. We almost didn't make it back before he woke up, but we were back by his side as his eyes focused enough to realize we were there, and for about ten minutes, he was in a haze during which he held Bobby's hand tightly and looked sleepily at him. And then he woke up enough to realize that he was being sweet and agreeable, and immediately pushed Bobby's hand away and pointed at me. "Boo? Pease-pease? Waaa-aaaa-aaah!" The nurse today seemed a bit less patient with the idea of me nursing him awake than other nurses we have had, and both bays of the recovery room were full with no curtains drawn and it seemed a bit hard to pull off with grace anyway, so we tried to keep him happy with apple juice. But once we got home, he got to have all the cheese and boo he wanted, plus meatloaf, two bananas, and rice. 

We just got a call from Children's telling us his preliminary results of the bone marrow biopsy- the pathologist could not find any leukemic cells in his bone marrow. Which was what we were expecting from the way his bloodwork was rebounding. This means he is in remission, which is the ideal goal of this first horrible month of slamming back the cancer with heavy-hitting chemo and steroids. This is not to say he is cured, but it does say he has responded to his chemo regimen in the best possible way. He will be classified as low risk. The next three years will be a fight against it returning, and there will be some difficult treatments and therapies, but from now on his discomfort won't be cancer induced, it will be cure-induced. Which is a little hard for me to think about right now, knowing that all we would have to do to make him feel better and return to being a normal little boy is stop his treatment...but don't worry. I'm not stupid. 

His ANC was 1,140 today. I somehow had the idea that anything over 1,000 wasnt necessarily a good thing, as far as keeping the chemo effective, or maybe being a guage of how effective it is...I don't know, all I know is how very much I don't know. I sometimes don't even know enough to ask a question in an intelligent enough manner to have it understood. But I did ask the nurse if this is too high and she looked at me a bit oddly, then said no, not at all. So maybe I was mistaken about that. I really don't know. Confusion on the part of family caregivers should be listed as a side effect of this treatment. Not only occasional stress-induced semi-dementia, but also a constant state of overwhelmed confusion and second-guessing what one thought one understood perfectly. Not to mention regret- wishing one had spent one's twenties obtaining a medical degree instead of snowboarding, poaching hot tubs and cleaning up other people's ski vacation fun and spring break barf. 

On that note...I think we need to celebrate. Tonight is our last dose of steroids for the time being. Thank goodness. The effects have begun to compound so fast we can tell a marked difference in him on a daily basis- every day he is bigger, fatter, more stretched and miserable than the day before. We need to celebrate that we did not do this horrible month for nothing- the poison worked. It did what is was supposed to do. He has achieved remission. 

Remission. That sounds weird to say. I have only just gotten accustomed to saying he has leukemia. At the same time, it is hard to imagine that one month ago today, the 22nd, we woke up with nothing more on our minds than a trip to the Ortho to see about his hurt leg. That long day seems like a hundred years ago. The effects of the steroids has us looking at him and seeing a really short five year old, almost, certainly not our little waif of a two year old. His physical changes are messing with our heads as much as the stress of the last month is messing with our perception of time. To be honest, there is this line a long time/several weeks ago after which I no longer truly felt he was the same child he was before. He became strange to me when his demeanor and appearance changed so drastically. I feel like my child has gone away.

I know who this is....
 

But who is this?!

The child in front of me right now is a beloved responsibility, a pathetic small thing who demands my sympathy and respect, who is an extension of me, but also someone I do not know. He is as intimate yet new to me as Alex is. None of the old rules apply. None of the games we used to play together amuse him. Our inside jokes go unnoticed. I no longer know how to make him smile. We are just...familiar strangers. And tonight, he takes his last dose of the substance responsible for this. My little boy is coming home. I'm going to get him back, if incrementally over the next month or so. I am so lonesome for him, which sounds ridiculous considering he sleeps next to me every night and lies in my arms nursing for several hours every day. I am so excited to see him emerge, I can hardly contain myself. And then I feel incredibly guilty about this, because he is in there right now, an innocent little boy temporarily trapped in a body so heavy he can't control it, unable to regulate his emotions, uncomfortable and feeling sick, and what if he senses some subconcious rejection from me? In addition to the normal feelings of rejection a toddler might feel as a former only child with a new infant sibling? Horror. I can only hope my outward warmth toward him has not faltered. And this brings on so many more questions. Is my love conditional? Surely if this were permanent, I would adore the new giant, irritable Daniel like I do the real, sweet, affectionate Daniel.... Do I love or like him less when he is being unpleasant? Should I even try to articulate these feelings, lest they be taken the wrong way? Is there a right way to take them?

Perhaps we should wait with the celebration until he is back. Because even though the month of purgatory ends tonight, it would be nice to celebrate with the little boy who's smile changed our world.