The fightin' mads

I have no real updates, just the non-news that was our day yesterday. There was a bright spot when the nurse came in to draw his labs at 2 am and drew a type-and-screen, a preliminary double check before giving a transfusion, because it had been four days since he had last needed one and he had never gone four days before. But this time, both his red blood cells and his platelets had come up a bit on their own, edging above the levels indicating a need for transfusion, so he ended up not needing blood. He did end up needing to be put on blood pressure medication because the steroids are stressing his body out, and since stopping the steroids is not an option if we want his chemo to be effective, the only option left to us is managing each side effect as it manifests. So really, the only thing we are still here for is his refusal to drink enough to stay well enough hydrated to keep the chemo flushing through his liver. He keeps having to go back on IV fluids. It is frusterating. I keep shoving water in his face, urging him to drink (juice is not an option since he is on a bland diet). He wants to nurse, but all night last night, every time I turned toward him to let him, Alex awoke. And every time I was turned toward Alex nursing him, Daniel was grabbing at my back, pulling on the straps of my tank top, whimpering, "pease? pease? Mo, pease?" He hasn't really caught on yet that "please" is more of a request than a demand.

At night, the emotions sometimes take over. In the light of day, objectivity is mine. I know that nobody did anything to bring this upon us, crappy luck just landed on our square, and I am thankful that what we have is an identifiable, curable disease. During the day, I know how lucky we are- he wasn't ripped away from us in an instant without giving us the chance to fight for him, he doesn't have an inoperable brain tumor, a weak heart or kidney failure, and he wasn't born so disabled we never got to see his little towhead bobbing through fields of wildflowers, his little feet paddling in a cool mountain lake, his long eyelashes catch snowflakes. But at night, lying next to him watching him sleep, his sweaty curls sticking to his clammy forehead, his pillow soaked, his cheeks flushed, his breathing fast, I sometimes let my inner demons out and rage at the universe, angrily demanding to know what such an innocent little boy did to deserve this. Did I not express, every day, my gratitude for our perfect, healthy child? Never once did I take my blessings for granted, even though it sounded morbid, my constant counting of things I was thankful had not happened when at the end of every day he was still cuddled in my arms, when I was still surrounded by my family, when we were well fed, warm and had a roof over our heads. So if it was to teach me to be thankful for what I had, it was a lesson already well learned by virtue of past losses. 

Bobby is a bit more accepting of these things, having grown up constantly knowing the loss that is the indiscriminate life-altering effect of cancer. His first response to the news that his baby boy had cancer was an almost shrug, even as the tears threatened to spill. Instead of why, he asked why not. If a thirty two year old mother of three was not immune, and was forced to come to the realization that she would not be here to watch her babies grow up, and that she would have to trust others to protect them when she could no longer fight for them, why not us? Sometimes at night I put myself in her shoes, and the rabid need to fight for my family makes my fists clench as I lie there fighting mad. 

Fighting mad is how I feel a lot of the time, in the dark. I lie next to that sweaty little body, the battle silently raging next to me, and although I desperately want to fix him, I can't do more than offer comfort. We are in our Valley Forge right now, at the bottom of the bottom. Cancer and chemo are doing their worst right now. We know victory will be ours, but in the meantime we hunker down and try to ignore the raging storms, both inside that little body and created by it, holding our hands to the fire to catch the smallest bits of encouragement. During the day, we joke that if we can handle a two year old on steroids, the terrible threes should be breezy. During the day, we are so proud of him and the way he simply accepts, in ways we cannot, what is happening to him. He opens his mouth for his bitter, awful tasting oral meds and holds out his arm for the blood pressure cuff, even though when it squeezes his arm, he whimpers. He lies on his back, trustingly looking up at his nurse's faces as they perform procedures that we know hurt him. They changed dressing and access on his port yesterday and summoned two people beforehand to help hold him down...only to have them stand there unneeded as he let lay perfectly still to let the nurse pull out the needle and insert a new one without using numbing cream. In spite of the skin breakdown on his butt, he lifts his legs and rolls in indicated directions for diaper changes so we don't have to lift him, even though he knows that we will be rubbing and stinging the twin patches of missing skin back there.  Occasionally, I even overhear the nurses exclaiming at the nurse's station how impressed they are that a 2 year old is so calm in the face of things that are new and painful for him. I really think that the reason for this is that he trusts people. Day or night, he forgives and he chooses to trust. I try to honor this trust by being honest with him. I tell him which meds are going to taste yucky and which ones arent so bad, and try my best to explain to him what each procedure will feel like. I don't know if he entirely gets what I am telling him, but he is such a little adult sometimes, in spite of some meltdown issues that are just unavoidable with a two year old on steroids, that I feel like I owe him adult-sized respect. And then at night, it all crashes in on me as I realize how unfair it is that someone who has only spent 27 months on this earth should even know to choose things like trust and forgiveness. 

 

As far as his physical condition, he still has zero immunity to speak of. His counts were up incrementally yesterday, but they are still bobbing along the bottom. I have been telling most people to just hold off a bit on the visits. Especially the group visits. Healthy individuals who live with healthy family members are welcome, but soon we will be home, this month of living on the bottom behind us, he will be in remission and on the rebound. Eventually, his counts will be up and something as simple as a kiss or a sneeze won't put him back in the hospital. This may even happen as soon as next month. This has been a different experience than my mom's solid-tumor cancer. Hers was a six month series of the same type of chemo cocktail every two weeks, which compounded every time to make her feel worse and worse until the last dose, which she could not receive because her body was so wracked by then and her blood counts so low it was unsafe. This is a month of intense chemo, four different kinds, a different whammy every time we turn around, and in two weeks he has gone from feeling relatively fine, if extremely weak, to having his little body buzzing with new sensations and side effects from sudden bloat and weight gain to inflammed rash on his palms and bottoms of feet to an itchy mouth to profuse night sweats to muscle weakness. Not to mention the gastroinstestinal distress, nausea and uncontrollable poop. But at the end of it, many kids are in remission. The month following is, I gather, one of recovery from the first month even as they undergo different ongoing doses and possibly types of chemo. I honestly don't really know what comes next month, it will depend on his response to this month, but we are told to expect him to at least feel somewhat better and have higher blood counts.

So here I sit, watching the gray morning mist roll past our seventh floor window, almost a week past as we sit and wait. And offer him water, only to have it pushed away. Bobby has been working, driving two hours to his truck every day, pulling a 14 hour shift, then driving two hours back to us. Right now, he is sleeping, having parked his truck about 6 am after having been up since about 8 am yesterday morning. Let him lie, I say. The man probably feels worse than he looks, which is pretty rough these days. Those gray hairs of his are going multiply pretty quickly at this rate.

And now it is daylight again, and again I am ready to be optimistic and objective. It's all good. Today will be a good day. Maybe he'll even drink and we'll get out of here. 

Aaaand...he just drank a lovely amount of liquid with his breakfast, then barfed it, along with chewed up omelet and potatoes, all over his lap. Thankfully it missed his plate of uneaten food. All that precious  liquid, wasted. Got him cleaned up and he's nibbling on a saltine cracker. Because whether we've just barfed or not, the need to eat continues.