As tired as I am of the steroid-induced meltdowns, relentless whining, and begging for food, I have nothing to complain about. Poor Daniel is having to experience every miserable moment of this. His stomach is distended, so bloated his skin is stretched shiny. Varicose veins squiggle under his taut skin, and his legs, already skinny and atrophied from nearly eleven weeks of no use, are pitifully thin compared to his grotesquely swollen upper body. Even the roll that was his neck has disappeared, it is now just a fold between chin and chest. His eyes are squeezed even smaller, his nose and mouth are more narrow, squished between his massive cheeks. He looks like a caricature, all upper body, disproportionately tiny lower body. At clinic appointments I keep being asked if he is walking yet. As if. Walking? He can barely even sit up on his own, his arms are hardly strong enough to push himself upright, and sometimes they buckle, sending him smashing back down face-first onto the floor or mattress. Once I help him into a sitting position, he can stay that way, but getting there by himself is painful to watch. I ask him to crawl to me when he is crying to be picked up, and he tries, but then, too, sometimes his elbows buckle under his weight and he crashes to the floor face-first. Last night he lay and whimpered himself to sleep, reaching for my hand, showing me how he wanted my hand to squeeze his balled-up fist. It must have been hurting him. He only relaxed as long as I had a firm grip on it. And his diarrhea. It is uncontrollable. If I don't run to him the second I hear the explosion and carry him to the bathroom on the double, it will have found it's way out of his diaper, up his back and down his legs. It's not even diarrhea as much as scours. (Cattlemen know of what I speak!)
(Should I even post this picture? Seems like a definite faux pas, considering my Classy readership...but again, honesty wins. Not gonna sugar coat it. Especially considering it has already been coated in something considerably more...stinky.)
He has gained the equivalent of a 130 lb adult gaining another 25 lbs in two weeks. Basically, the equivalent of an adult becoming eight months pregnant over the course of fourteen days. I can personally attest that gaining that much weight over the course of a pregnancy was brutal and exhausting to carry around, and I had the advantage of 50% more blood coursing through my body plus eight months to become accustomed to the added weight and build muscle accordingly. He has neither advantage, only the opposite- diminished blood supply and legs that have not been used in nearly three months. Not to mention that his steroids are muscle-wasting and apparently also cause pain in long bones. Walking? Are you kidding me right now?
I suppose there is a reason they stop the steroids after 29 days- I feel like his tiny body literally can't take much more. It has been pushed to redline. It hurts me to look at him, and it hurts more to know I can't do anything to take away the pain. I can't do this for him. He has to experience every single moment of this himself, and this makes me so angry sometimes I can't see straight. When he sleeps, I can let myself relax and forget because I know he is oblivious for a few hours, but when he is awake, I feel for him the things he doesn't know to feel. Falling apart and crying, being depressed, all of these take time, of which I have very little to spare. And crying leaves one feeling all sick and waterlogged, and I really hate that feeling. But I do scrub diarrhea stains out of this rental house's carpets with gusto driven by angst. It isn't that I feel this has happened to us unfairly, because I know it happened for no reason and nobody else deserves it more or less than we do. I just feel helpless. Anger is often nothing more than a response to unmet expectations, and my expectation for him was that I would be able to shelter him, at least through his childhood, from everything terrible. My expectation was that he would be able to remain a child, at least for his first decade. Yes, life eventually happens to us all, but I grew that tiny, fragile body inside mine, I brought it into the world, I wrapped my heart and my arms around it, these arms that were supposed to be a shield to keep the world's sadness away. Except the ugliness, the imperfection and the pain I was protecting him from somehow insidiously took root inside his very bones as I was distracted keeping boogeymen from attacking from the outside, and now there is nothing left to do except poison it back out of him. So we watch as his perfect, fragile little body becomes a sponge for toxins, weathering excruciating changes, with the expectation that the poison will kill him more slowly than it kills the disease inside him.
And because he is a child, he does not know that he is entitled to have emotions about this. To him, this is simply the experience that is life. Yes, he hurts, doesn't everyone? He doesn't know that he should be running, collecting bugs, stomping in puddles. He is living in the moment, every nauseated, painful moment, with no idea that this is not the normal childhood experience. So I am angry for him, because he doesn't know to be, and this is the one thing I can carry for him. I can't carry his bone pain, his muscle weakness, his nausea, his night sweats, or his cramping tummy. But I can carry his emotional pain. I suppose as far as the stages of grief go, this is a two-in-one- I have even managed to make grief more efficient by combining Anger and Bargaining. Nobody finds ways to multitask like a mother of small children.
The brightness comes from the love of those around us. The kind words, gifts of food and money, these remind us that outside of our cocoon, others are aware and also bearing the burden of emotions. There is nothing like a small child's pain to elicit a gut-wrenching response from even the most unemotional of people.
And not to say it's all been life in the cocoon. Sunday Bobby had the morning and afternoon at home, so before he got called into work we drove to Ft. Collins, found a parking spot, and walked a considerable distance to Spring Canyon Park for "Kites in the Park", a kite festival. It was a good day for kite flying, almost miserably windy, which made it feel cold and kept us from realizing we probably needed to be wearing sunblock. Hundreds of kites, which coaxed a rare grin out of Daniel in between his begging to visit the food vendors. We met my friend Shelby and her three year old son there, sat on the ground and ate snow cones, and finally sent Bobby back for the car so two mamas and four kids (one still in utero, Shelby is within two weeks of having a baby, one on my chest in the carrier, and two in strollers) did not have to walk back to the vehicles. We continued our celebration by going out for burgers on a patio, Daniel eating most of both of our orders of french fries, then returned home just in time for Bobby to be called into work instead of taking his planned afternoon nap. So he got no sleep that day, but we did get an outing and a grin or two from the little 'roid monster. Worth it. I think Bobby would even agree.
As far as updates of a non-emotional nature, Tuesday's bloodwork was "in the zone", not too high, not too low. His platelets white and red cells are still pitiful by normal standards, but good considering what they were a month ago when he was that pale child with dull eyes, dwarfed by a hospital bed, tubes and wires and beeping IV pumps. They are holding steady. His ANC was back down to 740, knocked back by Friday's chemo, but as long as it stays over 500 without climbing over 1,000 (if I'm understanding this right), they are doing exactly what they should be. His immunity needs to be suppressed to keep his chemo effective, and it is suppressed enough to do just that without being so low as to have the smallest sneeze or dirty door handle put him in the hospital.
Friday, day after tomorrow, we go back for a bone marrow biopsy, lumbar puncture to check for cancer cells in his spinal fluid and another dose of chemo injected into his spine. His treatment during the next phase depends on the results of the biopsy. Friday is Day 29. We get to discontinue the steroids after day 29 and spend the next month recovering from them, hopefully getting him back to normal size and emotion-wise.
We are looking forward to having these little boy's godparents here over the weekend, offering cuddles. Not that the biggest little boy is so into cuddles these days, or anything else really, except for repeating "NO!" and asking for more food, but the smallest one is always happy to be held while he sleeps. And my, but he is sweet when he sleeps. It's when he is awake and loudly advocating for himself that we sometimes stop in amazement, just to marvel that such loud sounds can come fom such a tiny body. But he eats almost nonstop (taking a cue from big bro), and is gaining nearly a pound a week, his legs and arms fattening, his neck enthusiastically taking on the challenge of holding up his head, his big round eyes taking in everything that wonders into their near-sighted range. He is a constant source of joy and wonder, and a reminder to us that Daniel has not always been sick, he was once as healthy and bouncing as his baby brother, and there will come a day when they two of them will not remember this time, and will play and fight together like only two brothers can.
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