Odd but sweet

Spring has finally decided to grace us with her presence. We are getting out of the house more, which has everyone in a better mood. And the wee one's mood is changing before our eyes. Goodness. We knew it was bad, but it took that horrible month of steroids ending and the mood starting to improve before we realized how bad. Many of our friends and family who have witnessed him during this time have vowed to never again judge the parents of overweight, ill-behaved children, in case the child has a medical condition and not just overindulgent parents. A good reminder anyway, but one we tend to forget when sickness is not readily apparent. I know I have certainly felt judgement from strangers lately. I am used to strangers going all googly-eyed over my exceptionally calm, happy little man as he grins at waitresses, helps me pay for and bag groceries, stands patiently in line with me in the post office, proudly holding the mail to be sent. Now, I see that involuntary check in their stride, the searching for words, the inevitable, "how old is he?" Followed by, "What a...big, um...boy!" Sometimes I pull his shirt down over his tummy, pat it, smile, and say "yes, he is!" And sometimes I cave, giving into the societal pressure to feel guilt over failure to conform to a standard of appearance, adding that he has gained all of that chunk in the last month thanks to a round of steroids to augment his chemo regimen. And then I immediately feel guilty for even feeling like I have to justify. My child's appearance or behavior is none of their business, and it is not their place to judge. But on the other hand, maybe making them feel a tiny bit crappy about having judged a child with cancer based on his appearance will affect future judgements on their part and help spread awareness so that some other mama won't have to feel judged by yet one more person. I do know that while I would have wondered about adrenal issues, seeing an obese toddler in the past, and compared their weight to that of their parent or caregiver for clues, I was oblivious that a kid on steroids for something as common as asthma or allergies, let alone cancer or donor organs, could look and act like such a little monster. A lesson in tolerance is always good, even though it comes at the high price of personal experience sometimes.

^ This is a moment that would never have happened last week. Baby Alex would have been flung onto the floor, and there would have been a meltdown and much screaming of "NO"! Ahhh, welcome back, my boy...

Our celebration of his quick, if not easy, trip to remission was cut short Wednesday by a phone call from our oncology fellow, the liason between us and the hospital. We knew we could put too much stock in preliminary results, but it had still sounded pretty certain that the pathology was clear...turned out, not so clear after all. Given two more days to do whatever they do (regretting my decision to not go to medical school every day...not that it was so much my decision to make), they called back to tell us that six out of every one thousand cells were still cancerous, which, while obviously nothing like before, when almost all of them were, was still enough to put us in the high risk category. This means that our next phase of treatment will last eight weeks instead of four weeks, and that we are ineligible to continue on the low-risk clinical trial, but can now opt to be candidates for a high-risk clinical trial. I am not entirely sure what the schedule will be in the next eight weeks, but I do know that in addition to (I believe) weekly IV infusions of Methotrexate and Cytarabine (both of which he has had before, but only intrathecal, not in his bloodstream), and, it sounds like, some daily oral chemotherapy drugs, he will also receive weekly lumbar punctures, during which they will inject Methotrexate into his spine. Because of the 12% of kids who relapse, 20% from cells hiding in the spine after remission was thought to be achieved, the clinical trial we were offered focuses on extra measures to clean up the cancer in the spine. This involves also injecting Cytarabine in the spine in addition to the standard Methotrexate during lumbar puctures, plus hydrocortisone to control any resulting inflammation. Since his spinal fluid was clear of cancer cells in his initial biopsy (not to say for certain that none were present, but not enough to be present in the sample drawn), we are leaning toward remaining off-trial. This trial is five years old and still active, which bodes well for it side-effect wise, but there is always the risk of undesirable side-effcts any time an extra drug is used, and if we can avoid yet more drugs, we would like to, as long as the end result is no more cancer. Which it has over an 80% chance of being. The extreme-risk trial of the same nature has already been discontinued because of the side effects of the added Cytarabine. 

This all has to be decided by the time we go in on Monday, before they give him his first dose of chemo in this second phase. In spite of his fever Sunday night, it has been a wondefully quiet week. Since we quit the steroids, even his horribly explosive diarrhea has resolved somewhat. I'm hoping the steroids were to blame. It is still runny, but the consistency has become more watery and chunky, (TMI, I know), which means it absorbs better into a diaper instead of melted ice cream soup just running out everywhere. I am even using a few cloth diapers again, trying to get the sores on his bottom to finish healing and not filling our garage trash barrel so full of the foulness. 

At the moment, daddy is sleeping, having gotten home at 2 am, not that that's so late around here considering I haven't gotten the two babies to both calm down and go to sleep before midnight the last few nights. Big bubba and I are eating breakfast, my eggs between two slices of toast, his dipped in alarming quantities of Cholula pepper sauce, his new ketchup. Little bubba is in his swing, sleeping off his night of nonstop nursing and loud talking. The sun is shining, and Aunt Mary has given us a new double stroller, which we procured last night in a craigslist score, so before this sunny Colorado morning does it's usual trick of turning cloudy and rainy by noon, I plan to throw both big and little bubbas into it and go for a jaunt. Maybe even a run. We'll see how long the running lasts pushing two kiddos through our hilly neighborhood. I might be 25 lbs lighter than I was six and a half weeks ago, but running still uses muscles I haven't used since...well. Before we moved to Kansas, really. I tried to run there, but it just took so much more commitment than it does in Colorado. Here, the weather beckons one to come outside, to find excuses to stay outside. There, it often did the opposite. Running was something to push through and the reward was getting back to the house where the heater or air conditioner was running and the dust was not blowing on one's face. Colorado has been good to us. I can't imagine what we would have done had it not called us back when it did, putting us close to the heath care we needed. Just the thought of doing this from Kansas or Nebraska is exhausting.

A one-woman man

Hi, dear ones! Hope your weekend was great. Our was, for the most part. We were visited by Daniel and Alex's godparents, Uncle Leroy and Aunt Mary, and Aunt Marci, who they picked up on the way out. The cuddles were abundant. The weather did not cooperate to allow us to spend much time outdoors, and neither did Daniel's mood, but he did take a shine to Aunt Marci and for the first time in a long time, actually enjoyed being read to, even joining in with sound effects on his favorite stories like he used to. The kid is such a one-friend man. He is not necessarily a social butterfly, but he will choose one person and shower them with giggles and all of his sweetness, and demand them and nobody else. One just has to wait one's turn around here, because eventually everyone gets to be his Person, but it's a moving target who it will be. Lately his dad has not been his person, which has daddy a little miffed. But other times it is me being pushed away as he reaches for his dad. Sigh. What goes on in that head?

We stopped his steroids Friday. By now, we are beginning to see a few rays of sunshine. On Saturday, he played for about ten minutes with Baron, the three year old who spent a few hours at our house as his mama was in the hospital giving birth to his little brother. Poor Baron was rather confused at his complete lack of interest and frequent crying, but quickly brushed it off and began playing, so I nonchalantly moved Daniel down to the floor, where he did not want to play himself, but did start handing Baron toys to play with for him. I guess vicarious playtime is all he could manage. But it was still better than his usual adamant refusal to even try to do anything but sit, cry, ask to nurse, eat cheese and watch episode after episode of Curious George. 

On Sunday, we girls took Alex and left to do a little second-hand store browsing. I found a few shirts that were somewhat nursing-friendly without having too gaping of necklines, which allowed me to throw out a few I had been attempting to wear in spite of the state of them, not even good enough for Goodwill, since most of them had been procured there in the first place many years ago. When we got back, Daniel was nearly beside himself because I had gone missing, so he and I sat and cuddled while he calmed down. As he was cuddled on my lap, calm and nursing, I noticed his pulse hammering against me and began timing it. Over the next two hours, it was consistently between 180 and 200. His temp was 100.2. We began taking it every few minutes and tracked it up to 100.8 before I finally decided to call in and talk to the oncologist at Children's. He had been shaky all day, but I attributed that to withdrawal from the steroids, and wondered if it could also be to blame for his fever and racing pulse. Before the doctor called me back, it had climbed to over 101, and we knew we had to take him in- 101 is the cut-off after which an emergency room visit is no longer optional. (Due to his steroids being anti-inflammatory, a fever of 101 is equal to a much higher fever in normal people, and due to them being immune-compromising, the odds of a fever being caused by a bacterial infection is much higher, so every fever is cause for big alarm.) 

Because of his high heartrate, the oncologist would not let us drive him down to Childrens, wanting him to be seen within the hour, so we rushed around, packing a suitcase for our potential hospital stay, took Marci, left Leroy and Mary home to do a bit of shopping and food prep that they had offered to do for us, and headed for our local ER, deciding to try the smaller hospital close to our house instead of the big University hospital on the other side of town. Smaller ER, and we are usually high priority there so we get to bypass the germy waiting room, blowing past all of the pinkeye, ear infections, and sprained wrists and being escorted back to our room immediately. They even took full neutropenic precautions, gowns and masks, which we greatly appreciated. 

The oncologist's only concern about us using a smaller hospital was that they would not be as familiar with accessing his port, and maybe it was just a fluke, but she was right. They were unable to access it. We had, in the frenzy, forgotten to put numbing cream on it, but in the past when we have forgotten, he has not acted like it was painful. Our nurse was visibly nervous about accessing it, and when she did insert the needle through his skin and into the port, he cried. And then she proceeded to try for the next half hour to either draw blood out or push heparin in, and neither worked. She was a nit traumatized by his crying, but positive she had placed the needle between the three bumps on the port, it was in the right spot, and she had called to Children's to confirm the right length of needle, so as I lay beside Daniel talking and singing to him, trying to keep him calm as he wailed, they readjusted him trying to get the needle to move just enough that it wasn't blocked, to no avail. I finally told them that we truly did not mind if they would rather start an IV in his arm, and she did not pass go. Removed the port access and within minutes, had accessed a vein on his hand and drew labs. Apparently his last dose of chemo really knocked him back, because his ANC was only 550, so he was only a little bit above being neutropenic, but it was high enough that they did not see the need to send us to Children's to be admitted. 

They gave him tylenol, which I cannot do at home lest it mask a fever, and fluids, and over the course of the next five hours, monitored. By 1 am, his heart rate had come down to 148 and his fever was down to 99.7, so they let us go home and continue monitoring him there. Bobby, Marci and Alex had gone home earlier, leaving Daniel and me there, so Bobby and Leroy drove back to pick us up, we got home and went to bed about 2:30 am, and at 7:30, everyone was up and preparing to drive back to Kansas, the weekend of fun over.

I actually feel like this was a big milestone for us. An emergency room visit that did not end in being admitted. We are really getting better! 

He spent the day yesterday getting incrementally more happy. There were a lot of meltdowns and a lot of requests for cheese, but a few times the cheese got nibbled on and then left lying on the arm of the recliner instead of stuffed down immediately. Mid afternoon, I sat him in front of his toys and we "crashed" toy cars, and he giggled, the most amazing sound after not having heard it for a month. Of course, I was supposed to do the playing, he only wanted to watch, but eventually he even knocked a few cars off of his little wooden parking garage Grandpa Kevin built for them, and giggled. That night, I put him in the tub, and on a whim, climbed in with him and drove cars around the edge of the tub, letting them "crash" into the water. And suddenly, instead of crying, he began giggling like he used to. And eventually, began crawling around in the tub, driving his little monster truck up my legs, over my stomach, onto the edge of the tub, around the tub, and then crashing it into the water, which was apparently hilarious. His dad came into the bathroom to hear what this amazing, beautiful sound might be, and Daniel instantly became almost hysterical, crying and yelling at him to go away. Sigh. At least the mood swings are starting to swing up as well as down. I just wish he would have allowed his dad to experience that moment with us. It was the medicine I needed. His dad needs a dose of it, too. I imagine his need to reject people has everything to do with his need to feel in control of the situations he can control, and if his dad had been the one to organically lead him into playing, he would have been his play mate and I would have been the one forcefully rejected.

And this: some of you have been asking what you can do for us. Well. I do not always know how to answer this. Your friendship is enough. Plus, I fear if I just suggest specific things, my suggestions will be so highly effective that nobody will think they are optional and will just jump all over them. But as I was lying in bed this morning before both babies were awake, I was thinking of items I would just simply procure if I had time and/or were willing to spend the money on them. And please know the money that people have sent us is earmarked for just such things as these, and if nobody jumps on them, I will not hesitate to spend it on them. But my mom keeps telling me that this person, or that one, has asked her if there is anything we need, want, desire, think would be helpful, etc. So. This is not a hint or request, but if you are one who is asking this question, here is my list of random items that I think might be useful, given our current challenges.

-Candied applesauce (just want to try it, since he thinks regular applesauce is too bland, but I wish he would eat it, since it's binding, to help stop the ex(crement)plosions. You know the kind- the mennonites make it in gallons for weddings and funerals. We don't need gallons!!)

-Banana muffins (low fiber, low sugar, small, so they can be car and doctor's office food. I'm assuming banana muffins might have the same binding effect as bananas?)

-Freezer meals that have strong, bold flavors that also contain low-fiber, binding starches such as white rice or pasta. He had an adventuresome palate before this, rejecting most bland toddler food in favor of adult meals (his most enthusiastic meal to date meal is baked salmon, sweet potato and green salad with ranch dressing, not exactly a poor man's palate, that one...) and now that chemo is frying his taste buds, he is even less interested in bland foods. Which is a challenge, given the state of his bowels these days.

-Banatrol (this is the most effective thing we have found so far to control the diarrhea.)

-DoTerra essential oil, Serenity blend. This seems to help calm him. I rub it on his feet to help him fall asleep. Contact Kayla Fisher, I believe she has a wholesale hookup with this one. (Update- this one's claimed! You folks work fast! Thanks, Amy!)

-Mobility toys (ie- ride-in cars that encourage pushing with his feet) Now that it is spring, surely someone is selling something like this at a garage sale for a little bit-o-nothin'. Do not, I repeat, do not buy this brand new! 

-Nursing shirts that allow access to both sides simultaneously while maintaining some small amount of dignity, if dignity is even possible considering I am tandem nursing in waiting rooms, on park benches, and single nursing while doing such activities as grocery shopping and eating fast food. They need to be long and loose enough to at least mostly cover my butt, since I wear a lot of yoga-type pants and these are super revealing of the badonk, the derierre, the junk-in-the-trunk with a shorter shirt. (Ah, there is that class you all know and love.) I would like to actually sew a few, maybe, in a loose, split-in-the-middle style so I don't have to decide which to reaveal to the world-ridiculous cleavage or post-partum belly. Something with this concept, but with sleeves:
#1..., #2..., #3...It kinda seems like someone with an hour to spare and a pile of thrift store shirts to mutilate and reassemble might be able to pull this off pretty easily. If someone is feeling crafty, has lots of time, and loves to sew, contact my mom Sandi. She can find you some supplies. Of course, buying new is always an option, but I've never worn a $40 shirt in my life. The thought makes me hyperventilate a little.

-Cloth diaper covers LIKE Blueberry brand (I say like, because that is an expensive brand.) In spite of the chemo pee and poop, I would eventually like to get back to cloth. It is just cheaper. And I scored a whole bunch of soakers/inserts for about $0.40 apiece, as opposed to the $5 or more they usually are, so I plan to throw them out when I get done instead of sell or give them away, just in case any bacterial or chemo residue is left in them. But I feel like I could sterilize the cover, if itdidn't have layers of padding permanently attached inside, enough to resell later. I did sew a bunch before Alex was born, but Daniel is a little too big for them- they will fit Alex for the next year or so. Note- i might have better access to these cheap and secondhand up here in Northern Colorado than anyone else does. I just include it here in case anyone spots some. (If any of you who have medical training or experience can make an educated guess as to how well toxic pee washes out of things or could potentially contaminate the rest of our laundry, let me know. I'm willing to scrap this idea if it's not in my family's best interest! Is dilution the solution to polution, or not in this case?)
-pee pads for beds, recliners, carseats, etc. Doesn't matter if disposible or not.
-and, purely frivolous, but something we wouldn't turn down if someone was feeling indulgent...a yearly pass to one Denver attraction. I have no idea what these cost, and we aren't picky- zoo, museum, aquarium, botanical gardens...just something we can take him to on trips down to Denver so the entire trip can be more of an outing instead of just a no-fun fly down and back trip for a no-fun procedure.
 

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. 

Poosplosions. And kites.

Hello to our dear ones! It's been a few days, I know. They have been busy days. Writing has been moved quite a few slots down the list of priorities. But today, bestie Ginta from Summit County strode purposefully into my house, scrubbed it down, did my laundry, fed me, and strode just as purposefully back out after a whirlwind six hours of cleaning, catching up, holding babies, and girltalk. She's on her way back to Summit County now, and I'm sitting here holding Alex in a sparkling house, listening to the dryer tumble and a baby snore while Daniel sleeps in my very clean bedroom. A break from the constant asking for cheese from that one. A very welcome break. One can only redirect requests for cheese so many times before one just gives in. Not just any cheese, either. Mozzerella string cheese. These stinking steroids are killing us. 

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.

It's all (relatively) better

Another Friday, another trip to Children's, another dose of Vincristine. Daniel acted like he didn't feel great this morning, leaned over in his carseat all the way there and whimpered. We went the entire night last night without a browning of the bedsheets, but he slept restlessly. He nursed obsessively all night, and at 2 am, sat up and began repeating, "Up! Up! Pease? Up!" So i got up and carried him down the hall, following the pointing finger to the kitched, to the fridge, to the egg carton, to the stove. So I scrambled two eggs, which he shoved in his mouth in an alarmingly short amount of time, and asked for more. I dug out some leftover mashed potatoes and tried to fool him by mixing his third egg into a big pile of potatoes, but no such luck. Kid can't be fooled. So. I tried to make it more palatable by putting some ketchup on it. Big mistake. Then we just decided we wanted ketchup. We wanted ketchup on our ketchup. We wanted to dip our ketchup in ketchup. We wanted to eat ketchup with a spoon. Shutting down the ketchup obsession took some doing and a meltdown, which woke Alex, which led to an hour of nursing them both in the recliner while I tried to keep from falling asleep and dropping the baby. No sooner was the house all quiet again then Bobby 's phone rang, and he was up and out the door to work.

We remaining three slept in after our sleepless night until my alarm rang at 8, I scrambled an egg for Daniel, threw on ugly, comfy clothes and shoes and fed Alex, lesson well learned on Tuesday, and loaded Daniel into his carseat before he had a chance to ask for more eggs and suffer the disappointment of being turned down. 

This time was much better. I used the carseat and stroller for Alex, rolling it back and forth with my foot to keep him happy while I held Daniel. At one point, while I was helping the nurse as she accessed his port, the doctor shoved the bottle in Alex's mouth for me. The bloodwork took a fraction of the time to come back as it did on Tuesday, after which they shot a big syringe full of Vincristine into his port, de-accessed it, and we were free to go. The only mishap was a diaper blow out on the way home. Which reminds me...I need to go clean that out of the carseat tonight yet. The diarrhea continues, no diaper able to hold it. I have changed so many soupy diapers today, cleaning from ankles to armpits, I want to cry a little. I just heard him fill his diaper a minute ago. Maybe if I ignore it, it will go away. Buying cheap vinyl recliners and couches was a very fortuitius decision on our part. I can't imagine cleaning this mess out of upholstery, let alone real leather. But our furniture tolerates regular antibacterial wipedowns very nicely. 

His numbers blew us away today. Less than a week ago, his ANC was 38. A normal, healthy person's is around 1,500. 500 was our goal, after which he would no longer be neutropenic (severely immune-compromised). Today it was 829. This basically means that his immunity is all the way up to about fifty percent of what it should be, instead of around three percent like it was. It's not like we can just resume life as normal, but we can stop being completely paranoid and germophobic. His attending told me that this is probably as high as it will ever be during his treatment, because everytime it gets this high they will knock it back again with another whammy of chemo. And there will be times we can't give him chemo because his counts will drop again. But this is an indication of how well the chemo is working. And again, I am so grateful that we live in the decade we do. Modern medicine is going to let me keep my little boy, instead of having to buy a child-sized coffin. Yes, the havoc it wrecks on his little body is terrifying and heartbreaking, but cancer doesn't get to win- he gets to live, love, have his heart broken, struggle to earn a living, and maybe, if the chemo doesnt render him sterile, know this game-changing love for his own children someday. (And if it does, his own non-biological children?) 

And this- hair everywhere. I can't quite bring myself to shave it off just yet, doing so will make this all so much more real, but everytime I hold him, I end up wearing a hair suit. Then it sheds off me into our food, laundry, shows up between Alex's toes, flies up my nose when I have a boy in each arm and no free hands. 

And now, off to inspect the damage caused by this latest diaper fill, plus see about removing and cleaning a carseat cover.

Oh, wait.

Aaand the hair is suddenly coming out. As I was rocking Daniel to sleep for his nap, I began combing my fingers through his hair to get the loose hairs before they shed all over the house. And suddenly, instead of the few hairs I've been getting, whole curls began coming out.

This does not make me want to stress eat at all. Oh wait, yes it does. But I have willpower, so I don't stuff ice cream in my face like I want to. Oh wait...yes. I do. 

But at least I didn't cry. 

...oh, wait. Yes I did. 

Also, in case anyone wonders what three weeks of steroids will do, here is a little before and after. 'Roids are bad, kids. Stay off the juice. I chose a shirtless pic for the after to show the scar where his port was inserted under his skin just under his left collarbone. And the size of that belly. On a little boy who's ribs stuck out a few weeks ago and who's belly button is an innie...

And while yesterday's mail contained proof of why one simply cannot afford to not be insured, in the form of our insurance statements ($135,000 for his first week of treatment, nothing has been processed yet for expenses since then), in today's mail we received love in the form of other people helping us out with the other expenses we are incurring. This both breaks my heart and heals it. I still don't know how to take help, apparently. All I can say is thank you, and I really hope to be in a place to pay it forward someday.

Not exactly Supermom Fancypants

Note before reading: my husband occasionally expresses a bit of embarrassment because this blog so often strays from a reciting of facts and into feelings. "Maybe you women like that stuff, but not everybody needs to know how each little thing makes you feel." This is one of those posts. Also, he reminds me, there are actually Classy People reading this blog. They dont need to know about boobs and poop. Even though that was my entire day yesterday. However, I have decided to not "fix" it because this is actually what it is like to have a toddler with cancer. The devil is in the details. Which, once again, you get uncensored. Cancer ain't pretty. Neither is chemo. No use trying to make it more palatable than it really is. As far as feelings...sorry if they're exhausting. I record these things for me, to help me process, as much as for my Classy Audience, which I occasionally forget exists. 

Yesterday was blood work day. We could have it done in a closer clinic, but we decided to keep driving to Children's until this first, most intensive month is over. That way we'll already be there if it comes back indicating a need for transfusion. So 62 miles down I25, to Peña Blvd, to South 225, to Colfax we fight traffic, just for a finger prick to fill a small vial with blood and test it. You'd think this would be a quick in-and-out, but it took two and a half hours of sitting on an exam table in the clinic room, awaiting results, before we could leave.

It was not my day yesterday, as far as being supermom. The constipation has changed back into diarrhea. There is no in between anymore. Daniel awoke once during the night, crying and straining, and I heard him fill his diaper, so I got up and changed it, rejoicing over a slightly harder mass. Then, in the morning, he got me up (Bobby was at work all night) with another one, this time blowing out his diaper and filling his jammies, soaking the barrier blanket he was sleeping on as well as the sheet and mattress pad. Think melty milkshake. I cleaned him up and threw him in a warm bath with several cups of epsom salt, because I am trying anything and everything I can think of that might help his bottom heal faster. Then, throwing Alex in the swing, where miraculously he was happy, I dug through my closet for any clothing that might fit someone who is that weird post partum shape, when their hips have still not tightened up and pulled in enough that their regular pants even come close to zipping, but the rapid weight loss has maternity clothes hanging saggy and baggy. I located a bag of hand-me-down dress slacks, found a few that were four sizes too large for my pre-pregnant self but fit perfectly around my loosey-goosey widened hips. Then realized blown out tennis shoes did not exactly compliment my professional mama ensemble, so to the garage, where I dug until I located a cutesie pair of wedge heels. And my, didn't I look like I had my stuff together, in spite of overgrown eyebrows, chapped lips, zero makeup and frizzy, unwashed hair pulled artlessly back. Oh, well. No time. 

I got Daniel out of the tub and dressed him in clothes two sizes too large for him so that his shirt would actually stay down over his buddha belly, then fed him insane amounts of cereal and watermelon. And then his dad came home, so in the few minutes we had left before I had to leave for the clinic, he took him on a quick walk around the block in the stroller, hoping in vain to coax a smile out of him. While they were gone, I quickly sorted the clothes flung about the bedroom in my attempt to find something that fit, starting a pile of clothes for the closet and one for clothes that are too stretched out, torn, or stained to wear in civilized company anymore. Instead of feeding Alex. Who I may have momentarily forgotten existed, since he was sleeping so quietly in his swing. When B got back, we threw the babies into their carseats and I took off with an hour and twenty minutes to make Children's, only to have Alex start wailing, starving, not a hundred yards down the road. I dug in my diaper bag and located the hand pump, and baring one boob to the world (or at least whoever could see inside my car at stoplights), frantically began pumping. Several miles later, I pulled over at a filling station and gave Alex the ounce and a half I had managed to squeeze out, which was enough to calm him down a bit, and I hit the road again, a bit more panicked because now I had used up my time padding allotted for bad traffic. Once I hit the toll road, where traffic was less, I got out the hand pump again and, alternating sides, pumped a respectable eight ounces (told you I was a milk cow) and stashed it in my bag for once we got to the clinic with a baby who was bound to be frantic by then. And then remembered that I had forgotten to give Daniel his morning meds, including his very important steroids. I may have, at that point, said some things with quite a lot of gusto and inflection that most likely lodged in my two year old's brain and will come out with impecable timing for maximum parental embarrassment at some point in the future when his pronunciation is crystal clear. There was nothing to do about it at that point but keep driving and hope we got home to give them to him before the entire day was gone.

Luckily traffic was on my side, if not parking once we got there. I finally located a spot in the farthest possible corner of the parling garage, quickly donned my Moby wrap and slipped Alex inside it on my chest, then slid my Boba carrier on my back and flung Daniel into it, grabbed my diaper bag and started walking with only five minutes to make our appointment time. And then, carrying 40 extra pounds of small humans strapped to my upper body and at least a 10 lb diaper bag filled with everything from water and bananas to diapers to four changes of clothes for Alex, plus toiletries for unforseen hospital stays, I fully realized the folly of my shoe choice, especially considering that apparently my feet have gotten a bit bigger and wider with this last pregnancy. Funny how I didn't notice that tottering around the house feeling all pretty and put together. 

In the clinic, we waited about twenty minutes in the waiting room, then they summoned us back to a clinic room where I offloaded both of the babies I was wearing, only to have them both wake up and begin a symphony of wailing. Which was when they took Daniel's blood pressure and found it sky high, prompting them to adjust his dosage of blood pressure medication, since clearly it wasn't working. The nurse pricked his finger and squeezed out a small vial of blood, and then we sat and visited with the nurse practitioner while we waited for the lab to run it. In order to quiet the sad melody my two boys were making, I pulled out a boob and stuck it in Daniel's mouth, and pulled out the bottle and stuck it in Alex's mouth...only to discover the nipple and bottle were incompatible when milk dribbled out all over him, my fancy pants, and the exam table we three were perched on. Since the bottle was a hospital freebie, the nurse practitioner left to get a hospital freebie nipple that would fit it. By the time she came back, I had given up on waiting, bared my other boob, and had both boys nursing, Alex hanging off the table a bit precariously, Daniel doing his best to push him off of me and onto the floor. She left me to carry on, undignified frontal exposure and splayed-out posture on top of a child-sized exam table at odds with my classy pants and cute shoes, and about that time, Daniel saw the bottle and decided he wanted it instead. (Weird, he will usually fling it across the room if I offer it. But sigh. It was his idea. Makes all the difference.) He started chugging the bottle, and this must have triggered an urge to poop, because he started straining...and then his diaper blew out spectacularly. All down his legs inside his cute little khakis. I quickly unlatched Alex and laid him down at the foot of the exam table, sat Daniel down in a spreading puddle of diarrhea, pulled off his pants and rolled them up, shoving them into my diaper bag with a muttered prayer that they not soak everything therein, and used about twenty wipes cleaning him up. I was almost finished when a nurse walked in, then stopped, most likely bowled over by the smell. She whisked the dripping diaper away to a more remote trash can to start the room airing out and offered a pair of hospital jammies, but I assured her Daniel was fine with going pantsless for the rest of the day. We wadded up the soaked paper covering the exam table and replaced it, and because his butt stung from all the wiping, Daniel started crying and wanted to nurse again. And so did Alex. I felt the need to stress eat myself, but settled for chomping hard on a piece of Juicy Fruit gum. Which worked until my angry gnashing somehow caught my tongue and took a sizeable chunk out of it, which bled like crazy and immediately swelled up enormously. And still, the blood work was not showing up. About this time, Bobby innocently texted me, wondering how it was going. I may have replied using a few of the words I had already exposed my children to on the way down. 

The nurse practitioner finally bustled into the room, bearing lab results and an apology for the long delay, and bearing the big good news of the day- no transfusions needed. In fact, his ANC had jumped from 90 on Sunday to 200 on Tuesday. No more bobbing along the bottom. The chemo is winning, the cancer cells are frying and dying, and healthy cells are taking their place, producing disease-fighting neutrophils like they are supposed to. Once they hit 500, we might even be able to relax a tiny bit because he will no longer be severely neutropenic, which means he will not be so critically immuno-compromised. His platelets, white and red cells are still very low, but they are still holding steady, so more proof that the chemo is working and helping his little body win this battle. Not that the battle is nearly over, but the nature of this treatment is that if it were a marathon, and the first three miles of said marathon were a twenty percent grade uphill in loose gravel, we have just passed the halfway point of that first three miles. We know we can slug it out for as long as we already have again, and after that, we still have 23 miles of God knows what ahead of us, but we know that it will level off soon. Then we can put our heads down and put one foot in front of the other and eventually get there. He will slowly start to feel better after this. 

After he had nursed himself calm and relaxed in my arms, both babies finally drowsing, I asked to have his blood pressure rechecked, and it was normal. But did this mean they could allow him to stay on his same dosage of blood pressure medicine instead of raising it based on his earlier, stressed out numbers? No. No, it did not. Grrr. For some reason, this finally officially put me in a downright ticked-off mood. 

I limped myself back to the farthest corner of the parking garage, offloaded two babies into their carseats, noshed on a banana to still the blood sugar shakies, gave the other one to Daniel, flung my shoes under my seat and drove home barefoot, navigating early rush hour traffic back out of Aurora and north. When we got there, Alex was starving again, and Daniel had a bad case of the munchies, so we all ate for about a straight hour and a half, sat and cuddled, tandem nursed, and went to bed early, for a long, sleepless night of explosive pooping. I got him up at 3 am to take his meds, because we have to wait at least ten hours between doses of dexamethasone (steroid) and I didn't get his morning's dose into him until 5 pm. And after that, neither boy slept until the sky started to turn gray, both frantic to nurse, the non-nursing one crying too loudly for the nursing one to fall asleep. I flipped back and forth between the two of them for the rest of the night, until Alex finally got enough that he fell asleep and allowed me to nurse Daniel for long enough that his obsessive nursing finally rendered him comatose as well. And then, in his sleep, he pooped the poop that finally did it- it burst out of his diaper and soaked the blanket I had placed under him, plus the sheet, plus the mattress pad in a big brown puddle. But by then it was morning, so I washed the sheets again, fed him huge amounts of breakfast burrito and watermelon, Daddy got home...and we started another day. But this time, barefoot and in slouchy, ugly sweatpants. Because if I learned one thing from my day yesterday, it's that fancy pants and cutesie shoes can kiss my toddler's melted milkshake diaper. 

When the feels get you

And we are home again! Life is looking better after a night in our own bed. Daniel fell asleep in his crib, which is shoved against our bed with the front rail removed, sidecar-style. And stayed there all night. Even Alex only awoke twice. Sleeping in one's own bed after a week away is amazing. If that week was spent sleeping in a hospital bed between two babies, sleeping between one's husband and the youngest baby in a king sized bed is sheer heaven. As much as I love Daniel, it is just downright awful sleeping next to him right now because of the night sweats. Especially his head. The sweat literally rolls off of him and soaks the sheets and pillow. In the hospital, every few hours the spreading puddle of sweat would reach me and I would get up to rotate pillows, giving him a dry one and leaving the other one to dry out a bit. It was nice to have him in his own bed. I was hoping, since the worst of the heat and sweat is under his hair, that this would resolve as soon as his hair fell out. But grandma Sandi, remembering her own chemo experience, has assured us that no, it doesn't. Then the sweat just rolls down the bare scalp. Awesome.

The steroid situation keeps getting worse, as far as physical and emotional changes. He has fat-man jowls now. His shirts won't stay down over his swollen tummy, it's blue-veined skin stretched tightly and belly button popping out. His neck is almost nonexistent, just a roll between his cheeks and his shoulders, and his eyes are looking squinty as they are squeezed by his swelling face. But these are just the physical changes. His emotions have become as fragile as a baby hummingbird. The smallest disappointment has him falling apart, heartbroken. The smallest frustration has him screaming and hurling food or toys. He doesn't know what he wants, only that he wants it desperately, and life will end if he doesn't get it. When he starts eating, he cannot stop until he is beyond miserable, and oh yeah, the diarrhea stopped two days ago and not one poop since, even though he keeps straining and crying in pain over the impaction that has yet to pass. And added to this is the frustration of not being able to communicate well enough to make us understand the source of his upset. Oh, and have I mentioned that he is cutting his two year molars, in addition to a few white sores developing in his mouth, thanks to the chemo? And the open sores on his bottom that aren't even attempting to heal. So yeah. He's pretty much a ray of freaking sunshine right now. 

This. ^ This is how we roll these days...

Things will get better. We keep hearing this, and know it is true. We are seeing our first improvement in his numbers. His red cells, white cells and platelets are still hanging just above the threshold for transfusion, so really deplorable, but they are holding steady for the first time, which means that his bone marrow is starting to replace them at about the same rate as they are dying off. It will just be a long wait as it slowly starts to replace them faster than they die and slowly they climb to healthy levels. His ANC (neutrophil count, by which immunity is measured) levels went from 38 the night we were admitted, to 50, to 40, to 50, to 60, to 90 the day we we discharged. So for the first time, they have climbed consistently for several days now. Which means we aren't in the clear yet, but we have started to slowly climb out of rock bottom and are now tracking his levels back up, meaning his initial chemo-induced crash, necessary but miserable, is behind us. 

Now that he is home, he is starting to occasionally crawl again. It is agonizing to watch, since he is obviously crawling through a bit of pain, his hands clenched, his arms stiff, with frequent stops to take the weight off his wrists, but it is more than he would even attempt in the hospital. Not that it was easy in the hospital, since his IV pole had to go wherever he did, and apparently having his port accessed and covered in dressing feels funny (I hope not painful) to him, because he kept his head obsessively smashed against that shoulder for seven straight days. And the whole crawling on a hospital floor just seems dirty. Even though they mop it once a day. 

Another thing checked off of the to-do list- after rescheduling three times, we were finally home to take Alex to his two week checkup. Which was actually his four week checkup by the time we got it done. He's an extremely healthy, bouncing baby boy in the upper percentiles in all of his measurements, eating like a champ. 

My parents came up day before yesterday, bearing food from themselves and from Aunt Barb, just in time for a 5-8" spring snowstorm to roll into Denver. They stayed with the two babies for a few hours while Bobby took the mother of his sons out for a steak dinner. We drove back to the hospital in deep enough snow we decided having them drive to Loveland for night could be a suicide mission, so they managed to procure a family sleep room in the hospital. They didn't realize the thermostat was turned down to 40 degrees, so they shivered all night, but it still beat shivering in the ditch somewhere along I25, as could have happened had they decided to brave the roads. They stayed with us in the hospital until we were discharged, Daniel having proved he could drink enough to stay hydrated on his own without IV fluids, then we all drove home, where my dad held and played with Daniel and my mom attacked every surface we touch on a daily basis with bleach, in an attempt to de-germ the house to avoid another bacteria-induced hospital stay. They spent today holding babies, cleaning, and canning a canner full of beef roast for our pantry, then babysat Daniel while B went to work and I took Alex to his appointment, since the waiting room of a pediatric clinic is a veritable gauntlet of potential viruses and infections for Daniel right now. Before they left, Dad mowed the yard. And then, reluctantly leaving their grandson in my care, sure they should be staying to keep helping out, they hit the road for home. 

Since they left, we have been sitting here keeping things low key and conflict averse, and are going on two whole hours with no meltdowns. At the moment, I am typing one-handed while the other arm is encircling a sweaty little boy, his head soaking my shoulder as he watches Thomas and Friends. He was watching Curious George 2 (the movie), which I don't mind so much. It has a nice happy soundtrack and cute narrative. But Thomas and Friends episodes are so not made with adults in mind. Those overly eager-to-please trains are freaking creepy. Speaking of kid's shows, an accidentally watched episode of Caillou had me wondering what that kid's deal is...until it dawned on me. A fat, bald, incredibly whiny kid? Hello! I know a kid on chemo when I see one!

As far as our own mental state, it's okay. It's weird, though...I feel like i have hit a state of baseline where I can bulldoze every new thing without it sending me over the edge. Falling apart is just too time and energy consuming, when both could be put to better use. It's happiness I suddenly can't manage without unbidden and unwanted tears. There was a Mother's day flash mob at the hospital on Saturday. After the choreographed bit ended, there was just a general dance party. I discovered this happening as I was going to the cafeteria, having escaped the room briefly. After a few minutes of watching, I asked myself why I was on the sideline. When the opportunity presents itself to dance, you dance. Except...being in the middle of a crowd of happy, dancing people...maybe it was just the addition of one more thing to process. I don't know. But suddenly the waterworks wanted to start. I bounced and clapped my way out of the crowd, grabbed a salad, and scurried back up to the room where things were normal and familiar. The same thing happened when we went out for dinner later that night, when I left the hospital for the first time in seven days. It was something we would have done before our sky fell. And that made it overwhelming. Plus, having been attached to two little boys 24/7 for the last week in a tiny room, in isolation, being apart from them I felt like I was suddenly missing a limb. And then my touchscreen phone somehow opened a picture of Daniel from last year's ski trip, a happy, healthy little boy, and for a second I forgot where we were and why we were there, and that the picture wasn't current.

And then the tears wanted to start up again. Crying when you don't want to is so annoying. 

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. 

Exceptional genetics

In an attempt at self-recrimination over having missed the signs of Daniel's deterioration, I have been looking at pictures taken over the last six months. Since all of his counts were so very low, the consensus is that they have been dropping for some time, since them dropping quickly would not have led to him still being even as functional as he was by the time he was diagnosed. Plus, now that I have downloaded the Blogger app instead of trying to post to the website, which is extremely limited and glitchy on my iPad, posting pictures is an option. And, of course, the real reason to post pictures is to show off my beautiful child, with his exceptional genetics.

November...

December...

January... (If I look closely at the pictures from around this time, minus the windburned cheeks, I think I'm starting to see a little bit of tiredness in his face. Or maybe it was his big day of skating, skiing, and swimming, followed by the birthday boys (Daniel and godpapa Uncle Leroy) celebrating with cake.)

February...(his color may be a little pale, or maybe it's the light?)

March...(aaand there it is. Any picture taken of him after he fractured his tibia on March 7 officially look sickly.)

April, Easter...(yes, grandma's in her jammies. I'm sure nobody will feel obligated to pretend they mind except for her.)

And of course, the day of diagnosis, April 22.

Now, as we start treatment and our journey back to being a "real boy":

After fluids, before first transfusion, newly admitted to Children's...

After multiple blood and platelet transfusions, before first dose of chemo. The best day so far...

Waking up after surgery to place port and inject intrathecal (spinal) chemo...

Discharged....

At home!

In the clinic, awaiting first chemo...oh, wait, that's Daniel's little brother. But ain't he a doll?

The steroids kick in, and we eat everything we see...

And back in the hospital for the pooping, retaining two extra pounds of fluid, in spite of head sweats so profuse they soak his entire pillow. 

And this brings us to today. All life-threatening complications of Leukemia and treatment for Leukemia that are indicated by his symptoms have been tested for and eliminated from concern. We are left with the Attending's best guess that the diarrhea was something viral (it is slowly improving), and the edema  is due to excess IV fluids coupled with inactivity due to his refusal to bear weight on his legs and feet. It is possible that, even with the swelling, he will be discharged today (which means tomorrow in this new strange hospital reality of ours) if he does ok with managing to drink enough fluids orally once his IV is unhooked. Tylenol and Zofran (anti nausea) perked him up last night for a bit, but not enough to make him want to be active. Sigh. It'll happen. ...right?

Update: now the working theory is that this is all a side effect of his steroids, but the fact that his blood pressure is pretty high, plus the edema, plus the tummy pain has them wanting to keep him here until some of these issues resolve. Tomorrow? Saturday? Guess we'll see. In the meantime, isolation is getting old. Is there a world outside these walls? Or has the rest of the world stopped turning out there and here we are, a lone spinning cog of routine in the machine that is this hospital? Meantime, his constant diarrhea and cleaning thereof has caused skin breakdown on his butt, so he bleeds with each diaper change. And with practically no white blood cells, practically no healing of wounds. We are trying to keep it as slathered with lotion as possible. We have a stoic one, but really, enough is enough! 

The results of his abdominal X-ray just came back showing an impaction that the diarrhea is making it's way around, so that will be fun to resolve and not so comfortable for him. But on the bright side, his tylenol is just now kicking in, he isn't crying, just lying here eating his boogers and watching Frozen. (There is a limited number of streaming movies available on the TV, and we may watch our way through them all yet!)

Today is a bit of a drag, but it helps immensely to know that thoughts and prayers and well wishes are all ours.