Getting Weird

I started a post that outlived it's relevance before I got it finished after our Thanksgiving hospital stay. I reread it the other day and wondered if I should post it, because it will be lost if I don't and the emotions are still a part of this process. Wouldn't want to lose those, right? Right? 

Then, this morning, I had a bit of an epiphany that made me process a little of what I said in it. More on that later. Here it is. 

I had a weird feeling this time in the hospital. Something I've never felt before. Something almost embarrassing. 

I enjoyed it.

That's it. She's officially nuts. Run, before any of the crazy lands on you.

The thought of coming home felt like entering isolation. Sure, 4 am vitals, frequent IV bag changes, frequent monitoring of the fevers were a pain, but they were performed by living, breathing adult humans who were responsible and adulty. Sure, hospital food is not exactly fodder for a discerning palate, but did I have to scrounge in the fridge to come up with a menu, and then go to the work of preparing it, then clean up the mess afterward? And even though I don't really know our doctors and nurses, every few hours I had actual contact, with words and everything, with real, word-using people who possessed fully developed social skills and did not have to resort to communicating by crying and pointing. 

Maybe it was the way it snowed every night, so the lights of the city reflected off the clouds hanging low outside the big window in our room, on the back side of the hospital overlooking the grounds, not the street, parking lot, and cluttered roofs of the front side. It felt cozy, protected and safe. Unlike our new house, which sometimes feels unfamiliar, lonely and a little creepy when B is not home. We were not on isolation, so we could go play in the halls, which were practically deserted, given the low patient room occupancy and the fact that it was over the four day Thanksgiving weekend. 

Now that we are home, though, I am really enjoying it here. There is space. Quiet, aside from the babies, and textiles to absorb their racket. All of Daniel's toys. Netflix on the TV. Floors I feel ok about a baby and a compromised toddler crawling and playing on. Not to mention the glorious, glorious sleep we all got last night. It's good to be here. I don't know why I was being so weird about it. It doesn't feel creepy, just lonely. And I'm running the furnace at 67 degrees without guilt. Being warm makes such a  difference. 

I've been processing the fact that we are almost done with the first phases of Daniel's treatment and are about to enter maintenance. Like leaving the hospital and going home, it's a good thing. And like being discharged, I have to go and be all weird about it. For eight months, and one more to go yet, we have lived and breathed Daniel's treatment. We want to be normal, but what ever will we do with ourselves then? Just...be normal? Without living in Cancerworld? But...this is where we live. It's become familiar. I feel a little panicky about it ending, for some reason. Like maybe even my identity has gotten a little wrapped up in this whole process, and I'm going to have to unravel it now. Like the fact that we have become oncology parents has become a cancer in itself, and has invaded and metastacized to the rest of our identity, and now we have to start to excise it. And now will have no unique experience or perspective to offer, because we will become just as normal as we ever were. 

I am sure, positive, in fact, that ending this most intense treatment will be exactly like coming home was. As soon as we walk through the door into our new, boring, normal life, we will recognize that it feels and smells and sounds...nice. Like we can go to bed and sleep for hours. Like these eight months were a weird dream. Like we can't wait to put them behind us and conveniently forget that every day, more kids are diagnosed, more journeys begin, more lives are shattered. 

****

I think I have finally laid a finger on this troubling feeling I have had ever since that first full day of our new normal, April 23, the day I googled ALL and read, 90% survival rate. There has been a huge procession of emotions through this crazy head of mine, but one has stuck with me and it has created more awkward conversations than I want to admit. Almost always, when people ask about Daniel's diagnosis, I preface it with "just". Just ALL. Just pre-B. High Risk, because we didn't quite hit minimal residual disease at the end of induction, but not Very High Risk, still a great prognosis. I can't bring myself to speak of his journey without bringing up others whose journeys are harder, longer, or have less of a chance of success. I suppose the rest of you have seen this for a long time already, having the advantage of stepping back, scratching your heads, and asking yourselves "why is she even blogging about this if it's no big deal? Why does she insist on reminding us at every turn how much worse it could be?" I can't believe it has taken me this long to recognize a textbook response to trauma. I've spent most of my 32 years navel-gazing, trying to force past the walls my brain throws up to fool me, trying to see what is actually happening in the murky corners of that brain, trying to become as self-aware as it will let me. I read somewhere, once, that people who experience frequent lucid dreaming (where the sleeping dreamer knows they are experiencing a dream and can control the direction the dream takes) are less likely to be fooled by the waking directions their brain takes, to see through the mind's subterfuge and identify the root causes of emotions instead of merely reacting to the effects. I do experience lucid dreams, something that, when it happens, is a trippy, amazing adventure, to experience reality shift and become completely pliable, while also being aware that it is not normal, this is merely a temporary stop in a psychadelic dreamland. Which tells me I should be more adept than a good percentage of the population at not letting my brain hide things from me. And guess what. Still happens. 

But all that aside, the light bulb did not flicker on for me until this morning during breakfast as I shoving a steady trickle of sliced bananas into Alex's mouth and letting the thoughts come through at will. I almost heard the squeal of the brakes in my head. Survivor's guilt. It really might be as simple as that, I think. And it didn't come on gradually, it came on immediately, as soon as Daniel's leukemia was typed as ALL. Before that moment, it had been a horrible question of the type, dreading that it might be AML, that maybe it was some rare, random or even chronic type, but as soon as they told us it was the "good" kind, I got all weird about it. And I have been weird about it ever since. I didn't think it was survivor's guilt, because he hasn't survived it yet. But I don't truly think, aside from the obligatory ifs, that he won't. I started this journey pretty confident that no matter what might happen in the interim, he would not die from this. 

I have read and heard other moms talk about their children's ALL diagnoses being completely terrifying and devastating, of them being overwhelmed by the fear that they might be in the unlucky percentage. I have spent some time there as well. Or maybe not. Maybe I was experimenting with the fear. Or dipping my toes into the freak-out pool. When people compliment my strength, I feel a little squirmy inside, because I don't feel strong. The mothers who are facing terrible odds, they are strong. I am just lucky. Our diagnosis is "diet cancer". Which is also why the freakout happened a few months ago when I realized how quickly and silently a fatal infection, not-from-cancer, can occur. I had not been aware of just how easily that could happen before, hence the immediate crush of what I now see as the guilt complex that we don't have it very bad. 

Of course, it has come and gone. It left during the weeks of steroid hell, when I watched Daniel become a tiny would-be axe murderer with uncontrollable munchies. (Now I'm imagining Jack Nicholson's deranged hacking through the door in his famous "Here's Johnny!" scene, except in miniature, and into the refrigerator.) It left when he was in so much pain, face planting when he tried to crawl, and spewing vomit and diarrhea every time he rolled over. It left every time things got intense. But during the placid times, it came back in full force. It has tempted me to exaggerate our experience, simply to assuage some of the guilt over it not being worse, then, in self-recrimination at having been tempted to do so, I have swung the other way and minimized it. Which I also feel guilty about, because in doing so, I fear I have taken it away from Daniel. I haven't let him be a heroic toddler with a beastly (albeit not the worst beast) cancer diagnosis, I have just expected him to be a dismissive tiny adult. And he has obliged. In a way, perhaps it has served him well, because we have turned every needle poke into a game and he has barely acknowledged the pain. Maybe this is because I haven't let it affect me, being so overwhelmed by how much worse it could be, and he takes his cues from me, or maybe it is because he is the most resilient little boy ever. I don't know why he doesn't cry or fight his port accesses, his blood draws, his ara-C and Erwinia shots. I don't know why, as the screams of other little fighters ricochet around the shiny oncology clinic halls, he tries to grab his $17,000 syringes and help the nurses push their burning contents into his legs, whimpering a bit at the pain, but also, so eager to help. I thought it was just because he is two, and two years olds love to play at being "big", but the more I see other kids react completely differently, I wonder what makes him the weird calm one. The few extended breastfeeding studies that exist make the link between exceptionally calm, confident toddlers and the ready availability of the unique comfort that is boobs, and maybe this is the answer in his case...But I will never have a randomized control group in my little N of 1 trial, and the confounding factors are many and varied. 

As we near the end of his high-dose treatment, I feel a little bit of panic and anxiety mounting. At first I thought it was the loss of microcontrol over his treatment, and that certainly does play in to it. But mostly, I suddenly realize, it is because it feels like we are walking away. We are leaving the brain tumors, the incurable disorders, the hopelessness, the sadness, the kids who are unbelievably brave in spite of terrible odds. We know it is still there, that it will always be there inside those walls, that every day, a new diagnosis walks through those doors, another life shatters. And yet, we are to simply leave and live our lives. We are required to move on, in spite of the fact that we cannot unsee the things we have seen, we can't unhear the stories we have heard, we can't unknow the kids who won't or didn't leave the hospital. 

I read somewhere that a staggering number of patients and families who come through a childhood cancer experience live with symptoms of PTSD. I suppose I can see how that would happen. To live every day with death, to see every symptom as a sign, to be required to overreact to every little thing, lest it become fatal, this is practically the definition of war. I believe we will walk away from this without experiencing panic attacks with every reminder of our experience, but I now see that we won't walk away unaffected. Not only will I always wonder who Daniel would have been, what his potential was, without the massive loads of toxins dumped into his developing body and mind, I will not be able to give these worries the weight they deserve because I will always feel a little guilty that he survived it, practically breezed through it, that we still get to live a normal life, when so many other lives were cut short, changed forever, that some are not walking away. They are limping. Crawling. They will never completely recover. And some parents, parents like me, the only difference being the outcome of our baby's treatments, are leaving the shattered pieces of their hearts inside the walls of that hospital and going home to nothing. To know these people, to be invested in them, to hope with them, cry with them, to realize that you need, truly need them to survive this, and to know that if the worst should happen to them, your wholeness will cast even sharper shadows over their loss, revealing it even more starkly, this is also a unique torture that comes with survivorship. 

As far as news, we have gotten our fourth Erwinia shot (2/3 of the way through this $209,000 round, but who's counting?) Our nurse was awesome and even took the time to bring a whole other set of materials (includng a band aid and heat pack for sore muscles) for Curious George, so Daniel could give him his Erwinia. The gloves were a little big, but George was a brave little monkey. George is still wearing his hospital bracelet and bright orange band aid. We have been lucky this Erwinia round to not be on precautions and isolated in a room the entire time, so we roam the halls and make new friends while we wait the requisite hour after each shot to monitor for reactions. Our newest little friend is Cooper, who comes in every Friday for an infusion of an enzyme that keeps his body functioning. Daniel may have used his sad eyes, watching him and his sister playing with their Christmas presents through the glass infusion room door, to get himself invited in for matchbox cars and cookies. His mom keeps a Caring Bridge site for him, if you want to meet him too. http://www.caringbridge.org/visit/coopertippett/journal/view/id/567b5e9b4db921e17bcdc66c

I discovered his page also contained a Youtube video with Daniel (well, the back of his head, anyway) in it from our band with Brad Corrigan et.al. day last week, I'm reposting it here. http://youtu.be/NkO-Nz7PvvE I couldn't place why Cooper looked so familiar until his mom said they had jammed together last week. 

Merry Freaking Hallmark Christmas

It's Christmas morning. Whatever religion, tradition, vague belief system or lack thereof you subscribe to, don't, or wish you could to make yourself feel better, most of us at least acknowlege this day is a doozy. It's about family togetherness and, almost inevitably, this means making it work. Like maybe you are Jewish but you show up to your Christian family's thing, because grandma will be there and the cousins haven't seen each other in a long time. Or maybe you are particularly upset about the mindless consumerism around you, but you still found yourself scrambling yesterday afternoon because at the last minute you decided to put your own stuff behind you and get the niece something after all, and all you could find last minute was something that was, at best, momentarily delightful. Or maybe you have self-imposed dietary restrictions, but you decide that if it's between your own ideals or your aunt seeing you enjoy her buttery sweet potato casserole, you choose family. Not to mention you spent all day yesterday cooking just so you could bring something you can eat. 

Or maybe you aren't seeing family at all this year. Maybe you've just decided to not do it this year. For whatever reason. Maybe your kid is fighting cancer, and you can't risk anyone making him sick, bringing in one of the many plagues floating around out there in the real world outside the walls of your sanitized little house. If that is the case, you might be curled up in your fuzzy bathrobe right now while a tiny bald tot plays with the toys he unwrapped last night, when he was too excited to wait one more day to reveal the mysteries under the tree (an admittedly ugly, sad looking plastic tree you recently rediscovered stored in your parent's barn, having hauled it up there years ago after you found it in some condo you were cleaning during your Summit County ski bum days, when every December 26, on the busiest day of they year, as you were making like forty beds and scrubbing down twenty-something bathrooms during the six hours between when Christmas guests checked out and New Years guests checked in, you also had to figure out what to do with a half-dozen cheap plastic Christmas trees they had bought and dragged into their condos, and then couldn't fit in their luggage for the flight home, or even drag down to the garage with a "free tree" sign on it). You might be waiting for the rest of your family to wake up, although you aren't sure why, because then you will have to stop writing the longest parenthesized sentences known to man and actually do something, like make breakfast. Because even though you spent the entire day cooking yesterday with the proclamation that you would not be lifting a finger all day to cook or clean and you have an entire fridge jammed with delicious leftovers, that didn't include breakfast. Obviously.

Or maybe you know, or suspect, or have it on good authority that this will be the last Christmas you will spend with your child. While other families create traditions meant to carry into the future, Christmas Eve pajamas, milk and cookies for Santa, another year printed on a silver dollar in the toe of a stocking, you are simply trying to breathe and not blink, trying to save every moment and not miss a single thing, because this moment, right now, is what you will return to again, and a million times again, during future Christmas mornings when there is a jagged hole through all your favorite traditions where your child is now. 

Or maybe that Christmas morning was a year ago today, and you had no idea. Or you did, and now you are where you so dreaded being then. Now you are trying to decide if you can even face your extended family. Or do any of those things that once included a little person who was your world. You are wondering if you have forgotten any details, holding them and counting them and seeing a small face in your mind as you imagine it would be, older than the last memory you have of it. You are just trying to remember to keep taking breaths. Putting one foot ahead of the other. Pretending to be okay for those around you, who are pretending for you.

I admit it. I am not the biggest fan of this day. It contains too much pressure to make it a freaking Hallmark holiday. It is so much focus on biological family, when everywhere, family is what you make it. So much focus on the kids, when so many people have their hearts dangling by razor wire because of their children. Children they could not have. Children they could not keep. Children who were conceived but not born. Children who were never able to help decorate a tree. Children who loved everything about the holiday, and now it isn't the same without them. My heart is with these families today. I ache for them. I know they wouldn't want anyone else's holiday to be less magical because theirs is one of the hardest days of the year, but knowing they are out there makes me slow down. It makes me breathe and not blink, trying to save every moment and not miss a single thing, because this moment, right now, is what I will return to again, and a million times again, during future Christmas mornings when my own little darlings are gone. Whatever takes them from me. Best case scenario, age. College. Partners, their own busy lives. Worst case, tomorrow I have no promises that I won't be facing the future without them. They only time I have to hold them is now. If this moment passes me by, it may never present itself again. Time might see them grow into wonderful adults, but it will also take them away from me.

Christmas was good, growing up. My Grandma Christina saw to that. Not to say I didn't have two other grandmas who didn't also make it great, but I spent the entire season at Grandma Chris's house. She created a big extended family that made a point of getting together for the holidays. As soon as the last of the leftover thanksgiving pie had been eaten, I helped her get out boxes full of dainty dishes holding cinnamon scented votive candles, tack long pieces of bright yarn across walls to hold Christmas cards, even make popcorn garlands and bring in pine boughs to decorate with cinnamon sticks, dried orange and apple slices. I marveled at her heirlooms that only came out for the season- delicate table runners, depression glass bowls to be filled with the peppernuts and other tasty holiday dainties we would make. My grandparent's Christmas table was not only gathered around by family, but by community, their intentional family. The neighbors (in rural Western Kansas, anyone who shares a telephone prefix is a neighbor) who had no family of their own, friends who knew no invitation was needed, visitors who just happened to be on their way through, young people from Europe, spending semesters working in the Kansas farm industry. It was always chaotic, and it was chaotically normal for me. While for some families, Christmas was a time of exclusion, of withdrawing and focusing on their own families, ours was all about inclusion- making sure nobody was alone unless they chose to be. Providing festive cheer for anyone who might have a hard time providing it for themselves. Grandma's own childhood was a lonely one, a connundrum of being both a bit of a celebrity and isolated by her own parent's issues in a community that valued proper appearances. They were like a Pennsylvania Dutch version of the Von Trapp family, known through the Holdeman Mennonite congregations of the U.S. for their musical talent as they traveled the country giving singing lessons and demonstrations. The shared experience of minor celebrity did not hold the little family of four together as her parent's marriage fell apart, and she and her older brother were left dangling, unsure where they fit in. At 17, a young beauty with enormous light hazel eyes rimmed with long, curling lashes (the same lashes lying over her great grandson Alex's cheeks as he sleeps on my lap), she met a 24 year old farmer, and by the time she turned 18, she was married, pregnant, and worshipped the ground he walked on, as she would the rest of her life. As she made her own life, she did everything she could to make sure anyone at risk for feeling the way she had growing up was tucked under her wing, fed a cinnamon roll, and forced, against all of their intentions to the contrary, to smile, to join her as she sang carols and mashed vats full of potatoes, to experience the warmth she radiated. 

The carefree Hallmark holidays ended, eventually. Their oldest son, my uncle, was killed in a car accident at 33, leaving a wife, a four year old, a two year old and a three week old baby. That same year, the wife of the elderly childless couple who had spent so many Christmases with our family was mauled to death by a mule (because this apparently still happens in Kansas). The next-oldest uncle's family, by the time carseats were becoming mandatory and they had son #6, stopped coming down from Northern Idaho for special occasions. The family scattered. By the time grandpa was diagnosed with stage 4 adenocarcinoma spreading from his stomach, we had committed to spending Christmases working in the ski resort lodging industry, which is a jealous mistress at every single holiday, no matter the season, but especially Christmas. They tried, they still invited their intentional family, but the big, chaotic Christmases of other years didn't happen anymore. 

Grandpa was 67 in January 2004, grandma providing palliative care for him iside the home they had built together. When she called my mom to drive nine miles out to the farm one night because grandpa seemed to be choking, my mom sped through the night with plans of suctioning and CPR if necessary, but arrived to find him lying in Grandma's arms, no longer breathing. The family came together to mourn and to bury his embattled body, to provide comfort to Grandma, then returned to families and responsibilities. My parents brought Grandma to see us in Colorado that year for a late celebration after the Christmas and New Years rush died down for us. She did all the things she would have done other years- made peppernuts and date wheels, cooked big meals, sang her songs, and we tried to make it merry in spite of her having been recently widowed. She was young yet, at 60, her hair only graying during the two years she and grandpa had faced the loss of his future. She went back home to try to put her life back together, and during a snowstorm one week later, as she stoked a fire in the fireplace to chase away the loneliness and gloom, she just...stopped. After a long day of trying to call her, my mom drove the nine treacherous, dark miles through the snowstorm to find a dark house, cold ashes, and her with the fireplace poker, lying in front of them. Maybe it was a sudden, catastrophic stroke. Or a massive heart attack. Maybe an aneurism burst. We didn't investigate. We were too tired, too flat. We just dug another hole in the frozen dirt beside the fresh mound Grandpa slept under and lowered her down, the music suddenly, for the first time in all of our lives, silent. We wondered how we could possibly feel anything more, and simultaneously less, than we already felt. 

After she was no longer here to even attempt to bring her children, friends, and stragglers together for the holidays, the traditions died as well. Some of her remaining four children began traditions with in laws and no longer had time for our family. We scattered from literally one coast to the other. For Bobby and me, Christmas was a nightmare of customer service. We occasionally tried to make it special, but often, we were all just too exhausted and sick of people to even finish dinner and gather around the tree Bobby's sister always insisted on putting up. Having grown up with no mother, their own mom having died of metastatic breast cancer when she was nine, she took it upon herself to provide her brothers with a merry Christmas regardless of the circumstances. 

There was the Christmas almost five years ago, when my own mom was bald and exhausted as she fought the fight of her life against breast cancer. I don't even remember it, but it must have happened. We must have done something special. Surely we did. Surely we didn't make her experience that one alone.

Then we left Summit County and the ski lodging industry. In the last three years, we have tried to salvage the holiday. We have no traditions. We have no particular memories, the Hallmark Christmases we both have had are so far in our past they do not define the holiday for us. Every year, about a week before the 25th, we suddenly decide maybe we should do something after all, and we cobble something together, and we call it merry. Bobby's brother, sister in law and the little cousins don't come anymore, so we do our best to make it merry with Bobby's sister Marci, my parents, and usually, my mom's brother Leroy and his wife, Mary, whom we have named our babies' godparents. Except again this year, cancer has messed with Christmas. It's a good thing we have no traditions and don't really take it very seriously, because we might be really bummed by the fact we can't see anyone we love this week. As it is, we know the reunion is coming. We just have to rebound from this round yet and start Maintenance.

So that is the long version of why I don't particularly care much about Christmas. I love time with my family, but who needs a holiday to have that? I love things like crackling fires on wintery nights, but Christmas doesn't have a monopoly on that. And who says gingerbread houses, lights on trees, and ridiculously sweet treats are a Christmas thing, and not just a winter thing? I am okay with our loved ones buying my children toys for under our pathetic plastic tree that contains exactly four ornaments, but we didn't feel like we could afford to get them anything this year, since we are as solvent as we are because of the support of loved ones. Instead, we have focused on the pretty lights, the food, playing together as a family, the fact that Daddy is home right now. We don't, and in the future, probably won't do things like elf on the shelf or Santa. I get the whole making childhood magical thing, I do, and can respect others doing these things for their kids, and understand the thinking behind them. But we are still searching for those "us" traditions, and they are not it. The theme of our lives, at least the way I try to remind myself to live it, is about finding the magic in the ordinary, instead of creating it in the extraordinary. Belief in mythical characters doesn't seem essential to a happy childhood. Being completely honest with the small, inquisitive minds, and then being there to help them process, this feels more authentic. Which is why the whole "Christmas spirit" thing seems redundant. If we can't live the rest of the year with goodwill, seeking peace, having all those sickening Hallmark moments, finding the magic, celebrating the obstacles behind us and noting all the good things that have come our way, what's the point of going through the motions once a year? And as far as many of those things that are uniquely "Christmas", I never did them. We did food, and then more food, but not stockings, trees, pajamas, nativity scenes, Santa, or Christmas morning. I am only now learning about them as other families talk about them. I wish I were kidding.

Now as far as the religious part of it, that was a huge part of my childhood Christmas experience. Hymns and carols, the Biblical Christmas story, all that. As we struggle to find our own way to present these things to our own children, being honest about the things we don't know, being sensitive and respectful to the many, many different beliefs others have, we have no traditions yet. Maybe someday. I don't actually feel much pressure to "keep Christ in Christmas" or fight against some sort of imaginary "war on Christmas" because, well. We appropriated it first. We invented adopting holidays and then being freaked out that anyone else might do the same. I think we all know by now that it isn't actually baby Jesus' birthday any more than it's the day a jolly old white guy pops out of the chimney and grants material wishes based on the past year's performance. What began as a celebration of the winter solstice has come to mean so many things to so many people. To us, it is a great time to recognize that another year was ours to live. Winter is half gone, and spring is coming, if not visible yet. That everything passes.

And that was all she wrote, at least on Christmas day. Continued December 26:

Apparently, as evidenced by all that stuff I wrote while propping my feet in front of the fire yesterday, tangents happen in the absence of real news. It has been peaceful here at our house. Bobby turned down the option to go to North Dakota to work through the holidays, which also means no money. We did a lot of talking about it, and finally decided that if a penny saved is a penny earned, a penny not made is a penny lost, and we decided to simply make monetary payment in exchange for time together as a family these two weeks. This is our big investment for the year. Every dollar lost to time spent with each other through hospital stays, clinic days, time in our house, gathered around the fireplace, playing with new toys is simply a payment made to someone else who will earn it in our place, in exchange for us being able to stay in each other's presence. And there you have it. Classic freaking Hallmark, isn't it? 

We are almost done with Delayed intensification. I know, it seems like we barely started. But the last high dose chemotherapy this phase would have been PEG-aspariginase on Wednesday. Except that, due to D's inability to tolerate PEG, instead of one IV infusion, we have to get two weeks worth of shots of Erwinia aspariginase. Our schedule is normally Mondays, Wednesdays and Fridays, but due to both Christmas and New Years falling on Fridays this year, our schedule is Wednesdays, Saturdays and Mondays. Not that we mind going to the hospital on Saturdays. It's actually a bit of a bonus. It is quiet. The clinic was silent, immaculate, and deserted. They unlocked it for the four patients today who could not have their chemo schedules rearranged, we all arrived about the same time, a few nurses came over from inpatient to administer the drugs, and we just had to kill an hour afterward in the deserted halls while monitoring for reactions. This time, we opted out of messing up a clean infusion room, knowing we usually prefer to roam the halls anyway. Daniel became an ardent admirer of a 15 year old girl named Aliza, also there for Erwinia shots, who also opted for the infusion chairs beside the big windows instead of a private room. They share a diagnosis, except hers is more intense because of her age. They got their shots together, cheering for each other's bravery. Daniel watched her receiving hers, then helped her rub it better, and pull her pant legs back down to cover the bruises. Then she read books to him. New best friends. 

The lack of people in the clinic halls meant Daniel and Alex had free range of them. I even allowed Alex to crawl on the floor, since it was freshly mopped with very few shoes walking on it today. And as an added bonus, on top of our peaceful hospital day, the cafeteria had set out free fruit, veggie and cheese platters as a holiday treat in the dining area downstairs. We helped ourselves to delicious, expensive fresh fruit like we owned the place, practically swooning over it. Monday will be far more chaotic. 

After Erwinia ends, it usually takes two and a half to three weeks until counts hit nadir. And another week until they start to recover. So, although we are a week and a half from done with Erwinia, we are five or six weeks from counts rebounding. Daniel is looking pale to me. Maybe even a little yellow. His lips are pale pink. His cheeks still have a slight blush, but no glow. He has bruises everywhere. I know both his platelets and hemoglobin are lower than is healthy, but likely are not critical. We won't get more bloodwork until next Wednesday, but we don't need it to tell us everything is compromised. We are still just hanging out, not going anywhere except the hospital, enjoying the quiet and willing things to stay stable. Well. Enjoying as much quiet as the volume control of two babies allows us.

On January 29 (ish), Bobby reluctantly starts his next new work adventure. He has been turning down offers of a promotion to Field Coordinator for several months already, but finally caved. He really doesn't want to have to be in a supervisor position. He would rather just hide in his truck, where nobody bothers him. Especially since the pay raise does not really compensate for the added headache. However, the position also comes with a guaranteed schedule. Four days on, a day and a half off, four nights on, a night and a half off. Not only will he know the hours he will need to be there, he will know the days he will have off. We have not had more than five minutes lead time on this information in the last year and a half. I am so grateful to him for doing this for us. Exchanging his nice, warm, clean truck for a job managing people, which is his nightmare, not to mention a twelve hour shift on his feet, walking 9-10 miles per night. Again with the adulting. Why are the options never good ones?

Much love to our dear ones. I hope your holidays were wonderful, and that you didn't blink. 

First lasts

Hi! Welcome back. We have been home from the hospital eight days now, and Daniel's counts have climbed high enough to start our next round of chemo. Our last round before maintenance. It feels...I haven't decided. When we were at the beginning of his treatment, looking forward to where we are now made the next six (which became nine) months seem like an eternity filled with uncertainty. Now it is our story. Now we no longer wonder what will happen, we know what did happen. Already, our memories are beginning to betray us, to paint the last eight months in the colors of our choosing. Definitely rosier than when we were going through them. I remember the smiles, and only my photographs and written words really remember the relentless diarrhea, the 'roid rage, the countless times I cleaned vomit out of the carseat, the sheer exhaustion of the simultaneous new cancer diagnosis and new baby. I am glad I wrote it all down in the moment, because reading back, I already find a different account than the one in my head. I remember things much more simplistically than I recorded them. And in the times where there are no happy memories, I sort of just have...no memories. The mind can be such a crazy optimist, at the cost of keeping it real. 

We are starting to hit our lasts. Our first last was our last doxorubicin infusion. Our second last was today, when he finished his last cyclophosphamide infusion. Our third and fourth lasts will be this month, when we have our last cytarabine and our last erwinia. Of course, we still have some firsts ahead of us, too...we start our first thioguanine tonight, and we have yet to experience oral methotrexate, which we will take during maintenance. 

I met a newly diagnosed family (because it is the family that is hit by the diagnosis, not just the diagnosee) today, and as we were talking, I was thinking about all the things I wish I could tell eight months ago me. I feel like I am finally getting this whole pediatric cancer world figured out just as we no longer need it so badly. Thank goodness, but also...I feel a little like I've earned a degree I won't be able to put to use. Hey. Nobody said it had to make sense.

So. Dearest bewildered, leaky, post-partum, milk-spraying, maternity pants wearing, unshowered, refusing to cry eight months ago me. Listen up. Because I'm about to drop some knowlege on you.

Take real pictures. Not just of the one time in twenty four hours you see your little darling grin a little, but of your faces, with your eyes that look kinda like the holes the dog leaves in the snow when he pees. And of your kid who looks like Jabba the Hut on meth. You aren't taking pictures to celebrate where you are now, you are taking them to celebrate where you will be. If you don't take them, your memories can't be trusted. You may not want to remember now, but you will. You can't measure your own strength if you don't remember how heavy the load was at this point. Although you think you could never forget, you will. Surprisingly quickly. 

Make friends whenever you can in the hospital. This guarantees several things- you will find people who have it so, so much worse than you do, you will feel like a whiny little amateur when indulging in your own pity party. You will find people who know ex. actly. what you are going through. You will realize that all sorts of people have sick kids, including people you would not normally be friends with. And then you will put that thought right out of your mind, because the kids are all that matter. You connect over the kids. You realize that some adults make it about the kids, and some make it about themselves, and you decide to always, always be the one who makes it about the kids. And inevitably, you will meet a family with a kid who is going to die. Once you become emotionally invested in a kid who won't grow up, everything else seems pretty manageable. Nothing about your living children is too big of an inconvenience. Making friends with people who have sick kids will be the most comforting and potentially devastating gift you can give yourself. But even if you end up wrecked and grieving with them, it's also a gift to see the world through the lense of a family whose world has crumbled. It's uncomfortable, but also, can cause such deep gratefulness for the gentle weight of an alive, if sick, child. For the times stuck in a hospital room that are also times spent together. For every "bad" day spent in their wonderful presence.

Take to the halls anytime you are not on isolation. Because you are only a cough away from being put on contact precautions at any time, and unable to leave your room. If you are not on isolation and counts are high enough and you have permission, go outside. Go eat in the cafeteria. Pretend to be normal. You can put an IV bag and pump on the wagons provided by the hospital and pull it pretty much everywhere on the campus. 

Use plastic totes instead of suitcases. So much easier to store in the shelves in the patient rooms. Easy to wipe down. 

There is no reason why you, the parent, cannot weigh diapers, record intake and output, draw up pee samples to send to the lab, get your own water, bathe your child yourself, make their bed with new linens daily...honestly, anything that doesn't require assistance or a four year degree plus special pediatric hem-onc training to do. The nurses pull double duty as your own personal waitstaff at the hospital's request as the hospital seeks high patient satisfaction and understands that even with stellar care, if a patient is feeling petty and put-upon they won't give good survey results, and it's tempting to think that, for $7,000/night, they can do just that...but seriously. They are there to do the stuff a parent isn't qualified to do. And it doesn't take a degree to run a gram scale and write down amounts on a whiteboard or keep a toddler from soaking his port access in the bathtub. Don't worry about overstepping. Just ask if there is any reason you can't do yourself whatever it is they are doing for you. There might be, but there might not be. The nurses are fair and wonderful people, but also stressed out humans who can't find the time to pump, if breastfeeding their own young, eat, or even pee sometimes. 

Certain menu items come in bigger portion sizes by default, making it easier to stretch a child's tray to feed multiple people. Quesadillas. Sweet potatoes. Side chef salad. Mixed fruit smoothie. Milkshake late in the evening (it will arrive completely melted if you order it earlier in the day. Just one of those mysteries.) Cutie oranges instead of a banana, because oranges come in twos. Also, corn chips are your friend. Keep several unopened bags in your hospital tote. Because you can order refried beans, nacho cheese, and salsa from the kitchen, but not chips, at least not if your child is on a toddler diet. And chocolate. Or twizzlers. Or whatever your go-to stress food is. Keep it packed and ready to go. (Raisinettes, in my case.) 

If anyone wonders what to get you for hospital creature comforts, tell them you would like a Yeti Cup. This is a not-exactly-cheap, but extremely insulated cup that will keep water ice-cold all night long. You can also make sure your hospital bag includes chapstick and vaseline (because the dry hospital air will actually crack the inside of your nostrils and it's gross to stick your chapstick up your nose), fingernail clippers, tape, and scissors (you'd be surprised how often you need scissors. Mostly for opening popsicles, but also for cutting medical tape and various other projects). And a non-hostile, somewhat silly laminated sign to tape to the outside of your hospital door to inform the staff of sleeping babies. This says, "We're really nice people and know you have a job to do, but on the other hand, if it can wait...." And then take the sign down as soon as naptime ends so they actually take it seriously. 

And last but not least, keep yo freaking laundry done! Because it is stressful enough waking up in the middle of the night to a raging fever and needing to pack and get out the door and into the emergency room in a hurry, without having to realize the only pants you have that are not crumpled in the laundry under a wet, stinky towel are three sizes too small, have a gaping hole in the butt, are missing the drawstring and fall off several times a day, or that even those poor excuses for clothing are dirty and you have no pants at all to wear, let alone pack for a week's stay in the hospital. Let's face it, you are going to get weird looks in the hospital sporting the fierce black pinstripe slacks you haven't worn in ten years, purple flip flops, and a shirt that has some name brand from your teenage preppy years in big letters across it, covered in paint splatters and about two inches short of meeting your pants. So not the way to be taken seriously as a parent on top of their child's medical needs. 

Edit: my oncomom friend Heather says she would add two things to this list- one, ask. For anything. Extra time off chemo until after Halloween? Might be impossible, might just be something they are willing to allow. Because after all, going into Halloween already queasy really limits the amount of candy-induced sickness a kid can create for themselves. The doctors aren't monsters, they can occasionally share the privilege of making a kid vomit with things like fun-sized snickers. (She didnt go into a candy tangent while offering this advice, that part was me.) But for real, the worst that can happen when asking for anything and everything hospital-related that might make life easier is they can't accomodate. And two, order food before your little darling gets hungry, it takes awhile to receive it. You can call the kitchen from your cell phone so you don't even have to interrupt hallway funtimes to order the noms. Actually, in CHC, you can call any hospital extension from your cell phone. Just dial 970-77 before the five digit extension number. 

And while I'm editing, here's another. Shower as early in the morning as possible. 7 West has a hot water shortage. Also, the white blankets in the blanket warmers are so much softer than the scratchy green ones in the hallway linen closets. But actually, just smuggle your own soft blanket in. Actually, smuggle two. Because yours will probably get barfed on. And then try to remember not to absent mindedly toss it into the hospital laundry bins along with the barfy sheets. That stuff goes to an offsite laundry facility with a several week turnaround and it's practically impossible to get it back. I'm still mourning the loss of the softest, snuggliest baby blanket ever. Curious George accidentally went into a laundry bin once, too. Thankfully, he was missed before the laundry was taken by housekeeping, and retrieved. That was a narrowly averted disaster. 

...And now it is several days later. We have had two days of high fevers. Although these necessitated trips to both a local ER and Children's hospital for assessments and cultures, we were able to stay outpatient because of his high counts so far. His platelets and ANC won't hit nadir (lowest low) for another week or two yet. The fever was probably a side effect of chemo, but because nobody can know that for sure, we still have to treat it like a "real" fever, indicating a possible bacterial infection. And it certainly brought Daniel to a halt like a real fever. He is usually somewhat fine, if subdued, until his fever climbs over 103. Above 103, his heart rate goes way up, his breathing gets fast, heavy, and grunty, he shakes uncontrollably and vomits. It was a little scary for us this time, since every other time he's had such high fevers we've had nurses to help us assess him. This time it was just us.

By today, it has dropped steadily down to 99.9. Since he is still getting daily doses of ara-C, the chemo they thought was the culprit, I am thinking maybe it was the Cytoxan, the high-dose chemo he had on Monday. Fever is a less common side effect of that one, but far from unheard of, according to the Internet. Happily, we won't get to test the theory with his next Cytoxan infusion, since this was his last one. Ever. Boom. 

I hate the weeks I have to give him his ara-C shots at home so much. They sting him pretty badly, judging by his whimpers. These shots are the only time I  have to personally hurt him. The rest of them, the nurses administer while I am the one to help him feel better. We do have the option of an insuflon, a small catheter into his leg to inject into to save the pokes, but that means no baths and the sting of the chemo in his subcutaneous tissue is in the same spot day after day. And as much as he hates his shots, I think he would hate losing his bathtub splash time worse. 

I seriously love that little freaked-out-but-determined face. 

It's been a week full of a lot of mixed emotions. So many reminders of why I should never, ever indulge in complaining or wallowing, because it could be so much worse. So many kids have it so much worse. The mom of a teenager with Ewing's Sarcoma (rare bone cancer) laughed ironically with me the other day when she asked what Daniel's diagnosis was and I waved dismissively and said, "Oh, just ALL." And we talked about how much has had to change for us, to use the word "just" before my child's cancer diagnosis in a completely non-sarcastic manner. 

Those first few days after Daniel's diagnosis, I referred to Daniel's type of cancer once or twice as "pretend cancer". Our doctor looked at me strangely. That feeling has somewhat stayed with me as I've been rattling around in a world filled with infants facing truly terrible odds, even after years of chemo, brain tumors that very few have even heard of, let alone know how to treat, kids spending months in isolation after transplants, kids who are paraplegics. No, it hasn't really felt like we are pretending anymore when he has been at real risk for life threatening complications, but I still feel like we have "diet cancer". "Cancer (light)". Just one calorie, not quite the real thing. When Daniel's little friend Simone suddenly died not-from-cancer, I suddenly had to face the reality that even diet cancer can have a devastating conclusion, but now that that's been dealt with, or perhaps just neatly compartmentalized, we are back to feeling so grateful that we have dodged so many bullets that so many others were not able to. 

Not to mention the non-cancer cruelty we have been witness to this week. It's been a week of yucky reality. Especially with yesterday's heartbreak of Daniel's aunties who were so excited to bring their own baby girl into the world only to receive the news that the baby girl has such a devastating condition the pregnancy has to be terminated now, at twenty weeks, unless she dies naturally very soon. I'm struggling hard with this. I know the feeling of a suddenly, unexpectedly empty womb, but my experiences were after weeks of loving and excitedly planning for those babies-who-weren't, not months. Not after a nursery was created. Not after they had a sex and a name. And they left my body privately and naturally, without cold, harsh medical procedures. I simply cannot even process what this beloved couple is going through. But I'm angry.  When did life get so unbelievably cruel? How can so much pain exist in such a beautiful place? Why does choosing to love always mean so much agony?

On a happy note, Bobby's cousin David has nominated Daniel as a guest of honor during his Marine Corp motorcycle club's annual cancer awareness poker run. They let us know the other day that he will be one of two kids with cancer there that day, being shown a spectacular time by the riders. This happens in April, which is exciting because by then his counts should be high enough to attend, and seriously, I can't think of anything he would like more than a day with a whole bunch of guys and their shiny, loud motorcycles. Although he will be allowed to have a motorcycle himself some day over my dead body. Just saying. After I kept him alive through cancer, I'm not about to let him straddle a whole bunch of horsepower with my blessing. Not until he proves to me that his prefrontal cortex is fully functioning and he is capable of a non-reckless decision making process. 

And now, bath time is over. Bath time is my time to check out. As long as I am in the bathroom, these two can splash without parental interference, and I am free to write, sitting perched on the toilet lid to referee if needed. Or pull little heads out from under the water should they become too submerged. This is also the time we video chat with grandpa and grandma. They haven't seen their grandsons with clothes on in weeks. But they catch up with each other while grandma and grandpa cook dinner and the littles splash and show off their bath toys. 

Bobby is back home now from New Mexico and by some strange blessing, working locally again, we will be able to bring Andy the Dog home soon, and life is feeling pretty darn complete. Here's hoping yours is too.

Stellar parenting

Hi, and welcome! I know I tend to post more when inpatient. I'm only chasing these two around a room, not a house and yard. I can multitask better. Plus, no cooking or laundry, minimal cleaning... It's almost exactly like a luxury resort vacation, except instead of a pillowey bed and a swim-up bar, you get a backache, sleep deprivation, and kids who are increasingly more frustrated, pent-up and desperate to get on your very last nerve. 

Daniel's counts weren't bottomed out yet when they discharged us last time. Three days of an upward trend had everyone thinking they were, but a week later I went to the local lab to get a CBC to see if his ANC was over 750 and his platelets over 75 so we could start our last month of chemo before he hits maitenance. I was betting we would be right around 750, maybe a little over, maybe a little under. I sat in the packed waiting room for twenty minutes with all the sick zombie people, willing the germs to stay away from us and counting on his numbers being high enough to enable him to fight off all the sinister viruses flying around us. After getting the blood draw, on a whim, instead of turning toward home I turned toward downtown and drove to Fairgrounds Park, the park with the most fun all in one spot. Big sand areas, multiple play areas, all sorts of places for kids to leave their plagues and germs. I was hoping it would be deserted, but there were actually quite a few people there. But I let him play anyway. Stopped him from licking his toy car after he unburied it from the sand. Saw him lick the slipper slide. Wanted so badly to let him play with the little girls his age. After all, how low could his counts be after all this time of having continued their upward trend?

Turns out, pretty low. That afternoon, our nurse called to tell me his platelets and hemoglobin were both excellent, but his ANC was 31. Keep him away from other kids, she said. Be extra vigilant with hand washing. Don't let him be exposed to anyone who is sick. So then I felt like I was pretty much winning at parenting a kid with cancer.

I freaked out a little. Scrubbed the house down, got extra crazy about germ patrol, and sure enough, a day later the low grade fevers started. It took three days of bouncing around in the monitor-only range (99-100.4) before it finally broke 101 early Thanksgiving morning and we had to take him in. I woke up anout three am to a hot little body sleeping next to me, and I knew he would be over 101. I just didn't want to have to get up and deal with it. So I lay there between my sleeping babies, gathering my energy for about an half hour, then reluctantly got up and took his temp with the new ear thermometer Bobby had bought the night before so we could stop the axillary temperature taking fight. 102.1. 

Since Bobby would be needing to leave the next day for New Mexico, I drove down to Denver myself with the two babies over icy roads, got to the ER about 6:30, and was admitted by 9:30. Daniel's ANC was zero, so they started antibiotics, since his body has no way to fight a potential infection, thus not affording us the luxury of waiting 48 hours to see if his cultures grew anything. Bobby got here around noon, and we had a lovely Thanksgiving here in the luxury suite. Again, with the new post-cancer definitions. We would not have defined a day in the hospital as a lovely day in our former life. But now that we are more aware of the alternatives, it is much more easy to be thankful for the fact that we are here together. Safe. Cared for. And did I mention together? Who wouldn't trade in all of the standard Thanksgiving traditions for the ultimate blessing of the presence of a loved one? Only every single person who has lost someone they love.

Yesterday morning the resident assessing Daniel heard some crackles in one lung. Fearing pneumonia, they put him on droplet precautions, aka isolation, lest he start to cough and spread a virus through the halls outside our room. Bobby left for Carlsbad, New Mexico, questioning with every mile he drove further away from us if he should even be going, lest Daniel take a turn for the worse. With an ANC of 10, it was hard to make the call- we need the money, but with counts this low, our every move is stalked by the specter of sepsis. Ten hours away is not a great place for a daddy to be if Daniel suddenly ended up in the PICU. I finally made the decision for him- we can't live putting everything on hold, expecting the worst. And I own a pair or two of big-girl panties by now. Whatever happens, I will be wearing them. I won't just fall apart. At least not in the moment. 

By last night his lungs were sounding clear again, so this morning they removed the droplet precautions and let us out of the room. We didn't let the big, heavy door hit us in the behinds. We hit the halls and ran up and down them, me with Alex on my back, pushing Daniel's IV pole. We played the color game, me naming the color of every thing Daniel touched, then, the next round, asking him which colors they were. We counted the red cars in the parking lot below. Then Alex fell asleep on my back, his head rolling around at dangerous angles, so we came back to the room to try to lie him down, which was a spectacular failure. But then Daniel heard a little girl shrieking and playing in the hall and desperately wanted to investigate, so back to the halls we went, where he and the little girl made laps, she on her tricycle, him pushing a little plastic lawnmower. 

^ I may be a truly horrible person. After many attempts at getting Daniel to relax enough to perhaps nap, offering to read to him, just sit and rock and nurse, and being emphatically told "No! No! Nononono!", I took the room's stethoscope, which he is obsessed with, and hung it up high on the IV pole knowing he would see it up there and ask for it. Then I could tell him he could not have it right now and break his fragile heart. Because he really only has one cure for a broken heart- cuddling, rocking and nursing. And there is almost no way he would be able to fight the sleepies once he had cuddled and nursed himself into a relaxed state. And I am not proud to say it happened exactly like I hoped. He saw it, I said no, he fell victim to a tragically broken heart, he raised his arms to me and tearfully asked for boob, I held his sobbing little body close, rocking and nursing, and he was asleep within ten minutes. Desperate times call for desperate measures. This afforded me the opportunity to wear Alex on my chest and walk the halls of the 7th floor until Alex succumbed to the snuggles and also slept. And finally, two hours of blissful silence. 

Which is where we are now. They are beginning to stir, but so far the room is peaceful. I know I should be sleeping instead of writing, lest they afford me no sleep tonight. But clearly, I like to live dangerously. 

The fever has not returned since Daniel's last dose of Tylenol wore off four hours ago. His ANC was 50 today- on it's way up. Cultures are still clear at 48 hours and counting. As soon as the fever has been gone 24 hours and his ANC breaks 100, we can be discharged. 

In the meantime, Dr. Alpert brought by an embarrassment of riches- a feast, all the deliciousness that weighed down their Thanksgiving table. I have been inhaling the delicious every time I feel even the slightest hint of hunger. Daniel and Alex have been quite impressed, as well. Alex tasted his first green bean salad, cranberries, and stuffing, and I think it is safe to say his world will never be the same, now that he has been introduced to such culinary delights. He threw a fit when the spoonfulls stopped coming at his face, even though his tummy was so full he was grunting a little as he slouched in his booster seat trying to breathe. Kid takes after his mom, who knows this feeling well. Daniel was nine months old before he was even curious about "real" food, and he was over a year old before it was more exciting to him than breastfeeding. But Alex...Alex thinks "real" food is the clear winner here. Breastfeeding has it's place- in the middle of the night, or any time we are too sleepy to sit up and shove real food in the mouth. But when we are awake, mom should know that no self respecting man wants breasts shoved in his hungry face when there is tasty solid food to be had. 

Which may be a problem for us. I am holding my breath that we do not have to be admitted after December 1, because no siblings under 13 years old are allowed here after that date due to flu season precautions, unless they are exclusively breastfed. Which he technically isn't, as of now. But I have nowhere to leave him, and his separation anxiety wouldn't allow me to even if I did, and as delighted as he is over having discovered real food, he still gets about 90% of his nutrition from nursing. If we do have to be admitted, I'm going to have to throw myself on the mercy of the head nurse and plead my case extra hard. It's just not going to be an option for us to split these two up. At least not without it being a major upheaval in their lives and one of them having to wean. 

Before I sign off, I should mention that the dreads, the freak out of last month, is pretty much over. Processing is such an inexact science. I am back to being all optimistic and grateful, knowing we are so lucky to have the diagnosis and prognosis we do, knowing how overwhelmingly the odds are in our favor. I'm not sure what that was. Probably the freak-out I should have had when Daniel was diagnosed, deferred for six months. Nobody accused me of not having to do everything completely backwards. But the important thing is, I let the negative feelings and the fear in, I let myself feel it, I let them do their worst to me, and it turned out, it wasn't all that climactic. It passed. Optimism won. At least for now. I'm happy again. Maybe it was the hormones. Maybe it was the shock of seeing Simone's family lose her, their tsunami of grief, and the realization that if that should ever happen to us, we would never be whole again. Maybe the shell of optimism I wrapped us in from day one just got a little thin after having been chipped away by the exhaustion all these months. But as of right now, I am back to feeling happy. In love with my life, in spite of this holding pattern it is in right now. Filled as it is with spousal squabbles, since the two "adults" in this situation are so perfectly unsuitably suited for each other, and the gears that make us tick just can't quite always manage to whir along in mechanical perfection. There is adoration for each other, laugher at ourselves and happy baby giggles in the family comedy that is our life right now. The feeling that although things would be tragic if they weren't also so ridiculous, we'll be just fine. Obligatory if. 

And now the big one is crying in his sleep. He'll be awake soon. My quiet time is over. Time to get back to parenting. Love to our faithful few. You make me happy, and I'm thankful for you.

(Update: fever is 103.8 upon waking. So we're not checking out of the luxury suite tomorrow anymore!)

Are we there yet?

We are home again. Five days in the hospital in isolation were long, but not even close to the longest anyone has spent in isolation. Hospital time is funny- the first three days flew by so fast I didn't know where they went- a blur of caregiving, measuring outputs, pushing fluids, trying to help Daniel choose between breaded and fried or boiled and unseasoned hospital food and talking (after all, Bobby and I hadn't seen each other for weeks- we had a lot of catching up to do), playing with babies, cleaning up spit-up, pacifying meltdowns. I honestly don't know how I would have done it without Bobby there- Alex has reached a level of busy I am not sure Daniel ever did, and hospital rooms are so incredibly un-baby-friendly. The floor is hard and walked on by shoe soles that come straight from other rooms with floors covered in C.Diff, sharp corners are everywhere, and cords, tubes, and wires beckon from every corner. Especially the tubes coming from big brother's body.

Alex has reached the same level of separation anxiety Daniel did at seven months, but it was easier to deal with when only one baby needed to be held constantly. But the last two days slowed to a crawl as I developed tight muscles in my hips from no real walking, everything hurt from sleeping in a semi-comatose version of Twister between two babies in a hospital bed, often waking up in the morning with my head at the foot of the bed, curled into a ball, after a night of adjusting positions to allow babies to flop around unhindered. After the first night we began to sleep a little better out of sheer exhaustion, but now that we have spent two nights in our own bed, the threat of the adults also dissolving into hysteria, in addition to the kids doing so, is less imminent.

Now that we are home, Daniel is...kind of horrible. Yep. I said it. I so wish I could have an articulate conversation with him to try to uncover the basis of his horribleness, the motivation for his constantly being in Alex's face, bopping him on the head, trying to push him over. Mostly when Alex invades his bubble, but he quite often goes out of his way to get in Alex's bubble, too. And the meltdowns are constant. I have found myself wanting to yell at him. Contemplating a well-timed smack. When I am sitting in the middle of the kitchen floor with two crying babies, one on each leg, both pushing the other away as they also attempt to fish their little grabbing hands down my shirt in hopes of snagging a tender bit, the success of which creates a sensation worse than fingernails on a chalboard, I have felt a little bit of crazy pushing it's way through my composure. So far, I have kept the lid on the big pot of crazy, but I am feeling the need to let off just a little steam somehow. A really hard run, a day of creative frenzy, maybe just a night out with the girls. 

Daniel was feeling a little inflexible before our five days in the hospital, but nothing like he has been since we got home. I can't even blame steroids, since we haven't been on them since last Tuesday. Now our lives have become an endless cycle of him being certain he knows what he should be doing, and me trying to convince him we don't need to make more fried eggs when his last ones are still uneaten, that we need to either go potty before naps or wear a diaper to bed, that we reeeaally don't need to have a fire in the fireplace all the time, that our mailbox key will only open one specific mailbox in the community lockbox, no matter how many times we try the key in other doors and then melt down when it doesn't work. And that Alex is allowed to eat. And sit in the high chair. And play with his own toys. And breathe Daniel's air. And share Daniel's parents. 

I am placing all my eggs in one basket here, with taking a gentle child training approach. I know it is more work. Nobody ever said it was easier to raise a kid empathetically and with gentle respect than it is to raise one so fearful of his parents inflicting punative physical pain he dares not misbehave or challenge them. However, it rings true to me that the person I want him to be is one who has experienced respect and learned empathy, rather than someone who has been taught to emulate respect for others he may not truly feel, in order to escape painful consequences. 

I also feel like perhaps I need to be a better doggie owner, because much of the misbehavior I see him dishing out in Alex's direction, I have modeled with Andy. Using my foot to push him away when his cold, wet nose is obnoxiously up in my grille, pulling him away from the table by his collar, blocking him with my knee, these are all things he has witnessed me doing with Andy. I really can't expect him to treat his brother any differently than he sees me treating others, human or not. 

I have to admit this year has tried my early decisions about how to introduce my sweet, innocent babies to the world. We didn't start out thinking we would be "attachment" parents. It started when I became so exhausted waking to sit in a chair and feed my tiny newborn who could not cry loud enough from his nursery to wake me.  We moved the crib into the bedroom. Then I discovered how lightly he was actually sleeping away from me- scarcely at all. No wonder he slept all day in my arms. He couldn't sleep at night unless he was next to me, my familiar smell and body rhythms soothing him. My arm wouldn't fit through the crib slats to reassure him all night with a gentle hand on his back, so we took the front rail off the crib and pushed it against the bed. Which meant I did not have to sit up to nurse him anymore, I could just pull him into bed and nurse him. Which meant we began dozing together like that. I was terrified of SIDS and smothering him in my sleep, so I began researching safe bedsharing. We put up a bed rail, filled the cracks between wall and mattress with blankets, and slipped a hard foam mat under the sheets on his side of the bed so the mattress was appropriately firm. I gave up my big fluffy pillow for a small, hard one that was only slightly bigger than my head. I wore warm clothes to bed so neither of us needed blankets. And just like that, the sleep deprivation stopped. We all slept better than babies. I found I had a sixth sense for when he was going to wake up, sleeping curled around him in a way I could not roll on him. His smells and sounds became as soothing to me as mine were to him. Within weeks, we were inextricable tangled up in each other's hearts and fairly incapable of functioning away from each other. 

This can't be healthy, I thought. It's going to result in all sorts of psychological damage, from an Oedipus complex to extreme codependance. I googled and read all the parenting philosophies and whatever studies I could find, to discover kids raised with as much parental warmth and contact as they wanted, often specifically through cosleeping, statistically grew up to be the most empathetic and independent teens, and the most insulated from peer pressure. I read about sleep training and crying it out, which I had always thought was an essential part of parenting, but now made me feel overwhelmed. We couldn't imagine a better sleeping scenario than our existing one any more than I could imagine nine hours per night away from the other half of my heartbeat. We decided to let him choose when he was ready to transition to his own bed and big-boyhood.

As time went on, his attachment to me grew- the instant comfort of breastfeeding a huge part of life as he enountered it's struggles on his own terms. Again I googled all the opposing theories. And in the end, again decided to let him tell me when he was ready to let go of this particular form of comfort, not a moment before he felt ready to handle life without it. Knowing that, again, someday he will need it for the last time, and he will know without a doubt that he is strong enough to take on life without it. (Bobby says every post of mine talks about boobs in some way or another. I didn't realize this, but told him my readership is lucky a paragraph or two is all they get, considering that about 80 percent of my time, waking or sleeping, revolves around this part of my life and anatomy.)

This decision was tried mightily when I got pregnant again and the soreness made breastfeeding him excruciating. But to feel his tense, unhappy little body melt into mine and become content within seconds made the pain and crawling skin worth it. Pregnancy dried 'em up and I thought that would make him stop, but it didn't- he still needed the familiar comfort of nursing, dry or not, to help him make sense of the world. He nestled against my expanding belly all night as his little brother kicked against him, our two tangled-up heartbeats becoming three. When Alex was born, my milk came back in and Daniel had to re-learn how to nurse effectively, but he remembered eventually. I didn't even mess with trying to put Alex in the crib, putting him in my bed immediately, applying the same safe bedsharing principles I had to Daniel, and now slept curled around Alex with Daniel melted against my back. He started preferring his own bed, his crib again pushed against our bed with the rail removed, me sleeping close enough he could reach me, nurse at night, then crawl back to his own bed to sleep. He is doing it. Chosing independence on his own terms, at his own pace and comfort level. I am elated and also sad that we will never again be so close. Because my biggest job, as his mom, is to ready him to live without me. The heartbreaking irony of parenthood.

In making these two decisions, to bedshare and breastfeed as long as he wanted, the decision to practice gentle discipline was automatic. The research was not surprising to me- children who are hit by caregivers on a regular basis tend to be much more violent in nature, both as children and as adults. Children who are modeled empathy, gentleness and patience tend to display these characteristics. This is the challenge now. To remember I am a better person than one who yells and hits. To remember that yelling and hitting are damaging shortcuts that will not lead to better understanding him. To remember how much I don't see, and try to see it. 

We have a video clip where Daniel and his dad are playing together, and suddenly, Daniel stops playing and starts to cry. To both of us in the moment, there was no reason for the crying. But watching the video reveals that he had repeatedly reached for Bobby's hand, and Bobby had not seen it. Daniel looked up at Bobby, and Bobby did not look down at him. The disappointment and betrayal were too much. There were tears. 

My biggest goal right now is to see. To understand. I feel I am failing miserably. But also, not failing entirely, because he still melts into me to nurse away the frustrated meltdowns, and for a few minutes, he is still my uncomplicated baby. I can feel those precious moments coming to an end. As much as he loves to nurse and cuddle with me, he is down to only doing it when he is upset. Slowly, he will learn to calm himself without my help. Then he will learn to do a whole lot of other stuff on his own, and then one day I will realize he is all grown up. And I will be happy, but also so sad. 

And right on his heels will be Alex declaring his independence. Soon I will have my body all to myself, Bobby and I will have our bed to ourselves, and we will lie in each other's arms as we often wish we could do now (without waiting for babies to fall asleep or someone sitting on our heads while wearing a soggy diaper) and reminisce about the time in our lives when one bed held an entire family. Including the dog.

Right now, I feel a little overwhelmed. There's no other way to say it. I am so thankful my plate does not include things like war, poverty, homelessness, hunger, or even being uninsured, but what it does have on it feels like a lot some days. The constant call for patience and understanding. The isolation when Bobby is gone. The feeling of delaying everything, of being in a holding pattern. Bobby has the stress of a job that is not working out, and needing to stay there just a little bit longer...always just a little bit longer. I am so over being adulty and responsible without a break. I don't know how to say this without it sounding like I'm complaining. At the same time, I know it's temporary, and we can survive a lot temporarily. This time is so, so short- the time our babies are in our bed, the time they spend nuzzled into me, clinging to me like I am their whole world (which I am, temporarily), the responsibility of being someone's whole world. This short time our toddler is fighting not only for increased independence, but also for his life. Not to mention the responsibility of making another person's medical decisions for them. 

And for right now, feeling overwhelmed is just going to have to be how it is. My toddler has an immunity of practically zero (it's been a few days since I started this post, and in the meantime we've gotten another CBC, which quantifies his ANC at 31. If you've been reading this blog for long, you'll remember anything under 100 is critical, 750 is sort of the "out of the woods" number, and a normal person's ANC is 1,500-5,000.) Which means we are stuck here, hiding from the germy, germy public, and every person in and out of this house brings potential devastating bacteria and viruses in with them. So right now, I don't have the option to ask for anything that might involve contact with other people. Our grocery store makes deliveries if I need food and Bobby is gone. Even my parents are keeping their distance for the time being, and are dogsitting to keep Andy's dirty paws off the always freshly Cloroxed floors. Because nothing is more disturbing than pounding it into everyone's heads how important it is to wash their hands for 30 seconds after going to the bathroom or blowing their nose, only to turn around and witness the dog dragging his butthole across the carpet while water from the toilet drips off his chin. 

And on that classy note, I should go referee. The littlest little has learned a very exciting new skill- ascending stairs. He'll do it as many times as I will carry him down to a safer elevation. The bigger little has decided it is his job to keep this from happening, by pushing littlest backward off the stairs he has just climbed, or grabbing his heels and dragging him down, or simply standing over him and beating on his skull for no apparent reason. Age appropriate behavior and displaying his need for control, his speech therapist called it. Nobody ever said this would be easy. I can't help but think, though...the last time he displayed such "age appropriate behavior" was when we was deathly ill and felt awful. I hope, and implore to whatever logic his undeveloped prefrontal cortex posesses, that it is the fact that he is eight months into an intense nine month chemo regimen, nauseated and exhausted and in pain, more than his age. Because either way, we have to wait it out and deal with it. But the end of his most intense chemo is closer than the end of this age. 

And I do think Daniel has pain he isn't telling us about. Night before last, he organized an impromptu family dance session with the polar bears on "Numbers around the Globe", a show that incorporates dancing and counting. He did ok until he tried to jump, then collapsed crying. Every time he tried to skip on one leg, he cried. He is tired. We all are, but especially his little battleground of a body. We are ready for life to get back to normal. As we near maintenance, my heart breaks even harder for the kiddos who relapse and have to keep doing this, over and over and over. We plan to put this time in our rear view mirror. I can't imagine not being able to plan on a time when Daniel will be just fine.

Fever pitch

Thursday night: Hello! I know, it's a little pathetic that I have to write to fill the void that is the lack of actual grown up conversations these days. Today marks the seventh day I have been alone with my two babies. I'm not complaining (too loudly). We could be inpatient. But finally today, I did send an SOS to a friend that, if her babies were well, we needed human contact. I was beginning to forget how to relate to adults. My quick grocery trip on Saturday with Daniel on my back to discourage his hands from picking up germs, flying through the germatorium (known to normal people as the grocery store) in record time, wasn't meeting my get outa the house quota anymore. So we had interrupted adult conversation while two little boys played hard together. 

As soon as they left, Daniel got really tired really fast, so I took them both to bed. Alex was snoring in no time, but Daniel is here beside me pretending to nurse and breathing in grunts. 

I have an uneasy fear, my momcology "intuition" (which we have already established is not exactly bulletproof) suggesting something is not quite normal with him. Maybe it's just more steroid stuff. I don't know. Maybe it's that I'm the responsible one when B is gone for work and I can't take the pressure, and look for boogie men. But I keep taking his temp. I keep scrutinizing his face. Feeling his pulse to see if it is racing. It's how uneasily he is sleeping beside me. It's the way his tummy is so distended and he has a pronounced limp. It's the fact that he is sweating so heavily when he sleeps. That his poop was extremely pale, almost white, until this morning when it turned back to yellow and gelatinous with mucus. That he's burping and farting like a frat boy. That his hand, caressing my face as he sorta-nursed earlier tonight, was shaky. That as I lie here and type on my phone, he is whimpering in his sleep beside me. That as I changed his diaper earlier tonight, the skin around his mouth and chin looked blue, even though his lips, fingernails and toenails were pink. It's all stuff that is probably nothing, but the sum of all the nothings has me nervous and on high alert. Maybe it's just that his newly bald-again head is reminding me that I should not relax yet. Or maybe it's just that I'm trying to sleep in a weird (to me) house with weird sounds and smells and feel all uprooted, not to mention alone and terrified of being the one in charge. Maybe that has everything feeling not quite right.

In spite of my foreboding, Daniel has been incredibly happy and in spurts, energetic today. Every time I ask him if anything hurts, he says no. So that's encouraging. My threatening freak out is probably all just caused by the weird side effects from steroids. But I wish he would breathe normally. He sounds in pain. He holds each inhale for just a moment, then exhales with a grunt. There are many reasons I am glad he is going through this so young, it saves him a lot of processing, but not having him verbal yet and able to describe what he is feeling is really frustrating sometimes. 

Sunday night: ...and that's when I decided I was making no sense and just sounded like a crazy person, so I relegated those first paragraphs to the "never going to post" file and went to sleep, feeling a little better having at least expressed, if not shared, my uneasiness. But here we sit, inpatient again. I still think I was being a little bit crazy and paranoid, but even a broken clock is right twice a day, right? I'm not quick to claim any sort of secret mom knowlege, even though I am occasionally right. When weirdness strikes, it either is something or it isn't. Only time determines which. And later, we only remember the times it was something. 

Early Friday morning, I called Bobby, who has been working most of the last two weeks in Wyoming, to inquire after his welfare, lack of sleep, how he was doing with keeping his truck between the white lines... the general lineup of worries I harbor when he is out driving through the night, providing for the four of us. He surprised me by telling me he would be home a little after noon to take his mandatory ten hours off at home, since his clock would run out somewhere around Ft Collins without allowing him to start a return trip to Casper, Wyoming. I loaded up the babies and went to pick him up from an undeveloped side street north of Loveland where he would leave his truck while he came home and slept, and when he got there, in spite of his having been behind the wheel since 10 pm the night before, he stayed up and played with Daniel until about 7pm. Daniel was so thrilled to see him he wouldn't let him out of his sight. We walked a mile to the park with Daniel in the stroller and Alex on my back, watched ducks and geese swim, collected leaves, Daniel walked through the sculpture garden touching and exploring every sculpture on the way back, and as soon as we got home with Daniel almost asleep in the stroller after his little walk, my parents pulled into the driveway. They had to come to Denver for a follow-up exam on the spot my dad had a malignant spot removed from several weeks ago, so took the opportunity to come see the babies at the same time. Bobby went to bed shortly after they arrived. I went to the store alone, kicking up my heels over being able to be out of my house and without small charges for the first time in two weeks, and bought groceries for dinner, which we made when I came home. We stoked a fire in the basement and settled in for a quiet evening in, careful not to make too much noise and awaken the sleeping one, due to be called back out to deliver a load of sand to Casper at 10:30 that night. At 8:45 I nursed and rocked Alex to sleep, then handed his sleeping sweetness to grandma and sat down with Daniel to do the same, and noticed he felt warm. The thermometer read 102.2. So, as much as the last thing I wanted was to make a trip to Denver to spend the night in the emergency room, I was a good girl and called in to report it. 

The doc on call told me to find a local ER to assess him and do a CBC, which would give them a ballpark of what his immunity was doing. Basically, the protocal is, good immunity: draw cultures, then send us back home and give his body a chance to fight on it's own. Low immunity: draw cultures, then start antibiotics, because we don't have the luxury to wait to see if it's a bacterial infection or a virus. Then admit him while waiting 48 hours for any potential bacteria to grow on cultures. And if his immunity is very low, wait until it is less dangerously low before releasing him, negative cultures notwithstanding.

Knowing that a trip to a local ER generally results in a transfer to Children's anyway, and since most of the ambulance services are not in-network for our insurance so we end up with a self-pay in the thousands for every ambulance ride, I decided I would gladly drive an hour down to Denver to save ourselves such a bill. Not to mention the local ERs don't have the greatest track record with accessing his port. So my dad stayed behind to take B to his truck when his phone rang, and my mom packed a small bag while I packed a bigger one with clothes for all of us, wishing greatly I had done laundry that day, since all the clothes I wanted to take were dirty. Then we bundled two sleepy little boys into carseats, stopped for a tank of gas, and drove down to Children's hospital, where we spent only about three hours in the ER before we were shown to our room. 

(Daniel insisted on walking out of the ED and up to his 7th floor room, in spite of his shoes having stayed in the car.)

Which is where we are right now. In four hours, our 48 hours will be up. But his absolute neutrophil count, the presence of white blood cells that give the best indication of where his immunity is at, has dropped from 6,500 two and a half weeks ago, to 600 last Wednesday, to 230 when we came in night before last, to 90 last night. A normal person's ANC can range from 1,500-5,000. Daniel's was higher than normal either from steroids or because he was fighting a virus a week and a half ago. Anything under 750 is considered neutropenic, or severely compromised. Anything under 100 is considered critical. We won't be discharged until it has climbed back over 100, and since it still seems to be trending down, steadily on it's way to as close to zero as his last round of chemo can push it, we will be here until it bottoms out, then climbs back up. 

But that is all just protocal. Whatever Daniel is fighting actually has an occasional stab of panic forcing it's way into my throat. His fever has been relentless since Friday night. It still has not broken. It can be temporarily controlled with Tylenol, but never goes below 100.4. They are reluctant to treat it with ibuprofen, since that can be a bleeding risk with his platelets also under attack, but have had to several times when tylenol has proven to be less than satisfactorily effective. When it climbs up around 103.8-104.1, his breathing becomes so hard and fast, his heart hammers, even his legs and arms are so hot I can hardly stand to hold him. His head, plucked-chicken bald but inexplicably soft, shiny scalp under a fuzz of straggly hairs, feels silky and hot against my cheek. I read somewhere that a cancer parent never forgets the feel of a child's bald head against their cheek. I don't think I ever will. Nor the sick smell of his diapers after round upon round of antibiotics have wrecked havoc in his insides. Nor the sweetish, acetone smell of his breath after a round of Erwinia that tells me he is ketatonic, his liver under attack. Nor the way he no longer even has to smell something to start to retch, he only has to think about it. (He heard someone who shall remain nameless let rip a particularly impressive episode of flatulence the other day and immediately began retching, in spite of the fact that he was upwind, removed from the immediate vicinity, and the pungence never even wafted past his sensitive little nose.) 

Bobby begged off work when they called him in Friday night, so he slept the rest of that night, catching up on his missed sleep from the two weeks he was gone, then he and my dad spent the next morning installing doggie doors in our house so Andy could be self-sufficient while they came down here the next day. My parents went back to Loveland that night. This morning and afternoon, my mom did laundry and my dad finished building the swingset he started two weekends ago with Daniel's help, and after a quick stop here to see babies again, they are on their way home right now. 

So we wait. There is nothing to tell, our doctors tell us most of the time cultures are negative and they never discover the cause of the fever, and in the meantime we are on isolation, lest it is a virus that could expose the entire bone marrow transplant wing. It is hard sometimes to not think about the stories you have heard of such episodes that ended as worse-case scenarios. Because those are the stories you hear. You rarely hear of all the times the parents of tiny oncology patients sat up watching over their tiny, embattled bodies as they slept, fear twisting their guts and squeezing their chests, and it turned out totally fine. Even though I know this experience is not unique to us and more kids walk out of here and get on with the rest of their lives mostly unscathed than those who don't. And I still believe this will be us. One can't harbor thoughts of anything else without giving in to genuine crazy. Not to mention, this particular time in our lives is less than ideal for that. After all, we have a "Turning Three and Cancer-free" party to plan in a few months. And things in the future like preschool and play dates to think about, and a whole life ahead of us to spend worrying about him learning to drive, trying things he shouldn't, and waiting up for him to walk in the door, safe and sound. If we didn't want to know this terrifying love and loving terror that is parenthood, we should have never brought these beautiful little creatures into our lives in the first place.