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.

No regrets

I'm finally in bed. I have nursed and rocked and fed and played with two precious little boy people all day, finally got them both asleep an hour ago, made a big batch of oatmeal and then ate it from the pot while watching Netflix, remembered to chug water to make up for forgetting to drink all day, took a shower, and finally, finally, I'm calling this day. In spite of the fact that it's not even today anymore, it's tomorrow. Or however that works. 

I'm finally lying here between these two boy people, and I can hear them both breathe unevenly as they dream, catching their breath, sleeping sighs and whispers. 

...so much for that intended post. I fell asleep. Try again. 

It's now several mornings later. It was an interrupted night again last night. I lost count how many times Daniel woke up, yelling (yes, yelling) BOOOOO??? BOOOooooOOOOoooOOOOO!?!? While frantically groping in the dark for my boob, yanking on my shirt, fingernails gouging my skin. If I so much as use my arms to block these attempts while waking up enough to get things out for him, he falls apart, and while Alex can sometimes miraculously sleep through one or two yells for boo, he definitely wakes up once the crying starts. Another issue lately is that Daniel has started trying to control his diaper situation and wants it changed if he pees in it even once, even though it is still plenty dry. And says no to cloth diapers, which feel wetter against his skin. And refuses to not wear a diaper at all. And if I should put a cloth diaper on him anyway, or make him go without (which is mostly an issue when it's cold, since he can't pull his pants down by himself and refuses to ask for help- he was more agreeable to being diaperless and pantsless when it was warm than diaperless and pantsed when it's cold), again with the melting down. It's loud and it's long. Not to mention we are back to waking up and climbing out of bed to go look for food in the middle of the night, yelling for mom to come along and act as our personal after-hours chef. So this is how it would have been during induction if he had been able to walk. Not much different, except I carried him around the house following his pointing finger instead of following his little feet. 

In reality, the 'roid rage has only been at this pitch for a day or two, and he stops the steroids tomorrow night. I only have to get through one more day of this storm gathering force before it levels off, then slowly, over the next two weeks, abates. It only seems difficult in the moment. Okay, more than difficult. Overwhelming. I keep having to stop and put it in perspective. At least he's here and healthy enough to be so difficult. I'm only so exhausted because I have two amazingly active little boys who love me so much they can't let me out of their sight. 

It is the same thing, though, as induction was- the pain causing his fists to clench, the constant shivering (at least I hope that is just steroids), the constant crying, the constant need to nurse for comfort, the sleeping drenched in sweat. His body language constantly suggests he isn't content, he is always pacing, looking for something (usually food) to be the thing he wants, and nothing fixes his malcontent. 

I've been making a mental list lately of the things normal kids can have that sick kids don't get. I know it might not be the healthiest thing to spend mental energy on, but on the other hand, I feel like if I am constantly aware of these things, I can constantly be creating substitutions to try to hack the childhood he isn't getting. Like I mentioned in my last post, body autonomy is a big one. There are just so many things that create balanced individuals, things that start in baby- and toddlerhood, that sick babies and toddlers don't get in the same ways as other kids do.

Control of their environment. Toddlerhood is the time of life when kids start to experiment with their impact in their surroundings. They test their boundaries in healthy ways, thriving on making choices, and the ways their adults react to this is a big deciding factor in their level of confidence later. This includes the "by myself" phase. The "No!" phase. Except they spend so much of their time in a highly controlled environment where choice is simply not an option. 

Consistency in discipline. Every parent inside the walls of Children's Hospital says they give no sickness passes. Including me. Except, if I'm honest, I do. Because some of Daniel's behavior, I cannot identify the source of. Sometimes it comes enough out of nowhere, I can only try to hang on to my own control as I search for causes. Which is why a normal kid throwing tantrums, his food, his toys, or his baby brother would get reprimanded in the same way every time. But I have to assess every incident- is he telling me something or just being a horrible child? Have I tried to get him to eat and this is his way of telling me his tummy hurts? Have I tried to get him to walk and he has gone jelly-legged because his legs hurt, or because that is what kids do when they don't want to go somewhere? And now that we are on an extremely high dose of a steroid, the side effects of which looks like this...

...now I don't know what is causing it. Is it normal toddler boundary-pushing or drug-induced homicidal impulses? When eight of the twenty most common side effects are negative emotions and impulses, and so many of the others (pain, headache, irregular heartbeat) can cause such emotions, how can I not give him a pass and just try to ride out the storm and simply offer unconditional comfort instead of discipline? What I do know is, I can't discipline him for acting out when he has so many potential side effects causing his less than awesome behavior, and he barely has the vocabulary to tell me what he wants for early dawn snack, breakfast, second breakfast, elevensies, lunch, afternoon tea, dinner, bedtime snack, and midnight snack, let alone the vocabulary to report the havoc being felt in his little body. Body language is the only language he has right now. So I tell myself that when the nightmare ends, we will just have to sort it all out and unlearn all of the things we have learned. (Kinda like we do every time grandpa leaves.) In spite of the fact that unlearning and relearning takes ten times as long and ten times as much consistancy as learning something the first time. It's a case by case process. What may look like inconsistency is possibly me attempting to consistently give every new challenge the same consideration and tailor a suitable response instead of having a pat reaction. Well. I try, anyway. Some days are more successful than others. 

Healthy food experiences. As if it isn't hard enough managing a fickle toddler palate already, try adding treatments that actually change the flavors of foods from time to time. One day, an apple will have a nice, sweet-tangy flavor. The next, he could very well be biting into an apple expecting the same sweet tangy flavor, only to encounter something best described by adults on various internet cancer boards as a delightful mix of cardboard and chewing on tin foil. Not to mention the sudden unexpected emesis issue. I still occasionally have a problem with hot ham and cheese after it turned on me as a child and came back up. 

Constant pain. Normal kids have "owies". Sick kids have surgical procedures. Needles. Incisions. Bone pain beyond the normal growing pains. Splitting headaches. Stomach cramps that are not just gas, but actual damage to the intestinal tract. Mucositis, which is inflammation and open sores in the mouth and mucus membranes. Constipation or diarrhea, never any in-between. I think the chemo has finally started affecting Daniel's nail beds, loosening and irritating them, because he comes running to me for owie kisses on his fingertips often these days. Pain eats at a person's psyche. Chronic pain is a predictor for clinical depression. Depression should not ever be part of a parent's concern for their small child. 

Lack of socialization. As if kids aren't cruel enough as it is, and as if sick kids don't already feel as though they have simply seen more than their peers will ever understand, and as if this doesnt make them a little weird and hard to relate to in their peers' eyes, they simply can't go to that germ and virus-ridden birthday party, play date, pool party. And once your peers have seen you puke, forget about being the cool kid. (Although cool -or whatever the equivalent is these days- is not something Daniel is old enough for yet, thank goodness). The few times Daniel is able to be around kids, he watches them play. He laughs at them. He follows them and observes. But he never initiates play. It's just not something he has learned how to do, to be a kid among kids. 

I'm sure there are more. The thing is, we will get to leave this time behind us. (Obligatory mental "if" aside.) So many kids don't. It is happening early enough for us, we dont have to deal with missing school or having to explain to him why he can't do things with other kids right now. And there's only so much bodily damage a toddler can cause us during his fits of drug-induced rage. It's all just his normal, as far as he knows. He will be able to be a normal kid by the time he starts school. Nobody will even need to know about this time in his life if he doesn't want them to.

I stated on Daniel's Facebook page early this morning while up at 4:20 with him making quesadilla after quesadilla, only to have chewed-up quesadilla spit back out and another one loudly and tearfully demanded, that I wanted my baby back. I edited it when I woke up this morning to say my "sweet baby", because there are moms everywhere who would give anything to have their babies back, no matter what their baby's moods would be like. The babies who didn't get to emerge from this experience. Every time my optimism slips and I wallow a bit, I have a mental image of the moms who have lost their Daniels all lining up behind me, hands on hips, mouths in disapproving lines, their empty dining room chairs, empty little shoes, and empty toddler beds shouting their pain, and revealing the knife I've twisted in their hearts with my unfortunate choice of words. A knife that undoubtedly twists every time a mom of a living child complains about motherhood. 

The thing is, this experience is not a big deal in the grand scheme of things, as long as we walk away from it. But if we don't, it is the biggest mountain in our lives. It will all be more tragic if he should not survive, if he should relapse. If not, it will all be minimized in the future. Already, the seven months behind us are turning into a blur. It seems, in hindsight, like a stressful few weeks. We don't really remember the agony of diagnosis, of infections and fears of typhlitis, the tummy pain that had him writhing for a week, all the vomiting in the car, the nights of his pulse racing and his body buring up, of weeks of counts being nothing, of being extremely immune compromised. 

I feel this way about the year we spent watching my mom fight for her life after her breast cancer diagnosis. A year? How could it possibly have been a year? Because what I remember is: crying in a parking garage when she called with the news. Coming home to flowers from my husband, because even though I wasnt the sick one, sad is a kind of sick. There was the big family camp-out reunion in the space of time between the diagnosis and the follow up appointment which would tell us things like stage and type. And then nothing, until driving to Houston. No details. Finding a hotel in the middle of the night in Houston. Falling apart when my hotel room door closed behind me. A few minutes of impressions from the clinic. The dress she wore. The other patients. The healthy, sinewy freckled legs beneath a hospital gown, from which protruded a sallow, sunken face and bald head of a young woman, another patient in the oncology clinic. She looked like one of those puzzles in which you mix and match head and body and legs, put together the wrong way. Her strong-looking legs were the wrong ones for her exhausted face. Then there was my mom finally allowing herself a cry in a gazebo, then a traffic jam. Then a few flashes of Shaw Cancer Center. A few first impressions of doctors. A first infusion in the infusion chairs overlooking the valley outside. Her obvious mix of fear, depression, and vulnerability lying alone in the radiation room under the massive, noisy machine, arm up, breast exposed. Her shiny head. Me wanting to tell her to not be self concious and wear her baldness with pride, but not being able to say the words because although her strength was beautiful, the baldness just represented the most obvious physical marker of cancer's ugliness. So although bald may have been beautiful, to me it wasn't. And I couldn't lie about that to her. So I bought her pretty scarves instead. I feel differently about Daniel's bald head. Fiercely proud. But that is because he will survive, obligatory if. I'm not sure I believed it with her. We tend to go back to our last experience when forming our expectations for our next one. Her cancer followed Grandpa's horrible suffering, his two year decline, the tumors that no treatment was effective against, and his death in the hospital bed in his living room in grandma's arms. Daniel's cancer follows my mom's victory. She is the big reason I now know cancer isn't a death sentence. 

There are a few flashes of pre-op huddles, surgery waiting rooms, her surgeon's almost hilariously graphic description of the handfuls of coagulated blood they dug out of her surgery site after it hemorrhaged inside and her shunt could not drain all of the blood. The different mood every time she awoke from anesthesia, tracking her true mental barometer through the process. The physical therapy she did at Shaw that began to solve some of the chronic pain issues she had dealt with her whole life. The fuzzy hair growing back. My disappointment that she wasn't able to spend more time with me, that she always had to go back home to Kansas between treatments. A later surgery for the second elective mastectomy, which I know happened, and remember the consult beforehand, but not really the surgery. Her pain after the tissue expanders were pulled out and permanent implants put in, her feeling betrayed by her doctors having downplayed the pain before the surgery. 

And that is pretty much that entire year (two years, if you count the second mastectomy). And it is all completely subjective. Our memories are reconstructions, not recordings. It was a terrible time, and one nobody wants to revisit, but at the same time, it revealed depths of strength in all of us, especially her. We should have taken more pictures, I should have written more. I wonder if I gave her the encouragement I should have, if I was there for her, if I let her have her moments of victory. Because I just don't remember.

I already feel the same way about the first half of Daniel's treatment. I didn't take pictures. I didn't record emotions. It all felt ugly, and I didn't want to feel it. I wanted to just exist in the future, projecting into a time after it was all over. Some time in the last few months, I have come to embrace this time we are in as part of our story, rather than a departure from it. In doing so, I have had to let in all the ugliness and fear I had barred outside the door for the first half of it, and feel every emotion. I didn't want to have to. 

Bless sweet baby Simone's heart, I believe she was mostly responsible for this. Until she relapsed, all of our encounters with other sick kids at the hospital were just snapshots of "we're fine". She was our first one to go from a holding pattern of "fine" to not fine. I did a lot of processing during that time, because even though she had a higher risk of relapse than Daniel, she made even our smaller risk so much more real. Relapse no longer just happened to pale, sick, already dying kids. It comes out of nowhere just when lives are getting back on track, just two weeks into maintenance, to vibrant, happy, doe-eyed little girls with their whole lives ahead of them and young, friendly, energetic parents. And even then, it was a devastating departure from the plan, but it wasn't going to end. She would get in a T-cell trial. It might be successful. If not, she'd get a bone marrow transplant. There were more things to try. Nobody was having the death conversation.

And then, one night, she just stopped breathing. She didn't fade, she didn't even spiral. She crashed. In two hours. Her mom posted her official cause of death last week, after her autopsy results were in. Acute sepsis. No infection, no bacterial source was found. She was healthy. She was perfect. She was tolerating treatment. And now she is dead.

Which brings us to another absolutely terrifying realization. Simone did not die from cancer. Not technically. She died from sepsis. She will become a statistic for death from sepsis, not necessarily death from cancer. She won't impact the cancer prognosis for other kids with her kind of cancer. No cancer cells were found in her body during her autopsy. The two weeks of treatment she got after her relapse was effective. But with no immunity, her body couldn't fight infection. Bacteria killed her, not cancer. Even though she would still be alive if she hadn't had cancer. 

I have been wondering about this, but I was afraid to ask the question, mostly because I already knew the answer. The statistics count deaths specifically caused by cancer cells affecting the body's functioning. Full stop. If one should, say, develop chemo-induced neuropathy in one's feet leading to a fall down a flight of stairs, guess what. Not cancer. If a brain tumor led to blindness, which led to stepping in front of a moving bus, not cancer. If low blood counts allow an asymptomatic infection to take over one's body to the point it causes massive organ failure with no warning...you get the picture. 

I'm not really spending a lot of time dwelling on this stuff, but I am starting to give it airtime in my brain. My most recent epiphany, though, is the revelation of what is happening here. I am finally moving forward with processing. Look at me, healthy mental processes and all. I'm so proud of my little brain, doing what it is supposed to in spite of also trying to get in it's own way. The trick, I imagine, is to move through this stage without getting stuck here indefinitely. Acceptance, or as I said earlier, embracing this time as part of our story instead of an unpleasant footnote, requires accepting the ugly, the terrifying, the reality of how messy it is, and calling it all beautiful, because it is a part of us now. Seeing my mom's cancer journey as an ugly deviation ended up being okay because she survived it. But had she not, the last several years of her life would not hold many memories for me. Good ones or bad ones. In choosing not to embrace it when it was happening, I've blocked all but a few flashes of memory from my mind. 

I don't want to do that with Daniel's story. I feel as though I somewhat denied my mom the true acknowlegement of what a hero she was. I want my little hero to have every moment. 

Isn't it great when you come through a confusing time, then look back and can see what was happening? I feel this way about the puzzling dreads of the last month or two. I didnt, and don't, want to give into pessimism or fatalistic thinking, but my mind insists on going there. No amount of determination can truly change my mental state. But now, with an inkling of the purpose of the dreads and the effects of having ridden out their storm, they have brought me to a place of more presence. It's hard to explain, but I don't want to forget the badness anymore. I wish I had taken more pictures of fat Daniel, weak Daniel, screaming Daniel, instead of only keeping the rare ones of Daniel smiling through his misery. Because those pictures and memories I chose to keep may eventually become my reconstruction of this time, complete with an "aw, shucks, it wasn't that bad" attitude. And it was bad. It was (hopefully) one of the worse things Daniel will ever experience, and he did it only two years after entering this world, and I don't want to take that away from him. 

Chemo in costume

Hello, and welcome back. It has been a crazy big week or two. There was the trip to Lake Tahoe for the wedding. A total of sixty four hours from leaving our driveway to returning to it, thirty of which were spent on the road. It's all a bit of a blur of brown desert, endless nursery rhymes and songs to entertain babies in carseats, lots and lots of kneeling in the car, hanging the boobs into carseats so I didn't have to take babies out to nurse them, which led to a bit of a backache by the time we got home. But the wedding was fun, if a bit rushed for us. Daniel made an absolutely adorable ring bearer, completely distracted by the little treasure-chest ring box he delivered down the aisle, stopping often because he just couldn't manage to walk and fiddle with the latch at the same time. He looked (and I think he felt) very handsome in his tux. I was honored to be a bridesmaid in such a gorgeous wedding, and for such a wonderful couple. I met Rochelle mountain biking in Summit County, on a Diva's ride. The Mountain Sports Outlet Divas were a bike team I rode with and later raced for, back in my other life. There was an incident involving clipless pedals and a perfectly placed fall connecting her kneecap with sharp broken granite that required a long walk down the hill back to town and a drive to the ER for stitches, and I offered to walk with her as her knee stiffened up too much to pedal, drove her to the hospital, and then, stitches in place, went out for a late dinner in Frisco. This became the beginning of my friendship with Rochelle. Since then, she moved to Portland, met Don, and they have biked across the United States west-east, backpacked through South America, and just this summer, hiked the Pacific Crest Trail from Mexico to Canada, finishing just a month before their wedding. Their trail-conditioned thighs were up for a night of dancing, and so was Daniel...until he suddenly wasn't. One moment he was spinning on the dance floor, dodging the adult's knees, and the next, he was lying in the middle of it going to sleep while wedding guests tried not to step on him. My little man is such a dancing fool. He has all the rhythm and natural moves that I do, which is to say, none...but that doesn't stop him. He tried to pull me onto the dance floor during the couple's first dance, but I managed to keep him pulled back. But as soon as it ended and everyone went to eat, he took my hands and we twirled with the floor all to ourselves. It was a moment. 

We took his batteries dying as our cue and left before the festivities ended, knowing we had limited time to get back home, and drove east until we were both unable to keep our eyes open anymore, five hours to Elko, NV, where we didnt even have the energy to bring the suitcase into the cheap, stinky motel room, but slept in our wedding clothes. Then ten hours home the next day.  We got home Sunday night, dropped into bed and were able to sleep in for a few hours before we had to go to Denver for Daniel's Erwinia shots Monday.

Tuesday we closed on the house, signing the last papers by 4:30 pm, then came home and began moving the big furniture. By late that night, I had helped move couches and beds up and down stairs while carrying an eighteen pound baby on my back and redirecting a sad, whiny toddler, and I was one incredibly tired mama. And B was a tired daddy. But we had enough stuff to spend the night in the new house, and the next day we got more, and we had all but the kitchen moved by the time my parents showed up Wednesday night. Uncle Leroy and Aunt Mary showed up Thursday night for Haloween festivities, this being the first year Daniel was old enough to realize all the fun that could be had. And then, right on cue, I woke up with a scratchy throat Friday morning and Alex woke up snotty and coughing. 

I kept my potentially diseased self home with definitely diseased Alex and helped my parents and Leroy finish cleaning up the old house and moving the last of the kitchen to the new one while Bobby and Mary took Daniel to Denver for his Erwinia shots. I missed Daniel getting to tour the clinic's "Candyland" extravaganza and see all the other wee oncology patients in their halloween costumes, but Daniel apparently had a ball running around in his "man with the yellow hat" costume and Curious George doll, collecting candy and toys. He reconnected with Kaylee the pink unicorn, whom we know from other stays, for an adorable picture...

...and brought home a bag of treasures. 

The next day, Saturday, we reserved for doing fun kid's stuff. Grandma Sandi and Aunt Mary accompanied The Man with the Yellow Hat, his little brother the monkey, and his mama the giant polyester banana to the Gardens at Spring Creek, Ft. Collins' community botanic gardens, where there were lots of kid-friendly activities for Daniel and pretty little corners with fun plants for adults. We got back home in time for a quick break, then it was back into the costumes for trick or treating, which involved me introducing myself to the new neighbors, then going back to our old neighborhood to visit our old neighbors. 

Unfortunately, that was the last fun clinic day. The next two trips to Denver, with Alex still croupy and sick, we had to scurry into the clinic and hide ourselves in a room before we spread any gems, then stay in that room the entire time we were there. Which is usually about two hours, one spent waiting on the doctor to authorize the shots, then for the shots to show up from the pharmacy (at $32,000, I imagine it's fairly important they not send the shots up until all proper protocal has been observed and they are certain they will, in fact, definitely be able to administer them.) We had one more pair of Erwinia shots today, now we get about a month long Erwinia break. 

Now we are back home, having made it back from Denver in time for speech therapy, a whole lot of eating, a little crying, and now a late nap. Both babies fell asleep in the clinic, which made for an adorable picture of my wee angels...

It was a weird day. Daniel seems more wiped out than I have ever seen him. The lack of life in his eyes and his face right now hurts me. He will occasionally have spurts of energy, but he has fallen asleep multiple times today after asking to nurse. Not that I mind the break. I wish he could just do nothing but sleep until these steroids are behind him. He could wake up happy and not have to spend so much time sad and upset.

Daniel has now had his third and final Doxorubicin infusion, which is a big relief to have behind us. This last one has him looking particularly "chemo-ey". There's really no other way to explain the way his face looks. Pale, exhausted, the deep circles under his eyes not bluish, as they would be if he were healthy but tired, but that unhealthy brownish color. I am not sure at what point he will have a follow up echocardiogram to reassure us the doxo left his heart unscathed, but I am assuming that will happen at some point. Not that it does a bit of good at this point. It isn't like we can change anything by knowing. 

His ANC dropped from 6,500 (higher than a normal person's upper end of 5,000 - it often jumps like that when he is fighting a virus, plus apparently steroids can make it jump up as well) to 950 yesterday. 1,500 is the low end of a normal person's. So we are definitely heading into our upcoming month of neutropenia. Just in time for Thanksgiving. If his counts pass, he will start his next round of chemo November 20, which will really knock them back as well as amp up his nausea and probably cause his hair to fall out again. In the meantime, we get two weeks of no trips to Denver. I can't express how lovely this will be after having made that trip six times in two weeks. Even though it is only a little farther than driving from our house in Kansas to Garden City, which is no big deal, it is a much bigger deal when it is in bumper to bumper stop and go traffic. It's exhausting. We have started taking I-25 all the way to Denver more often because when the traffic is moving, it is faster than E-470 by virtue of being six miles closer with minimal road construction. But the traffic is much heavier and accidents happen much more frequently. There's an app for telling us which way to take when we get to the 470 junction and check to see which way is moving more quickly at that point. Regardless, not driving that road for two weeks sounds amazing.

I haven't said anything to his doctors yet, because I'm not sure of what I'm seeing myself, but it seems like after his last two doses of Erwinia, about an hour after his shots as we are leaving the hospital, he has gotten really shaky. Not feverish, just shaky. It has passed fairly quickly, though. We still have one more two week round of it. I just hope we can get through it without starting to develop a reaction. Time will tell...

In the meantime, the 'roid rage...rages. Daniel's is less rage, although there is definitely some of that, but more sadness with fits of agitation. He feels spectacularly sorry for himself one moment, disolving into loud, mournful sobbing over anything and everything, then he rallies and runs around the house slamming into me, Bobby, Alex and Andy, hitting and pushing. There is hardly any in between. His patience is nonexistant, and this is exagerated by the fact that we don't always understand his requests. 

Some of it may just be that he is almost three years old. He has also started to need to control his environment. For himself, by himself. The new house has a small playhouse in the back yard, which he recognized immediately as his. He took possession, filled it with his toys, and has been practicing ownership with it. He decides who is invited in and who is not even allowed to look in it's direction. I've decided to let him have all the control over his little house he wants and respect his wishes. I ask before visiting him, and allow him to tell me yes or no. Mostly no. The other night Aunt Marci was invited in (or at least her face was, while video chatting with him on my phone) but I was escorted right off the premises and back to the kitchen. I wish I had the option to allow him the same autonomy with his own body. Allowing him complete control of the little house is my compromise for him not being able to choose whether or not to allow strangers to touch him, hurt him, examine his body, invade his space. Having a child who is also a cancer patient completely wrecks the lesson that is so important for protecting a child against potential sexual predators- your body is your own. Nobody can touch your body without your permission. You choose when, where, and by whom you may be touched. I have started asking him for hugs and kisses often, just to give him the chance to say no and to observe me honoring his no. I would love it if other family members did the same when with him. If he says yes, it is an incredibly sweet moment. If he says no, it's just him taking control of something he can control, and it reinforces his body autonomy. It's win-win. Not that this is something I spend a lot of time dwelling on, but unfortunately we live in a time and place where we can not control every creep our kids will come into contact with. It can't hurt to be intentional about it.