When the feels get you

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

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

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

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

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

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

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

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

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

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

The fightin' mads

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

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

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

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

 

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

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

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

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

Exceptional genetics

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

November...

December...

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

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

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

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

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

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

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

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

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

Discharged....

At home!

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

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

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

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

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

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

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

A tale of tears. And tots. And teats.

Hi from the mixed bag that is Children's! Yes, here we are again. Although last time I thought we were in 7 west, this time we actually are. Last time we were apparently in 7 East, the HI-BMT (highly immunocompromised- bone marrow transplant) Unit. 7 West is a much more relaxed environment, even though gowns are required for anyone entering our room who will later enter any other room, and for any time we leave the room. But no mandatory 30 second handwashing session followed by slathering of Avaguard before being approved and rung in, no bleaching of all wheeled equipment like wagons and IV poles, no food restrictions as far as what can even come on the floor (as in, no berries because they can harbor fungus). But still, we are stuck in our room because of the pooping situation and not wanting to spread anything around, should it be spread-around-able.

I say mixed bag, because after four days at home, I was almost wishing for the orderly schedules of our week in our room on 7E. The room was thoroughly cleaned and wiped down twice a day, meals were only a phone call away for Daniel, a walk down to the cafeteria for us, and napping was highly encouraged. Plus with two adults, one adult could actually nap without fear of leaving two babies unattended. I made the discovery during my hospital stay after giving birth to Alex that a hospital can be a legitimate vacation. After B and D went home for nights, my only responsibility was bonding and caring for Alex. No laundry, cooking, cleaning...all was done for me. And now home also involves the terrifying responsibility of monitoring Daniel's physical signs for any abnormality, and the consequence of missing one is too overwhelming to even think about. Home is just where our stuff is, so a bit more convenient.

Home might actually be more homey if it weren't merely the rental of this particular year. I think back to all the places we have resided, and only the home we owned, the trailer house in Summit Cove, makes me get all nostalgic. And the farm felt like home, but in a different way. It felt like where our roots were, but it also, even with all of our improvements and updates, felt like my grandparent's home first, our home second. This house is not home. Our pictures and knick-knacks aren't out, the stains and burns in the carpets aren't ours, the smell when we walk in after a long period away isn't ours. I have been wondering lately what it might take to make a place home. Perhaps I don't know because we have never lived under one roof long enough to find out. And perhaps it is just sheer time. Or ownership. But that doesn't seem right. That seems like a first world problem.

I digress. My point is, whether a hospital room or a house, hotel or camper, home is where your family is, and in the hospital, the panic of caring for a sick little boy is taken care of for me. But eventually we are going to our house for longer and longer times. And at this point, I have spent very little time as sole caregiver to these two little boys. I don't even know if I can do it. Last night was a big test run for me, alone with them while B went home to sleep, then to work at 6am. So it isn't the strong pull of home that has me wanting to go there. Just mostly the access to outside, the ability to create my own meals, the convenience of having places to lay (or lose) the baby.

Goodness. Too many distractions while I write. I can't concentrate well enough to realize that I havent even told the story of our last few days. Just discovered that with a quick scroll up.

So our relief that Daniel was all cleaned out turned to concern as he kept overflowing his diapers. We stopped his laxative, since obviously chemo wasn't going to make him constipated, and still he kept going, and going, and going. The soiled laundry was becoming a problem. They don't make diapers to contain that mess. Then finally on Sunday night, he started passing giant globs of mucus, some of which were streaked with blood. Given the likelyhood and problematic nature of a bleed anywhere in his GI tract, we immediately called in to the hospital and talked to the on-call oncologist. She suggested that we take him into the local ER to run a few tests, but sounded like it wasnt super critical yet if he wasnt in a lot of pain. Which he had been rolling around crying, his hands clenched, but as soon as he had had his last explosion he had fallen asleep, so I asked if we could just monitor the pain overnight ourselves. She said we could, but then called right back to say she had had a look at his labs, and given his low, low platelets, she would much more strongly suggest the local ER. Could we just come down to Childrens ER instead? We asked. She didnt think we should do anything so rash just yet, our local ER could handle a C.Difficile culture (a bacteria that can overgrow with use of antibiotics and lead to major, unstoppable diarrhea), an abdominal scan, and some bloodwork. So, even though it was a new hospital to us, we drove over to Medical Center of the Rockies, who works more with Children's than our smaller hospital a few miles from the house. And spent four hours there while they ran labs and ordered a CT scan. They accessed the port on his chest for blood draws and fluids while I nursed him to keep him calm, something the ER nurse said was a new experience for him. After having given birth and coming home to two little boys, then spending almost my entire post-partum time so far in hospitals tandem feeding two ravenous boys, I have no dignity or personal space left. If my ta-tas can keep Daniel calm for procedures and vitals, I will not hesitate to get them out. I just wish they could manage to be a little less...beefy. Ridonculous. You know, if I'm going to use them as weapons against meltdowns and such. But apparently you don't make ridonculous amounts of milk without the milk makers growing out of their old facility.

When Daniel's bloodwork came back, the ER doc seemed a bit freaked out over his low numbers, his white cells, at 0.28 (normal range is 5.7-10.5) were too low to even do an ANC in their lab (absolute neutrophile count, the yardstick by which his immunity is measured, normal levels 180-540). Which, it turns out are 38, less than half of the low number of 80 they were on Friday. Nobody there felt comfortable dealing with such low numbers, so they were transferring us to Children's. They let us transfer him ourselves, since our vehicle was more of a sterile environment for him than the ambulance.

We got the Children's at 2 am, and sat in our ER room until 6, as they monitored him. Finally they determined him stable enough to assign to a room upstairs (they explained that they like to keep these kids in the ER for a while after they come in, since if they crash, they crash fast and more resources and equipment are available in the ER than in the patient rooms).

After we got to our room, we all fell asleep for about an hour. Even Daniel, who had been crying since he was cut off from breastfeeding at 2 am. Then Alex awoke, shift change, rounds...and Daniel awoke wanting food. And desperately sad and wanting to nurse. And then the meltdowns started in earnest. Hell hath no fury like a 'roided up two year old on a food binge, with a painfully distended belly that strangers keep wanting to push on, and an inflamed large intestine, denied food and his most efficient source of comfort. Hoo boy, the bawling, wailing, screaming that commenced, abated whenever he saw me just long enough for him to sign that he wanted to nurse, then resumed with a fury as soon as he realized I wasn't going to let him. Mom was being a certified jerk, and as such, she was not allowed to provide any sort of comfort if she was going to hold out on him with the boobs. Neither was his dad, because dad had no boobs. As long as I stayed out of sight, especially while nursing Alex, things went a little bit better. And by better, I mean that the wailing and hoarse screaming turned into a slightly lower pitched bawling and angry yelling. For fif. teen. long. hours. Oh, my nerves. I love the living stuff out of that boy, and I would do anything for him. I believe I have sufficiently proven this statement true by the fact that I did not lose my own composure even once. Even after having been up for 36 hours, minus a one-hour nap, the last fifteen of which sounded like an exorcism was taking place in our room, I stayed calm, encouraging, and provided as much soothing as I could, apart from my bouncing, delicious milky jugs. (This is how they are viewed by the two year old and three week old, more than by their daddy these days.) And then, the second he was approved for a regular diet, before the doctor was even out of the room, I ripped open my shirt and let him have full use of the elixir to cure all ills, the life-giving nectar, the boobs of all comfort. And instant, blessed silence.

Honestly, breast nomenclatures aside, I am struggling with this problem. I obviously did not see this coming when I chose not to wean him through my pregnancy. It was such an efficient form of comfort, supported by research and millennia of mamas nursing through toddlerhood, and it fit so well with our parenting style and lifestyle. It felt so natural, at least until the hormones created big aversions, but then it became personal and I gritted my teeth and pushed through, determined not to let my hormones win. And with his diagnosis came such relief that I had stuck it out, so I could continue to provide him with easily digestible nutrition and instant comfort through the worst of his cancer treatment, a comfort so potent that it could stop him mid-scream and put him into a calm, complacent, joyous place. It has literally been our biggest ally in this fight (although everyone else's help has been amazing, and I can't thank you enough, I am sorry it's all been trumped by one set of lactating mammaries, as far as Daniel is concerned), keeping him from even noticing some of the most upsetting situations. As soon as he latches on, I can feel his whole body relax, his clenched muscles melt, which I suspect even causes the pain, or his perception of it, to subside. When he is curled and clenched up, his fists curled into tight balls, his head smashed against his left shoulder, his knees drawn up to his chest, fifteen minutes of nursing makes him relax and sometimes even fall asleep, sparing us the need for yet more drugs. Until. (Waa-waaaw-waaaaawwww) he has to be NPO. When he isn't allowed any food by mouth, this includes breast milk. And then it becomes our kryptonite. It takes us down. Hard. There is nothing like asking for the one single thing you know will make your whole world better when you are stressed to the point of breaking by your constant hunger and raging emotions, and the person you have always trusted to meet your every need just sits there, in possession of said comfort, and refuses to give it to you. The magnitude of this betrayal is staggering. It is world-ending when your world is that of a two year old thrown into strange and terrifying circumstances.

Sometimes my husband reminds me that people just want the facts. They don't need to know how said facts made us all feel. Silly man. Of course everyone wants to know how one pair of melons (well, grapefruits) ruined everyone's day and were responsible for the river of tears we paddled upstream against all day.

So back to the facts. We were introduced to the scary prospect of Typhlitis. AKA neutropenic enterocolitis, a potential complication of leukemia and treatment thereof, with only about a 50% fatality rate. I can't imagine where their concern was coming from. Apparently a big concern is also a perforated bowel, and with his white cells and neutrophils so very low, an infection leading to this is a real concern and not to be taken lightly. His CT scan, when read by radiologists here at children's, showed no ulcerations, just thickening of the bowel walls indicating inflamed portions, which was a huge relief. As was the absence of C. Difficile, the nasty bacteria that can overgrow when antibiotics have wiped out beneficial bacteria and chemo and cancer have wiped out one's resistance to bacterial infection.

So here we are, pushing antibiotics, fluids and blood transfusions, hoping his numbers come up and he proves himself able to not shoot future meals out the leg holes in his diapers. Until those two things happen we aren't going anywhere. No clue what caused the projectile poop in the first place, most likely just another effect of one or more of his drugs.

But I have crossed a milestone of my own with this stay- my first solo night in the hospital. I know it's weird, but I am telling people I don't need any help this time. The help I've received has been amazing, not to mention it's been good girltime, but ever since his official diagnosis on April 23, I've known that eventually, I am going to become the primary caregiver to these precious little boys. We are going to spend whole days and nights together with no real back up, nobody to take the baby when Daniel cries, nobody to help me assess Daniel's health and decide it it's something to call in about or not. Someday I'm going to find myself being the chauffeur, chef, nanny, home-health worker, laundry service and housekeeper while my husband goes out and earns enough to afford my services. (Just kidding.) And. I have had no idea if I'm fooling myself that I can even do it. I had a few solo days at home and although I felt like I had a few big fails, especially in the housekeeping and dietary department, everybody stayed alive, so that was a win. But could I stay the night in the hospital with two babies, manage to actually sleep while keeping them simultaneously happy and asleep, and maintain my sanity? Turns out I can, and did. I feel pretty good about this. Daddy, meanwhile, got home about 11pm and slept a precious six hours before going to work. It was hard for him to leave us here, but I practically kicked him out the door. As mentioned before, his leaving the roadway in a moving semi truck due to lack of sleep, or crossing the center line into oncoming traffic is so not something I am in the mood to deal with right now. I would much prefer he get his sleep than have to deal with the possible consequences of him not sleeping.

Handling it. Sort of.

It was a good day today, if a bit of an indication of what is to come in our next three weeks. The worst effects of Daniel's "whammy" chemo on Wednesday finally wore off, and he felt less nauseated this morning. This left the effects of the steroids undampened. At first, we were thrilled that he was eating a few bites of eggs at breakfast...but our excitement turned to a bit of concern as he kept eating...and kept eating...and kept eating. Soon we were afraid he would throw up, since his stomach has shrunk so much in the last two weeks of only occasional nibbles of food. We finally took away his food, which led to a meltdown. And this has been the story of our day. The volatile mood swings are starting.

 We went over to the Seven Lakes neighborhood and took a long walk along the bike path  into Boyd Lake State Park, marveling the whole time how how normal we felt, it sort of just felt like we were on vacation. It only took a day off work, a four mile drive and a little walk along the shoreline to put us into relaxed vacation mode. We extended our vacation with outdoor burgers. But then it was back home to clean the house, and vacation was over. We have one more day before the next well is up and Bobby has to go back to work, so maybe another two-hour vacation/walk can happen tomorrow. The sanity was helped greatly by today's. It ended with another meltdown over not being able to stop eating dinner, even though the tummy was painfully hard, bloated and gassy from his day of suddenly being obsessed with food. He cried himself to sleep, curled into my body so tightly it seemed he was trying to somehow melt himself back into my womb, while simultaneously clawing at my face and trying to push it away.

The bright spot of the evening was, ironically, giving him his meds. He bravely swallowed his foul-tasting dexamethasone, then cheered and clapped for himself.

After he had finally cried himself to sleep, I took Alex from Bobby, who was holding him on his chest and dozing, and nursed him into a state of calm, then climbed my sweaty, sticky self out of bed to brush my teeth and take a shower. As I was showering, I realized I couldn't actually remember the last time I had done so. I consulted the stubble on my legs and decided that judging by that, it must have been about three days ago. Then I turned off the water, only to hear Alex start to wail, so here I sit in my underwear in the living room, rocking and nursing him. The child is a bottomless pit. He is filling out, turning into a chunky little monkey, with wide, surprised blue eyes taking in as much of the world as they can before they cross. Already, the differences in personality between him and his big brother are becoming obvious. Alex has less of his dad's pragmatic stoicism and more of his mom's intolerance of BS. He calls it daily on being ignored, or not being constantly fed, or just general discontent over tummy bubbles and other discomforts. Which is necessary. If he didn't do so, I might actually forget he is here in the insanity that big brother is creating in our house these days.

Oh, and this: brushing Daniel's curls after his bath tonight, I am suspicious his hair has started to go. No missing clumps yet, but just an all-over thinness and lifelessness that wasn't there before. I'm in mourning over it, and my sentimental obsession is reaching new heights as I bury my face in it to smell it and feel it tickling my face, memorizing the color and the way it swirls and curls, but in a way, I almost look forward to it being gone from the standpoint that when we are out and about, pushing a stroller full of an overweight, hysterical child who looks like he should be able to walk on his own, maybe his bald head will clue people into the fact that he is not the ill-trained brat he appears to be, but sick.

I have received so many compliments lately on how brave and strong we seem to be in the face of this nightmare. I don't entirely know how to respond to this, so I say thanks. Or I say maybe we just haven't realized yet what is coming. But honestly, I think it's that this is our road taken, and as such, it is easier to be the ones experiencing it than the ones standing helplessly by watching it. If i had to watch someone I love going through this, I would probably feel a whole range of emotions I am spared from by being in the middle of it- guilt over not being able to help, imagination going wild over how hard it must be, guilt over forgetting about it sometimes and just going on with my life, knowing that they had no option to forget or be normal. All things that I don't need to feel. And lest anyone think we are actually keeping it entirely together, here are a few honest confessions that might change your mind and convince you that we are normal after all:

Several times today, i have gone back to where I left the newborn...only to not find him there. Then I have to think back to where I actually left him the last time I had to lay him down to deal with one of Daniel's problems.

I went to the park on Thursday to an outdoor play group, and at one point left both babies with the other moms to go to the car to get a hat for Daniel, and moved the car to a closer parking spot at the same time. As I was driving, I had the thought that if I was gonna make a break for it and just keep driving, now would be an excellent time. Both kids were in the capable hands of five responsible women.

I carried my cell phone to the car to look for my cell phone.

Both Bobby and I slept in our clothes last night because we didn't have the energy to shower or locate pajamas. And we didn't brush our teeth either, because our toothbrushes were still in the overnight bag in the car.

Bobby went to the store tonight to buy three items: a new toilet seat (because the old one bucks us off sideways when we sit down less than perfectly aligned because a bolt broke), refrigerator magnets (to handle all of our new paperwork and information that needs to hang on the fridge), and Glad Press'n'Seal (to cover Daniel's port with on infusion days after we spread numbing cream on it). He came home with three items: Glad Press'n'Seal, new toothbrushes, and antibacterial wipes.

We felt a little angry about all the healthy kids running around the park today. Then we felt angry that we felt angry, because we don't wish ill on them, and we could have it so much worse.

After all of Daniel's fluids that accompanied his chemo yesterday, his diaper failed overnight. I awoke lying between my little boys, my back soaked in toxic chemo pee, my front soaked in breastmilk. So I pulled off my shirt and threw it on the floor, got up and grabbed a towel, laid it over the puddles, changed Daniel's diaper and Alex's pajamas, and went back to sleep. Life is too short to get four people out of bed just to change the sheets.

Yesterday before leaving home, we had to cover Daniel's port and lower back, site of his lumbar puncture, with numbing cream. I forgot his back. Then we had no Glad Press'N'Seal to cover the cream on his port with, so I borrowed some from a burrito in the freezer.

The smallest baby spent a good part of his afternoon in the swing. I'm probably going to baby-wearing, hippie-mama hell. Especially since neither of them have worn cloth diapers for several weeks now.

And on that note, the tiny one has finally fallen into a milk coma, and the bigger little is making sad noises in the bedroom,  probably having awoken to discover his mama wasn't there. Good night to all of our dear ones out there who care enough to check in on us here on the blog!

Go Fund Me link

I couldn't get this address to link down at the end of my last post, so here it is again: http://www.gofundme.com/t4mdbck

Clinic newbs

Hello to our dear ones! Life is looking good for various reasons right now. It has been a day of blessings that more than cover the sadness of having to go in for another day of chemo and platelets.

I have to be honest, last night was possibly the most trying one for me in a while. Even more so than the hospital. I went to bed dead on my feet, with a husband who had not slept any significant amount of time in the last three days and was possibly even more tired than I was, and two babies, one of whom is a 2.5 week old who still hasn't decided that night time is for sleeping, and a two year old who is going on day number nine of twice per day steroids, which are messing with his sleep. So when one baby cried, they both did. When I was up with one, the other awoke immediately and loudly discovered my absence. I even committed the unpardonable sin of falling asleep in the recliner holding the smallest baby, even though I had only gotten up to suck his boogers out of his nose so I could nurse him instead of just lying there as he snorted, gasped, and licked me. I only sat for a moment for getting back up and going to bed...and woke up an hour later. I finally gave up on sleeping and was up well before the alarm rang to rouse us to leave by 8 am, so we could be down at Children's by 9:30. As it was, I still had no time to grab any breakfast, so washed down an iron supplement with a swig of V8, called it a balanced diet, and rushed around packing just in case we ended up spending the night. (Big thanks to Tina Latham and Christina Alpert for providing us bags of sundry items essential to a hospital stay, ranging from Chapstick to super soft blanket to ink pens to trail mix, cookies, and plantain chips to fingernail clippers. Stuff you don't think of unless you have been lying awake in the middle of the night in a hospital room with no option of procuring them, lessons learned through their times as a patient or caregiver.)

Even with a bit of backtracking (we tried to save money by skipping the E470 tollway, and two miles later, decided we had no time to get caught in a traffic jam, so turned around and caught I-25 back northbound to take the tollway after all) we made Childrens in an hour and five minutes. Not too bad. We once again expressed our gratitude that we only live an hour, instead of four and a half hours away from the facility we will be visiting at least twice a week for our foreseeable future.

The clinic was a nice experience, if involving of a lot of waiting, since they were pretty busy. Much more low-key than the last procedures in the big OR. Alex stole the show, as usual, and Daniel was as stoic as usual. I even left to go get lunch before they came to get him, so his dad held him as he drifted off to sleep for his lumbar puncture. This is how relaxed I am getting about my baby undergoing anesthesia. (Well, that, plus I was about to pass out, thanks to my balanced breakfast.) They drew spinal fluid to check again for cancer cells, plus a bit extra for saving and testing because we are in a clinical trial, injected methotrexate, his fourth new chemo, into his spine, then before he woke up, another dose of Vincristine, his second time for this particular chemo, into his chest port. I felt the other parents in the waiting room appraising us, the family who's child still possessed a full head of hair, with a bit of a "poor you" air, since we were obviously freshly diagnosed, not even on chemo long enough to have experiences hair loss, and obviously out of our element, bumbling about in a hospital maze, not sure where we were going or what to expect. They were the shiny-headed veterans, we the shell-shocked newbies.

Daniel's appetite has been nonexistent lately, in spite of predictions that his steroids will make his legitimately "hangry" the longer he is on it. Hangry as in, hungry/angry. We have been warned to expect full-on 'roid rage by the end of the month, plus such an increased appetite that some kids will push back from the dinner table just to vomit and return to the table to do it all again. Not to mention increased hormone production giving him a fat, puffy face, neck, shoulders and belly. So far, we haven't experienced any of this, just nausea and weight loss from the chemo. We actually thought we were experiencing quite a bit of attitude from him, but were sent back to reality by the sight of a kid today at the hospital in the middle of a full-on screaming tantrum. We realized how far we have to go yet from his matter of fact "no" to everything we suggest, to lying down and screaming because he was asked to pick up something he dropped. They also told us to not expect him to really attempt to walk until this month of steroids are over, because they cause muscle weakness in core muscles, legs and thighs, which makes walking painful in their own right, without being compounded by existing atrophy from a broken leg and the aching pain caused by the cancer in his bone marrow creating outward pressure in his bones. But we are still supposed to encourage walking. Sigh. This seems like an exercise in futility right now. We entertained ourselves while waiting for his procedures by watching cell phone videos from our vacation this summer of him walking, running, riding his trike, and from our ski trip in February of him swimming, ice skating and skiing. It was a good reminder that he has not always been broken, and he will be back to being his athletic, active, happy self someday.

Before we left, he also required another platelet transfusion. This was also a relief, because I had been thinking his lips were looking pale again, so we had also expected another blood transfusion as well. But his red blood cells were good.

It had been three days since his chemo that causes the most nausea, and he awoke this morning wanting food for the first time for three days. Of course, he had to be NPO (no food) until his procedure, but they gave him some Zofran (anti nausea) during, so as soon as he woke up they let me lie on his cot with him and breastfeed him. After that had primed his stomach, he proceeded to eat a single-serving package of animal crackers. On the way home, we bought him french fries, just to witness him enjoy food again, and he cleaned them out and held out the empty carton for more. This was more food than the total amount he has eaten in the last three days. When we got home, he chugged some carrot mango V8, and as I write he is nursing again. He even crawled across the floor on elbows and knees (his wrists hurt too much to use them for crawling) to come to my chair to ask for it- first time we have crawled anywhere by ourself instead of just crying to be carried in a long time.

Oh yeah, and this- no more worrying about him being constipated. We have been giving him a laxative for the last five days to get things on the move after anesthesia and pain meds. Yesterday, a near blow-out. Today, two exploded diapers. Down the legs, up the back, soaked carseat, then soaked recliner, the poor boy is cleaned out.

So things are looking up. Like the first signs of green in the spring, even if you know that many more episodes of freeze are still coming. Small things that will slowly become big things.

We left the hospital and loaded the babies into their carseats in the parking garage, where I looked down and noticed a piece of paper peeking out from under the vehicle. It looked like some sort of foreign currency. I picked it up and realized it was a new-style $100 bill. What?! B and I discussed how we could possibly find it's owner, looked around for cameras that might identify who had lost it, because as lucky as we felt finding $100 fluttering around, someone else also had reason to be at Children's hospital, possibly with a child sicker than ours, and had lost $100, making their day a really bad one. But we finally decided that finding it's owner would be next to impossible, and decided it would cover the next four weeks worth of tolls on our trips to the hospital.

And speaking of, my cousin Weylin Unruh has started a Gofundme page to cover Daniel's medical expenses and other expenses incurred over the next three years. We are slowly coming around to the idea that perhaps we can accept help from others. This, honestly, has almost been harder for us to wrap our minds around than the fact that our baby has cancer. Cancer, after all, has touched both of our families before. Bobby lost his 32 year old mom to breast cancer when he was seven years old, and my own mom has recently won a hard-fought victory against breast cancer, only a few years after my grandpa lost his battle with stomach cancer. Although it feels like a punch in the gut, it also feels like life. Why is it easier for us to accept that life is hard and every day that goes by without a game changing tragedy is an incredibly good day than it is for us to accept that people want to help make it easier for us? We look around, and all around us are people who have it harder than us, and who's needs are greater than ours, which makes us want to be all "aw, shucks" about our own daily issues and needs. But we are also coming out of the crisis management mode of last week, accepting that we have a brand new reality now. All last week, we were in such a haze of gratitude that our child has a curable disease and at the other end of his chemo marathon, we have a 90% chance of still holding and cuddling him, not burying him, that the details and logistics of making that happen were lost on us. By this week, we are realizing how incredibly thankful we are that we stayed on our good insurance with both premiums and deductibles we didn't think we could afford, because it turns out you can afford pretty expensive insurance when you realize how close you came to having to pay six-digit hospital bills on a five-digit income. But all the same, we are in a bit of a financial valley right now, thanks to the oilfield cutting wages, not to mention a lot of time off work for sickie times and trips to the hospital. My parents have spent a lot of money driving to see us, filling our fridge while here, buying diapers for us, etc. If someone wants to help them with some gas and groceries, or help us with the things our insurance doesn't cover like prescriptions, or send freezer meals, or donate to Daniel's Gofundme at http://www.gofundme.com/t4mdbck for random unforeseen expenses, we are now getting to the place we won't argue or try to turn it down. Accepting help is also our new reality.  In spite of our guilt over not being able to return the favor right now or do anything but humbly say thank you and hope we can pay it back or forward some day. And it is humbling. But also such a blessing to realize how many people care, and how much so.