Love in the Time of Streptococcus

Word is, we'll be in the hospital for at the very least two more weeks. Likely strep contamination in his port and/or line means the line will have to come out, be replaced after 4-5 days of heavy antibiotics, then two more weeks of IV antibiotics after that. Technically, he could go home while on his IV antibiotics, but since this happened at the exact same time he got a chemo whammy that is knocking his immunity back to practically nothing, he has to stay here until his counts go back up (ANC has to come back up to 200 after hitting bottom, and for those of you who know or care about such things, it's 400 now and on it's way down.) Which takes at least two weeks. In the meantime, I suspect any day now our counts will drop to critical levels, plus we will simultaneously have surgery to remove the port, further stressing his body out and introducing added risk of infection, so for his own safety we will probably be put on contact precautions and be stuck in our room in isolation. So before that happens, we are spending every waking moment in the halls and activity room.

And Alex...Daniel's nurses and doctors have seen him grow from the nine day old celebrity sibling of their newest diagnosis to the ten week old brother of the kid fast becoming a veteran. Our first admittance, he was a newborn who either slept or ate twenty two of twenty four hours a day. The second time, he still slept and ate, but also learned how to scream. Our third stay, he was tempting himself with learning to smile. And our fourth stay, he is a strapping, cooing, talking charmer one moment, and demonstrating amazing lung capacity, alerting the entire floor to his distress the next. 

I scanned Daniel's records the other day for anything his care team might have "forgotten" to tell us, something I have learned through the course of several family health crises is a very informative thing to do. I did find out a few things I didn't know, just minor things related to his cancer genetics, procedures, biopsy results, port placement, etc. And discovered that half the staff thought Alex was a girl because it got put in one note field early on, probably thanks to the fabulous hand-me-down pink organic muslin swaddle blanket I wrapped him in the first night or two we were here. And future notes got copied from that one, and I didn't bother correcting people who referred to him as "her", and by now Daniel's chart is full of references to Daniel's parents and baby sister. So even those who held and exclaimed over him, and come in to see how he's grown, are occasionally surprised now that he is wearing more manly clothes. 

It is amusing to see the random things that ended up in his chart. "Mother of child also reported having loose stools". I'm sure I did. But also, it was good to read it noted, the night of his diagnosis, that we were doing exceptionally well with it, and it even helped relieve a little of the mommy guilt over recently having to put Alex's demands over Daniel's by seeing the notes after almost every doctor's rounds saying "child was resting comfortably on the bed with his mother", "child was irritable and being held by his mother", "child was calm and sitting in chair with his mother", "mother reported inadequate intake of solids but frequent breastfeeding". 

Next morning update: I asked a nurse last night after writing this what the culture from his arm, the control sample, was doing by now. She said the culture from his arm was positive, but the culture from his port was negative. Huh? So her opinion was that if the cultures from his port stayed negative, they probably would not yank his line. Which is good news, as far as not having to have another surgery. But also worrisome, because they were clear last time too, and it came back. The last thing we want to do is come back and do this all again. His doctor said in hindsight, they should have taken the first one more seriously and treated it more agressively instead of assuming it was a contamination from his skin (three days of vancomycin seemed fairly aggressive to me, but hey.) They are not making the same mistake this time. This time he is on a 24 hour a day vanco drip, plus multiple daily infusions of cefapime....

Aaand two days later: Interruptions. Always with the interrruptions. Go ahead and disregard the updates in this entire post. Instead of going down, his counts came up. His neutrophils were supposed to go down to practically zero, then climb back to at least 200 before they would let us leave, and this should have taken between one and two weeks. Instead, they bottomed out about 320, and instead of trending down from there, they started trending up. I have mixed feelings about this. As does his doctor. I finally got to have a long (by doctor's standards) conversation with her about our mercaptopurine schedule, and her suspicion that we may have sabotaged this cycle a little bit by allowing him to nurse as soon as an hour after his doses. With less impact to his body from the chemo comes less impact to his cancer. So the good news is, he responded well to antibiotics and his cultures started coming back clear, whether from his arm or his port. So he did not need to have his port removed. And with his rising counts, they felt confident sending us home with IV clindamycin, an antibiotic less potentially damaging to his kidneys than Vancomycin. They felt that he successfully could fight off an infection from whatever traces of bacteria was left in his body with the help of seven more days of antibiotics. So we are on an every-six-hour clindamycin schedule, with prefilled "homepumps", little bags that contain some sort of magical and mysterious mechanism that squeezes out the medicine at a predetermined rate. 

This is the first time we have had to do anything with his port at home. I was nervous leaving the hospital, but they assured me that a home health nurse would meet us with the supplies upon our arrival back home, and would demonstrate how to use them, hook them to his port and run them, then unhook and push saline and heparin into his port. I was beginning to panic a bit as five o'clock, when he was due for his next dose, came and went with no nurse showing up. Finally a courier showed up with the supplies, but no nurse. After a long time on hold with the hospital and the home health company, the nurse called me, apologetic, and said she had spaced our appointment, but she would walk me through it on the phone. By this point I had read all of the instructions, so I knew what to do, and with her prompting, it really wasn't a terribly big deal, but it was a little bit disconcerting giving him the first dose of at-home IV meds with no actual training. But we bumbled our way through it. I mean, if an addict can successfully inject an intravenous substance in an ill-lit alley, it doesn't seem like it should be rocket science to do it in an existing port, no pokes required. I put a button down shirt with a pocket on him, stuffed the little bullet of medicine in the pocket, and let him play, then successfully flushed it with saline, hep locked it and felt a little more in control of this whole crazy train. 

We got to spend time in the playroom this time. Last time we were there, we were in isolation and did not get to enjoy the spoils of cancer, which is the generosity of people who do their best to help these kiddos forget they are not normal. One of these things is the playrooms at the hospital. I have to hand it to the volunteers, if I stocked a playroom in which every toy touched had to be sterilized before it is touched by another child, I would not stock it with leggos, Jenga, matchbox cars, play kitchens, play shops, or games like Hi-ho Cherrio. I'd throw a bunch of great big toys out there and call ot good. But the volunteers spend their days sanitizing and resanitizing every toy touched, then returning it to it's designated spot, only to have it be picked up, played with for fifteen seconds, and then discarded in the sheer excitement of limitless toy choices.

This stay in the hospital we also were able to have casual visitors, including, since flu season is now past, kids under 13. This meant Daniel's three year old friend Baron could come visit. The two of them officially trashed the play room, and then, in an ultimate display of the sheer genius that is a child's ability to drive their parents insane, took advantage of the option to take one toy each back to the room, and each chose an identical little plastic lawnmower (of course there were two of these instrument of evil) with balls housed inside that spun when pushed and made the most unholy racket. And then chased each other around the room, the lack of textiles in the room making for the most deafening rattling and clattering. Daniel has had some sort of ailment every time these two have hung out. It started out as a fluke- he got a stomach flu a few hours after having played with Baron the first time, forcing me to call Baron's mom and apologize in advance if she ended up cleaning toddler vomit out of a rental house carpet, as I was. The next time, a few minutes before Baron walked in, Daniel went down hard with an ear infection. The next time, playtime got cancelled because he broke his leg. And after that, his attitude was terrible because he didn't feel well or was on steroids. So this time was the first time he brought his own personality, and the two boys realized they shared a love of destruction and noise. And proceeded to destroy things and make noise. Their playtime was interrupted by Daniel needing the dressing changed on his port, so both of them had to wear masks to minimize chances of infection, which neither of them loved. Daniel so rarely gets to play with other kids that when he did, he completely overdid it. So much so he was practically comatose for four hours straight after Baron and his mom and baby brother left to go back home. 

A few hours into his nap, the skies over Denver darkened, the wind kicked up, and rain began coming down in sheets, obscuring the lights of Colfax Avenue below. Then a tornado warning was relayed over the hospital intercom, and nurses burst into our room, and with no delay, shut our blinds and wheeled Daniel and his IV pole out into the hall. He slept through the entire thing. 

As this was happening, Aunt/godmama Mary was flying into Denver. The storm didn't delay her much, and Daniel had just awoken from his nap when she walked in. She had planned to come to Loveland and be my adultier adult for a few days, but instead she caught a shuttle to the hospital amd spent her evening humoring a two year old who, after having been non-mobile for four months, was suddenly trying to make up for lost time by demanding that she follow him evrywhere, admire every toy, play every one of his invented games with him.

This morning after breakfast, Daniel went for a walk in the hall, unhooked from his IV pole for the first time in three days. He wasted no time heading for the playroom to climb in a plastic push car, the all-time winner for best toy to ever grace the halls of a hospital. Well, that and a small plastic egg from the kitchen playset. The egg became his second favorite toy. Don't ask me why. The mind of a two year old is a very confusing place to everyone except it's owner. But between the car and the egg, the boy stayed entertained. And then spotted a soon-to-be friend cruising the halls in the other car (there are two of them). Simone and Daniel had fun driving back to the playroom together, then sat together and shared toys in the playroom while their moms traded war stories and took pictures of the cumulative sweet strength that is two tiny humans given a raw deal in life right out of the gate, teaching their adults how to roll with the punches and come up smiling.

Bacteria, part deux

Hello and welcome to the beautiful place that is Northern Colorado in the summer time. When he left, Daniel's dad predicted two things would happen – Daniel would start walking, and he would lose his hair. Both happened within one week of his leaving. The hair on top of his head finally got thin and patchy enough that I took a clipper to the rest of it, even though everywhere except the crown and back of his head was still fairly firmly rooted. It isn't completely gone, I left about a quarter inch. Just enough that it looks intentional. He looks like a beefy little shiny-skulled tough guy. As for the walking, this was starting to happen before Bobby left last Friday, but Daniel took his first unassisted steps on Tuesday. We drove down to Denver to Dr. Jeff and Christina's house to meet and play with cousins Ariel and Ahna on their way back through Denver. At some point during the day, he forgot he couldn't walk. One moment he was cruising along the couch, using it to hold himself up, then he was holding an adult's hands for dear life, then he got excited and when the adult stopped, he kept going, flailing his arms, flapping his wrists, his left hip bowing out with each staggering step, but he was walking. This was, of course, accompanied by much fanfare. Clapping, cheering, you'd think the child had just discovered the cure for cancer, not merely started walking again after four months of immobility due to cancer. Although, when you put it that way, it's still a pretty big deal. It's not like he's walking everywhere now, he still prefers crawling or walking with plenty of assistance for stability, but across the room, down the hall, across the playground, this is enough. This was also our goal of six months of physical therapy, which we have yet to even start. I called our case manager and discussed this with her, and we decided we would simply set new goals since he still is not functioning as a normal two-year-old. I am so thankful to live in a place where things like therapy are possible. Not that they wouldn't have been possible in western Kansas, but a little harder to come by.

So far Bobby says work is been good in North Dakota. He has stayed busy, which is more than some of the other drivers up there can say. He sends me pictures of the surprising beauty that is the Bakken oil field, sunrises behind oil rigs, lakes and lush green fields. I suspect he is kind of enjoying the manly life up there with the boys. Apparently the accommodations are much better up there for the drivers. A whole trailer- lounge, laundry, TV, showers, kitchen, everything a boy needs to live apart from his family.

Word is, a few jobs have been found in northern Colorado for the drivers who want to stay here. Although they are over the road regional hauling type jobs, beggars can't be choosers. At this point we will take what we can get. This company has been so good to us, allowing Bobby to take time off to attend appointments, even when unscheduled. Bobby's dispatchers know by now that he isn't a flake, so when he needs to flake they are understanding. This would not be the case in any other company we would hire on with at least for several months. It would be a rough transition. Word according to the late night social hour that is oilfield truckers and their CB radios says Halliburton has laid off a lot of crews in this area. This does not bode well for any more local work being found. Or at least not in the oil field.  We did not move to this area for the oil field, the oil field made it possible for us to move here. And now it may be time to move on. Bobby has been searching for work in the Denver area and all over the front range, and it isn't that the jobs aren't out there, it's that the jobs that are there don't pay well enough to support a family of four on one income. This is caused quite a lot of guilt on my part. I know I should not feel guilty for staying home and raising my children, but it kills me to see Bobby working such long hours so far from home while his children forget who he is. Not that it takes long when one's children are a toddler and a baby. But I feel I should be contributing somehow. I have been looking at the possibility of going to school, even though I know this is so not the time of my life to be thinking about such things. And I really don't see how I could do it without a relative close by to watch my children, because for what daycare charges we would be broke before I graduated.

Friday was clinic day. I drove us down in the morning for our 10:30 check in, feeling so very thankful that the horrible starving steroid days were behind us, because he has to be NPO for eight hours before his lumbar punctures and in the past, having a procedure scheduled for midmorning instead of first thing was cause for hours of inconsolable crying and asking for food. His current lack of appetite is heartbreaking, but it does make for calmer days when he isn't allowed to eat. Nevertheless, he was still pretty sad about not being allowed to nurse by the time our 11:30 lumbar puncture for his intrathecal injection of Methotrexate had been delayed until almost 12:30.

We entertained ourselves in the clinic room by driving cars around the bed and "accidentally" crashing them onto the floor, and watching Finding Nemo on the little portable DVD player that was given to us by "Bags of Fun", a bag of toys sponsored by local businesses and charities during our first admittance.

This was the first time I was the adult to engage him as he fell asleep. Usually Bobby holds him until he is asleep as I stand in the doorway watching but out of the way. Since I was also holding Alex, the staff was more involved with entertaining him, and as soon as they hooked the big syringe of Propofol up to his line, he grabbed it to investigate. They told him he could push the plunger in if he liked, and boy, did he like. The kid is becoming more and more engaged with his own care and procedures, and more familiar with the routines. He will call his nurses on forgetting to take his temp during vitals, show them where the blood pressure cuff goes, which finger to put the pulse oximeter on, and precisely where they should place the sphygmomanometer when listening to his lungs. He had the proudest grin as he laid himself back on the pillow, then reached over and grasped the syringe with one hand and the plunger with the other and began pushing it in. "You are how old?" His nurse laughed. And then he began to yawn and stretch, and just couldn't keep his eyes open any longer.

All three bays of the recovery room were full, so I waited in the hallway until one opened up, they brought Daniel in, and he took full advantage of the fact that it was his normal naptime and took a two hour nap. They eventually determined he was out from under the effects of Propofol and just sleeping, so they gave him his IV Vincristine and started his PEG-L-aspariginase in the recovery room. He finally woke up, and began gagging like he was going to throw up, even held the emesis basin under his chin by himself, he was so sure he was going to, but nothing came up, so I put him in his stroller and we wheeled him and the IV pole to an infusion room, a tiny closet version of the inpatient rooms, and they left us there, and no sooner did the door close behind our nurse that he threw up all over himself. Not that he had much to throw up, just a few sips of apple juice, but enough to soak all of his clothes. Then he became extremely stiff and shaky, so I tucked him into the bed, and instead of being able to comfort him like I wanted to, I had to deal with Alex, who had chosen this moment, after having alternately eaten and slept all morning, to wake up and scream his head off. And so began an extremely stressful several hours. I could see Daniel shrinking further into a ball under the covers, shaking more violently, but I couldn't do anything for him, even try to comfort him, because the instant I lay Alex down, he began screaming. Daniel was crying, shaking and moaning under his covers, and I put noisy Alex down to check on Daniel just in time to catch more barf in a towel. As I was cleaning him up, I noticed his skin taking on a bit of a splotchy purple color, like all the tiny capillaries under his skin were swollen. By this time, a nurse had come in the room, so I pointed this out to her. She took his temp, and sure enough, it was going up and his heart was racing, but his blood pressure was normal and he was not swelling up, so this was not the "normal" life threatening reaction to PEG that they monitor so closely for. They called the doctor, she stopped the infusion, ordered some tylenol, and within fifteen minutes his shaking had mostly stopped, his muscles had unclenched, and his temp was holding steady, if still elevated. They cautiously restarted his PEG, standing beside his bed with an anaphylaxis kit just in case, and monitored him visually through the rest of the infusion while I rocked and bounced Alex, feeling incredibly guilty that I could not be holding Daniel instead, not that Daniel seemed to care. Once the infusion was done, they monitored him for another hour, during which time he rallied, his fever subsided, and he became a bit happier, even daring to drink some water, which he promptly threw up. But then he wanted more, which he kept down. They drew blood cultures, since he had been running a fever, then de-accessed his port.

We escaped a little after six, the rest of the clinic quiet and dark, receptionists and other patients long gone. Since I had not eaten breakfast or lunch, and had devoured all of the snacks I had brought hours before, we stopped in the cafeteria and got a sandwich and french fries, fries being one of the very few foods Daniel will attempt to eat these days. He ate two of them, and they stayed down. I ate the rest. Inhaled, more like. Then we hit the road for home, navigating Friday evening rush hour traffic out of Denver and up I-25. The babies slept while I drove, but both awoke the moment I pulled into the driveway and loudly restarted their sad symphony. I felt the need to stress eat, but with all the distractions, even had to give up on that. I sat Daniel down in front of the TV in the hot, stuffy house and bounced, rocked,walked and jiggled Alex to no avail, the small boy was still inconsolable. He momentarily got happier when I took him outside where it was cooler, but even that didn't last long. And then, after two hours of finally almost beginning to understand why people shake their babies when my bouncing and rocking got more and more frustration-based, the tiny blessing exploded, sending a mind-blowing amount of curdled milk all over me and the recliner. It ran down me and puddled between my legs, and then I didn't dare get up, lest it run back down into the back of the chair and live there forever smelling ripe and cheesy. I sat there hoping my pants and underwear would soak it all up, even wiggled and slid around in it a little trying to mop it up with my butt and legs, feeling particularly undignified and put-upon and asking my former carefree, childless self where, exactly, we had gone wrong. Finally, my pants having reached maximum absorption, I stripped off Alex's shirt and used it to mop up the worst of the slime, put a now grinning, cooing, droopy-eyed Alex in his swing, and peeled off my soaked clothes, finally able to attend to Daniel who had been tugging on my shirt repeating, "Boo? Peeeeease?" For quite some time already. Which didn't make me feel any less guilty about neglecting him since when his nausea will allow him to nurse I make every effort to accommodate him, since he needs every bit of nutrition he can manage to keep down.

And then Marci arrived. The fact that she was coming to see us had kind of gotten lost in the chaos earlier in the day, but she showed up just as everything was calm, and we had a lovely late evening. Except that I couldn't keep my eyes open. But she watched babies and read books and played cars with Daniel while I took a badly needed shower, and pretended not to care when I couldn't find a single pair of clean comfypants to wear afterward so opted for pantslessness. And then she and Daniel went to her bed for snuggles and books, and I took a sleepy, sticky, unbathed two month old to my bed.

The next morning we did nothing much, just played with babies, watched a little netflix while pretending to fold laundry and clean house (well, I pretended. She succeeded in folding piles of laundry in such neat piles I'm pretty sure my closet felt little shivers of delight.) I was finally getting serious about getting the house clean, had almost all of the laundry washed, if not folded, when the phone rang, that unwelcome number showing on my caller ID. That number ending in 1234 has come to spell dread for us by now. It was an oncologist at Children's, calling to tell us that Daniel's cultures were growing things. Pack your stuff and come down ASAP to be admitted and start antibiotics.

So we rushed around packing. And silently cursing. Well, some of us, anyway. One of us. Fine, me. I muttered things. Mostly under my breath. I had a hospital bag still packed from last time, but Alex had grown out of all of his clothes in it, and I had taken most of my clothes out of it to wear in the absence of clean laundry, so I repacked it. We made arrangements for the neighbors to watch Andy, and hit the road for Denver, Marci following me so she could drive back to Kansas from the hospital the next day.

After our four hours in the ER, sitting and waiting for almost two hours for the doctor to find a moment in the middle of dealing with real, actual emergencies to pop in and assess him and order IV Vancomycin (antibiotic), then for it to push over an hour, then an hour of observation, we finally got up to a room about 9:30. As usual, I got the comfy but overcrowded hospital bed with two babies, and Marci got the torturously hard couch.

It appears this is the same strain of strep that we had a positive culture for last time. Since it is rare to have an identical infection twice in a row, they are suspecting his port or the line from his port into his artery may be contaminated. They drew cultures from his arm today to see if they are negative, and if they are, and subsequent cultures from his port are positive, they will probably have to yank this port out and replace it. Which isn't the worst surgery, obviously, but still invasive. His temp is staying low, and he doesn't act like he is feeling particularly awesome, but it is also two days after a pretty intense three doses of chemo. He threw up the few bites of rice cake he ate for breakfast and has not eaten, only nursed since. The worst thing about these suspected infections is the timeline. The cultures have to sit for 48 hours before they can be declared negative. So even if we are perfectly healthy and the infection is either gone or never existed, we are still at least 48 hours from being discharged. Which is unlikely, considering they will want to find the source of the bacteria this time so we don't have to keep coming back. Well...although...a more cynical person might reflect that since our last 48 hour contamination allowed them to charge our insurance another $34,000, perhaps it is somewhat profitable to keep these rooms full. Not saying that. But one of Daniel's parents likes to speculate on such things as he is driving all night through the great Bakken oilfield. Such a cynic, that one.

On that note, we also noticed that the subcutaneous shots of Cytarabine we give Daniel at home are costing our insurance $5,000 a pop. Drug dealers make all the bank.

This morning, we decided to send Marci back to Loveland for Andy, so she could take him home with her and he could spend the week at my parents. They can bring him back next week when they come up here. Mom has her six month cancer checkup (three years now) in Edwards next Monday, then she plans to spend the following week with her grandbabies.

While she was gone, the wee ones napped briefly, then I begged the activity room key off of our nurse and took Daniel to play. He found his favorite toy, a ride-in car, and promptly became dissatisfied with merely driving around the play room, so we went out into the hall and "drove" up and down the two hallways that comprise the north and south sides of our floor. Marci returned and we took turns letting him "nearly run over" our feet, which he thought was absolutely hilarious, and we thought was the best sound ever, his shrieking giggles which turned into hiccups.

He also walked his farthest distance yet today. One end of the hall to the other, only holding my hand for help balancing. (Yes, it took me so long to finish this post he has gone from walking across the room to walking the length of the hospital hallway between the third paragraph and this one. I actually started it on Monday morning before all heck broke loose.) He was so exhausted and shaky by the end he could barely stand as he clutched my legs asking to be carried. He has taken several naps today because the way he keeps overdoing it with his activity, he keeps wearing himself out and has to sleep and rally before hitting it again.

I have written myself a note to remember to call the fire station just up the street from our house tomorrow. I had a fire station tour booked for him at 1:30. He has become so obsessed with firetrucks, I called and asked if anyone might have the time to make a two year old's day and show him a real live firetruck. They were quite accommodating. But that's how it goes. Man makes plans, bacteria laughs.

Adulting

Hello again so soon! I am sitting on my patio under the awning, watching big bubba climb on and off his trike, load the back cargo shelf with hotwheels cars and try to push it with his feet. He can't reach the pedals, and doesn't really have the leg strength to move it with his feet yet, but he tries. Little bubba is passed out on a folded blanket in the shade, and I am watching him and deflecting flying insects and tiny flying cars as they try to land on him. It happens. 

 We spent this morning at Childrens. We planned to spend all day, but apparently we didnt look at our calendar very closely- we planned on cyclophosphamide plus six hours of fluids, but all we got was intrathecal methotrexate, a new insuflon for the next three days of cytarabine injections, and they had trouble drawing blood through his port, so forty five minutes of letting an injected enzyme dissolve a small stubborn clot. It took him a little while to wake up this time. I will admit, I was a tiny bit jealous of his propofol. A guilt free, mandatory nap after some of the short nights we've had lately? Don't mind if I do. Of course, considering it has been responsible for a few high profile deaths by misuse, including Micheal Jackson's, I will probably just leave administration to the professionals. But bubba did look so very peaceful...

When he woke up, we escaped Children's and went out for burgers with Uncle (B's brother) Jay, Aunt Wendy, cousins Ariel and Ahna, who were on their way through Denver, going to Summit County for a getaway. It was the first time the littlest cousins, born two weeks apart, had seen each other. Not that either of them cared. One (mine) screamed bloody murder unless he was being held by a standing, bouncing adult (me), then fell asleep just as everyone else was finishing eating, leaving me to eat almost all of my meal alone in the restaurant as everyone else went outside to play, and the other one skipped the drama and just slept most of the time. 

Every day, a new wonder. Today Daniel walked more than ever before, holding onto an adult's hands with both of his hands for balance and support, stumbling and shuffling after Ariel as she ran and played in circles around him. He giggled as he tried to catch her, completely unphased that he never succeeded. He is almost never around kids, and never around kids he knows. It revealed to me (again) how important it is to find him friends his age. He expended more real effort toward self-sufficience in twenty minutes of real children's play than he has in months of humoring the adults in his life. 

It was a little bittersweet, because this is our last day all together possibly until July- B decided to stay at least three more weeks at his job, taking some offered work in North Dakota. The other day, upon hearing the news that our job as we knew it was no longer existant, our knee jerk reaction was that we would not, could not split our little family up like that, but in several days of job searching, we decided we need time. Time to find something that is going to work long-term for us, not just jump into another fly-by-the-seat-of-our-pants oilfield job or trucking job with inconsistent income and a schedule we know is going to wreck us, but taking it anyway because we are afraid we can't do better. And in order to get the time we need, we need money to live on as we search. And in order to make that money, we need time. Oh, dear. Funny how these things work themselves around in circles like that. But the good news is, North Dakota pays a little better than here. As long as he actually gets the loads he thinks he will, and doesn't end up sitting and waiting indefinitely in the massive machine that is the oilfield, it should take marginally less time to make marginally more money than is possible here.

Neither of us have worked a "normal" job since 2002. Since we started working for the lodging company in Summit County, we have not had regularly scheduled days off and have been attached to phones, being available at a moment's notice. In a way, this has treated us well. I believe my longest stretch of working without a day off was 41 days, I have no idea what Bobby's record is. But then, at the end of it, mud season always hit, work let up and we had weeks at a time to go to the desert and bike, and then an extra few hours a day in the summer season to spend exploring the mountains. Then we decided to go back to Kansas so I wouldn't have to work and we could have a baby. B ran his own business, and that also gave him very few days off in the busy times, but weeks at a time in the slow times. We have lived feast to famine, to feast, to famine for twelve of our thirteen years together. We've learned to live like we are broke when we are making bank, then allow ourselves one luxury of a celebratory vacation or purchase at the end of a particularly busy time, and then to live like we are broke again when we have no income and are digging into our savings from the busy time, because we just never know what's ahead.

Except now we are thinking it might be time to try living like "real" people. Maybe it's time to try this 9-5, Monday-Friday, paid sick days and vacation days thing we keep hearing about. Sure, our souls may wither a bit, but this thing we've been doing, living from phone call to phone call, never knowing if the phone will ring in the middle of dinner, middle of the night, middle of nowhere the one time we try to get out of town... Well. That isn't soul-sucking at all. At least with a real job, we would know that every Monday morning was exactly five days away from two guaranteed days off, and every Friday was only two days away from more income. 

Maybe I'll spend the next few weeks somewhere besides here. I have no plan. What I do have is a leash that is Children's Hospital, and a vehicle with a big enough back end that me, an infant and a toddler can sleep in it. Which is really the only place I feel comfortable sleeping with a nearly neutropenic toddler, I can't really ask anyone to sterilize their entire home just so I can couch surf. I may just driveway surf so I can see some friends this next week, maybe picnic in the mountains. B thinks I am crazy. Perhaps I am. I do feel a little stressed out at the thought of needing to be the adult-in-charge for the next three weeks. 

^ My friend sent this to me the other day. Ehh-zzactly. 

So I did the only logical thing- contacted an adultier adult. I believe my babys' godmama Mary may come join us up here for a bit. My parents and possibly Aunt Marci, as well. Might be an excellent time for girltime as well as baby time for them. All my girls possess those (quote-unquote) real jobs, but they all seem to think that playing the cancerbaby card will get their employer's sympathy. Even real bosses sometimes have heartstrings. 

My beautiful boys

Going through my phone, I found a few gems from early treatment, before Daniel puffed up. Looking at them now, I can hardly get enough of tiny Daniel, who looks so different than puffy Daniel. Although I know he will go back down to this size eventually, I am still sad, because through this all, he is still changing and growing. This little boy is gone now. By the time he gets his blonde curls back (if his hair comes back the same) his face will be older. 

Once the obsessive eating started, he disappeared a little more every day. 

And then the steroids ended, and the mood improved, and the fluid retention went down...

Of course, Daniel isn't the only one changing on a daily basis...

Yes, that was a shameless display of my beautiful children. Not sorry! This is my life now. 

Curve baws.

Hello from the batter's box. Given that we've stepped up to the plate, accepted this challenge, you'd think curveballs wouldn't be entirely unexpected, right? 

Monday, B waited all day for a call to come in to work. Not so unusual when it didn't happen, perhaps the well was just taking longer than expected to get up and running. He went to bed Monday night with his phone by the bed and his coffee all ready to go for when the inevitable call came in. Woke up the next morning, never having gotten the call. He finally called into dispatch, they told him to call his local supervisor. Weird. So he did. And learned that the job had been given to another company, and there may not be local work again indefinitely. In fact, some of his coworkers had already taken over the road assignments, hauling from Wyoming to Louisiana. He could do the same if he wanted a paycheck. He said he might be open to the idea, in the lack of other options. No calls have come in yet.

Needless to say, we are not in an ideal time in our lives right now for him be gone for days, let alone weeks at a time. I keep telling myself that I have it so easy, having someone who supports me financially so I can devote every moment of my day to an eight week old and a two year old with cancer (who, by some miracle, are napping at the same time today. It does sometimes happen!) And he is at least eventually home, even on those jobs where he is sitting on a wellsite for 60 hours at a time. It's not like he's on an overseas year-long deployment. And he does exist in my life. I'm not doing this all as a completely unsupported single mom with a full time job. But. Still. Less than ideal, having him hundreds or even thousands of miles away missing out on Daniel's second first steps and Alex's first smiles, not to mention how wonderful it is, when I am home all day providing care for two high-needs babies, to have him come home and give me a half hour to sit and stare at the wall or go for a walk. We need him here at least a few nights a week. Preferably every night.

So it seems that we are suddenly officially unemployed. Because there are limits to what we are willing to do right now, and B leaving us to go over the road for weeks is one of them. We moved to the Front Range thinking that jobs would be easier to come by than they are in Summit County or in a small plains town, and they are, but it is going to take some time to find something that will provide the income we need for a family of four, plus the ability to take a day off here or there if something emergent comes up that I can't deal with on my own. Yes, I have family I can call, my oarents are always willing to drop everything and run up here, not to mention aunts Marci and Mary, but B and I are the front line in Daniel's fight. It could be worse, losing one's job is really not the end of the world and other jobs can be found, but you would think we could manage to go a whole month without having to deal with the latest game changer. Not complaining, but we have started remembering when other things took place based on which month's crisis we were dealing with. February, no paycheck. March, work picked a bit, but Daniel broke his leg. April, Alex's birth and Daniel's diagnosis. May, steroids. June, job loss. This show is only lacking popcorn and a Morgan Freeman voice-over. 

But in other, better news, Daniel is finally showing willingness to try to put weight on his feet again. He really can't support more than about 75% of his body's weight on his legs for more than a few seconds, but he can stand for 30 seconds or more if he is grabbing onto the edge of a table and pulling up with his arms. And he can walk, sort of, with us supporting him and helping take a little weight off of his legs. I know this isn't quite so meaningful to anyone except his family who saw him, just three weeks ago, be unable to even sit up on his own, let alone crawl, and it is especially a big deal to his parents, who have been carrying his 27-34 lbs everywhere he has gone for over three months now. 

Are those M&Ms, motivating him to stand for long enough to take his hand off the table to grab them? Yes. Yes they are. 

At the moment, we are having a bit of a honeymoon with our little boys. The little one has started grinning big, un-self-conscious, uncoordinated toothless grins at us, and occasionally summoning up delighted coos and squeals. His favorite thing is (of course) being held, or at least being in his carrier or wrap snuggled against my chest, staring up at my face big-eyed and open-mouthed. His second favorite thing is nudity. The big one is laughing and talking, if in his own language, engaged and interested in his toys, in the "baws" (balls? Bugs? Roly-polies, pillbugs, armadillidiidae, whatever you call them) crawling around on the back patio, and spends a very good part of his day climbing on and off the little ride-on firetruck that was part of Lisa and Christina's consignment sale haul last week. He accidentaly ran over a baw today, and it was truly sad when the baw stopped working like it should and nothing could fix it and make it uncurl. We didn't exactly want to broach the whole subject of death just yet, but we did make a big deal out of being more careful next time so we didn't "break" any more baws. 

Speaking of baws, they can drink through their anus. And they eat their own poop to restore their copper stores. I learned that today, with all the focus on roly-polies. And now you did too. You're welcome.

Imaginary infection, and losin' the delusion.

Back home! The positive strep culture could not be replicated with a new sample, so after two days of IV vancomycin (the antibiotic they had him on for his imaginary infection), they decided we could go home. Except that the culture's 48 hours weren't up until 9pm night before last, and he had to be back in clinic at 8 am yesterday morning for his big day of chemo, so they said we should just stay overnight instead of make the trip home and back. Which was nice, because then we got to have our big infusion in our room with all of our junk- toys, clothes, snacks, etc, instead of in the tiny infusion room in the clinic. 

^ I forgot to post this gem on my last post, of my two boys having a moment in the ER, so here ya go. 

This was the first hospital stay in which we were not in isolation, felt well enough, and had high enough blood counts that we could get out of our room and even off of our floor. Daniel got to go to the playroom twice, where he discovered a toy train set that blew his little mind. And then overwhelmed him and got flung. (I'm wondering if we are back to just being two years old now, or if the steroids are still in the system?) One play session got cut short by a diaper blowout up his back, and the other by the late hour. The rest of the time, not wanting to push our luck with playroom germs (even though they keep the playrooms very clean and contagious kids theoretically aren't allowed in, he was still crawling around on the floor, which was walked on by shoes that had been all over the hospital), we took him outside, pushing the two brothers in the stroller, or taking meals from the cafeteria outside to eat. Snnce he was feeling fairly well, he was drinking enough fluids they were willing to unhook him for these occasions, making life much easier, away from the IV pole.

This was also the hospital stay in which Alex was the biggest he's ever been (yes, Captain Obvious...) and the least content. And therefore the loudest. Last time it was Daniel alarming the rest of the floor with his fifteen long hours of screaming. This time he was happy, but kept pointing to Alex, obviously bothered by the awful noise his little brother was making. 

Saturday evening, Bobby got called into work, so it was just two wee boys and me Saturday night and all day Sunday. He got back to the hospital about 6pm Sunday night, in time to take a quick walk with us outside before it got stormy. 

On Monday, we went to the clinic at nine am for propofol, the general anesthetic they give him for his lumbar punctures. For the first time ever, he did not go to sleep crying. He wanted to, but we avoided most of the usual pitfalls and buzzwords that let his know what was coming, and next thing I knew, he was lying on the procedure room table, asleep. It still gets me a little, though. That little helpless boy on the table under the light, surrounded by doctors, nurses and anethesiologists. The last glimpse of him as the door closes behind us, as the team swings into action over him, is always the hardest. He is out of my delusion of control (I say delusion because this disease isn't under my control at all, but as long as he is in my arms, I maintain the delusion that it is). I had a quick bite of cafeteria oatmeal while Bobby waited for him in the recovery room, and when I came back, he was already sleeping off his propofol. The parents next to us came into the room to wait for their son's procedure to be done, and had their cry in each other's arms. We had to assume they were a recent diagnosis because they reminded us of us- allowed themselves a quick cry, mopped themselves up, and then sat down to wait and scroll through photos on their phone- presumably of their healthy kid before this all happened to them. Or at least, that's what we did. However, their kid was several years older than Daniel. I had seen them holding him in the procedure room, a kid aware of what was happening. It made me thankful that Daniel is still just young enough that he has no frame of reference to classify what is happening to him. And then, in a complete disregard for the feelings of others, Alex smiled his first real smile. Which I caught on camera. We immediately began clowning around, trying to get him to do it again for a better picture while Daniel lay there, still groggy. Which felt just plain insensitive, but also revealed in sharp contrast the difference between where we were six weeks ago and where we are now. 

A lot of things make me thankful. Only in a children's hospital does one struggle with guilt and feeling unworthy about one's child not being sicker. The things other moms feel around me, when they are complaining of some minor issue of day-to-day parenting of a healthy child and then stop, wondering awkwardly if I may be judging them and thinking they should just be glad their kid doesn't have cancer, I feel visiting with the many moms there who's kids are sicker than mine, or even kids who are terminal. So my child doesn't walk, at 28 months, and is feeling the effects of the never ending beating that is chemotherapy. He isn't paralyzed. He isn't horribly disfigured. And most importantly, he isn't dying. When one walks out of a children's hospital, one leaves behind an extremely inconvenient world, one where "everything happens for a reason" is challenged on an hourly basis, and where one simply cannot internalize how many children are suffering under one roof for no good reason. 

Our day yesterday was all about the chemo. As he was waking up from his intrathecal Methotrexate, they realized they had forgotten to also insert his insuflon, a small catheter into his leg for us to inject his next several days of subcutaneous Cytarabine without having to poke him. So quickly, as he was waking up, they jabbed it into his thigh, which woke him up a bit faster. He was somewhat obsessed with keeping it covered up the rest of the day. Perhaps he was worried about catching it on something. 

Then it was back to our room, where he was on fluids for an hour until they realized he needed to be on a different kind of fluid, one with dextrose. So they started that, which took two hours, then came in and pushed cyclophosphamide over thirty minutes, then followed that with four hours of more fluids. A side effect of cyclophosphamide is bladder "irritation", which is to say, damage to the lining, bleeding, and an increased risk of bladder cancer later. This is managed by accompanying the chemo with fluids until it has mostly cleared the body. 

We were discharged right at shift change, so we had to wait for an hour and a half until someone had time to come in and give us going-home medication instructions. The usual ratio of one nurse to two patients on the hem/onc (hematology/oncology) floor was up to three or four to one this week, so the care wasn't nearly as prompt as usual. Beeping IV pumps occasionally beeped for a half hour before anyone got in to shut them off. Not that we minded so much, aside from the annoying noise- we were low maintenance enough this time that obviously other people needed our nurses more than we did. 

 ^ All dressed up and nowhere to go, waiting to be discharged. The school bus was a present from honorary Aunties Christina and Lisa, who stopped by during the day to "crash" toy cars and coax giggles. We also got a visit from Wendell, who stopped in on his way through Denver on his way back to Florida.

We finally got home and gave Daniel his evening 6-Mercaptopurine, the oral chemo he will be on for the next two weeks, then again for two weeks next month, and for two and a half years once he hits maintenance phase. And then we all went to bed and didnt get up, aside from mama dragging us to the bathroom for diaper changes, until 9:30 this morning. 

I am already frusterated with our 6MP. For one thing, the drug information sheet they gave us said to take it at least thirty minutes before meals. The doctor we talked to about it last Monday said one hour before meals. And our nurse yesterday said two hours. Everyone agrees we need to wait at least two hours after food, and I'm willing to wait however long I need to before meals, but which is it? Asking a doctor doesnt seem to get us anywhere, since they all have a slightly different answer. They say most people take it before bedtime, but some take it before breakfast, you just have to decide which works for you. I decided we would take it when we woke up, because he usually isnt interested in eating first thing in the morning anyway, and this way, I could still nurse him to sleep. One doctor and the nurses said that was fine. Then when the doctor who duscharged us was giving me these same instructions, I said we planned on giving it in the morning, and he told me I couldn't, it wouldnt be as effective. First time in a week of discussing this drug that I had heard that. Also, it can't be given with milk or citrus juice. 

On the way home, I finally turned to google, and found one small study, the only one I could find quoted, and it is quoted often, suggesting the rate of relapse in those who take it in the morning is higher than that of those who take it in the evening. So we finally agreed that we would try to feed him by six pm every evening, then give him the drug at 8, then wait as little as an hour but as long as possible to put him to bed, breastfeeding as early as 9pm if needed, but preferably 10 pm.

This morning, I held his leg still while B injected his Cytarabine into his insuflon, and we have now officially begun our next two months, the phase called Consolidation, or Intensification:

-Intrathecal methotrexate every Friday, with Propofol

-IV infusion of cyclophosphamide, along with six hours of fluids, every Friday.

-blood draw every Thursday, to determine if his counts are high enough for chemo on Friday.

-Cytarabine injected into his insuflon on Friday, Saturday, Sunday, and Monday for two weeks, then discontinued for two weeks, then repeated on the same schedule for the next two weeks, then discontinued fof the last two weeks. 

-on day 15, following the first two weeks, clinic admistration of Vincristine and peg-aspariginase, which, due to the risk of a reaction to the peg, observation for the day.

-6 Mercaptopurine every night at 8:00 on an empty stomach for two weeks, one whole tab on Mondays, Tuesdays, and Wednesdays, one-half tab on Thursdays, Fridays, Saturdays and Sundays, crushed into some sort of carrier syrup. Then discontinued for the next two weeks, then the same schedule for the two weeks after that, then discontinued for the last two weeks.   

This phase terrifies me a little. You know how I said earlier that I was deluded about being in control? Well, right now, we are in control. If we forget to give him his meds, store them incorrectly, over- or under-dose him, there is no one standing behind us catching our mistakes. They just sent us home with syringes full of chemotherapy drugs, bottles full of pills, a handfull of blue chemo gloves and a hazardous spill kit in case we drop some on the floor, and instructions not to store it incorrectly, overdose, underdose, or drop any on the floor. This does not exactly make me feel confident.

This round of chemo is predicted to be the one that finally does our hair in, as well as our appetite. We had a massive all-over shedding after we started Vincristine, but that was just the longer curls. It spared the fine, downy fuzz underneath. But honestly, I don't care anymore. When we started, I thought hair loss would be the thing that hit me the hardest, because it would be the greatest physical change and a daily reminder that he is actually very sick, in spite of how well he may seem from day to day. But that was before I knew about the special hell that is dexamethasone (steroids). Hair loss actually seems like child's play now, after having seen him puff up like a microwaved marshmallow, literally soak the entire bed in profuse night sweats, seeing him lose control of his emotions, seeing him sitting in spreading puddles of diarrhea, writhing from tummy cramps, or trying to encourage him to crawl when his arms and wrists were too painful and weak to even hold the weight of his body. Hair loss? Pshaw. If anything, we can stop feeling like we have to explain to strangers why a 28 month old child isn't walking and playing like a normal kid. Because right now, he crawls like a ten month old, has the vocabulary of a one and a half year old, and looks like a small, round-cheeked four year old. People can't categorize him and this visibly disturbs them. We get a lot of delicately phrased questions as they try to determine what his deal is. And we hate blurting his diagnosis to everyone we meet, it sounds like we are expecting their sympathy or are attention seeking, but it is also awkward when they so obviously see that something is not normal and they can't quite identify what. And wonder if his parents are even aware that he might have a problem. It's a dilemma for us. We play it both ways, blurting or just letting them wonder, on a daily basis. It is times like these when I get an inkling with the most clarity of what it must be like to have an actually disabled child, and I realize that I am a complete wuss. Disabilities create a special breed of tough that so many of us can't even begin to understand.

The Trainman, culture contamination, and the penthouse suite

Hello from our room in the clouds, the luxury suite that is a seventh floor room at Children's. At an average (based on our insurance statements so far) of $7,000/night, you'd think we'd be spending our morning sitting on a wide balcony overlooking some sparkling bay somewhere, wrapped in fluffy robes, sipping some sort of delightful cocktail (yes, for breakfast, no judging on vacation), trying to decide whether to go on some tropical adventure for the day, or just stay on the resort, luxuriate, order more cocktails, do something relaxing that involved cucumber slices, and eventually order room service, maybe three aesthetically arranged green beans for lunch with a flaming dessert...

...aaand welcome back. Since this particular $7,000/night vacation is being charged to our insurance, what we actually get is to sleep approximately an hour between interruptions of either rounds or beeping IV pump, one adult on a spectacularly uncomfortable pull-out couch and one on a comfortably squishy, but too narrow for it's three occupants, hospital bed. What you also get is incessant cartoons, which leads to over analyzation of the subliminal messages contained therein and a bit of feminist outrage (really, Thomas and friends? Your female friends tend to be either "bossy" or a bit fan-girlish! And enough already with the glittery, pinched-waist, big-haired princesses, Disney!) no great place to lay the baby down, and diarrhea. Ok, granted. That part might also come with the tropical island suite. 

We are not even sure we need to be here, and neither are the doctors, but we are just here waiting while several blood cultures sit in the lab, maybe or maybe not growing things. Monday, we drove down for the first chemo treatment of this next phase, a lumbar puncture with intrathecal Methotrexate, and what would have been an all-day infusion of Cyclophosphamide. Well, a two hour(?) infusion of cyclophosphamide flanked on both ends by fluids, two hours of fluids before and four hours after, to avoid bladder irritation as it is clearing the body. I had been monitoring his slightly elevated temp all night, and while it was fluctuating between 99.5 and 100.3, it never stayed above 100 long enough to make a trip to the ER necessary, and it never climbed above 101. So we decided to just go in to clinic, instead of calling, and telling them about his temp when we got here. It was 100.9 in the clinic, so they drew blood cultures, but decided to go ahead and schedule him for propofol (the general anesthesia they use) and his lumbar puncture anyway. Except that, for some reason, the hospital's entire computer system had gone down the night before. The nurse didn't even know which attending would be seeing us that morning, because she couldn't look it up. She could not print out information sheets on the drugs he would be receiving. And when the doctor came in, they had a conversation about propofol and decided it was too risky to do it without the computers. Even the phones were down, so if something went wrong, there would be no way to call the personel they needed, and there was no room in the procedure room for all of the people that might potentially be needed. So, with no IV infusion due to his fever, and no propofol due to the hospital being competely crippled by no computers, we waited until the results of his blood work came back (ANC was all the way back up to 1,800, after having been down to 450 last Tuesday!) and then drove back home, feeling actually a little happy that we got two bonus days before chemo knocked him on his butt again. 

Tuesday (yesterday), we had a scheduled assessment with various social workers and therapists to analyze his development and determine if he would be eligible for some in-home therapy. He played really hard for an hour with the super fun adult who directed his play for skills assessment team, had a ton of fun, giggled, and demonstrated the fine motor skills, deductive reasoning and problem solving of an almost-three year old, the gross motor skills of a ten month old, and 25-33% delay in speech. Speech therapy was an option, but we decided to see if his recent vocabulary explosion continues, and to just do the physical therapy we are eligible for, 45 minutes per week in our home. Our goal is to have him walking in six months. I'm not asking for much, I don't think he needs to be able to run, climb, play in the park, but if he could just manage 10-12 steps across the floor, I would be ecstatic. That, we can work with. That, we can build on every day until he is a healthy, active child again. 

It was our wedding aniversary, not that we had any plans to do anything in particular except acknowlege the fact that we have lived with/loved/put up with each other for 13 years now. But B did have the day off, so he went with us to the assessment, then on the way back, we discovered that the train in North Lake Park was operational, so we stopped and paid $0.75 for mechanically-obsessed Daniel to ride it. About passed out from the unaccustomed heat, too. 85 degrees with no breeze to speak of. How are we going to survive actual summertime? But it was a mini vacation, lush grass, bright sunshine, followed by berry slushes. We wished Daniel was healthy enough to expose to dirty, goose-pooped sand and lake water at the swim beach, but decided against it. But the train was still fun, although it was hard to catch his fleeting smiles on camera. 

We came home and gave the boys their lunch, which they both fell asleep in the middle of, Alex in my arms, lolling drunkenly with milk dribbling down his chin, and Daniel rocking precariously as he tried not to fall out of his booster seat. I put Alex in his swing and B took Daniel to bed so they could both nap, and I sat in the living room enjoying the quiet, reluctant to sleep because I didnt want to let Alex swing unattended, reluctant to move him lest he wake. I knew I should probably be cleaning, but cleaning is too noisy for a houseful of slumbering monsters. Instead, I sat and pumped because neither boy had nursed enough to keep things from being painfully engorged. 16 ounces. I kid you not. How much are these boys of mine eating in a day, anyway?! If I can just sit down and pump 16 ounces because they missed a meal, perhaps this is why I feel like I should never, ever not be eating! And why I was on the verge of collapse after nine hours without a meal by the time I finally got to eat dinner at 1 am this morning. Post-baby weight loss is still happening at a reasonably slow pace, so the math would indicate that I am maintaining a reasonable (and by reasonable, I mean ridiculous) caloric intake.

Two hours later, my phone rang. It was Dr. Daniel, the fellow in charge of Daniel's care, telling us to hurry into Children's, one of his two cultures was positive for strep. B was awake by then, so he got up, we raced around quick-cleaning just in case someone might need to go in our house while we were gone (because you just never know if you'll be back the next day or the next week with these things), packing snacks, toys and clothes, nearly forgetting Alex, still swinging peacefully in his corner, and finally hit the road for Denver. We knew it sounded a little far-fetched that we would come in through the ER and not have to wait in the highly contagious waiting room, and it was- we still had to stand in the line for admissions behind a vomiting preteen, then wait in the waiting room, where we refused to sit on the germ-ridden furniture, standing there holding Alex in his carseat, plus a heavy backpack full of toys, books and snacks, plus pushing Daniel in his stroller. Then we had to go into the initial triage room, just after another family had vacated it, so we still refused to set anything down, in spite of the nurse closing the door against any potential airborne viruses and apologizing, saying we shouldn't have had to spend any time in the waiting room at all. We are smarter now, and next time we will not wait in line to tell admissions that we have an oncology patient, we will tell security at the door and hope they know the protocal for bypassing the toxic clouds of flu droplets flying around the ER. 

We got into a room upstairs at midnight, with Alex, who had been screaming all evening in the ER, finally asleep. Daniel had to be NPO after 1am for his lumbar puncture we already had scheduled and had planned to be here for in the morning, and because I had been feeling shaky for hours already, B ran down to the cafeteria and ordered big piles of food for us all- burgers, fries, a quesadilla with guacamole. We had a 1am feast, and no sooner did we finish but Daniel began to sway a bit. I eased him back on his pillow, nursed him for about two minutes, and he was sound asleep. I took a shower, then got Alex out of his carseat put him in the bed, and laid down between him and Daniel. 

At some point during the night, I awoke to activity against my lower back, the aid fumbling about in the dim light, presumably trying to get a blood pressure cuff on Daniel's leg, smashed against my back, without waking him. I was still half asleep, but felt I should offer to help if I could. I sleepily asked, "How's it going back there?" He replied, "Sorry! You should really know my first name before we get to this point!" I may have snorted. 

This morning, they decided to postpone Daniel's lumbar puncture until Friday, in case his cultures come back positive again, so that they don't crash his immunity right when he is trying to fight off an infection.

And this is where we sit. Christina Alpert stopped by bearing lunch from Panera Bread, plus a big bag of children's consignment sale finds. Nursing pads, nursing tops, pee pads of various sizes and shapes, three cloth diapers, and little fruit smoothie pouches (not from consignment). I'm gonna owe that one a lot of favors someday! 

In the meantime, there is nothing much to do today except care for babies and nap when they do. Which they are at the moment. So I don't mind if I do! If only that stinkin' IV pump would stat quiet...

Speaking of. I finally got on the ball with his "beads of courage" today. This is a program the hospital offers in which each medical procedure earns him a color-coded bead, which are threaded onto a string to provide a hard-earned visual to help him, as well as his caregivers, realize just how much he has been through. So far, five and a half weeks in, here is our tally: 

Bone marrow aspirate or biopsy: 2

Days of hospital-administered chemotherapy: 12

Line placement: 1

Clinic days: 5

ER visit or ambulance ride: 4

Hair loss: 1

Isolation: 6

Lumbar puncture: 3

Pain meds: 18

Pokes (IV, port access): 8

Scans (X-ray, CT, Echo): 11

Blood or platelet transfusions: 12

Nights admitted: 14

Surgery: 2

Care team visit: (ie, physical therapy): 2