Daniel's village

Lately, it seems everywhere I go, everyone other parent I meet has a kid with cancer. Oh, wait. Maybe that's because the only place we ever go is a pediatric cancer center. And the park and the zoo. But the only place we interact with other kids is the cancer center, because they are healthier than your run of the mill snotty-nosed park and zoo brats. Well. You know. 

I was unaware of how common leukemia is until we were diagnosed. Now it is everywhere. Or so it seems. You know how sometimes in the days after you learn a new word, you hear it everywhere? So it is with kids with cancer. Once it's on your radar, everyone you know knows someone who's journey parallels your own. 

 This from the Leukemia Research Foundation: 

(Copied and pasted from leukemia-research.org)

Every four minutes, someone is diagnosed with blood cancer – more than 176,000 new cases are expected this year in the United States.

More than 310,000 Americans are living with leukemia

An estimated 55,000 deaths will result from blood cancer this year.

Leukemia causes more deaths than any other cancer among children and young adults under the age of 20; however, leukemia is diagnosed 10 times more often in adults than children.

Every day 143 Americans are diagnosed with leukemia and 66 lose the fight.

Leukemia strikes males and females of all ages and all races. It does not discriminate.

I know I should be looking forward instead of back, but I have been spending time again looking at pictures of Bubba-who-was. I feel like I am grieving a loss. Ever since April, the changes have been coming so fast, and each one signals a new phase of treatment, so they all signify the big suck that is cancer. I might be finally wrapping my mind around the fact that this is not a temporary visit to cancer land. We live here now. So I feel sad looking back at the kid we used to have, back when we were carefree and knew that statistically, we were probably safe. Back when his future was all happy speculation, with the obligatory fine print every parent is aware of but chooses not to dwell on- this child is a gift. Enjoy him. Although he will always be a part of you, he may not always be with you. Bad things happen. Usually to someone else, but not always. 

I feel bad trying to articulate these feelings of loss, because the parents who's child was ripped away from them, either in an instant or over the course of a lost battle with disease, would give anything to have a changed version of their child with them. As would I. But I guess I still get to grieve. I'm not really grieving having lost Bubba-who-was, because Bubba-who-is is busy, entertaining and happy. What I grieve is the loss of who we all were back then. And the symbol of who we were is the pictures of one small, sweet, heartbreakingly normal toddler. One who was so eager to please he had himself mostly potty trained with no effort on my part, who barely cried, who ate what we fed him and who's favorite thing was snuggling with his "person of the hour". 

He went away in spirit first, his steroids changing everything about his loyal, sweet personality. He is coming back to us by now. Then he changed drastically in appearance. I know he will look like a normal kid again, but he won't ever look like a normal two year old again. He will be three in January, and will have spent almost his entire second year being defined by a disease, as hard as we try to make everything normal. This disease will be less defining in his third and fourth year, but he will always be the kid who went through more than he should have had to. He doesn't have the luxury ofbeig normal. Instead of begging for kisses and band-aids to cover and fix minor scrapes, he gets them to cover the needle sticks from lumbar punctures and port accesses. Instead of barfing at his friend's house from too much birthday cake, he is barfing from chemo. Instead of fevers from picking up every virus at the playdate, he gets admitted for every fever and playdates are a nervewracking novelty. When I watch him sleep, when all is quiet and my thoughts are loud, these are the things I think about. 

I don't really want to have a big pity party, because that seems petty considering I'm not standing helplessly by watching him starve to death, unable to afford treatments. He doesn't have HIV and no meds. We aren't living on rice and very occasional bushmeat. He isn't lying on a dirt floor covered in flies while the cancer wins. But...I kind of do. Consider this my RSVP to the pity party. I want to be able to at least have a place at the table reserved if I decide to show up. That is, if I have nothing better to do. 

This week, finally, his personality came back. He sings to himself for the first time in over four months, climbs on my lap (or tries, then holds up his arms for me to lift him), gives me kisses if I am very lucky. 

At the moment, he is snuggled on my lap, repeatedly hitting himself in the jaw as he nurses. His vincristine can cause nerve issues, one of which can manifest as jaw pain, and I assume this is why he is doing this. 

Godmama/aunt Mary accompanied us home from the hospital. We unloaded the vehicle, then, after a little session of sitting and staring, decompressing, and a load or two of laundry (done by not-me), we took the babies to the park. Daniel insisted on bringing his little ride-on firetruck. He voluntarily (!) went down the small slide a few times, cautiously holding himself back with his feet, giggling with delight over his accomplishment before climbing back up to do it again. Upon discovery of the under-seat cargo space in his firetruck being full of sand toys, he dug in the sand, throwing it up over his head and squealing, "uh-ohhhh!" It was pretty sad to leave the park, but it only took a few minutes to fall asleep once in the car and driving home from the park.

The next morning was clinic day, IT methotrexate and IV vincristine. As we were waiting for Daniel to wake up, I struck up a converstion with the mama next to me, also waiting on her sleeping baby. One thing led to another, and I mentioned we were originally from Marienthal, a little town of about fifty people out on the plains of western Kansas. "You're kidding!" She exclaimed. "You know the pink house on the corner? We lived there before we moved to Colorado." 

We had been told about each other by a mutual friend, but did not know each other, even though we worked in the same eight-bed hospital at the same time. I was a night shift CNA while she was materials manager during the days. Their little boy is almost done with their intense first six months of treatment, and almost ready to go into Maintenance. Then we discovered that the third little boy in the room waking up from a lumbar puncture was born on the exact day Daniel was. It was a day for weird coinkidinks like that.

They left his port accessed so we could continue giving his IV Clindamycin at home. Since his timer went off for his noon dose while we were in the recovery room, I had the nurse watch me do it to make sure that I was doing it right. Not that I was worried. It really is quite simple, just scrub the hub for fifteen seconds, then let it dry for fifteen seconds, flush with saline, scrub the hub and let dry, hook up tubing, unclamp and make sure antibiotic is running and the bag is draining, wait 30 minutes while it runs, unhook, scrub the hub and let dry, flush with saline, scrub the hub and let dry, then flush with heparin and lock.

We grabbed a bite in the cafeteria on our way out, then drove to the zoo. Aunt Mary pushed Daniel in the stroller, picking him up and holding him when he didn't quite have the elevation needed to see into the animal enclosures. He started out happy, but then got sad when. I wouldnt allow him to climb all over the bleachers, sticky and polished with many greasy, sweaty hands and behinds. So we loaded up the babies and headed for home, only getting a little turned around and lost on the way. 

Then home, where Mary and babies did a whole lot of bonding, playing, and cuddling. I love that my boys have such wonderful mamas in their lives. I feel like one person (moi) just cannot be enough places at once to raise truly wonderful men who have their cuddle accounts full by the time they are thrown into a world of harsh gender expectations. This takes a whole village of women. Like my boy's aunts Mary and Marci, and grandma Sandi, all of whom drop everything and come up here on their own dime, missing work, just to be the arms that hold them and show them what true love feels like while they are tiny. It takes a village of men, as well, and the men in their lives are evolved ones who also fill them with love and reinforcement. What lucky little boys we have. 

Aunt Mary had the airport shuttle come pick her up from our house about 3:45 this afternoon. Daniel tried to follow her down the driveway because he didn't want to see her go, only to realize that the concrete was far too hot to walk on, so he plopped down on his diaper and whimpered. I carried him back to the shade and we sat with quivering lip, but managed not to have actual tears. Then back inside, where we played for about 45 minutes before a little maroon car pulled up to the front of our house and out stepped...dun da-da dunnnn....Daddy! 

As it turned out, two weeks and a day into his planned three weeks away, a well in Wyoming called for some loads and all of the northern Colorado drivers were called back to help deliver. He drove like crazy for eleven hours from North Dakota to the well in Cheyenne, Wyoming to get here with a legal logbook, still didnt quite manage it, but slightly illegally slid into the truck yard, parked, and came home to spend a little time with his family before he has to go back to work at 3 am. 

I was nervous Daniel would choose the moment he walked in to be contrary and unaffectionate, but he went running (well, staggering) to his daddy for a big hug, then immediately began pulling him around the house, showing him the new toys he had procured since he had seen him last. It was a full hour before I finally got to elbow my own way in for a kiss from Daddy. 

My parents are coming up here tonight yet, showing up late, on their way to Shaw Cancer Center in Edwards for my mom's every-six-month breast cancer checkup Monday morning. They are bringing Andy. The whole family will be together again, including the spastic, shedding, barking head of security. We miss him terribly when he isnt here, but when he is, I don't always have patience for his antics. But without him, we are just not quite complete. This is a problem, since in human years he is over fifty already. He is over the hill, especially in Golden Retriever years. 

I am up watching and waiting, keeping a close eye on Daniel. He took a three and a half hour nap today, and was back in bed by eight o'clock. This is slightly abnormal, even for him. We are feeling less confidant about making it to Wednesday to get bloodwork, he does seem to be a little lethargic, but maybe it is just sleep deprivation from our five days in the hospital. However, his hemoglobin was 8.2, they transfuse at 7, and he does seem a little pale. His temp has been in the 99 range, not quite high enough to take him in, but high enough to need to keep taking it and monitoring. And his breath smells faintly like acetone (like nail polish remover), which can be a sign of diabetic ketoacidosis, a side effect of L-aspariginase. So the internet tells me when I google "breath smells acetone leukemia". He also has frequent, extremely runny, gelatinous poop that smells like almost nothing. That aint right. But that I am atributing to the antibiotics he has been on for a week now. I was feeling so smug about his diverse microbiota before this. I had done everything right. Probiotics while pregnant and breastfeeding, vaginal birth, extended breastfeeding, only one dose of antibiotic his entire life, I was giving his microbiome it's very best shot at being well populated and diverse. And now he is drowning in antibiotics, spewing from both ends, beneficial bacteria killed off just like that. But I would rather have him alive than have his tummy bacteria alive and him have a raging infection, so every six hours I dump another dose of antibiotic into his bloodstream and tell myself that he will have a lifetime to deal with any lingering effects. The key word here being life. And then I say things to cancer. Ugly, angry things. Because it took away our best options and left us to choose the lesser of the crappy ones.

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.