...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
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