Hello from home! They let us go home last night. Daniel's numbers were looking good enough they decided they could trust them until Friday, his next chemo treatment, so with many a caveat, warning, worst case scenario, and instruction, and a big bag full of drugs, we packed up our room, much more stuff than we had arrived with, and a week's worth of laundry compounded by several vomiting episodes, jammed it, three adults and two babies into the vehicle, and hit the road for Loveland.
Thank you, dear people, for all of the thoughts, prayers, calls, texts, Facebook posts, well wishes, gifts of things from hospital-stay creature comforts to snacks to a private in-room two-week-old photography session for little Alex...it all means so much to us. We are humbled by the enormity of the things we are just supposed to accept from others without putting up a fuss. This experience may end up making us have to become more willing to accept help. We hope one day we will be in a place to pay it back, or at least pay it forward.
Day before yesterday, the resident came in for rounds and told us to expect about two more weeks in the hospital as they tracked Daniel's neutrophils (the white blood cells most responsible for immune response, affected by his cancer limiting his body's response to produce them) back up as he responded to chemotherapy, so we nodded and decided perhaps two of the three of us (godmama Aunt Mary is still here for her long-ago scheduled "baby Alex visit", which turned into a "help in the hospital visit" a few days before her arrival) should go home to get the car so we could have a vehicle there while B drove back and forth to work. Then, in a few hours, the resident poked his head back in and said scratch that, they decided they could track him during clinic visits instead, since his red cells and platelets were looking good from all of the transfusions. However, before going home, they still needed to give him one more blood transfusion- his red cells were 7.2, they usually didn't transfuse until under 7, but since we would be unmonitored for two days at home, it seemed wise to get them up again.
Night before last, Aunt Mary drew Daniel cuddle duty, since daddy was working, and I got the couch with Alex. Around 2:30, Daniel woke up wanting to nurse, so we traded spots. Nursing apparently did not cure as many ills as he had assumed it would, because before long he started whimpering and insisting I hold and squeeze his hands and wrists. I called for some pain meds for him, and they did the trick. Before long he was passed out again. When the sun came up, remembering the food fight of the last several days, I also immediately called for Zofran for nausea, even though he had yet to act too nauseated. Look at me, the natural, anti drug mama. Anticipating seeing my child miserable makes me fold like origami. And I'm ok with it, too. At this point, so many drugs are coursing through him, I figure what's a few more to make him feel better. And it worked. He kept his meds down, and two hours later, even braved a tiny piece of egg, which worked as the magical "gateway food"- after he had bravely swallowed it and it stayed down, he braved eating the rest of his eggs and half of his apple.
The first food in 48 hours (and the fact that it had been three days since his last chemo) perked him up a bit, and he had a fairly good morning. But at noon, instead of lunch, he got a bag of Pegaspargase (chemo) hooked up to his IV, and he went down pretty fast, lying curled up on his bed, sweating so much his pillow was soaked, his eyelids droopy, his color pale. He was not interested in so much as a sip of water after that. Two hours later, after his bag of chemo was done, he got a bag of blood, which was done two hours later, then we had to wait for labs to come back, and finally, meetings with the pharmacists, nurses, and doctors with instructions for going-home contingencies and paperwork, they pulled the covering off of his port, filled it with heparin, removed the tube and needle, and we were officially a "real boy", unhooked from the IV pole, for the first time in six days. Not that he felt up to celebrating. He hung limp in his dad's arms, face pressed into his chest, as we walked out of the highly-immuno-compromised children's cancer unit and down to the lobby with our massive wagon load of stuff. Aunt Mary put him in his carseat, trying not to smash his port with the straps, and away we went, both Daniel and Alex crying in the back seat. Both were asleep by the time we got home, and we walked into a freezing house (of course our furnace had quit working again- the landlord's father in law was here fixing it while we were in the emergency room on the 22nd, and we hadn't been home since, so it ran and made a nice warm house while we weren't here, and had long conked out again by the time we got back home), dug in the freezer for one of the meals sent up here with my parents by Marci, Kayla and Kari (back when we thought the only source of stress around here was a new baby, before it turned out that the new baby was the source of the least stress!) and sat and stared at each other, wondering what we should do now. And then B's phone rang, it was work calling him to come in, in spite of him having told the day dispatcher he would not be coming in. The night dispatcher didn't much care for his excuses, saying that they were short on drivers and strongly implying it would be best for him to spend the night driving, so he grabbed a bite to eat, took a shower, and headed out into the dark for another long night, in spite of having slept only three hours of the last 36. As of now, I have not gotten his text or call that he is parking his truck and going to sleep, so I am assuming he either forgot to text and is sleeping, so I should not bother him and let him sleep, he is still working, so I should not bother him because he is spectacularly growly by virtue of being spectacularly exhausted, or I suppose there is always the possibility that he fell asleep and left the roadway at some point last night, but kinda assuming if that was the case, I would have been notified by now. I did give him a stern warning on his way out the door to not be doing such things right now. Girlfriend can handle a toddler with cancer and a newborn, but a husband seriously injuring or killing himself falling asleep at the wheel seems a bit daunting at this precise time in my life. Just saying.
And now I sit here in the clothes I put on yesterday morning, with teeth unbrushed since yesterday, because after B went to work lat night I went to lie down with two little boys to cuddle them to sleep, and the cuddles worked a little too well- I cant even recall if they fell asleep or not, I just awoke at 2 am with a very hungry two week old crying to be fed, and soaked from diaper to armpit. At some point Daniel also awoke and nursed himself back to sleep, but mostly last night was spent comatose by all residents of this household except the one out driving.
And now the sun is shining, I'm sitting here curled in my recliner with a space heater close by, nursing Alex, Daniel still sleeping, laundry tumbling in my dryer thanks to Mary being a bit more motivated than I am this morning, and honestly, the last week is starting to seem like a really weird bad dream. Because from where I'm sitting right now, it's pretty easy to simply remove that chunk of time and pick right up where we left off, back when all of Daniel's problems were simply the terrible two's. But a look at my kitchen table, littered with bottles of medicine, and at the space beside the garage door, piled high with suitcases, bags, and information booklets reminds me that I probably can't afford to do that. For at least three more years. But here's to sanity, the ability to drink at least small amounts of wine, sleeping in one's own bed, and friends and family who make it all a whole lot better.
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