We didn't think this was going to be the last one. We were told by our nurse (with knowlege of and access to our treatment plan) that we were going to have a two-month Interim Maintenance, a two month Delayed Intensification, another two month Interim Maintenance, then three years of Maintenance. So six months from the start of this phase until Maintenance. Except the last time we were here, we started asking the rounding doctor (since we have not seen our doctors, attending or fellow, since Daniel's PEG reaction) about our timeline, since we have been planning a trip to our friend's wedding in Tahoe the end of October since long before Daniel was diagnosed and needed to finally be able to solidly commit to going. Since she was the rounding inpatient doctor on duty that day, she was not particularly familiar with Daniel's treatment plan, so she asked for time to find out what we needed to know. The next day, she popped in with a roadmap for our first month of Delayed Intensification, said a whole lot of emails had been exchanged between her and our doctors, and the consensus seemed to be that he would head straight into Maintenance after Delayed Intensification. Later, Daniel's doctor, at least his fellow, stopped in because he had a minute and had heard we were asking about him, to answer any questions we might still have. I asked if that had changed or if it had always been the plan, and he said the second Interim Maintenance was for very high risk patients, not merely high risk, as Daniel is.
So. Two more months of intense...intensification. Nothing about that word, in relation to chemo, sounds fun. But at the same time, I am literally terrified about hitting maintenance. I know, it should be a celebration, right? And we plan to treat it as one. But maintenance is scary. It feels like we're being thrown back into the ocean. The hospital has come to be comforting. Constantly knowing where his counts are by way of frequent blood draws is how we maintain our illusion of control. When people ask how he's doing, there's something to tell them. ANC, hemoglobin, platelets. These things dictate our response to life. If he's pale, what is his hemoglobin? Does he need a transfusion, or is he just tired? If he falls and hits his head, what are his platelets? Should we be worried about bleeding? And do we need to stay home, or can we be around other people? What is his immunity like? Check his ANC. And that other specter, relapse, is unlikely during intense treatment. If it were to happen then, it would be picked up on sooner. But it won't. Because no.
This stay has been the easiest one, so far. Daniel has more energy this time than other times. Bobby has not gotten any calls to go to work so he has been here with us, all but the first day. The nausea has been so much better. Daniel is actually eating so far. Not anything from the hospital kitchen, of course. But I brought all his former greatest hits from home- kettle corn, corn chips, ginger snaps, grapes, strawberries, sliced bread, bananas. Getting him to eat is like throwing everything we can think of at the wall, hoping something sticks. Pretty much, we have to give it to him, he will put it close to his mouth, and the mouth will either open when he smells it, or it won't. And that's that. Nothing will change the mouth's mind. So yesterday, the mouth opened for a grape in the morning, about four grapes in the afternoon, a few bites of watermelon, about half of a cutie orange, a square of dark chocolate, and late last night, about a dozen corn chips dipped in refried beans. And considering what he normally eats while getting methotrexate, this is phenomenal.
...and now we are home. I have tried for four days to write this post. Just can't seem to get it done. Mostly because I had a lovely post all written, then had to jump up to deal with something, didn't get it saved, the app closed on it's own, and I lost all but the first two paragraphs. 
Daniel is looking a little bit rough this morning. The effects of two months of high dose chemo are mounting, as far as his physical appearance. His hair is growing in so thick we actually have to wash it. He even woke up with a tiny scruff of bedhead the other morning. But his skin is looking pale, his eyes droopy and sunken, his eyelids bruised. His nose drips all the time. The adhesive from his port dressing left oozing lines of broken skin again, his chest criss-crossed by the brown discoloration of former lines. Methotrexate causes skin darkening at the sites of skin breakage long after the scabs have fallen off and the skin has healed. He still has dark spots on his scalp from the sores his rash turned into two months ago. But by all appearances, his maladies are all in his appearance this time. He is spinning around in circles, singing, then falling over when he gets too dizzy at the moment. Of course, if falls too hard, he also cries for a bit. He's being mercurial. But what he isn't doing is throwing up uncontrollably, unable to even keep his anti-nausea meds down, as he was two weeks ago after his last infusion. He even "helped" me cook him two eggs, then opened the mouth as I cut bite sized pieces one at a time. Because we've become a little OCD about our food presentation. We like our food to stay whole until we eat it, not be pre cut into bitesized pieces. It's just prettier that way. So now we sit and chew our mouthful, swallow it, then yell for mom to come cut another bite. Whatever. Seriously, whatever it takes. The appetite is so touch and go, a disappointing meal presentation is grounds for refusal to eat. So if I have to learn how to cut tomato florets and garnish with pretty little herb sprigs and spirals of citrus peel and aesthetically drizzled oils, well. Just let me get my lemon scorer, I'll be right there.
Since we had no lumbar puncture this time, check in was later than usual, 11 am. Bobby was working, but I took this opportunity to take Daniel to the zoo early in the morning. We got there about 9, and I decided to forego the stroller and simply throw Alex on my back and make the morning all about going where Daniel wanted to go. No racing around putting on mileage and seeing all the animals we could, just a little boy leading his mama around by the finger, exploring. So in two hours we scarcely moved beyond the gate. We looked into every window, investigated every door to every indoor habitat to see if it would open, and then we discovered the feline house, with all of the cats in their inside cages. As an adult, it hurts a little to see big cats pacing and panting, perturbed at being in a small structure. I know the whole feel-good thing, zoos are necessary for conservation funding, and also for creating a personal experience so humans even care about such things as species extinction. But I always struggle with seeing something as wild and predatory as a tiger or a leopard- how can they possibly not be in hell in a zoo habitat? It's one thing if it's the lemurs, or even the monkeys, entertained by the human's interactions, ropes for swinging...but big cats unable to run doesn't feel right. But Daniel was enthralled. The pacing tigers were amazing to him. He ran back and forth with them. And back and forth between the two enclosures, giggling and clapping everytime one of them looked toward him. I had hoped to stay out of indoor spaces, the outdoor air having sanitized the rest of the zoo overnight, but he was having none of it. And he was having none of not touching every. single. surface. I finally got him out of the feline house and on to the seals and polar bears, and that was it. Our time was up. And it was tragic.
At the hospital, I unloaded all of our gear for a multi-day stay into a wagon at the front door, then left it there while I parked, then hauled the whole thing up to the clinic with me, since I would not be able to go down for it after we were admitted without taking two boys down with me, and I couldn't leave the floor when Daniel was actively getting his infusion, in the rare event his line would break and spill chemo in an area that was not a specific oncology area. Three people in a room for three days take a lot of stuff. I try to make it less every time, but by the time I bring the suitcase with countless clothing changes for babies who tend to soil clothing a lot, especially one on a lot of fluids, plus the pack'n'play to keep Alex contained, plus the potty chair, plus a soft blanket for each of us and a spare to replace the one that will inevitably get chemo pee on it, plus a variety of snacks to tempt Daniel with (the more he eats, the more he drinks, the better he poops, the faster the chemo clears), plus toys, books, crayons, and movies. And diapers. So many diapers...it's a lot of stuff.
The only hospital drama this time was right at the beginning of his infusion. His blood ph was 7.5 upon arrival, so no sodium bicarbonate needed to adjust it. After four hours of pre-hydration, they started his Methotrexate about 5 pm. They always start with a bolus, a higher amount given over 30 minutes, then start his 24 hour drip. Halfway through the bolus, the nurse practitioner came by to check on us. Daniel was all enthused about playing with her, but when she picked him up his line just barely caught on the IV pole base, and snap! The line broke. Right at the end of his port access line. The port access is a needle that sticks into the port under his skin on his chest, and it has about a six inch plastic line hanging from it with an end that screws onto the rest of the tubing. 
Something was defective about the way that tip was attached to the line, and with the smallest tug, it came apart. Now, if this had happened further down the line, all that would have had to happen was the line be clamped, and removed so no blood could flow out of his port and no chemo out of the line. But as it was, the clamp slipped off and bounced away when the tip broke off, and the nurse practitioner immediately had her hands full manually clamping off the line from his port, suddenly an open access right into and out of his artery. I jumped up asking how I should clamp off the chemo line as chemo was running out onto the floor, but she barked at me to run for the nurses instead, so I hustled out to the nurse's station and returned with one or two in tow, which were soon joined by several others. Everybody ignored the running IV pump while getting the line from Daniel's port clamped and secured, then clamped off the chemo line, then had to reaccess his port with a new needle. Which is always traumatic for him, especially without deadening cream and so soon after the first time he'd been poked and accessed. Then they restarted his chemo bolus at a higher rate to still keep it within it's 30 minutes, and finally were able to call for a chemo spill clean up. Which was a whole process in itself- special suits, goggles, the works. I was really glad someone was there when it happened. Because my first concern was the chemo spill, not having noticed the location of the break was allowing blood to run out of my kid's body. I really do appreciate our unusual occurences happening when the professionals are in the room. From drug reactions to split lines, it all waits to happen until there are witnesses who know what to do about it.
Not to mention, this all happened as Daniel was running around completely pantsless. So until everything calmed down, he sat with his bare butt on the NP's lap. Which I didn't notice, and neither did she, until she went to pull him further onto onto her lap and accidentally ended up grabbing a handful of...junk. Instead of diaper. So then I grabbed a diaper and put it on him, a bit belatedly.
Daniel had gained weight again this time. Thank you, boobs with your overabundance of milk and overactive letdown that forces him to drink more than he wants to. They may be responsible for Alex's gas and tummy troubles, but they are also responsible for the fact that a toddler on chemotherapy's weight gain is following a healthy curve. Although me eating for three is no small part of my life. I'm not losing the baby weight like I did after Daniel was born, and I can't seem to be able to even try. Because creating a calorie deficit makes me pretty much grind to a stop. When my last meal is all used up, I am instantly shaky and exhausted. I don't think I make that much milk until Daniel's nausea gets so bad he won't even nurse. Then I realize that every six hours or so, he consumes over six ounces. Because that is what I have to pump just to keep things less painful.
I know all sorts of people pass through the hospital. It takes all types. One of the clinic nurses gave me a compliment I was not quite sure hiw to respond to. We were in the clinic halls, playing with toys with Alex on my back, and she laughed and said, "Every time I see you, you'd never know anything is going on with you. You seem so at ease with this all. You always have it together." Clearly, she didn't notice our mismatched socks, my overgrown eyebrows, the fact my baby hadnt had a bath in four days. Which probably were not the details she was referring to anyway. How do I feel? Certainly not traumatized or particularly stressed out. Why would I? It sucks, what Daniel is going through. But nothing else has changed, really. We are just living life in a different location sometimes. Sometimes our life happens in a tall brick building in Aurora, sometimes it happens in a little house in Loveland. But aside from the big facts, the little moments keep happening. Nowhere is this more evident than in the fact that over the course of Daniel's treatment so far, Alex has changed from a sleeping, eating, pooping newborn to a laughing, bubble-blowing, shrieking baby scooting around the floor on his tummy, rocking on his hands and knees, grinning at and flirting with everyone he sees. Alex didn't put his life on hold for cancer, why should the rest of us? Do other families live in an endless state of suspended animation? Not the ones we know personally. Should we be more worried? Maybe I'm just too clueless to know how freaked out I should be.
A few minutes later, a little boy a year or two older than Daniel ran past us, followed more slowly by his mother. A nurse asked them brightly if they were done now. The mother fell apart, crying in her arms. I didn't try to overhear, since the mother was hunched away from me speaking quietly to the nurse, but couldn't help but hear, "They found a blast". Relapse at the end of treatment. Sky falling. Fragile hopes, shattering. Future, so much harder now. While my life in the hallway was all about the fun of being with my boys, hers was crumbling around her. And then I realized, this is why. Fear. Not to say we actually have it together, because we don't, but different people respond to fear different ways. A day spent giving into fear is a day that could be spent basking in the sunshine that is being Daniel's mother, lost forever. Fear has us one hundred percent certain that we will be in the nine that beat it, not the one who doesn't. Fear is what is behind the door we have our backs to. On this side of the door there is nothing to fear. There is just days of cuddles and playing together in a room with an IV pole, family walks around a green park-like campus, movies and books and games together as a family. The best years of our lives. The golden time when our children are small and innocent, and we are their everything, as they will always be ours. And besides, if we are the one instead of the nine some day, we just cannot afford to trade one happy memory in on a sad, terrified, or freaked out one. These memories are treasures that only we can deny ourselves.
I think this must have been going on in my head already on April 22, the day he was diagnosed. The conviction that it was only real if I let it be. The mundane, the details, those are real. But they are also sweet. They are fun. They are time together. As I was trailing twenty minutes behind the ambulance carrying a weak, pale Daniel and a worried Bobby down to Denver, the emptiness of Daniel's carseat behind me felt like a physical hole. A chill against my back. All I wanted was to be back in his presence. I see this in Bobby all the time as well. Daniel's presence heals him. Time away is just time to pass until he can gather him in his arms again and feel his okay-ness. We held ourselves together by sheer force of will fueled by the numbers- this is the best type of cancer to get. We are only dipping our toes in the pool that is Cancerland. We are playing "a day in the life of cancer parents". It's like cancer voyeurism. Not actually us. Not actually our real life. Just an experience we are currently immersed in. Mountain biking in Moab, hiking in Hawaii, driving through the jungle in Mexico, child with cancer in Denver, climbing mountains in Summit County, exploring canyons in Utah. I called this blog "Daniel's Big Adventure " because I didn't want to give into any sort of thinking that this was anything but a temporary stop, an exploration of the way the other 47 kids in the U.S. who are diagnosed with cancer every day live their lives.
It became more real when Simone died. Until that point, all the kids seemed okay. Because they were still breathing. As far as our experience with kids we know personally, they would all survive this and go on to live long, healthy lives, they would all fight hard and by virtue of fighting hard, would win. Any other outcome was just speculation. Now we realize they won't all win. But still. Even with the Russian roulette that is childhood cancer, with Acute Lymphoblastic Leukemia, only one is a live round, hidden among nine blanks. What are the odds, really? Well. One out of ten. Those are the odds.
I don't know how it is in other rooms, but the nurses say some parents won't ever even change a diaper while inpatient. Which I don't understand. We are Daniel's caregivers. We want to be. It's another way to feel in control. The doctors and nurses are there to provide the technical care we are not qualified to give. Every time we get a new nurse, they act shocked to discover we chart our own intake and outputs, weigh each diaper, and draw urine samples every two hours to send down to the lab. I always reply something to the effect of, while it might take four or more years of specialized education to make sure my son gets the right drugs at the right doses and the right times, and to monitor his health, his lungs, his digestive processes, his vitals to know when they need to intervene, I am pretty sure it doesn't take four years to figure out how to operate a gram scale, measure pee in a hat pan, don a pair of blue gloves, draw up a syringe full of pee and put it in a bag. Or to write down specifics of bowel movements and urine output. And for goodness' sake, it certainly does not take four years to figure out how to walk down the hall for a cup of ice water. Or to make Daniel's bed with fresh sheets and bathe him. Just tell me how specific I need to be for your charting and I'll handle it:
Because Daniel felt so much better this time, we were able to escape the hospital a time or two, after his infusion ended. We went for a walk Thursday night, hoping to coax a grin out of Daniel, but as excited as he had acted about leaving the room, once we got outside, he wilted a bit. So we walked for us, dragging him along as he pondered life in the wagon behind us. In order for Bobby to make the most of his time out of the hospital, he extended his walk by using one of the University research/admin buildings for a stair run: 
The next day was a better one, so we escaped for lunch down at the small row of restaurants that serves staff and students in the middle of the campus. It got warm with Alex on my back, so Daniel was pretty proud being so big, able to pull Alex in the wagon behind him. It tried our patience as he wondered aimlessly, running the wagon into planters or into the grass, and finally, out of concern for the sun on his skin, extremely susceptible to sunburn with the methotrexate in his system, and the fact that his IV pump battery was quickly running down, we finally had to carry him back to the hospital. There were tears.
And so ends Interim Maintenance. Well, it actually ends on October 13, when we give him his last mercaptopurine for this phase, and get a week off. If counts pass, we will start delayed intensification October 21. This kicks off with a bang, a lumbar puncture with IT methotrexate, a week on- week off- week back on dexamethasone (the steroids that so kicked his butt during Induction), and two weeks of Erwinia shots, those horrible, stinging, painful shots in his thighs that make him not want to walk. It's the two month long uphill sprint to Maintenance.
In the meantime, we have somehow managed to jump through a lot of hoops and are signing a thirty year lease with a mortgage lender the end of this month. If all continues to not fall through. I feel like "thirty year lease" is a more accurate way of saying it than "buying a house". Because people who have great jobs and incomes buy houses. People like us, we have to let the bank buy our house and we pay rent to them for thirty years. At the end of which maybe- we hope- we can get at least some of it back. But it sounds like our preliminary loan approval went through, so we're rounding third base, at least, with the process. The monthly budget will be easier by next month, with housing costing several hundred dollars less. Doing the math revealed to us that owning a home would have to lose us $80,000 in repairs or depreciation in the next five years to leave us better off renting, with rental prices so high. Because that is what we would pay in rent to stay in this house or one like it for five years.
Sorry this post has been disjointed and events not exactly in order. I've written it in about a dozen different sittings. I've lost content four different times, by way of life getting in the way or writing. I guess I got the mental health advantage of writing it all out, if you didn't get to (have to?) read it all...
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