^ 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.
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