I wish someone would tell me if we are going to have another kid some day. If I could send the baby stuff on down the line to the next breeder, we would have much more free closet space. I have started doing so with the clothes, but I know where they are. If we should happen to procreate again, I would probably just ask to borrow them back for the few weeks-months in each size.
Daniel is feeling... Bratty. Loud. Basically a giant, awesome pain. Loud fits, loud shrieking over funny happenings, no regard for the feelings and tender skin of those he throws toys at, swings broomsticks at, pulls and shoves around. And constant singing, in his own language which, being his mother, I should understand, but I don't. And constant nudity. Which is all an indication of how much energy has returned during this chemo break. He is being a normal toddler. I feel like we have skipped nine months of normal toddlerhood, which usually gathers force slowly enough that a parent doesn't really notice the difference between present day toddler and nine months ago toddler. Nine months ago, before he went down so hard and fast, he was really into helping. In a very sweet sort of way. Like so into being helpful that all I had to do was tell him how helpful it would be if he always went potty in his potty chair, and whatdya know, his whole world suddenly revolved around subsequent potties in the potty chair. No true effort required on my part, as long as I noticed the signs and was available to pull down his pants.
Now he looks right at me, then dramatically grabs a handful of food, holds it out, and opens his hand, letting the food drop to the floor where it is promptly eaten by the waiting dog. In spite of repeated reminders, in varying degrees of strength, that Andy has his own food and our food is for the people to eat. He forgets Alex is a breakable baby who feels the owies Daniel inflicts. And so does Andy. He is still quick with the kisses if we call owie on his shenanigans, but apparently as long as we "cure" the owies, we can inflict them at will. And oh, the emotional sensitivity. If he does cross a line and a parent express displeasure, the tears. They roll down the cheeks as we sob inconsolably, immobilized by the crushing weight of the grown-ups unmet expectations. How exactly is one to parent such a sweet, tender young thing with almost no concept of empathy and the lid blown off of nine months of pent up toddlerhood? After all those months of him lying there, miserable, shaking with pain, all those days of exhaustion, the last several months of being washed around by wave after wave of nausea, the days when his bottom was bleeding and oozing, when his skin was too itchy to be able to think about being a normal, bratty two year old...now that he is on a chemo break and apparently feeling much, much better, all the deferred busy-ness of those idle months is coming out. Don't get me wrong. I love it. Normal is never, ever something I will complain about. I'm just caught unprepared for it and scrambling to bring my parenting up to his speed.
This is slightly complicated by Alex learning to crawl. I have gotten lazy about things like plastic films, cords, uncovered outlets, long pokey things (sticks, spoons, etc) lying around. Now I suddenly have a newly mobile baby who is absolutely brilliant in exactly two ways- convincing us to hold and feed him whenever he desires, and self-destruction.
There are two opposing ways of looking at Daniel's situation, and I struggle every day with which narrative I should internalize. I admit, I compare our situation to others. All the time. I am constantly looking for clues as to how I should feel.
There's the nurse in the hospital who draws Daniel's blood, who tells me her own young son has leukemia as well, and also reacted to PEG, and has to get Erwinia shots, who's attitude seems to be, sure...loads of kids get leukemia. She acts like it's just one of those things that happens to kids. No big. Give 'em some chemo, send 'em on their way, good as new. We have the good kind of leukemia. So basically only slightly more problematic than the common cold. The moms I know who just quietly go about their lives, as if this really was just a hiccup. Nothing more.
There's viral story of the sweet wishes granted some kid who has the same kind of cancer as Daniel, and the portrayal of the kid as such a tragic figure, a disadvantaged little cancer victim confuses me. The random mom in some other state who's facebook page I come across who's toddler, as far as I can tell, is on a parallel journey, the same prognosis as Daniel, but who somehow has over 10,000 facebook followers and a huge donation-supported fund complete with huge fundraising concerts. Like as if they're deathly ill.
These things make me wonder if there is something I don't know...should I be more worried? Or am I being overractive and thinking I am somehow entitled to unwarranted sympathy, as evidenced by the very existance of this blog and Daniel's facebook page?
One side of me is influenced by the casualness of the medical staff taking care of Daniel, breezily prescribing drugs in such a way that suggests they don't give the potential side effects another thought. The "no big deal" attitude. The fact that we rarely actually see "our" doctors, the ones making the decisions in Daniel's treatment, that we were told at the beginning how familiar we would get to be with the staff, but we barely remember anyone's names yet, and I think, perhaps this is because we just have what, as far as cancer goes, basically amounts to "pretend" cancer. If we had "real" cancer, it might be a different story.
Then I stumble across the story of some kid with ALL who died (social media, presenting all the worst case scenarios), or I read some study where a certain percentage of the kids did not recover, and I start to feel I have been entirely too flippant and irreverent about this whole thing. Because if I don't take this seriously, some sadistic twist might drop us on the wrong side of the statistics.
The facts are that one out of ten don't survive the "good kind" of cancer. That's ten out of a hundred. If three hundred all happened to attend an elementary school together, that's thirty kids. Which is pretty terrible when you look at it in terms of something like, say, a fire, tornado, or even a school shooting that leaves thirty of three hundred kids dead. But pretty good when you consider the brain tumors that take all three hundred.
I don't know if I really have a point, except that comparing us to others like us gives me clues as to how I should be reacting, in a way. I am so lost and confused in this whole Cancerworld experience, I don't know if the correct narrative should be to minimize or dramatize. Of course, ideally I would do neither, and this is what I try to shoot for, but then I wonder if I am unknowingly doing one or the other. I spent three hours online the other day going through Daniel's flow cytometry report number by number, word by word, trying to make sense of it to give me an indication on the specifics of his diagnosis, and therefore, prognosis. I know more about genetics and proteins than I did before, I know that his cells are hyperdiploidy, have a lot of DNA, which is more likely to respond to treatment, but the internet doesn't have a place for me to ask the specific questions I have, but do not even know enough to word them precisely to his doctors to get the answers I want. Which really just boils down to, tell me where he is compared to the kids who have relapsed. Tell me this precise kind of leukemia never comes back. Tell me you've never seen a kid with his exact genetic markers and his exact pathology not respond to chemo. Tell me if my heart is safe. Tell me there's no way we will be the one in ten, because those other kids all had some genetic difference that made them relapse. Tell me there is perfect logic and science in this treatment and there will be no unforeseens and we will see him grow up. Tell my heart it will never have to shatter.
Last night, for some reason, the dreads attacked me again. Fear made me reach out in the dark and place my hand on his back for reassurance. In the dark, my monsters-under-the-bed foreboding in full force, his back felt unnaturally still, hard and cold, and I could not immediately hear him breathing, nor feel his breath making his back rise and fall. I freaking lost it. Literally. I couldn't breathe, instant nausea, my heart lept out of my chest. I grabbed his ribs and shook him hard, and he whimpered a bit in his sleep, then rolled over. The flood of relief was instant and turned every muscle into mush. I lay there shaking and breathing hard, every nerve on high alert, willing the fight or flight response to leave my body, my arms wrapped around him, my face freshed against his skull, obsessively kissing his forehead and breathing his scent. The rest of the night, I tried to sleep but couldn't, and when dawn began to lighten the room, I finally slept and dreamed horrible, bizarre dreams. And ever since, I haven't quite been able to shake that feeling of sheer, panicked, abject horror. Ever since then, I've been obsessing over needing to know that I will never feel that way for real.
Tomorrow it all starts again. Our three week break is over. It was really only a week and a half break, because it took the first week and a half for him to start to feel better. Tomorrow we get a lumbar puncture with intrathecal methotrexate, vincristine, doxorubicin, and we start a week of dexamethasone, the vilest steroid. This phase has two weeks of Dex, with a week off between them. I guess we'll see how he reacts, now that his body remembers it's last experience with them. At the moment I am sitting in the recliner nursing him to sleep and he kicks his feet and squeezes my skin, sweating profusely in this vinyl chair under his warm little body. My parents are here. It took awhile to get him out of their bed and out to the living room to make an attempt at rocking to sleep. He just feels so good. He was turning their bedroom light on and off, shrieking and giggling and not interested at all in sleep, just a half hour ago. He ate food like a real boy all day. He played super hard with the Early Intervention Assessment Team, with whom we met this morning to determine his eligibility for programs once he ages out of Early Intervention in three months when he turns three. I know, right? Three!
My dad has appointments all day tomorrow getting a cancerous lesion removed from his ear, a non-serious, non-spreading sort of thing, but apparently something University Hospital is more qualified to do than their local clinic. My mom will come with us to the Children's oncology clinic, we'll get Daniel's procedure done, then hopefully have some girltime with Aunties Christina and Lisa before we go home to pack and clean and prepare to move. If the closing goes through. If.
And now the wee darling is sleeping in my lap. My alarm is set for 6:30 in the morning, and he can't nurse anymore after 4 am because his appointment for anesthesia and lumbar puncture is at 8:30. It is hard for me to remember when he finds me in the dark, and I don't wake up enough to realize what he is doing. So far, in seven months of these procedures, we have not sabotaged our procedure time slot with irresponsible nursing. I don't intend to start now.
See ya on the flip! A crazy two and a half weeks full of crazy schedule starts tomorrow. After tomorrow, the first day we have nothing scheduled for is November 8. Between medical appointments, speech therapy, physical therapy, and our trip to the wedding in Tahoe, we are busy people for the near future.
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