This picture is such a good one for contrasting how far we have come in four months. At the end of May, he still spent entire days in the hospital bed and cried when someone suggested he do anything. Literally anything. All he wanted to do was watch TV and maybe, just maybe, drive cars on his bed. As long as he didn't have to move too much. And the entire time his port was accessed, he clamped his head against that shoulder. And now? This pretty much sums it up. Pantsless, climbing on furniture, dragging the IV pole around and barely noticing the tubes hanging from him. That picture makes me so incredibly happy when I compare it to what he spent months doing:
We only had one potty accident the entire three days. And this was after his chemo was mostly cleared. But it was nice to be able to get away from the diapers when his urine was most caustic. As it is, his diaper area survived the chemo without developing sores, but his face was not quite so lucky. Wherever he drooled overnight has developed a painful-looking rash. Actually, my nipple on "his" side also developed a chronic stinging sensation and looked a little irritated after spending so much time in his mouth. I googled it to see if this was a "thing", and if it could possible affect Alex, but of course, as with every "breastfeeding a toddler through chemotherapy" question I have, the internet thinks I'm the one with cancer. I know there are moms out there doing this. And there have to even be some doing it while also breastfeeding a younger sibling. They just aren't posting or blogging about it, apparently, so even with the wealth of information accesible through a device that fits in my pocket, I'm still bumbling my way through a lot of this blind. He also developed some minor blood in his urine, which indicates irritation some other place in his GI tract. Not so unusual, but also not exactly ideal. Thankfully, his platelets are nice and high. His body has the ability to heal itself right now, at the start of this latest phase before our counts get knocked back again.
My dad accompanied us to the clinic on Wednesday, entertaining Daniel while we waited an hour past our scheduled procedure time by being extra loud and destructive with him. If you've been in the main lobby of Children's Hospital, you know the "ball machine". It is a glass-enclosed mechanical wonder, a Rube Goldburg-esqe machine that does not perform any particular task except keep a number of small plastic balls moving circuitously through it, powered by one small motor carrying the balls to the top to begin their gravity-powered descent through a maze of carefully calculated bounces, tracks, levers, and funnels. Daniel, of course, is obsessed. He will literally never leave the display of his own free will. I have been known to get him from the elevators in the back of the lobby to the front door via a longer route through back hallways on days we do not have time to accomodate endless wonder, curtesy of the ball machine.
So, the ball machine. They were servicing it when my dad brought Daniel up to the clinic while I took Andy, who would wait in the car for a ride to Kansas, potty on a patch of grass outside. When they stopped in the atrium to experience the wonder that was the now-opened-up ball machine, Daniel was presented with the most mind-blowing gift by one of the technicians- one of the mystical, magical balls heretofore only viewable through the glass. He accepted this bestowment with the solemn acknowledgement of the honor and responsibility that was now his as the owner of one of the core components of the ball machine, and held the treasured talisman carefully in his little fist. Once in the clinic room, after I had joined them, the two "kids" conspired to arrange their own version of the ball machine by placing the ball in the back of a small plastic dump truck on the cot, then dumping it out in just such a way the ball would bounce off the linoleum tile floor, ding loudly against the metal desk leg, then ricochet between chair legs until it wound up in some corner. And then they retrieved it to do it again. I cringed every time it thwacked a wall, knowing how well the noise was carrying to whoever was below us and beside us in other rooms, but being the only adult worried about such things, I was outnumbered. When the doctors finally came to get us for Daniel's lumbar puncture, he held the ball as grandpa held him, and when the propofol kicked in and he fell asleep, the ball rolled out of his hand, bouncing across the procedure room floor and under some monitoring equipment. Now, normally, the second Daniel is asleep, jaded by so many of these heartbreaking moments by now, we give him a quick kiss for luck and scurry out of the room while the door closes behind us, but grandpa Kevin lingered with the kisses, then after reluctantly turning loose of Daniel's limp little body, hit the deck and went scrambling after the ball on his hands and knees, past the ankles of the doctors, nurses and anesthesiologist, rummaged around in the tangle of cords under the computer stand, and finally emerged triumphant with the ball while the staff of the procedure room had no choice but to begin prepping Daniel for the procedure, ball drama notwithstanding. I have been trying to get a decent video of the scenario that is Daniel going under anesthesia for a while, and unaware of the ball drama that was to come, was surreptitiously videoing it on my cell phone. So yes. I have the whole thing on video. Minus my cringing in embarassment behind the camera, of course. It's funny now. I'm so thankful, again, for the fluid process that is pediatrics and the flexibility of those in the profession. That particular procedure room has, to hear tell, seen everything from convenient tooth extractions to haircuts on it's anesthetized occupants. One scrambling grandpa ball retrieval, not a big deal.
From the recovery room, we were shown to our room on 7 west, where we settled in for the next three days. Grandpa carried up our suitcases, potty chair, and toys for the next three days, then sneaked out while Daniel was preoccupied to avoid bye-bye tears. Late that night, Bobby finally walked in after having not seen his kiddos, outside of video chat, for two weeks. Daniel, with the aversion to wild displays of affection he inherited from his dad, tried hard but failed to suppress his face-splitting grin when he saw him. The two played hard for the next several hours. It was so exciting being all together again, we were still up late that night when the cafeteria closed and the 24/7 Grill expanded it's menu- the one big reward for being night owls in the hospital. During the day, when the cafeteria is open, the typical cafeteria selections apply. Not-so-fresh hamburgers, french fries, onion rings, pizza by the slice, salad bar. But after 10pm, the Real Food comes out. You'll wait a long time, but when you get your food, it really is death by deliciousness. That is, if the clogged arteries don't get you first. Our selection that night was loaded nachos. A divided tray plate so stacked with chips, cheese sauce, shredded cheese, bacon, green onions, and pickled jalepeños that it won't close, and weighs in at 4 lbs (the person ahead of me in the food line claimed to have put it on the scale once) of pure gut-punishing calorie overload. We suffered the gastrointestinal aftermath of our late night calorie dalliance for two days of being closed in a hospital room together with no fan in the bathroom. Totally worth it.
We shared a hall with some familiar faces this time. Simone was back, but unfortunately she was on isolation. Several other familiar faces were also there, plus we made another new friend, a little girl with a much more difficult cancer than Daniel's. As faces become more familiar, I am starting to become much more emotionally invested in the precious little warriors. I am still a virgin as far as witnessing one of them lose ground in their personal battles. So far, I am shielded from the heart-splitting agony that is a friend and fellow parent witnessing a child, with whom they have spent months if not years in the hospital, who is nearing the end of the most grueling fight of their lives and seeing hope of a normal life returning, relapsing. So far, this whole treatment process has been little more than a massive inconvenience for us. Mostly because I refuse to visit any other outcome. And my lack of experience, in our mere four months of being involved in this world, affords me that luxury. But little by little, I am beginning to see the signs that somewhere deep inside, I must be acknowledging the possibility of a less than ideal outcome. I see it when I realize I have thousands of pictures and videos on my phone of the most mundane moments, all characterized by one common thread- the normalcy of everyday life with a happy, innocent child. When Daniel was first diagnosed and it seemed impossible that he would ever walk, talk or smile again, I watched and rewatched three short video clips of him toddling around in the kitchen, humming a little made-up tune and "helping" me unload the diswasher, and every time I watched them, they simultaneously ripped my heart out and made me smile, grateful for having had the honor to spend such a momentously unremarkable moment with him, just being his mother. And now that those moments of perfect unremarkability are happening again, and he is once again filling the frame of my camera with the normalcy of toddlerhood, I can't stop recording it. And I can't bring myself to delete even the bad pictures or videos, the unfocused ones, the ones he is only in peripherally, or the ones he was supposed to perform for and didn't. Because, somewhere deep down, is this horrible suggestion that there is a chance. A small one, but still a chance, that these captured moments will someday be all I have left of this beautiful inconvenient time. Then I think, but isn't it time that already does that? These moments are passing us by no matter what our future holds. If cancer doesn't steal our baby, time will. Yes, if it's time that takes him, time will replace our baby with a beautiful adult someday, but these moments, these, right now, are so sweet because they are so fleeting.
And then I realize Alex is not immune either. To be a parent, or more broadly, to wholeheartedly love, is to give your heart completely to something you have no guarantee won't be ripped from you without fate giving even the smallest nod to the magnitude of your loss. One could go crazy, lying awake at night with the thought that we have no promise we will all still be breathing by tomorrow. And from that perspective, does it even matter that one of us has a condition that is potentially life-threatening, while we all have the possibilty of falling victim to the many, many things that could rip our family, which is everything to us, apart? And then I wonder if thinking such thoughts makes me a pessimist, or merely a realist.
So I guess I have to admit by now that the fear of relapse, of not being cured, of the reality that "long term survival" is a mere five years, is growing roots in the dark places, even as I confidently walk in the sunshine that is a good prognosis. It is affecting me deeply, knowing a handful of children who, in spite of being loved in a deeper, more complete, more dignifying way than most kids can even dream of, won't live until their next birthday, let alone grow up to be the kind of deeply caring adults such a childhood would make them. As I fight down the panic that comes from knowingly dumping substances into Daniel's body so toxic that a known occasional side effect is secondary cancers more deadly than the one he has now, knowing the alternative is no treatment, a route which, had we taken, would most likely have us mourning his death right now instead of celebrating his improvement, I also know that I have the luxury of panicking over worries like potential organ damage. I have the luxury of worrying about the adult effects of childhood cancer that a full two-thirds of childhood cancer survivors experience- infertility, relapse, secondary cancer. I have the luxury of walking, with his doctors, the fine line between risk and reward- hoping and calculating that his treatments will benefit him more than they will harm him. If he were terminal, we could treat his symptoms with no thought as to future effects- we could waste those tiny organs. We could addict him to painkillers. But the very fact that we are treating him with a wary eye to his future is a luxury not everyone has. And for this I am humbled. Because there is no difference between us and the parents who are not at Children's Hospital because they no longer have a child needing treatment. There is no reason they should not be us, or we should not be them. It could have been us, but for some inexplicable reason, it isn't. We are all good, and bad, generous, and selfish, and cancer doesn't care how deserving or undeserving we are. Some of us just got lucky, and are so deeply grateful for this, that every waking moment, we vow to rejoice over the things normal kids do that make their parents crazy.
There is nothing fair about childhood illness. But one shortfall is more egregious than all the rest. And that is the amount of money given to researching childhood cancer. Cures for childhood cancers are not medicine's top priority. This is hard to imagine, given that the poster child for all cancers is often literally a child on a poster. With a bald head and haunting eyes, she invites us to donate to cancer research, and donate we do.
But this.
National Cancer Institute's funding for pediatric clinical trials is $26.4 million. Funding for AIDS research is $254 million, and breast cancer is $584 million. Tough break for the kid on the poster. All she's really doing is tugging on our heartstrings so our donations can be repurposed toward adult cancer research. And although it is a broken record in the world of childhood cancer, it bears repeating: that is not okay.
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