March 4, 2018, 12:08 a.m.
On the day you were diagnosed, I remember thinking that we were, in that very moment, joining a new world, a new sphere. I remember thinking about the late-night commercials with the bald cancer kid, thinking about how that is now you, my sweet baby girl. We are now that family. Our initiation into this new world was swift and even perfunctory, in some ways. Your daughter has cancer. Here's a consent form. Feel free to read it before you sign it, but don't take very long because we really need to begin chemo immediately. Like within hours. No one said it out loud at the time, but it was implicit that the leukemia was killing you, and that without expeditious intervention, you would die within days or weeks, maybe months. Not years. Informed consent, but no choice.
For the ensuing two and a quarter years, a lot of the medical procedures were just like that. Here's what we're going to do to your little girl. PICC line, port placement, dressing changes, lumbar punctures, IVIG, IV antibiotics out the wazoo, steroids, general anesthesia, port access again and again, more ER visits than I can count. And of course chemo--oral chemo, IV chemo, CSF chemo. Here's what we're going to do and when we're going to do it. Get on board. Here are the rules, please follow them. If you don't, your child may die.
Medical procedures constituted some of your suffering, no doubt. Most of them hurt, and most every procedure happened again and again and again. Early on, you used to scream and cry when you realized that we were packing for yet another day-long clinic visit. Sometimes we'd try to trick you, saying that we were going instead to your beloved walking doctor, the physical therapist who helps you week after week. But then when we would drive right past that office, and you realized that we were heading north to UCSF, you would cry and scream again. No, no, no, no, no, you'd say, kicking and screaming. Our hearts and souls would break. But there was no choice.
In this new world--the "on treatment" version of it, anyway--that we'd entered, we were told that you'd be immunocompromised. It means the chemo's working, everyone kept saying. But the part we didn't understand at the beginning, not until we lived it, was that you would be sick almost the entire time you were on treatment. Sick from chemo side effects sometimes, yes. But sick because you are tiny girl trying to live in this dirty world with a very weak immune system. Sometimes just sick with a cold and a cough, well enough to be out and about with your brothers. But more often, sick with some new virus that knocked you to your knees, where you'd sleep for thirty or forty hours at a time. Or end up in the hospital with a fever. Where you'd lay on Mama's bed or the hospital bed all day long, staring at the ceiling. Very, very sick. Suffering, for 2 1/4 years.
Our agony, that of your parents, knew no real bounds, if you want the truth. Which I imagine you will want to know one day. And we had very little informed consent about this part. Parents want to protect their babies from the evils of the world forever. But we couldn't protect you at all, since your evil was inside your own body. If you want the truth, I've never in my life feared anything as much as I fear your cancer. And your father and I knew what you didn't, that if you weren't a cancer kid, you would have been a regular kid--enjoying preschool, making friends, splashing in the water with your brothers. Not going to blood doctors and walking doctors and port doctors, not taking drugs or getting sick again and again. Not staring at the ceiling. That there are no guarantees, not now, not ever.
But you did it, baby girl. You did it. On October 17th, you swallowed your last dose of methotrexate. And on October 20th, you entered the "off treatment" cancer world with one final dose of 6-mercaptopurine. Your father took a video of you pushing that syringe, swallowing it once and, with any luck, for all. A week earlier, you'd had your last IV infusion, and your last spinal tap weeks before that. That night, we all held hands in a circle and danced and smiled with you. And later, after you were asleep, we cried for all your pain and suffering and for all of ours. For everything that has been lost in the last 2 1/4 years, the hardest of our lives and certainly of yours.
Off treatment has been a huge shift, if I'm honest. Within weeks, you started laughing. This big, bottomless, woozy laugh. Joy leaking out of your smile, bursting from your eyes. And we realized that we hadn't heard you laugh in 2 1/4 years. Your cancer world had been mostly somber and humorless for as long as we could remember. This is my first blog post since your EOT. I haven't been able to write becuase I am happy and sad and incredulous and so, so scared that we will wake up one day and your body will have turned against you once again.
All of which leads me to a few other things for which there was never any informed consent. You know that world we entered that morning you were diagnosed? We will always be part of that world. And it, a part of us. No choice. Also, your father and I will never, ever stop worrying-that you will relapse, that the poison we pumped into your veins over years will lead (as expected) to one or more chronic conditions, that this will steal from you the opportunity to have your own babies should you choose. Not for one day or for one minute. Not ever, since we are your parents. If not us, then who? Simply no choice.
But I want you to know one other thing that no one mentioned early on, for which there was also no informed consent. You are, without a doubt, stronger for all you've endured. Tough as nails. We are all stronger now, as humans, as a family. Living this together has changed us in ways that we are just beginning to understand, yes. But our family is dogged and resolute in our commitment to one another. We love each other very much, that much my heart knows. When I hear your off-chemo laugh? Ah, everything else just melts away, and I feel a kind of serenity. A calmness, a kind of gratitude, I suppose, for all that we've survived together. A gratitude for Trinidad, who lay next to you on our bed time and again during some of your sickest days, early on. For your father’s unwavering commitment, his terrified eyes and quiet tears that accompanied each of your dozens of fevers, for his tireless love. For every night that your brother Zander saw you off to the ER, then stoically climbed into bed next to Mom or Dad. A gratitude that your brother Declan eats hand sanitizer when we’re not looking and cleans surfaces for fun, because keeping things clean for his immunocompromised sister has occupied his entire 3-year-old life. For your sister Aoife, who somehow knew since the day she was born that she would, for the time being, take a quiet backseat to your cancer.
We your family all see the world in different colors—bright and clear—because of our time caring for you and loving you. And in a heartbeat, we would do it all again. Please know, my sweet baby girl, that should it come to that now or ever, we will do it all again. A gratitude for this clarity. We will never, ever forget. No choice.
A gratitude for you, Aila Muriel.
Comments
Vyga 6 years, 8 months ago
I always marvel at the clarity of your writing and your unique ability to weave in humor when describing darkness. Love to you all, each and every one. It was wonderful to catch a glimpse of Aoife's sweet smile, to hear Zander voicing his support, to see Declan rolling on the floor, and to witness Aila's last (last!!!) dose of methotrexate. Your mini-med school is over. I hope you never have to go back.
Link | ReplyEric 6 years, 8 months ago
Your love gives strength to your daughter.
Link | ReplyYour blog gives strength to others.
Michael 6 years, 8 months ago
Simply heart wrenching to read. Love to you all, and I'm so grateful the next chapter has begun. I can't wait to see what she will become.
Link | ReplyNew Comment