Published on February 10th, 2016 | by S. Lynn Alderman9
“My daughter secretly has cancer or something. Don’t freak out,” says S. LYNN ALDERMAN
When I was 8-months pregnant, I got really sick. Actually, I had that Princess-Kate-vomit-party-problem for the first few months, so things were pretty rough from the start. But in the home stretch, I started having this awful pain in my side and general weakness and dizziness that landed me in the hospital. They took blood, poured my urine through a sieve for a few days—nothing. Every single test came back normal. They gave me an ultrasound, shook their heads, I got better and they sent me home.
A week later I went for a follow-up appointment and, on the way out the door, asked the doctor if the ultrasound had shown anything. Doctor V was substituting for my regular doc and said she’d go look. A few minutes later, she casually handed me a referral to maternal-fetal medicine and breezed out in her impeccably tailored white coat. I explained to my husband without understanding what I was saying that there was some kind of mass or something, probably nothing, and we had to get it checked out. One day a week, a specialist from the big children’s hospital in St. Louis traveled to our little Podunk, Mississippi River city, and I’d be seeing him on his next round. Turned out, this guy was a real comedian. He made all kinds of jokes while he told me there was a big somethingorothermaybethisorthat in there. Everything in the room seemed to turn yellow as he said the ultrasound machine was not his favorite, right, Nancy? YouknowwhatImeaninthischeapassplace, right? Nudge, nudge to Nurse Nancy, who stood there stiffly. Something was really wrong with that man.
Anyway, guess what? I didn’t have a tumor. But the baby did, a big one on the right kidney, size of a ping-pong ball. My sweet baby. We didn’t even know if the baby was a boy or girl. We just knew there was a tumor. A big one. On the right kidney. Size of a ping-pong ball. In the same spot in the baby’s body that I had been having all that pain in mine.
So, I traveled to St. Louis, wedged my giant stomach into an MRI machine, blinked at people giving me complicated information, tried to figure out what to do and think and say. Sent very together-sounding, hopefully non-scary emails to people. We didn’t know what to say, really. We didn’t know what was going on. And that’s when I started being a mother of a child with some kind of illness that freaks people out.
After some truly terrifying language, such as the phrase “we may have to take the baby,” it was decided that I could go into labor naturally and, after 36 hours, a special team would transfer the baby from our local hospital to St. Louis, where we would stay in the neonatal intensive care unit, the NICU, for tests. Okay. Okay, I said.
When I went into labor, I didn’t want to go into labor. You might say that I pretended I wasn’t. You might say that I went refrigerator shopping and was having contractions and arranged to have it delivered on my due date. I wasn’t sure I’d make it to the last delivery of the day and damn if I wasn’t going to get that new fridge. I called the guy.
“Hi, I talked to you this morning? I’m at 818 Avenue P? I was just wondering when you think you might make it here this afternoon.”
“Yeah, I don’t know. Four maybe. Maybe five. Is there a problem?”
“No, no. No problem. It’s just that…I am…I am pretty sure I am going to have a baby this afternoon, so you should probably call when you are on the way to make sure that someone is here. I mean, I can call someone if I can’t be here. I really want that refrigerator today.”
Now that that was all settled, I paced, my little brother called, I told him that I had been having some feelings.
“Feelings?” He laughed. “Do you mean you are in labor?”
“Yeah, sure. But, you know, it could take forever, so you know, no big deal.”
I rummaged through the pantry looking for some nonexistent delicious thing that would somehow be a cold drink and a sweet and a turkey sandwich and bent over with the next “feeling,” breathing.
“Are you having a contraction?”
“Yeah. Just a sec, okay?”
“Are you there by yourself?”
“Yeah, but it’s fine. I’ll call Luke if I need to.”
“I will! Everything’s fine! Oh…hold on.”
“Another one? Call Luke!”
“….Okay. I’m fine. Really. I’m just hungry. I have to go!”
I started to think that I should start paying attention. And I also didn’t want to think about any of it, so I got on the couch and started watching The West Wing, season five. When I felt a feeling, I paused the show, looked at the time, wrote it down, breathed, waited for it to stop, wrote down the time, and then restarted The West Wing. I did that for a long time. It seemed like the feelings were pretty close together. Sometimes just a few minutes. Sometimes 15 minutes. I didn’t know what to think. Except that I loved C.J. and I didn’t want the baby to come.
I called my friend Harmony and worried I sounded a little hysterical. I told her I didn’t want to have the baby and could they just please put me to sleep until the whole problem was solved and everything was okay? My first baby was delivered without medication and thought I wanted to do that with the second but now I wanted them to load me up with whatever they had because I couldn’t get my mind around what was going to happen next. And that made me feel so guilty.
My dear sweet friend said, “It is okay to ask for drugs. It is a tool to help you. Take advantage of modern technology! Get all the drugs you can! Do whatever you need to not to be scared! It will be okay.”
I called my friend Novie and realized I was definitely hysterical, crying and trying to figure out a way for it not to be happening. I didn’t want it. I didn’t want it. And when the baby was born, they were going to take it and I didn’t know what was going to happen next.
They brought the refrigerator. I helped them do stuff, pausing to moan in the other room.
Even now, I want to tell you all these details and avoid the next parts.
I called Luke. He came home. We went to the hospital. I asked for the drugs. The drugs didn’t work. But that was fine, because the idea of the drugs calmed me down and I had the baby about a minute after we got there. Completely TV drama-style, me yelling that the baby was coming out RIGHT NOW and the doctor (Doctor V, on call again!) running down the hall as people threw her less-nice coat on her, scrubbing in just in time to catch the baby shooting out of my vagina, flying through the air. That is exactly what happened, ask Luke.
Then they couldn’t stop the bleeding and there was some big frantic thing happening that I didn’t care about because I wanted to see that baby. “A girl!” Luke announced as she was sailing by. Yay! We both secretly wanted another girl, but didn’t want to admit it. A girl! Wasn’t she something? Wasn’t she hungry? I was so preoccupied that they let me hold her for a minute and then busted me outta there into the operating room where they told me serious things and I thought about how it really didn’t seem so worrisome, but oooookkkaaaaaay. Poor Luke, sat in the delivery room alone with the baby, wondering if he’d be a single parent, while nurses counted bloody gauze… “18…19…Oh, here it is! 20!”
Some kind of surgery and a couple transfusions later and I was back—nothing to see here! I got to spend those precious first hours with my new daughter, that perfect and calm little lamb. Her 4-year-old big sister came to meet her, breathless with pride and love and new responsibility. Oh, how free she was to be joyful, as we were tight with the possibility of her losing her little sister. What do you do?
The transport team came. They bundled her up in a machine that made her look like E.T. in the hands of the scientists. And they took her away. We followed, made the two-hour drive to the NICU, got into a terrible fight. We hadn’t finalized her name and I decided she had to have one immediately, that I didn’t want anyone to think we didn’t consider her worthy of a name. We named her. Lucia. Meaning “light.”
The NICU is an amazing place of science and the preservation of life, but it is not for new mothers. Seriously, that is a whole different story. Lucia had tests and tests and tests and many alarms kept me up and kept me crazy. My baby was a giant compared to those miniature miracle infants, who I heard the nurses grimly consulting about in the night. A horrible few days later, they suddenly let us go. We rushed out, not wanting to meet the eyes of sweet little Molly’s dad, who hadn’t heard what I’d heard at midnight about his tiny girl’s chances. We fled.
And here we entered the churning tide, the miasma, the blurry, slow-motion motions. The long drives to the cancer center. It was part of a children’s hospital where you were given a sticker at check-in bearing the department you were visiting with your child. Kind of like those combat stripes soldiers are given, but only for the day. Parents walking around in silent silos of pain, labeled with “NICU,” “PICU,” or, our battleground, “COSTAS CENTER.” That meant CANCER. I AM A PARENT OF A CHILD WITH CANCER. Let me take a sec to be grateful for that fucking hellhole. It is really, really nice. And I mean that. Great staff, gifted, sensitive doctors. Thanks, Bob Costas! It is also so, so full of pain and fear. Only once during the visits we made every few weeks for the first year of Lulu’s life did another parent chit-chat with us in that colorful waiting room. It was a parent of a child who looked healthy, with hair and everything. Musta been a newbie. Most were sitting there with children who looked like old people, waiting, looking away, looking through, looking.
In the middle of the blur, we agreed to allow the team to remove the tumor. She was seven weeks old. We used the camera timer to take a picture on the back porch of our house the day before, not knowing if it would be the last time the four of us were together. I didn’t buy any clothes for her in a size bigger than she currently wore for a long time. How do you do this? How do you do this? Our surgeon met us in his scrubs before he began, gave no illusions about how serious the surgery was, since the mass was tangled up with major blood supplies that, accidentally severed, could cause her to bleed out. Later we would learn he had a daughter the same age. He looked so intensely determined and he didn’t lie. We didn’t lie to ourselves.
She made it. She kept making it. The cellular markers that informed our thoughtful oncologist kept going our way, the best hand of a bad deal, again and again. Like, a pair of 4’s when you were expecting a bust. Then, three of a kind! A straight! We’ve got a game, here, people!
The name of Lulu’s disease is Neuroblastoma, Stage 4S. If you are going to have childhood cancer, it is really a good one to have (that is crazy to say). It is also rare and poorly understood. The protocol for treatment was regular labs and scans for the first year, chemo if things didn’t “resolve,” meaning, magically go away. When things didn’t magically go away, I was able to point out the arbitrary nature of our 12-month calendar and argue to delay chemo. Our wonderful oncologist, who had probably learned the hard way to play her cards close, listened. Then Lulu’s labs started to be normal. And then one day, our doc jumped up in the air a couple inches and said YES!
The labs kept being normal. Scans still show tiny, tiny abnormalities—tumors?—in her liver, but no new growth. She is fine. She is fine. She is fine. She is 3-and-a-half now, happy and thriving. Singing in her room with her sister at this very second.
I didn’t have to watch my child, my tiny baby, be “sick,” if you don’t count the horrifying post-operative state she was in after the tumor was removed (they took out her intestines to get to her kidney!). I didn’t have to see my child weaken, but I did have to hold her as she valiantly fought sedation for 45 minutes when she was less than a year old, eyes losing focus, grabbing for me. I did watch her injected with radioactive isotopes. I did flush IVs for days to try to avoid another needle stick. I did remove them when they failed. I did keep myself from having any attachment to her future. I did shield her sweet sister, as much as I could, from our fear. I did present my perfect baby to strangers as if everything were fine, everything is fine. When I wanted….what?
I think this…this is what I wanted, what I want: Someone to understand. But who? Among parents of children with cancer, we are lucky. Among parents in general, we are a nightmare. “I don’t know how I could handle that! I don’t know how you are handling that!” people say. “I don’t, either,” I say. Or maybe I just think it and smile. At the same time, I don’t want to talk about it.
I don’t want people to think something is wrong with my little Light. And I want people to be amazed at her survival. I don’t want to shock people. And I want some kind of acknowledgement, some honoring, of how shocking this has been. I haven’t figured it out. I’m working on it. I’ve been confronted with my own judgment of illness, that there must be some kind of defect, fault, something I did…a penance. The animal rejection of the weak. The ferociousness of protective motherhood. The desire to flee. The determination to fight.
Lu has a giant scar. She will tell you a cat scratched her. She asked me yesterday if we could get a rainbow car from the Rainbow Store. She is fine.
We are indeed so, so lucky. We are indeed so, so scared. We’ve learned lessons in gratitude that have changed us. And we have been aged by the fear. We go again for scans in April 2016. There is no neat end to this. I am just telling you about it. Don’t freak out.