FIGHTING BACK: One Mother’s Story–chapter 14
Five months later we were back at Babies for another appointment with Dr. Wolff. A radiologist was already there–an unusual development for us–with Valerie’s latest X-Rays. He clipped them onto the light box in the small examining room and pointed to a faint shadow on her chest. In short order, a second set arrived. The shadow was still there and all my hopes were shredded. That shadow, so soon after my beautiful young daughter’s last lung surgery, was confirmed as another malignant lesion.
“Oh, no,” I whispered. My eyes burned as the phrase, ‘no crying, Sue,’ once more flashed through my mind.
The Ewing’s had metastasized from the original tumor in Val’s right leg to the lower lobe of her right lung and now into the two upper lobes of that lung. Because there were no other signs of cancer, the specialists agreed: remove the lung. Omygod. My poor baby, my poor baby.
Just looking at Dr. Wolff filled me with anxiety. Always. But this? This was beyond belief. “Remove her entire lung?” I said. “She’s not even nine yet.” My voice grew louder. “How is she going to walk around, play, run, have fun, be a regular little girl?”
Wolff’s response? “People do live comfortably with one lung, you know.” No. I didn’t know that, Dr. Wolfe! I calmed down only because I knew I had to; I had no more comments or questions for him and Ed nodded a tentative agreement to surgery, Val’s fourth in five years.
Driving home, with Val asleep in the back, Ed and I talked.
“Eddie,” I said. “This is terrible. What are we going to do? How do we go ahead and do this awful thing without making sure we’re doing the right thing?”
“We are,” Ed said, “it’s the only thing. We have to get rid of that cancer.”
“I know that. But let’s consult again. Let’s ask Wolff where we should go. Maybe even he has some doubts. He didn’t look all too sure about it, if you ask me.”
“He was sure. He didn’t look in doubt at all, but, yes, let’s consult,” my husband said, not looking all too sure himself.
Ed and I called Wolff when we got home and asked if he thought consulting might be a good idea. We were both quite unnerved about asking him, but he accepted our question easily and said, “It’s always a good idea to consult.” Thank goodness! He went on, “I would suggest calling Dr. James Holland at Mount Sinai Hospital. He’s also a pediatric hematologist-oncologist and very good. He’ll give you an honest opinion.” With that, we called Dr. Holland’s office, told our story and got an appointment two days later.
Mount Sinai was an old hospital similar to Babies, and Holland’s office, through a warren of hallways and elevators, was just like Wolff’s, small and outdated. More important, though, was Holland’s personality, his behavior. Oh . . . whatever you want to call it . . . he was simply awful.
After brief introductions, he told Valerie to strip, picked her up, laid her naked on the examining table and proceeded to check her out: no cover over her of any kind. Val was quiet and didn’t say a word: her face, turned toward the wall, was as white as one of the seashells we had seen on the beach in Puerto Rico. She was old enough, at eight, to be embarrassed by her nakedness in front of a strange man, doctor or not. I was appalled but too shaky to say anything.
When Holland was finished with the exam, he told Valerie to dress and we moved into his office—Val was handed a children’s book to read in the reception area. He then told us to follow Dr. Wolff’s advice and remove the lung as soon as possible; the conversation was over as quickly as that. Ed thanked him for seeing us and we left. I couldn’t get out of there fast enough. But we now knew what had to done.
As day ended the following Sunday, we told Val of her return to Babies Hospital that night for the operation early the next morning. She was on my lap with Ed kneeling by her side but the tears came immediately. I told her that I would stay with her, that I would sleep over with her but she just cried and cried until all her tears were gone and her head came to rest on my shoulder. Stacy, her eyes big and glassy with her own tears, raced away to the sanctuary of her room.
Some time passed and while Val’s tears had subsided Stacy remained upset alternating between a sulky silence and brooding one-word responses. Who could blame her? Stacy knew that her world as well as Valerie’s would be unsettled once more. Erin, our housekeeper, was there with Stacy, though, and I was grateful for that.
Dinner was a brief, unhappy affair and glad when we were done I packed a small suitcase that included Valerie’s Donald Duck nightgown, her tattered sleep blanket and Gumby. Raggedy Ann would be hand-carried. Since I’d be staying in the hospital room with Val, I crammed my underwear, jeans and turtlenecks into a paper bag along with a large bottle of homemade iced tea and my Mallomars.
We had to be on the road no later than 7 p.m. that night for the evening’s 8:30 arrival at Babies. I wanted it to be a slow and easy separation from home for all of us, but as the minutes sped by the leave-taking became rushed. And too quickly, Ed and I hugged and kissed our older child good night, our reluctance to let her go overwhelmed by our need to hurry. Coaxing Valerie forward, we moved to the car.
The drive to Manhattan was a silent one. Both Ed and I were talked out and no longer able to think about what lay ahead. Valerie, slumped against her car seat in the back, slept soundly.
Once at the hospital, Ed began the search for a decent chair roomy enough for me to sleep in. He found one in an empty patient’s room and with a nurse’s help he shoved, grunted and tugged it a few doors down the floor and into our room.
“It’s ours,” he said, a false cheeriness to his voice. “It was just misplaced.” A final heave-ho settled the black, perennially ill-treated chair into a corner facing the bed. Ed stood back, looked at it and his grin faded. I gave him a quick kiss on the lips. “It’s fine, Eddie.” “It’s not,” he muttered, not quite out of my hearing. Ed left soon after to drive home to Stacy.
I stood at the entrance to Val’s room and watched as the elevator doors shut my husband off from view. Within seconds, the loneliness and panic that had been under cover swiftly emerged. “It’s this place,” I commented to the floor, and with a jerk of my head to clear thoughts of cancer, I turned back to my younger child.
Val was undressing Raggedy Ann without much enthusiasm but perked up when a bunch of familiar faces—nurses and residents from past hospital stays—began dropping by to say hello. They joked with her, played with Raggedy Ann and ate all my Mallomars. Bye bye breakfast.
Soon, though, the fun ended and other health care workers crowded in. In a flash, the stethoscope and blood pressure cuff appeared, blood was drawn, Val’s belly was poked and questions were asked. Fifteen minutes passed, their work done they disappeared.
I sat on Valerie’s bed, smoothed her silky hair and straightened her blankets. “Okay, honeybun, it’s getting late. The Sandman’s coming. Pick a book and get under the covers.”
After I read Val’s choice, Dr. Seuss’s Green Eggs and Ham, I covered her soft cheeks with little kisses, tucked her in and walked the few steps to my chair. After throwing a hospital blanket over the lumps and adding a pillow from the eleventh floor storage closet, I declared it my bed for the duration. I picked up my book and as I sat down the chair’s cushion, saggy, spotted and erratically stuffed, expelled a vulgar swoosh of air.
“Oh, Mommy!” Val snickered. But she was worn out and asleep even as she giggled her last note.
Light from the hospital hall allowed me to read without disturbing Valerie but I couldn’t concentrate. I took my glasses off, threw my legs over the chair’s arm and leaned back. There was no hiding from it. The crackling of voices over the intercom, the drone of rubber-soled shoes on linoleum floors and the strained silence confirmed the hospital’s presence. Trying not to think about tomorrow, I willed my eyes closed and attempted to nap.
Ed returned early Monday morning and we talked, our voices low, until Valerie, mildly groggy, was wheeled to an operating room on the ninth floor where surgeons removed the rest of her right lung. We were pushed toward the lobby’s waiting room, once again.
When the procedure was over, they moved Val onto the ninth floor’s ICU and called us. At that point, Ed and I hovered around her as much as possible. Soon, though, I found myself doing what I always do: that is, putting my hand on Valerie’s forehead and feeling repeatedly for a high temperature. What did I think the nurses were there for? What was I doing?
Ed, on the other hand, sat down in the chair next to Val’s bed but after a few minutes would get up and walk to the other side: back and forth he went, a gazillion times. I said, “Ed, stop moving around so.” And he did, for the moment. We both felt useless and depressed. After a fast, late night sandwich, Ed left for New Jersey and Stacy.
My retreat, as always, was the visitor’s waiting room up on the eleventh floor. Because of the ICU rules, if Valerie slept, I had to leave. Over and over Val complained but the nurses were tough and their rules had to be followed. The procedure went like this: Val would fall asleep in the ICU, I’d leave, run up to 11, take my shoes off, lay flat on one of two sofas and wait anxiously for an ICU nurse on 9 to call a floor nurse on 11. I’d hear the holler from down the hall: “Mrs. Goldstein, Val’s up,” or “Mrs. G., I just got the call, you’re on,” or simply, “Sue, she wants you.” Ramming my feet into my shoes, I’d grab my handbag and move fast.
The elevators were sluggish and unpredictable. Unable to cope with the wait, I’d run down the two flights of concrete steps to my daughter. Daytime was no problem: the stairs were a standard form of in-hospital travel. But at night they were dimly lit, rarely used and creepy. I ran faster at night.
I hated everything about this place. Hated it when I was at Babies with Val but did not want to leave it when she was released to go home. Such a nutty thing! Suzann agreed.
After three days of intensive care, Val was transferred back to 11 where nurses and technicians continued the post-surgical vigil. They checked her vital signs and incision, compared new chest X-rays with older ones, punctured fragile veins for endless blood tests and ordered more effective pain killers. I would hold Val’s hand, search for clean bedpans, run to get her some cold juice and find anything else she needed or wanted. I ached for her to be comfortable.
On our second day back on 11, a chunky, brown-haired woman in a print dress and sturdy oxfords poked her head into our room: her pallid complexion and red-rimmed eyes identified her as an eleventh floor mom. She spotted Valerie asleep in her hospital bed and paused for an instant. Then, softly, she asked me, “How are you doing? Want company?”
Tired and edgy but unwilling to reject my visitor’s offer of friendship, I smiled, said, “We’re okay,” and reset my brain for social mode. With that, she stepped into our room and introduced herself. “I’m Sarah. Welcome to 11.”
At first, we discussed trivia. Sarah said, “The nurses here are so overworked, they can’t seem to get meds to the kids on time. It’s terrible but I guess we have no choice; the nurses run around like crazy.”
I nodded and said, “The thing that bothers me most, though, are the sleepless nights. I don’t want my daughter to suffer because I’m sleep-deprived.”
The small talk ended as Sarah, without warning, described her most recent annoyance–my family and our noisy evening admission to the hospital six nights before.
She said, “We had to check into the hospital early Sunday morning. Administrative policy we were told but you ignored the rules WE had to follow. YOU were allowed to check in at night! And the staff spent too much time in your room. You were all so loud!”
Sarah had watched us from the doorway of her son’s room. “I was sure your daughter was in for minor surgery, probably to have her ears pinned back or her nose bobbed. She bounced around so energetically.”
On that Sunday night, according to Sarah, our child looked healthy and alert. Her son, on the other hand, was suffering from some unknown disease and appeared sallow and ailing. Yet the staff, visiting Valerie in droves, that was true, was not hanging around him. So Sarah simmered. My jaw dropped. I was stunned by her outburst.
Sarah complained to a floor nurse about us. Trying to calm her down and unable to, the nurse described Val’s medical history, adding that because of her many hospitalizations, she was well-known on the floor.
Sarah’s voice softened. She said to me, “I know that your daughter has cancer and had a leg amputated last year. And I know the cancer’s back and she had to have a lung removed. I’m so sorry, so very sorry.”
Sarah then told me that she was an orthodox rabbi’s wife. I wondered, wasn’t she supposed to be kindly, even-tempered? How about . . . maybe . . . even rabbinical?
My body had stiffened. I couldn’t bear to talk about Val’s cancer to people I didn’t know. It was too hard to look at their faces, to see their reactions, to hear them say, “How awful,” to nod as they floundered for words or shaky platitudes.
Yet Sarah didn’t sound flustered. Instead, she was forthright and a mother on the eleventh floor of Babies Hospital. Just like me. She uttered no truisms, no religious declarations, no stale slogans. Her role as a rabbi’s wife had been placed in storage.
“Forget it,” I said. I began to like her candor.
The bristly getting-acquainted part over, Sarah and her 12-year-old son Elliott dropped by Valerie’s room as often as they could. Though four years apart, the two children bonded and compared notes on life in the hospital as we mothers kept guard.
Sarah told me Elliott had a kidney problem that puzzled the doctors, she had two younger children at home and a husband who was an Orthodox rabbi. Her nights were spent in New Jersey and her days in New York at Babies.
Because of her religion Sarah couldn’t travel on the Sabbath so she slept in Elliott’s room every Friday night, took the bus home at sundown every Saturday night to be with her other children and her husband, then circled back to the hospital and Elliott every Sunday.
The Monday evening after we first met, however, was the beginning of the Jewish New Year, Rosh Hashanah. I was busy and didn’t think too much about it. Although brought up as an Orthodox Jew, I had lost all interest in religion. I liked, however, the traditional holiday meals with my family as well as the occasional trips to the synagogue.
In contrast, Sarah’s life was steeped in Judaism, and so she thought a lot about the holiday. It saddened her that she and Elliott would not be able to celebrate with their family.
But they would celebrate. Where there’s a will there’s a way, right? Right.
Sarah solved the problem by planning to hold her own service in the eleventh floor’s waiting room, the only room on 11 with a table. I was trying to shift a pain-ridden Valerie into a more comfortable position when Sarah mentioned her project. “I’ll go home, pack a bag of holiday things and return to the hospital.” Without looking up, I said, “Great,” and put another pillow cautiously behind Val’s shoulders.
Monday morning, after her night at home, Sarah was back at the hospital carrying paper bags bursting with stuff. I was curious but she didn’t explain what she was doing—clear payback for my earlier disinterest.
Toward the end of the day, Elliott and Sarah invited the three of us, Valerie, Ed and me, to join in the makeshift service. We piled a wheelchair high with pillows and blankets to help Val sit up and wheeled her into the waiting room.
When we were settled, Elliott, attached to his IV pole, followed his mother into the room.
At once, Sarah began to arrange items on the scratched and worn-looking table placed in front of a sofa. Over the years, troubled family members would sit gingerly on its edge, eat on it and prop their weary feet on top of it. It was an awful-looking, wobbly-legged, pitted, wooden rectangle but when Sarah was finished with it that table was simply splendid.
My new friend had covered it with a sparkling white, lace-bordered tablecloth. On top of that, she placed tall white candles in two freshly-polished silver candlesticks, and surrounding them, an ornate silver Kiddush cup, a bottle of kosher red wine–how did that get into the hospital?–and symbolizing the wish for a sweet new year, a dish of honey next to a plate of thinly-sliced apples.
Several other Jewish parents and their hospitalized children joined us and we all waited patiently as Sarah whispered last-minute instructions to her son.
At sundown, Elliott, tall and gaunt in his brown-checked pajamas, got up from his chair and stood next to Sarah at the magically transformed table. Standing in front of the newly lit candles, her manner regal, Sarah covered her eyes with both hands and recited the blessings that welcomed in the holiday:
Barukh atah Adonai, Eloheinu, melekh ha’olam asher kidishanu b’mitz’votav v’tzivanu l’had’lik neir shel yom tov. Amein.
Blessed are you, Lord, our God, sovereign of the universe Who has sanctified us with His commandments and commanded us to light the candles of Rosh Hashanah. Amen.
Then, eyes on her son, Sarah moved back a few steps. With one hand, Elliott clutched his IV pole. With the other, he raised high the wine-filled Kiddush cup ushering in Rosh Hashanah and began to chant the traditional Hebrew prayer over the wine:
Barukh atah Adonai, Eloheinu, melekh ha’olam borei p’ri hagafen. Amein
Blessed are you, Lord, our God, sovereign of the universe Who creates the fruit of the vine. Amen
Only Elliott’s gentle young voice was heard.
I looked around the room, saw Valerie enthralled by Elliott’s solemn bearing, saw my husband’s teary eyes, saw Sarah standing with her back straight, her head high, the pride in her son visible to all.
And behind us, I noticed that many more people had come in from every part of the hospital—young patients, their parents, nurses, doctors, Jews and non-Jews—crowding into an antiquated hospital lounge to hear this young boy honor his faith.
Ignoring all religious, racial and class boundaries, those of us in the waiting room that night were transformed into a rare community based on love though beset by heartache. Together, we celebrated the rite of Rosh Hashanah.
Editor: Edwin C. Goldstein