Posted By on December 1, 2016

  • My Faith My Way (2016/09/01)
  • The Grief that Howls (2016/11/01)
  • Cancer: Emperor of All Maladies (2015/11/15)
  • Kids, Cars, and the Unpredictability of Life (2011/02/02)

FIGHTING BACK: One Mother’s Story–Chapter Fifteen

Posted By on December 4, 2017

Val was home: the lung surgery behind us; the stress of her hospital stay over; the Jewish holidays ended. But I continued to brood over the ‘remove the lung’ discussion with Dr. Wolff.

Although Valerie’s right leg was amputated above the knee one and one-half years ago to stop the spread of her cancer, it spread anyway. It began with the initial biopsy in December 1969, then the amputation in January 1973, next came the lower right lung in April 1974, and, months after that, to the rest of that lung, in other words, her entire right lung. I could not get my mind away from the horror of it and agonized over our decisions. She now has only one lung and one leg. MyGod. We had no choice, I know. But what do we do now?

When the pediatric surgeon removed the rest of Val’s right lung, he began with an incision that signaled the enormity of the operation. The scar’s size and shape was hidden until the bandages came off just before discharge. It started in the middle front of her narrow chest, scooped down under her arm, around to her back, and up past her right shoulder blade forming a giant U.

My bouncy little eight-year-old recovered but in slow motion. The three-day stay in the ICU included intravenous lines and drainage tubes sprouting from her small body; she screamed when long needles were inserted into her chest to draw out the buildup of fluid; and the sharp surgical pain brought on tears that caused more pain. Ohmygod! What is happening to my daughter? Suzann took over telling me that all of this had to be done, but even she couldn’t stop the bewilderment, the agony that was surrounding us. The misery  . . .

Although Val’s energy soon revived and eased the immediate effects of surgical trauma, the rest of the healing took longer than usual. I followed in her labored path, my psychic state disrupted although not by the surgeon’s knife.

Right after the diagnosis of Ewing’s sarcoma in 1970, I began to hyperventilate at night when it was quiet and time for sleep. I could no longer bear the dark. I solved the problem at bedtime by reading with a book light until the words were unrecognizable and my eyes almost closed. During the day I’d have rapid heartbeats. However, if I was busy taking care of Valerie, trying to pay attention to Stacy or doing a multitude of household chores I felt fine, reasonably fine anyway. Tired, but okay.

Ed was tired, too, but otherwise seemed symptomless. We talked about facts—chemo, side effects, medical appointments—but rarely about emotions and never about fear. This is wrong. We have to talk about these things. I need the comfort of knowing that he understands, to hear him say it out loud. To have him acknowledge that he’s scared too, that he feels the same sense of isolation that I feel. We both feel that, don’t we? But I can’t talk to him. Suzann wants to know why not? But I had no good answer.

So my husband reacted to his younger daughter’s illness by working harder than ever in the business although we both strained to keep our little family upbeat.

Valerie, looking pale and scrawny, settled back into her bedroom and re-established her place on the floor in front of the den’s TV. But she was uncommonly cranky and without her usual spirit. Most telling, she was not interested in playing with our new dog, Buster. Once fully recuperated, though, I expected Val’s sprightly self to return.

Stacy, my charming and mild-tempered ten-year-old, would return in her entirety too. Unfortunately, that persona had vanished. Merely for the moment, I hoped. In its place was an unfamiliar youngster who appeared anxious and slightly to be honest, more than slightly hostile. Oh boy. I do love her but all those tears and that attitude of hers is driving me nutty.

Much as I hated to admit it, an atmosphere that was usually warm and loving now jangled with the voices of two kids fighting, crying and complaining, sometimes all at the same time. Over and over I heard, “I don’t want to.” “She won’t move,” “Give it to me, it’s mine,” or, “She started it,” I need to stay calm. StaycalmStaycalmStaycalm.

Still, my voice shrill, I’d say, “Stacy, stop that immediately or you’ll be sent to your room without dinner. You know she’s not feeling well!”

Of course she knows that but send her to her room without dinner? When have I ever done that? I’d then change course and yell. “Just go to your room, Stacy,”

“I will,” Stacy shouted. “And I’m not coming out ever again!” I thought that sounded good.

Punishment had become erratic. I became erratic. Only when I felt extraordinarily pushed did I forget that one of my delicious kids was sick. While I knew they were both reacting to the physical and emotional shifts brought about by long-term illness, the shrill noises emerging from their mouths would briefly white-out any sensible analysis of their behavior and I would say between gritted teeth for what seemed to me the umpteenth time, “Go to your rooms immediately. Both of you!”

Harder to deal with than the crankiness, though, was the nonstop worry about a cure. We called Ed’s cousin Irv, a cardiologist in California, for guidance. He spoke, for a second time, to his medical colleagues but uncovered no new information for us.


Ed scoured the newspapers for anything that sounded applicable. One visit, he brought Dr. Wolff an article headlining a miraculous  new cure for Ewing’s that was discovered in Japan. Ed read the headline in the National Enquirer while checking out at Shop-Rite. Dr. Wolff called the company in Japan and then politely told us it was not relevant. Thank goodness he was nice about it. I’d have punched him if he sneered.

I called different oncologists: “What else can be done? How do we stop it? What about other treatments?” Over and over, I was told to stay with Wolff, that he was at the top of his field, that he knew what he was doing. The results: Valerie remained Wolff’s patient.

Before the next course of chemo was due, Ed again mentioned Cindy, his customer’s daughter. Cindy was diagnosed when she was seven with osteosarcoma, the most common of bone cancers. She had been treated at Memorial Sloan Kettering but her last batch of X-rays showed that her body was filled with tumors. Cindy’s parents were told to take her home and make her as comfortable as possible. Her doctors could do no more for her.

Then, Ed told me a little about Dr. Andrew Ivy and Krebiozen which was an unapproved cancer drug given intramuscularly. This time he was persistent. “Let’s go see her, speak to her family, get the whole story. I know her father, Eric Levinson, very well. I can call him. He says his daughter is healthy. We’ve got nothing to lose.” Suzann said, in a matter-of-fact tone, “Let’s go.”

I was now afraid of everything. I had never heard of Krebiozen: afraid to add one more thing to Val’s course of medications; afraid that it might backfire and harm her; afraid that Dr. Wolff would drop her as a patient if he found out. Yet I went anyway. If there was any chance that the drug might work . . .         

Our housekeeper Erin, stayed with the girls the following Saturday, her day off, so that Ed and I could meet with the Levinsons who, we discovered, were more than ready to discuss their daughter’s illness with us. And, fortunately for them, Cindy’s grandfather was a pediatrician. When he heard the prognosis, he began to search the medical literature for anything that might slow the progression of his granddaughter’s disease.

The grandfather soon found Krebiozen, an unproved but highly touted anticancer agent and its promoter, Dr. Andrew Ivy, who lived in Chicago.

Krebiozen, supposedly made from the blood of horses inoculated with a bacterial organism (Actinomyces bovis) was introduced to Dr. Ivy by Dr. Steven Durovic, a Yugoslavian doctor newly arrived in the United States. In Chicago, Dr. Ivy and one of his associates tested the controversial substance on themselves and confirmed it as nontoxic. Since Dr. Ivy was renowned in scientific circles, Cindy’s grandfather flew to Chicago, met with him, asked many medical questions and came back home with a six-month supply of the drug.

The pediatrician grandfather started Cindy on a regimen of daily injections and after six months brought her back to the New York oncologists who had originally sent her home with a prognosis of ‘three more months.’ A complete set of bone X-rays and a CT scan were taken. No tumors were found anywhere in Cindy’s body.

The oncologists and radiologists were amazed and pronounced Cindy in good health because of a spontaneous remission. Grandpa said, “You sent her home six months ago diagnosed with osteosarcoma without any treatment, without hope. I’ve been giving her daily injections of Krebiozen since then, and you tell me “spontaneous remission?” The doctors repeated, “ .  .  . spontaneous remission.”

Grandpa and Cindy went back to New Jersey. He continued giving her Krebiozen. Grandpa said he didn’t know when to stop. That would be fine with me.

Cindy herself raised our expectations further. Her father walked us across the street to their swim club and we spotted her immediately, her bathing suit wet from a recent swim in the pool. Cindy was an above-the-knee amputee like Valerie and swung smoothly and speedily on her crutches, just like Valerie. And Cindy was bright and sparkly just as Valerie was, and would be again. Ed asked them how to get in touch with Dr. Ivy.

That Sunday morning Ed and I spoke to our local pediatrician, Dr. Sol Cohen, and asked him what he knew about Krebiozen. Dr. Cohen said the drug seemed harmless and it won’t interact with the chemotherapy Dr. Wolff would prescribe for Valerie when she recuperated from her surgery. And, possibly, it might help.

We decided to give Krebiozen to Valerie ourselves since it was unlikely that a medical professional would inject the drug.

But Ed couldn’t give the injection; he just couldn’t do it. He apologized to me but . . . “I just can’t do it, Sue.” “Well, who’s going to do it?” I said. “No doctor will. You know that, Ed.” He just looked at me. “Fine. I’ll do it,” How am I going to do this? Ed can’t. I doubt if I can. OhGod.

The thought of giving my daughter the injection unnerved me and sent me off on another round of crazy questions. Who’s going to show me how? She was so thin. What if I missed the muscle and hit . . . what? Bone? GoodGod.  But what could I hit on an arm or leg that would be dangerous? Probably nothing. Probably?

Dr. Cohen was a good and kind man and would teach me how to give the injection. He also promised that he wouldn’t say anything to Dr. Wolff. Thank you, Dr. Cohen. I’m so grateful. Wolff will drop us if he finds out. I know he will. Krebiozen is so unorthodox. He’ll think we’re nuts, that we’re jeopardizing Val’s life . . . are we?

That afternoon, Ed called Dr. Ivy’s office, spoke to his associate, and made a date to fly to Chicago. At Ivy’s lab, Ed gave a donation of one hundred dollars, picked up a three-month supply of Krebiozen and flew home.

And there I was, facing all those vials and needles for the first time when along came a vicious cramp in my stomach—where did that come from? Huhh. The cramp passed and after making sure I had what I needed, I convinced myself I was ready.

I called Valerie. “Hi hon, it’s injection time. Let’s go,” I said, enthusiastically. And I did it. Val didn’t cry too much and I was grateful I didn’t hurt her, too much. It was the same from then on.

I laid out the sterile paraphernalia on clean paper toweling—the syringe, an alcohol pad, the vial of Krebiozen, a needle to insert into the vial, a Band-Aid—I’d lift Val up and sit her on top of the bathroom vanity next to our sink. First, I demanded a kiss, landing one or two on her cheeks, nose, and on the top of her head. Then I hunted for an injection site until I found an area of flesh that suited me. I cleaned the site with the alcohol pad and allowed it to dry. Then I injected the needle straight down in a dart-like motion and pushed the plunger in. Ohboy! I put a bandage over the puncture, demanded another kiss or two and brought Val down from the vanity.

With time, I became reasonably adept at it. I do believe, though, that I dreaded those injections more than Valerie did.

In fact, Valerie seemed proud of my new expertise. So proud, in fact, that at our next appointment with Dr. Wolff in mid-July, my daughter, who seldom talked to him, said in a haughty voice, “My mommy gives me injections, too.” NO NO! Oh, Val. Gee whiz. Please! Don’t say that again. I couldn’t look at Dr. Wolff as he prepared the chemo. Take a deep breath, Sue. Get your heart beating again. This is idiotic. Why are we so afraid of him? All we’re doing is trying to help our daughter. Will he stop treating her if he knows about the Krebiozen? Of course not. No?

Perhaps the doctor didn’t hear Valerie or maybe he just didn’t want to respond. Did Dr. Cohen tell him even though he said he wouldn’t? I don’t know but, somehow, I think Wolff knew about the Krebiozen and chose not to make an issue of it. In any case, he said nothing. Valerie didn’t bother mentioning my medical skills again.

I continued to give Val her daily Krebiozen despite the various hard and lumpy injection-battered spots on her upper arms and thighs. On occasion I hurt her. She cried but forgave me instantly although I couldn’t forgive myself.  Yet I resented Ed’s inability to share the burden with me. What am I doing? What if this is . . . what if . . . could this be the absolutely wrong thing to do?

The next appointment with Dr. Wolff was in September, two months after her first daily shot of Krebiozen and one month into the new semi-monthly chemo. Val had been complaining, once again, about her leg, this time her left leg. Ed and I both knew something was wrong but not sure what it could be. After all, it was her good leg.

A bone scan was scheduled and we headed straight to X-ray with Val close beside us. A while later, the scan taken, Ed and I paced back and forth in the hospital’s downstairs reception area waiting for the results. Val was in the small room next door finger painting.

The doctor soon came out and walked back with us into his office. It was an unusual thing for him to do and we knew it.

The scan showed a shadow on her left leg. Her good leg. Her only leg.

A biopsy was scheduled; another metastatic tumor was confirmed.

I had given Val an injection with a substance that was useless. My confidence in Krebiozen gone, my part in those injections came to an end. Still, I worried about Ed’s reaction. He was so sure that it would work. I laid my hand on his cheek. “Eddie, if you think the Krebiozen should be continued, you’ll have to give her the injections yourself, please. I can’t do it anymore, honey. It’ll be up to you.”

“I can’t do it either, Sue. I just can’t,” he said. We never discussed it again. Valerie wasn’t Cindy. And so our daughter received no more Krebiozen.

Yet I wondered about Cindy. How was she? Will she marry? Will she have children? Will she remain tumor-free? I would never know.


Editor: Edwin C. Goldstein

FIGHTING BACK: One Mother’s Story–chapter 14

Posted By on November 20, 2017

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.

A Right Lung

“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.

A Rosh Hashanah Table

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

FIGHTING BACK: One Mother’s Story–chapter 13

Posted By on November 6, 2017

The months passed peacefully or, at least, relatively so. Ed, Val and I would go back to Babies Hospital every three months for Valerie’s oncology checkups. That was always a bit of an upheaval as that trip had us all on edge. But Valerie was seven by then and maturing. Somewhat behind emotionally but the nurse psychiatrist said that was normal for a young child with cancer.

Valerie bounced around on her prosthetic leg as if it were flesh and blood and as long there were no shots she didn’t mind the trip into New York. Once Dr. Wolff’s exam was over she’d run to the little room next to his office to watch television while we adults talked.

This time, though, something was different. I didn’t like the way Wolff looked when he brought Val down from the examining table. He walked to his desk, a frown on his face, and finally said, “The X-rays that you took earlier today showed something in her right lung. I’d like Valerie to take a few more X-rays. Here’s the prescription. Go upstairs and take them before you leave Babies today and I’ll call you with the results.”

I hadn’t noticed anything. What was he talking about? She seemed fine: no unusual fatigue or coughing. Nothing! What was the problem? Wolff never minced words—wouldn’t be so terrible if he did on occasion—so something was wrong.

We had Val’s X-rays taken, drove home and anxiously waited for his call. When it came, we were told that Valerie’s bone cancer had spread to the right lung; a small lesion was found on the part called the lower or basal lobe and that the lobe had to be removed surgically or the cancer would continue to spread. My hand shook as I hung up the phone. Ohmygod, my poor little girl.

More tests were taken. The Ewing’s was nowhere else, thank goodness. Surgery was scheduled yet again.

Cancer, Again!

We prepared Val as best we could the day before. It was not our finest hour, I’m afraid. Ed and I were unable to present the surgery in a way that would be comforting to our seven-year-old or for her nine-year-old sister, Stacy. We did the best we could. Val cried. Stacy ran off to her bedroom. Ed and I held our little daughter tight. It was simply awful. As usual.

The day of surgery came and we were relegated once more to the lobby’s waiting room—it had not changed. As we had learned from our past experiences, the anticipation was dreadful and so, my mind, in an attempt to avoid thinking about the surgery focused on sleeping over with Val.

What did the staff do before we parents were allowed to stay over with our children? How did they manage? All the running around that we did, that all the moms did day and night, for the bedpans, the cold juices, the clean gowns and, yet, I remember clearly what they told me almost five years ago, “Parents can’t stay overnight. They would be in the way and the children would be too hard to manage.” Sure. Rethink that, nurses, why don’t you!

At last Dr. Corona, the pediatric thoracic surgeon, appeared in the waiting room doorway. We hurried toward him. “Valerie is out of surgery. She’s fine and is now up on nine in the ICU,” he said. “You can go up and see her for a short period of time or until the nurses tell you to leave.” How is that possible—she’s fine and in the ICU? My nerves have gone into overtime; I’m close to tears here. What are they doing to my daughter? What are we doing?

Ed grabbed my hand and the two of us rushed to the elevator and up to the ninth floor only to be told, once we were there, that we had to wait until the doctors finished rounds.

We stayed with Valerie for the rest of that day depending, of course, on the nursing staff. Val was very pale and attached to all kinds of monitors and IV’s. She cried when she saw us and wouldn’t let go of my hand until she fell asleep and we had to leave.

Valerie seemed to sleep a lot which meant that we had to leave her a lot. “That’s typical, Mrs. Goldstein. She’s fine,” one nurse said. I heard that again and again.

After dinner, when Ed left to go home to Stacy, I remained with Valerie—when the nurses let me. When she slept, I was forced to go up to the eleventh floor waiting room to try and relax on one of the sofas. I wanted to be with her throughout the night and had pleaded with the nurses to let me stay but the ICU staff was rigid. I was allowed in only when my daughter was awake but when she fell asleep I had to leave. No exceptions.

Valerie tried not to cry—crying hurt—but she wasn’t very successful. So, it was with relief on both our parts when after two days in the ICU the monitors were removed and Valerie was brought up to the eleventh floor. Strange, isn’t it, the things I’m grateful for?

Valerie was more comfortable on eleven and we passed the days, when she wasn’t sleeping, playing the card game, GO FISH, or I would read to her. Ed joined us after work, stopping first at the cafeteria to buy dinner for the two of us: Valerie ate the hospital food when she ate at all.

Ed now slept over as well and we alternated nights since one of us had to be with Stacy. At Babies, one or the other of us dozed in an old, lumpy club chair pushed close as possible to Val’s bed.

We had only one car in New York—Ed’s. We left my car at home since I was at the hospital most of the time. One of Ed’s two brothers would drive me back to New Jersey so I could be with my older daughter and attempt to make up for lost time. I’d often get home late, around ten p.m., but that would have to do. Time is driving me crazy; no, I’m driving me crazy. What’s the better way? Tel me that!

It had become routine to rush home from the hospital, tuck Stacy into bed if she wasn’t already asleep and send her off to school the next morning with a huge hug and several dozen kisses.

Valerie’s cancer had become a race between the precious moments stolen from one child and given to the other. Nobody won.

Since I was there most of the time, the hospital schedule did give me scattered periods of socializing. Friendships blossomed but were often short-lived though intense and rarely forgotten. One lovely couple, whose daughter, hospitalized for observation, spent an overnight in the room with Valerie and left their portable TV set for Val to use. We had their address but they never asked for our telephone number or where we lived; they simply trusted us to get it back to them when Val was discharged. Ed returned the set as soon as we got home to New Jersey.

And then there was Caroline. Unfortunate Caroline. She was fourteen years old and in the room to the right of us. Caroline was hospitalized at Babies with countless seizures of unknown origin and her doctors were stumped.

Passing each other in the hallway Elaine, Caroline’s mother, and I began to nod and volunteer troubled smiles—happy smiles were rare in that hospital. A few times later, we moved on to “How are you today?” “Just terrific,” one of us would answer, “and you?” Soon, with grins covering sadness, our hospital friendship was launched.

Elaine wore high heels all day long, was overly made-up and had shoulder length, bleached blond, immaculately-groomed hair. She dressed as if she were going out to dinner instead of shlumping around the hospital’s 11th floor.

Differences existed. I wore green, rubber-soled clogs with black wool socks, blue jeans and Macy’s cotton turtlenecks. The color of my turtlenecks changed daily to deflect attention, hopefully, from the absence of any makeup. My hair was short, dark and neat. Most of the time.

She worked. I did not.

Well, granted, I did work, but at home as the bookkeeper in our family business. That didn’t count in the outside world or to me since salary was not an option. Am I becoming too focused on the salary part? Maybe. Who cares?

There were other differences as well. Although I had relocated to New Jersey once Ed and I married I was born and raised in Connecticut, a New England Yankee through and through. Elaine, in contrast, was a true New Yorker, accent and all and, more recently, a resident of Yonkers.

Nonetheless, the hospital environment and our daughters’ health pushed the differences aside. “We’re going home Saturday and I can’t wait,” I said, one day. “I hate this place.” Elaine nodded, looking morose and said, “Well, we’ll be here for a while longer. I sit in the room most of the day and count Caroline’s seizures. She seems to have a million a day but the doctors can’t find the cause.” I didn’t know who to feel sorrier for, Elaine, Caroline, Valerie or me.

In the hush of the late hospital nights I would doze in the chair next to Val’s bed and, in between naps, my mind would spin with worries about my daughter and her well-being. On occasion, I’d think of Elaine. She, too, was probably in a chair next to Caroline’s bed dozing in spurts and worrying, just as I did.

My thoughts also focused on Elaine’s spectacular appearance. Like the other moms staying with their hospitalized children, she paced the eleventh floor at all hours, running errands dictated by her child. Unlike the other moms, however, she seemed a worldly sophisticate in sexy four-inch heels and jazzy outfits.

And that bouffant hairdo! Poufy and flipped at the ends, Elaine’s hair was always perfectly combed. How did she do it? “Why do you look so good all the time?” I demanded one night as we passed each other. She shrugged. While I had resolved to look good at all times for Valerie, I was no match for Elaine. At the end of the day, I felt like a wreck and looked it. Most of the floor moms looked even worse. But Elaine? She remained a beauty.

The Wig!

Early one morning, before Val woke up, I peeked into Caroline’s room to see how she had weathered the last few nighttime hours and saw a white Styrofoam form vaguely shaped like a human head. It sat regally under the window on the gray marble ledge used for everything imaginable: food, books, games. And, resting on top of that Styrofoam form was a bright blond, neatly coiffed, flip-ended wig.

Haggard-looking, eyes red-rimmed and with matted, reddish-brown hair, Elaine, minus her make-up and elaborate clothing, stood next to Caroline’s bed a rumpled blanket in her hands. Seeing me at the door, she grinned, wiggled her shoulders and said, “Surprise! It’s plain old me, in all my unadorned splendor.” And for one stunning instant, my eyes beheld Elaine looking like every other mom on eleven. Sonofagun!

As the days passed, I learned more about her, her wig only a momentary glitch. Elaine had one child, Caroline. She said, “I also own, board and train large dogs in a kennel near my home.” I knew she worked but owner of a dog kennel? This over-the-top clotheshorse with her spike heels and glossy make-up? Inconceivable.

The more I knew about Elaine, though, the more I liked her.

“How do you do it,” I said, “Take care of your daughter and manage a dog kennel, all at the same time? Sounds like a lot.”

But her daughter’s illness, in fact, left no time for managing the business, properly. During one of our talks, she mentioned a nine-month-old puppy named Buster, a multicolored Shih Tzu. A small dog, he lived with all large ones, a rather uncomfortable arrangement for the fancy, nine-pound purebred. Still, Buster was strong and holding his own.

Then, one day, Elaine said, “Sue, do you have any pets at home?” “No,” I said happily, “none, zip, not one, no dogs, cats, gerbils, fish, or anything but humans at home.”

Quickly seizing the chance to fill a pet gap in my family, she walked into Val’s room and told her about the puppy, letting my daughter know that Buster was ours if we were interested.your house away from the big bullying dogs and, Valerie, you and Stacy would have a wonderful new buddy.” According to Elaine, it was the perfect solution to an unfortunate problem.

Elaine also acknowledged, off-handedly, that Buster’s tongue was quite long. It didn’t fit well in his mouth. As a matter of fact, it hung out. All the time. She rounded out the discussion by ignoring any further questions and said, “He would be a gift from me to you.”

Valerie was beside herself. She grabbed my hand. “Please, Mommy. Please, please, pleeeeese.” Mommy, mum for too long, was suddenly aware that the situation had become critical. Ignoring my scowl, Val picked up the bedside phone, called Stacy and soon, joyous sounds filled the antiseptic air.

Could I refuse Elaine’s offer? You bet! “What?” I said. On guard at last, I shook my head vigorously back and forth. Trying to slow my racing heart and struggling to keep from shouting, I emphasized, “No, I can’t handle it. A dog? God, no. Thanks anyway, Elaine. Sorry, Valerie, but no, honey. We can’t.”

They overrode my protests easily, all four of them: Valerie, Stacy, Ed, and Elaine. Val and Stacy were delirious. Ed was pleased that his daughters were happy. As was Elaine. “Buster is saved,” she chortled.

“But you don’t like animals, Ed. No animals–Not one,” I protested. My darling husband Ed was not an animal lover of any sort. What happened? Well. He just couldn’t resist catering to his girls.

“Okay, okay,” I said. “We’ll come get him when Valerie’s recuperated.”

“Oh, don’t worry about that, hon,” Elaine cooed. “You told me that Val’ll be discharged on Saturday. My husband will bring Buster to the hospital Saturday morning and drop him off at your car; he and Ed can make the arrangements. You all can go home together. It’ll save you the trip to Yonkers.” Yikes!

Buster in His New Coat

The Shih Tzu, a breed unknown to me just a few short days before, was ours. Without further debate, Ed, Val, and I drove back to New Jersey with a newly-shorn Buster who shivered, whimpered and cowered in the back seat of our car for the entire trip home. To my surprise, Val was no longer interested in him. She was still too miserable from the lung surgery.

And, with that thought in mind, I continued to worry about my child and the Ewing’s that didn’t seem to go away. Once she’s home, I said to myself, she’ll eat better, relax and get her strength back. She’ll be fine.

Okay, okay. I’ll take care of my sick child as well as my healthy child, my husband, my house, my work. Did I miss anything? Oh, yes, and this poor, forlorn creature. Why does he look so miserable? Why does his tongue stick out like that? Hope nothing’s wrong with him. He is kind of cute.

Yes. It was that quick.

For the fourth time in my life, I fell in love counting one husband, two kids and now a sorry-looking purebred who promptly became an indispensable member of our household despite his dangling tongue and the never-before-stated, but definitely benighted, bathroom manners.

“I don’t remember being told he wasn’t housebroken. At nine months? Val, Ed, do you remember Elaine saying anything about that?” Neither one answered me. OK, guys. If that’s the way you want it.

But never mind all that. Valerie recuperated just fine from lung surgery and the cancer seemed to be gone. On a separate note, Buster—now beautifully long-haired for the moment, with a tongue that stuck out and the house-broken part of him never repaired—had become an integral and loving member of the Goldstein clan.


FIGHTING BACK: One Mother’s Story-Chapter Twelve

Posted By on October 16, 2017

A pleasant calm prevailed after we moved into our new home. Valerie’s prosthesis became simply another fact of life and all but disappeared from our everyday vision and conversation. I took care of the house, cooked, did the bookkeeping. Ed sold kitchen cabinets and sundry items and the new office, recently located outside the house, was only eight minutes away. We both watched out for the girls; they went to school, fought a bit and complained about the inevitable doctors’ appointments. And we took our regular Sunday trips again. It felt normal.

Play Dates!

The choices were up to Stacy and Val: The Turtleback Zoo in New Jersey, The Museum of Natural History in New York, maybe an afternoon spent with friends who had children: I must admit that the latter, the play dates, usually won out. We did take, on occasion, long drives through the countryside, play “I spy” in the car and, at the end of the day, search for child-friendly restaurants. Or we’d simply stay home and play games.

For example, we played front-yard softball with the four of us divided into two teams. Stacy and Mommy were the ‘Sam I Ams’ versus Valerie and Daddy’s the ‘Cats in the Hats.’ One Sunday, first inning: Valerie was at bat, Daddy was on deck, Stacy was in the outfield and Mommy was the pitcher. “OK, batter,” I said to Val. “Time to strike you out! Here it comes.” I wound up for my slow pitch blooper, threw and hit Val’s flesh and blood thigh. OhmyGod! Batter Val cried hysterically. Pitcher Mom dissolved. Game called because of injury. Both teams were dropped from the league. End of front-yard softball for the Goldsteins.

We moved on to our driveway’s asphalt basketball court. The girls were excited. It was the first time for both. “Throw the basketball to me, Mommy,” hollered Stacy. I did. She dropped it. Ed now had the ball and bounced it to Val. She laughed like a loon, caught it, dropped it, then caught it again and held on, running around wildly with the ball in her hands. But Val didn’t look where she was going. She fell on the asphalt, the ball bounced away, her good knee started bleeding and stormy tears, again, fell. “Yuch,” said her sister.

Obviously, driveway basketball didn’t work for the kids any better than front-yard softball; from then on both games were limited to adults only. Ed and I were resigned; it was back to the card and board games at our kitchen table.

Meanwhile, Valerie, our darling little girl, was doing wonderfully. And all was well. Almost.

One day after school, the bus deposited the children a few houses down the street as usual. Standing at the kitchen window, I saw Valerie talking to our next-door neighbor, Norma. Good. Val’s home. Stacy was running up our driveway. Okay, Great. She’s home, too. They were both where I could see them, unscathed from a day in academia. Or so I thought.

Stacy burst into the house, her face flushed and contorted with tears. “Mommy, the kids at school are calling Valerie Pinocchio! They are so mean!” I hugged Stacy tight and, before long, the tears abated.

After my big girl quieted down, we talked about bird-brained children and empty-headed adults. “It’s hard to ignore certain comments, Stacy, but I think that, most of the time, it’s the best way.” And so I told her about a stranger at the supermarket who once asked loudly, “What happened to that poor little girl’s leg?” pointing in our direction to Valerie who, at the time, was still on crutches.

“I thought it was stupid of that woman to ask about Val’s leg in that way and in such ear-splitting fashion, but it was done. She said it and couldn’t take it back even if she wanted to. So I turned Val away from the woman and we moved on. I don’t want you to fight with anyone, Stacy. But if it’s unavoidable, just say what you think is best.” She looked skeptical but seemed relieved.

Later, my angry hindsight suggested I should have left out the ‘don’t fight’ part. Let her fight; she might have felt better. But my ultra-sensitive eight-year-old had turned the problem over to a higher authority and feeling more comfortable grabbed a cookie and went into the den. The no-eating-outside-the-kitchen rule was dispensed with for the afternoon.

I should have expected the name-calling. While in the hospital Val came up against ill children and their parents, staring first at her ‘little leg’ when she was on her crutches and then at her prosthesis. And I remembered that, shortly after Val’s prosthesis was fitted, she and I took a walk up our street. Across the way was a young boy, a neighbor’s son. He spotted us and with a big grin on his face, shouted out, “Hi, old wooden leg.” I shouted right back, “Stop it, Jimmy. That’s not nice. You should know better.” Bending toward Val, I said, “Just ignore him, honey.” Should have kept your mouth shut, Sue, or just told Valerie what a jerk that kid was!

And now, Pinocchio.

The contradiction between my behavior and my advice hovered in the air. Valerie, walking close by my side held tight to my hand; she was quiet. I began speed-talking about a movie we could go to over the weekend. It was her choice, I told her.

Nasty Kids!

Val never said a word to me about that incident. Maybe she forgot about it, too young to retain those kinds of hurts. Or, more likely, she held them all inside. I’m sure there were more such episodes but I didn’t hear about them.

But what to say to her about today, this Pinocchio hurt? I waited for Valerie to come into the house, willing my mind to come up with something that would lighten her burden.

Although Val usually ran right in to give me a hug, gab about school and ask for something to drink or eat, that afternoon she dawdled outside. After a while, when she did come in, I caught hold of her, sat down and pulled her onto my lap. “Valerie,” I said, “kids sometimes are not nice, just like adults. You know how I get annoyed with Aunt Phyliss or Aunt Isa and some of my other friends? Kids are like that, too. They say things that they may not really mean but they hurt anyway.” And I talked about kids calling other kids names, the typical stuff that parents lecture their children about: kids don’t realize that they may be hurting someone; kids think name-calling is clever; their parents hadn’t taught them properly; blah, blah, blah.

Val didn’t say anything. She leaned back against my chest looking down at her hands while I talked. When done, I rested my chin on her head, held her close for a while longer and then let go. I sat quietly, not moving, as Valerie slid from my lap and walked away, leaving behind another view of what sadness looked like in a child.

Still sitting on the kitchen chair, I squeezed my eyes shut, thought about Pinocchio and the good times that were often dominated by the bad, shook my head hard and then imagined our upcoming vacation.

“Stacy, Val, listen up you guys,” I called out. “Don’t forget. In two weeks, we’ll be going to Puerto Rico. We’ll have such a good time! Anybody want some more cookies?” Maybe I’ll have a cookie, too.

Puerto Rico!

Thinking about the buoyant waters of the Caribbean and the bright warmth of the sun pacified me somewhat. We four would have fun and we’d forget little kids saying nasty things.

The shadow dogging our footsteps was, for the moment, brushed aside.


Editor: Edwin C. Goldstein

FIGHTING BACK: One Mother’s Story–Chapter Eleven

Posted By on October 6, 2017

Related image

 Sell or Continue Building?

The big question for me? Should we continue building in Warren after Valerie’s amputation or should we sell the half-finished house and remain in North Plainfield? The stressors kept building. We did have the option of selling. One couple drove by the Warren site in a fancy car and offered us a great price.

“Let’s sell,” I said. “No,” said Ed. “The ranch house will be a new start for us. It’ll be better for Val—a shallower, carpeted staircase for going downstairs to the rec room; that’ll be so much easier for her to maneuver—she’ll love it. And Stacy will love it, too.”

“Fine,” said I, too tired to argue.

I began to pick out antique white bricks for the front porch, old red bricks for the den fireplace wall, some dark color for the roofing shingles—didn’t care about them—and gray siding. The list went on. Ed brought home the samples at night after his workday was over—two or three each at the most—and I chose the ones I wanted. It turned out to be the easiest way to build. No waffling. Just quick decisions after the two children were in bed.

Ed had the harder part. He drove to Warren every day at six a.m. since he was the general contractor for the job. His extensive experience at E & S Sales came in handy and saved us lots of money! Ed checked the work that had been finished the day before, swept up ahead of the crew arriving in the morning—the first and last time I noticed him fussy about neatness—went off to work at E & S, and at the end of the day would go back to check on what had been done. Would he sweep up before going home at night too? Maybe. He loved that construction site!

When I had time, I’d go with Val to the new house to see what was happening. She wasn’t back at school yet because the prosthesis hadn’t been finished. We’d walk carefully around the new house and I would show Val, on her crutches, what had been done that day.

“Look, Val, the windows are in. Aren’t they great?” Or,

“Val, this is your bedroom and that one next to it is Stacy’s. What do you think?”

“I love my room, Mommy. Can I have a desk?”

“Of course you can, sweetie. You’ll both have one.”

The Mason

One day, we walked into the den to look at the brick wall with its beautiful fireplace and saw the mason. He was working behind the wall, the part between the red bricks and the garage, and was half done. What an odd sight watching him work behind that half-finished wall!

The next time we went to the house, the den’s brick wall was finished and looked lovely. But where was the mason? Still behind the wall? Enclosed forever behind that wall? Hmmm.

Moving day came one early morning in August 1973. Val had her prosthesis at that point and I had signed them up for the July and August season at Hi Hills Day Camp in Warren. I thought it would be easier to get everything out of the bi-level and into our new home with both of them out of the way.

I woke Val first. It took her longer to get dressed because of the artificial limb, and then went in to wake Stacy.

“Mommy, my throat hurts,” she said. Oy vay. I took her temperature; it was 102°. I panicked and hustled my daughter over to the pediatrician. “Sue,” he said, “she can’t go to camp today. It doesn’t look like strep but it’s bad. Put her on this antibiotic and keep her at home.” Oh, no!     

I called Isa. She was one of my best friends and lived nearby. I loved her. I said, “Take Stacy for the day. Put her to bed. Just until we get into the new house. Pleeeeease, Isa!” Isa did.

Valerie went off to camp as planned with a warning not to kick anyone. Did she? Perhaps. She got away with murder at camp. At the end of the day the bus would drop her off at our new home in Warren.

Meanwhile, the truckers had loaded almost everything onto their truck. The North Plainfield house was empty except for Stacy’s bed: Stacy was still in it, poor thing. When the truckers were ready, I bundled my sick girl up and took her over to Isa’s. And Ed and I were off to Warren and our new home!



We worked hard at the house—Ed’s many time-outs for business calls that day didn’t count. We put everything away, and made the children’s rooms as perfect as possible. Eventually, my husband drove over to Isa’s, thanked her gratefully and brought Stacy to our new home. The medicine had begun to work and she felt better. After camp, Valerie was dropped off  in Warren. Her excitement knew no bounds. Stacy was a bit calmer, still not feeling fine, but excited nonetheless.

Before I could think about dinner, however, the Warren house inspector arrived. He told us we couldn’t stay in the house since we didn’t have a Certificate of Occupancy. Ohmygod. Can’t stay in North Plainfield and not allowed  to stay in Warren? Ed began to make calls; he needed to get a Certificate of Occupancy by the following morning.

We spent that night at Motel 22, a few miles from our new house. It was a passable room with two double beds. The girls wanted to sleep together and I said okay but, “Behave!” They promised they would. Soon Stacy started tickling Val, Val started giggling and without another word we separated them. I slept with Stacy and Ed slept with Val. It was a moving experience.

Morning came and we rushed to get back to our new home with its official Certificate of Occupancy. The house was beautiful but all the landscaping was mud. I kept a close eye on Val, afraid she might fall. She didn’t. She had acclimated well to the prosthesis. Mommy hadn’t. Not then anyway.

Once in the house, Valerie turned to me, “Mommy, where are my crutches?” Oh, boy. Her crutches. Where were they? I looked around and finally said, “Val, I think we left them at the motel.” My tough little kid immediately started crying as if her heart would break. Her reaction startled me. It was not like her but Ed drove right back to the motel. “Hurry up,” I said. “Val needs her crutches. Right now!” Valerie looked sad until the crutches were returned to her.

And that morning, I learned something else about my littlest child. There were items she counted on in a desperate sort of way and crutches was one of them. I’ll find out about the others in time. I know that. But right now, she had her crutches, was wearing her prosthesis and all was well.

We adored our new home. The girls would be fine, and Ed and I would calm down. So I hoped.


FIGHTING BACK: One Mother’s Story–Chapter Ten

Posted By on September 19, 2017

Two days after the surgery that removed her right leg above the knee a physical therapist came into the hospital room to show Val how to use crutches. She could have saved the trip. Squirming around a bit, my six-year-old waited for her to finish, then put the crutches under her arms and took off out of the room without a backward glance. Both therapist and Mommy started hollering. “Val, come back, slow down, you’ll fall.” My heart was in my mouth. NO, my heart had stopped all together.

The Whiz Kid!

Obviously, the lessons were not needed. She was terrific, my little girl.

A week after the surgery, though—to be exact, the morning of her discharge—my upbeat little girl moped around the hospital room. I was packing up her few clothes and many toys when Valerie climbed onto the bed, her face in a pout that was an instant short of tears.

“Can’t we stay here longer, Mommy, just a little longer? I don’t want to go home.” I wasn’t surprised at her reaction. I didn’t want to leave either and had agonized, silently, about how to clean the many stitches, how to apply the medicated salve, how to re-bandage the wound and how to ensure the healing. Her little leg—called a stump or residual leg by the professionals—required tender and expert care. The nurse showed me how but, for me, it was unnerving.

Babies Hospital had become a safe haven for both of us. I was the adult and couldn’t voice my fears. But Valerie did. She was afraid to leave what had become for both of us our refuge from the outside world. But why was Val frightened? Doctors and therapists had explained the prosthetic leg to her. I thought they did a good job.

I had said to her,“Oh, Valerie, sweetheart. It’ll be easier than the crutches the physical therapy lady taught you to use and that was very easy, wasn’t it? Just you wait. Once you get your new leg, you’ll be running as fast as the other kids.” We all talked that way. Did we overdue it about a new leg?

What did Val believe? That it would look like a real leg? Feel and act like a real leg? I remember only that I struggled over the week to understand what she was thinking, especially about issues as complex as amputations and prosthetics. I never gave a thought to the language, the words, we actually used.

In the end, though, I believed that something happened in the hospital playroom. She liked going by herself and one of the nurses from our floor would drop her off. At those times, I stayed behind in the room and waited for her return. Had someone in the playroom been hurtful? Was that what worried her? Other children’s reactions to her amputated leg?

I started watching facial expressions. Walking the eleventh floor of Babies with Val beside me on her crutches, I began to see the reaction on the faces of the other small patients. They stared. Their parents stared, too. What about the children and the adults in the outside world? Would they stare as well? Did Val believe they would?

I sat next to her on the bed, put my arm around her and said, “After the stitches heal, hon, you’ll get your new leg.” There I go again. Next time, I’ll say prosthetic or artificial leg. Will she understand that better? I went on, “You’ll play as much as you like. Your own comfy room, your toys, and especially Stacy, are all waiting for you at home. Your friends are there, too, but I know, you’d rather go back to school and work hard. There won’t be any time for TV. You’ll just do HomeworkHomeworkHomework, eat fish and veggies and then you”ll go right to bed.” My delicious little girl giggled.

“Ohhhhhh, Mommy!”

“Ohhhhhh, Valerie!”

And whatever it was disappeared from sight.

Stacy and I talked again after that awful night after Val’s surgery when she alternately cried and screamed at me. “Stacy, I love you, and I understood that Val’s amputation has been a shock to you. That was our fault; we should have told you before. I’m so sorry, sweetheart. Please forgive us.” She accepted that Ed and I never mentioned cancer. We simply talked about bad cells. And Stacy understood, I thought, that amputation was the only way to get rid of them.

I spoke to my older daughter at least twice a day while Val and I were in the hospital. Val, too, spoke to her but Stacy didn’t visit. She didn’t want to and we didn’t force her.

When the three of us were finally ready to leave the hospital and drive back to New Jersey our daughter charged ahead on her crutches, recklessly swinging her little body through the stuffy institutional air. Hand in hand, Ed and I hurried behind her as she raced toward the elevators and the rest of her life.

Once we pulled the car into our garage in North Plainfield, Val grabbed her crutches and awkwardly rushed out. Stacy was there waiting for her little sister. In her hands was a new toy, a mechanical pen and pencil set, which she held out to Val. Then Stacy walked her sister slowly—more slowly than warranted, I admit—into the house. Valerie was thrilled to have Stacy’s undivided attention.

Ed and I were over another hurdle.

My attempt at doctoring was successful, the surgical wound was healed and, shortly afterwards, Valerie was introduced to the prosthetist in East Orange. She seemed calm about the process, no overt behavior on her part one way or the other. She wasn’t excited; she wasn’t depressed; she was matter-of-fact. Both girls were. Suzann says we’re resilient. But I knew that!

Over a series of visits, Val was fitted with her first artificial leg, a flesh-colored prosthesis. The devise was in two pieces and shaped like a leg except for the foot; although formed like a foot the toes, only, were suggested by thinly etched lines.

Val’s Little Leg

The two pieces were connected by a leather hinge that substituted for the knee joint. The top section of the prosthesis was cone-shaped and hollowed out to fit over what remained of Val’s thigh–her little leg. A wide leather belt wrapped around her waist and kept the whole contraption secure. It looked uncomfortable but Valerie didn’t complain and showed no hesitation in using it.

Stacy examined the prosthesis thoroughly and pronounced it fit for her little sister to use.

We all catered to her. Stacy, usually possessive of her belongings, generously handed over some of her most cherished toys. “Here Val, play with this. No, no. You can have it.” Valerie graciously accepted.

Ed and I followed Val around, waiting to catch her in case she slipped and fell. That didn’t happen. She was as steady on the prosthesis as if it were her own flesh and blood.

But something had happened; Valerie had been transformed into royalty. “Mommy, turn the channel, please.” She was perfectly capable of getting up and walking or hopping three feet to the TV yet I ran to turn the channel. Or “Mommy, I can’t make my bed. I’m too tired.” Mommy said, “That’s okay, honey. I’ll make it.”

Valerie didn’t object to this above-standard behavior but soon Stacy did. “Ma! Let Val do it,” eventually brought forth a hissing sound from my throat. But, of course, Stacy was right. She would shake her head in disgust at her sister’s opportunistic nature and her parent’s fawning.

Val’s ability to move around with ease increased exponentially. For instance, early in rehab, when asked by a doctor to walk slowly down a hallway at Kessler Institute, the rehab facility in West Orange, my lively daughter ran but now in a new way that followed her for the remainder of her life.

The prosthesis, fitting snugly over Valerie’s little leg, was propelled by her thigh in a thrusting motion. With a kick, Val drove the prosthesis forward, hit the ground with it, and then, with a roll to the left, pushed off on her good leg. It got her where she wanted to go and it got her there fast. That new leg turned Valerie into a meteoric marvel.

The rehab sessions were brief but she was bored anyway. Newly skilled in manipulating both the crutches and the prosthesis, Val’s world-weary attitude ended with the promise of lunch at McDonald’s.

Our learning curve was slower than Val’s but we did learn. Val was our patient coach and taught us, among other things, that being brave and having fun were not mutually exclusive. Apparently, the worries that surfaced at Babies had disappeared or gone into hiding.

Over time, we breathed easier as Val swung on her crutches like a pint-sized gymnast: we smiled at the clumping sound it made when she ran; we shrugged at her methods to negotiate the stairs, either a rear-end slide-bump process or a precarious hop up or down. This last was hair-raising. She never looked where she was going.

It was all a challenge to the hidden barriers facing an amputee. It was also because her name was Valerie.



FIGHTING BACK: One Mother’s Story–Chapter Nine

Posted By on August 21, 2017

One week after our talk with Dr. Wolff about Val’s amputation, we were back in the hospital. Surgery was scheduled for the next morning.

The children had been told only that Valerie had to stay at Babies for a few days. Ed said, “The bad cells in your leg aren’t completely gone, sweetheart. You need more treatment.” Val’s tears came immediately. Stacy turned to me and patting her little sister’s back asked that perennial question, “Why, Mommy?”

“She’ll be fine, Stacy,” I said, “Her leg just needs more treatment.” She was puzzled, and worse, disheartened as her world turned upside down once more.

The Cancer’s Back

At the hospital the night before Val’s operation, Dr. Dorn, the orthopedic surgeon who would do the amputation, told me he’d like to talk to his patient without me in the room. “It would be better,” the doctor counseled, if he spoke to her about the surgery. “Just the two of us,” he said. “She’ll be angry with me, Mrs. Goldstein, not you.” I listened to him. He was the expert.

I slipped out of the room but lingered close to the open doorway. Ed was down the hall at the nurses’ station.

I knew Val wouldn’t be angry with me, wouldn’t blame me for the amputation. I didn’t worry about that. I worried, instead, about me. How would I handle it? I’ve never been up close to an amputated leg before, never knew anything about it. Ohgod. What would I do? No one had told us what to do . . . we weren’t told anything! I was afloat, cast away from all that I understood, all that I knew about motherhood.

What do I really know about it? About my mother? I wanted her, to talk to her, to ask her what to do, how to handle this. How could I have ever forgotten what she was like, what she had said to me, what she meant to me?

I felt as if I were coming apart, surrounded by darkness, danger, impermanence. Oh, stop being so histrionic, Sue, said Suzann. It’s not you that it’s happening to, it’s Valerie. You need to help her, take care of her. And you will.

My poor baby. Would she wonder why I left her hospital room? And why had I? I simply obeyed the doctor. I should have held her close while Dr. Dorn explained the surgery. Would Val understand what he said without me beside her? Exactly how was a little kid supposed to comprehend what was so incomprehensible to an adult?

I worried, then, about Ed. Since I’d be at the hospital with Val, he would be the one to explain the surgery to Stacy. She was a bright youngster yet . . . What would he tell her? What would she think?

Poor Ed. Not only would he talk to Stacy about the amputation, he’d have to phone my dad, his siblings, his mom. Ed would do that by himself, making all the calls, contending with the distress of others as well as his own. At least I’d be with Val, holding on to her, comforting her, helping her cope with the pain and the shock. I looked down at my two good legs. Godallmighty. Interrupting my thoughts, Dr. Dorn appeared at my side saying, “See you tomorrow.” He didn’t say a word about his discussion with Valerie. And I didn’t ask. What’s wrong with me?

In a hurry, the good doctor rushed away but not before Ed, moving toward me, called out, “Get a good night’s sleep, doctor.” There was no humor in my husband’s voice. The doctor, head down, continued walking but said loud enough for us to hear, “I will.”

I wondered, on a different note, did Ed worry about what he’d say to Stacy? Probably, but we didn’t discuss it. So many things not to discuss! And I knew that it wasn’t right, but what to do? It wasn’t that we didn’t love each other. We did. It was more simply . . . avoidance. He avoided and I followed suit.

Back in Valerie’s room Ed and I sat down, one parent on either side of her bed. I laid my hand against my daughter’s cheek and asked, “How was your talk with the doctor, pussy cat?”

“Okay,” she said. “Mommy, will you change the channel?” I reached over her bed to grab the remote, glancing sideways at Ed at the same time. He was just as stymied by Val’s response as I was. Did she know what was to come? My husband made no comment and I didn’t push for more conversation. Maybe Val would say something about the surgery after she had absorbed the doctor’s words.

The loudspeaker announced that visiting hours were over but Ed and I stayed much longer. Everything was in place for Valerie. The TV was on, Snoopy was in bed beside her and the nurses promised to look in on her frequently. They assured me they would do that each of the many times I asked. At last, after countless irate looks from the floor staff, we kissed and hugged Val goodnight and told her we’d be back early the next morning.

Ed and I threw more kisses to her on our way out of the room, competing to see whose flying smooches would be the loudest. Valerie managed a lopsided smile and a small wave.

We couldn’t look at each other, but we held hands walking toward the elevator. It was our way. Holding hands. Holding tight. Keeping close despite the emotional upheavals, reminding us that we were not as isolated as we felt. We had each other.

I didn’t cry. I didn’t sleep either. As I often did, I lay in bed wondering where we were headed. Now, the same questions kept coming back: what would happen to my wonderful children, to my husband, to me? All the questions that didn’t have answers.

The next morning, Ed and I were back at Babies. Valerie was groggy from the pre-surgical meds, and when an attendant pulled her bed from the hospital room she barely noticed. The IV pole and a surgical nurse took up one side of the bed. On the opposite side Ed gripped Val’s ankle while I held her hand. Neither one of us could let go. “Mrs. Goldstein, we have to take her in now. Please, say goodbye to her. Mr. Goldstein? You’ll be told when she’s back in her room. She’ll be okay. She’s a trouper.”

Great. She’s a trouper. So what? Will that protect her? Keep her safe during the operation and afterwards? Guess what, Dr. Dorn, I’m the angry one here.

We headed down to the main waiting room at the end of the hospital’s large lobby. I had hated it since our first visit there three years earlier. Hate. What an awful word. I use it too much.

Long and narrow, the waiting room was shabbier than ever and the lamplight appeared gloomier. While eyes turned away easily in the waiting room, the sounds were heard clearly: someone crying in the back of the room; a voice whispering indistinctly near the doorway, the panic pronounced; or the discord of a lightning-like discussion in an unfamiliar language. Of course, we also heard the silence, a foreboding silence.

Conversation eventually developed. A nod of the head, a grimace, a tentative smile broke the ice. Simple questions and more complex answers sometimes followed. A young mother began, “How old is your child? Is it a girl or a boy?” A father responded, “My son is ten. He has a hole in his heart. He can’t play ball like the other kids. The doctors are operating to try to close it.”

A shy, older woman, after a long pause said, “My daughter’s leg has to be fixed. She broke it when she fell off a horse. I told my husband I didn’t want her to ride but he wouldn’t listen to me. Anyway, it healed wrong and now the surgeons are trying to correct it. I’m not certain how. I don’t understand what they’re doing. They talk too fast.”

Neither Ed nor I chimed in. But we listened, paid attention to the pitch, accent and agitation of the families and shared in their pain.

Intermittently, a doctor would appear and interrupt the murmur of conversation, or the silence, and beckon to one or two parents, a sister or a grandmother who would then leave the room hastily to be seen no more. It was no surprise: hospital waiting rooms witnessed the briefest of relationships.

Ed and I sat, our eyes fixed on the doorway, impatient for Dr. Dorn to materialize. Two and one-half hours later, when he did, we searched his face for signs that all was well with Valerie. Greeting us with a raised hand, the doctor said that the surgery was over and she was fine. Valerie would be upstairs in her room in about two hours. He’d look in on her in the afternoon.

Grateful that she was okay after the operation, I leaned back against the sofa, relieved but then wondered what the next few days, or months, would bring. Is the cancer gone now that her leg is? Will she be able to handle the crutches, the prosthesis? She was so little. I wondered, mutely to Suzann, Did we do the right thing?

True to the doctor’s word, Val was back on the eleventh floor by ten a.m. Ed and I were exhausted. Not Valerie. She was wide awake, in pain and waiting impatiently for us. Her thigh was heavily bandaged, raised atop several large pillows and covered by a sheet pulled up to her chest. The sheet prevented us from looking at what was no longer there.

Ed and I never talked about how we’d feel at the first glimpse of Valerie’s truncated limb. But then, we rarely discussed anything about feelings. Furthermore, we hadn’t discussed what we’d say to her or what she might say to us, but we’d soon find out. That’s how we did things. Not good, I thought. And I’d get so mad at Ed, at me—at the world! But before I got too carried away with my angst Val’s pain had to be controlled.

I pushed the call button, and before Val could fret again a nurse walked into the room with a hypodermic needle, administered a pain killer through the IV in her arm and walked out. Valerie whimpered half-heartedly but fell asleep within minutes. The rest of the day dragged by in similar fashion. She’d wake up, want something to drink, I’d give her a little ice, caress her arm, she’d fuss a little and fall back to sleep. I’d get up from time to time and nervously walk around the room. Pace, more like it.

Ed and I also took turns slouching against a nearby wall or sitting in an armless vinyl chair squeezed in between Val’s bed and a large dingy window. For dinner, while Val slept, we ate, or rather picked at, sandwiches from the cafeteria. Our makeshift table was the window’s twelve-inch marble sill. That sill, when it wasn’t a dining table held books, a few games, iced tea and Mallomars. The Goldsteins had moved back in.

Ed, his face drawn, left shortly after eating. At home, he would tell Stacy of the operation her sister had endured that morning. I had no idea how he would approach that or how she would respond. But he and I were partners who split a lot of the family and business chores, whatever they were—whether we talked about them or not.

Oh, My Poor Stacy

A few hours after Ed left, a nurse poked her head into the room. “Mrs. Goldstein, you have a phone call. I think it’s your husband.” I glanced at Val, fast asleep from the pain killers and tiptoed out to the hall.

The one public telephone across from the elevators was on a narrow wall connecting an office and the parents’ waiting room. Not a good place for lengthy or private conversations. The black receiver was dangling on its cord. I reached down and picked it up. It was Ed; he sounded rattled, on edge. “How’s Val? Has she awakened yet? Has she talked at all?” Then he said, “Oh, Sue, Stacy’s pretty upset. I told her about the amputation, said Val had to have her leg removed because of the bad cells. But she wants to speak to you. I don’t know how to calm her.” Before I could answer, I heard him say, “Here’s Mommy, hon.”

All at once, Stacy was on the phone shouting, “Mommy, how could you let them do that to Valerie? Why? She has only one leg now. How will she run or play?” I took a deep breath, trying to prepare for a calm, thoughtful response, but Stacy wasn’t finished. “What does it look like, Mommy? How can I look at it? Does it hurt her? Mommy, why?” Out of questions, Stacy suddenly stopped. She could no longer vent her alarm and cry at the same time.

I was stunned by the onslaught. I had assumed there might be confusion or an inability to understand all the issues. But my children had proven me wrong in the past. This was another of those times. Stacy had grasped what Ed had told her and instantly pictured the plight our family faced. Her young voice articulated the questions her tongue-tied parents had resisted.

I stammered a reply. “Stacy, sweetheart. We had no choice. The doctors told us that we had to amputate. We should have told you before . . . let you get accustomed to the idea, be there with you.” And how does she get accustomed to that, Sue, said Suzann? “I know that now. I’m so sorry.” I talked to her for a while but did no better than her father. I needed to end the call and get back to Valerie. “I love you, honey bun. I love you so much. I’ll speak to you tomorrow. Put Daddy back on the phone. I love you.” Over and over, I told her I loved her. Ed came back on the line. “I’m so sorry, Sue. I didn’t think she’d scream like that. She’s so upset.” “It’s okay, Eddie,” I said. “It’s okay. We’ll both take care of her. Tomorrow. You take care of her tonight.”

Did I soothe Stacy? What could I, should I, have said to her? What would my mother have said? I had no idea. I only knew that Stacy, as well as the rest of us, would be feeling the repercussions of Val’s illness forever.

And I thought to myself, could I comfort my loved ones, could I encourage them to walk along new paths, paths strewn with good things to come? There would be bumps, naturally, but wasn’t that my job, to smooth the way? Of course it’s my job but—can I do it?

I hung up the phone and ran back to Val’s room, unable to do much besides stare at her and then look out the darkened window. I spent the night on high alert, sitting in the vinyl chair close to the bed, a pillow behind my back, a blue hospital blanket over my legs.

I awakened in the morning, when first light broke through the window, stood up, stretched and sat back down to continue watching over my daughter. I worried about her pain though I was confident the nurses would take care of that. More worrisome to me was her reaction to the surgery. I would be the one to respond to that: to her questions, her bewilderment, her fright. My mind was in a muddle trying to concoct various scenarios, to work through them and to come up with just the right way to explain to my little girl what had happened to her.

Valerie woke a short while later as a nurse was adjusting her IV. Animated and seemingly without pain, my daughter threw me a beam of her personal sunshine. Smiling, she said, “Hi, Mommy.” “Hi, my little pussy cat,” I smiled in return. “Know what, Mommy? The doctor told me he was going to operate and take away my whole leg. But he didn’t. He left me a little leg!”

What? A little leg? What is she talking about? Ohmygod. Her thigh. Did she awaken in the middle of the night and look? How?

But it didn’t matter. Only that I was proven wrong once again. I grinned, my eyes burnt with unspent tears. With Val’s hand on my arm, she raised her right thigh—her little leg!—and introduced me, once more, to her own resilient, very magical, slant on life.


FIGHTING BACK: One Mother’s Story–Chapter Eight

Posted By on August 7, 2017

Our New Home!

Valerie and her radiation-damaged leg needed a new home. Her limp was worsening and our North Plainfield bi-level had two sets of stairs. Each time Val went downstairs to play in the rec room, I had to trust to the gods that she wouldn’t trip. We needed a house with fewer or no steps.

In addition, our North Plainfield home had taken more than enough hits. After each stormy rainfall, the lovely diminutive brook bordering our backyard turned into a raging river, overflowed its banks and filled our downstairs with sludgy water. I saw our garbage pail plus several cartons of books from the garage floating in the street during the last storm.

At any rate, we were finally done with our bi-level and sold it knowing that the Army Corps of Engineers was, at long last, about to deepen the brook. I felt a sad little twitch, though, when I said goodbye for the last time. It was a bright sunny day in August with no stormy weather to ruin the picture.

We purchased a beautiful lot, began construction and the girls personalized the spot by picking out small rocks, writing their names on them and throwing the rocks into the foundation hole. “Mommy, I want to throw another one in. Can I?” said Val. “Of course, Valerie. Throw as many as you want.” Then Stacy asked, “Can I too, Mom?”
“You both can, kids. Go to it!” Ed and I both said in unison.

The first step in building our ranch home had begun.

Our house was partially framed when Valerie’s leg became problematic again. She was six years old. The new house excitement disappeared.

Her cancer had been nowhere in sight for one year. But now, her voice thickening with tears, Valerie said, “It hurts, Mommy,” and she touched the biopsy scar centered on her lower right leg. I pulled her onto my lap and kissed the top of her head. “Let’s see if I can make it better, sweetheart.”

Gingerly stroking the sore spot, I imagined the cause was any of a short list of common Val woes: maybe she had been at a friend’s house and banged her leg or she fell in school and didn’t tell me. I refused to consider anything more serious. It’s nothing. The leg is just sensitive. Suzann concurred.

A few days passed and Val complained again, the tears now spilling down her cheeks. Denial out the window, I called Dr. Wolff at Babies Hospital. He said he would order hospital-based tests for Valerie later that morning to give us time to get into New York. Wolff would see her in the afternoon. I called Ed at work and told him about our last-minute appointment. It would be a rush and we’d have to wait a bit before we saw him . . . but we could do it.

Grateful that Stacy had already left for school and her ‘why’ questions temporarily avoided, I quickly gathered snacks, a few books and a deck of cards—Val loved Go Fish. Those few things taken care of, I began to move restlessly through the house picking up a set of jacks from the living room floor, straightening bedspreads and marking the moments till Ed came home.

Valerie, already bundled into her winter clothes, was outside fiddling with her three-wheeler when my husband beeped his arrival. It was time to go. Unusually testy, Val pushed Ed’s hands away and crawled into her car seat without the normal boost. “I can do it myself, Daddy,” she said.

The car radio was tuned to a soft pop station, but with our thoughts on the diagnostic testing to come, neither Ed nor I listened. We knew the routine facing us and considered ourselves professionals wise to the medical system as well as to our daughter’s needs. But our attempts to smooth the way for her were often ignored.

Test Tubes With Drawn Blood

A case in point: I’d say to a lab technician, “It’s easier to draw blood from her left arm. Please, don’t even bother with the right one, the veins there don’t work anymore and, please, don’t do the hand. That hurts too much.”

“The right one has a real good vein, ma’am. We’ll try that first,” one of the technicians would say.

While they generally stayed away from her hands, Val’s right arm was punctured over and over until she’d start to cry, shouting “NO. NO. NO.” Only then did they switch to the left arm.

In much the same way, many doctors relied on their text books rather than on a mother’s knowledge of her youngster. “The chemo gives her diarrhea,” I’d tell them over and over, each time with more emphasis, “It doesn’t constipate her like it does most kids.” Nevertheless, one specialist or another would insist on continuing Colace, the medicine to relieve constipation.

Those thoughts were soon pushed aside as Valerie began to deliver a dramatic reading of her favorite book, Berenstain’s ‘The Bear Detectives and The Case of the Missing Pumpkin’. “O.K. thief! You’ve munched your last. Your pumpkin stealing days are past,” barked Val. Huge grins lit our faces as we listened to her noisy child’s voice.

An hour later, at Babies, Ed and I took Val for a bone scan and chest X-ray. Following that, we went to the lab for a variety of blood tests. Afterwards, we headed to the drab and stuffy cafeteria for lunch, the highlight of Valerie’s day even though she was a rotten eater.

She made her choices at the wide, glass-enclosed counters, took her time, thought hard and without fail ordered a carton of chocolate milk and a tuna fish sandwich on white bread. She’d stand on tiptoes and craning her neck would tell the servers behind the counter, “No lettuce or tomato, please.” She never wavered and never finished the milk or the sandwich. “I’m full, Mommy.” That day was no exception.

After lunch, Ed and I each held a small hand and went to see Dr. Wolff. Val, our little leader, pulled us toward the physicians’ reception area, a large room filled with wooden chairs and some tables. I knew she sensed something was wrong. How could she not?

Ed walked hurriedly, his eyes shifting back and forth, head forward and down, shoulders thrust upward toward his chin. Okay, said Suzann. No help there. Don’t let Val see you upset. Clutching her hand tightly, I struggled to loosen the muscles that always clenched before we saw the oncologist.

At last, in his office, we watched as the doctor lifted Valerie to the examining table. He rested a large meaty hand on her shin, his fingers covering the biopsy site. “Feel how warm it is,” Dr. Wolff said, looking at me. I put my hand delicately on the shallow two-inch groove between her right knee and ankle and lightly rubbed back and forth. Except I didn’t want to feel the warmth. I knew what it meant. We’d been through this before when Valerie first started falling three arduous years ago.

It had been one year, exactly, since the doctors had used the word ‘remission’.

Bringing her down from the table, Dr. Wolff touched Val on the head and sent her into the small playroom next to his office to watch TV. The familiar part of our day was over. We had returned, once more, to frightened parents status: that is, parents of children with cancer waiting for the unknown.

Without saying a word, Dr. Wolff walked to his desk and sat down. We trailed him there, taking our accustomed places on the other side of the desk and sat in the two wooden armchairs that seemed to be waiting just for us. He picked up some X-rays, looked at them, looked at us and came right to the point. “The tumor has recurred but is apparently nowhere else in Val’s body, only in the right leg.” He sighed, and then continued, “After a few more tests, we’ll know, and the reports will confirm, that the best way to treat it is to amputate.”

“What?” I was certain I hadn’t heard him. “What did you say, doctor?”

Looking from Ed to Dr. Wolff and back to Ed, I saw my husband’s eyes close. He was quiet. Then, eyes open, he said the word that I didn’t want repeated. “Amputate?” Ed said.

Ed leaned forward as if to hear the doctor better. “Yes,” Wolff said. “I believe that’s the only way to treat the recurrence. Ewing’s, as you know, has a poor survival rate—about ten percent. If we catch it in the beginning, then we have a pretty good chance of beating it.” Wolff then read aloud from different parts of the reports making sure we were clear about the results.

“I’ll call with the final details. Go home, wait for my phone call, talk it over and then you’ll tell me your decision.” Wolff offered no more information and we could think of nothing more to say.

Shortly afterwards, with Val asleep in the back of the car, Ed and I settled into the drive home. “I know what I heard,” I muttered, clearly not sure at all about what I had heard. I turned to check on Valerie, her body slumped against the arm of her car seat.

“Well, you heard wrong.” Ed’s voice was low and belligerent, his eyes locked on the road ahead.

“My hearing is fine,” I said. “Wolff said to go home and discuss it. So maybe, just maybe, there are other possibilities.”

“There aren’t. He said the leg has to be amputated.”

“She’s only six,” I said. “There must be another way.”

“There isn’t. We have no choice.”

“I can’t believe this is happening. Eddie. What are we going to tell her?” Ed didn’t respond. Okay, Eddie. We won’t talk about it. We’ll continue to hide.

Although Ed rarely spoke about the emotional issues surrounding Val’s cancer, he was vocal about the facts surrounding her oncology visits. These ranged from disjointed to nasty. We seldom agreed about what Dr. Wolff said or didn’t say.

One memorable exchange a while back revolved around Colace. “Wolff said that Val should take Colace,” informed Ed, as if it were a brand-new idea.” I told him, “Valerie had diarrhea after each chemo, not constipation. The Colace was a waste of time. And I don’t think she needs any more meds in her little body.”

“Are you a doctor?” Ed said, raising his voice. “Do you know what’s best for her?”

“I’m her mother,” I shouted. “Who knows her best? Not you. You’re downstairs in your office all the time.” Ignoring my comment, he said, “What are you talking about? If Wolff said give it to her, you give it to her!” I walked away, affronted that he would question me.

But I believed that we each blamed the other as proxy for the tumor that threatened our daughter. Beyond reason, Ed and I would take turns trading edgy retorts, circling wildly, going nowhere. After a while, I’d stop responding.

Sometimes, though, we had a comforting check-up with no nervous or disagreeable aftermath. Val was doing well and both Dr. Wolff, Ed and I were in agreement. The medical tests were all negative and on those days, the doctor seemed less dour than usual. Pleased with the visit, I chattered all the way home.

I’d say, “Let’s have Chinese tonight. We’ll take the kids and go to the restaurant that’s upstairs over the cleaners. What’s the name again, honey? I don’t remember. But the kids love it.” And Ed would say, “Sure.” Although he never chattered, he did smile more.

Valerie was now a year past her six weeks of radiation and two years of chemotherapy. Free of all the side effects, she looked marvelously rosy-cheeked. She was back in school full-time with absences only for a few childhood problems: nothing uncommon, nothing scary.

Happy in first grade, Valerie had play dates with her friends from school and children in the neighborhood. Stacy had her family back, was pleased with her third-grade teacher and loved her swimming lessons and pottery classes. She too seemed happy. Ed and I moved back into our tennis games and twelve months breezed by like a puff of wind. Although shadowed by the ongoing fear of recurrence, life had returned to normal.

Until that day when we were brought face to face with the need to remove our younger daughter’s right leg.

But first, on the way back from New York, Ed and I had to get Stacy from Phyllis’s home. My guilt popped up as I thought about how often we left our older daughter with friends or family during those two long years of Val’s treatment. Yet it was all part of the cancer package we had to deal with.

And now, we were going to do that again, this time with an amputation added to the mix. All the time I spent away from Stacy when Val was being treated, and after each injection when she was so sick, did my older daughter feel abandoned? Will she feel that way again? Does she hate me? Stop it, said Suzann.

Back in New Jersey, Ed parked our car in front of Phyllis’s house. He turned and unstrapped Valerie from the car seat and we both sat back to watch her newest version of running.

Val’s radiated right leg, shorter than the left, forced an energetic but ungainly blending of limp and skip. Bouncing up the porch steps, she pressed her finger to the doorbell. They were waiting for us: Stacy, Phyllis, her husband Don and sons, Johnny and Alan.


The four children raced upstairs to play as the adults moved into the family room. I stared out the window while Ed, his voice steady, recounted, most likely, the next course of treatment. I can’t remember Phyllis or Don’s reaction. I know I didn’t, couldn’t, listen to the discussion. I walked over to their bookcase and counted all the books I had yet to read.

Soon after, we left with our two girls and headed home. On the way, Ed reached out to hold my hand, our rancor forgotten and, secure in his grip, I imagined that all four of us were space travelers rocketing away to a distant planet, never to return. For the moment, I felt free . . .

Back home, Ed called Isa. He told her what Wolff had said. They spoke for a while. Ed answered Isa’s questions—she was as shocked as Phyllis and Don had been. My husband was ready to hang up when she mentioned a doctor in Texas who had operated on a different type of cancer in the bone of another friend’s arm. The doctor was highly regarded. He was kind yet very efficient. His patient’s cancer was evidently gone.

“Call if you want, Sue. Here’s the phone number,” Ed said, after he hung up. He was very tired. Weary might be the better word. Words. One word can mean so many different things: Bored. Sleepy. Drained. That’s it . . . Poor Ed. He’s just drained. As well as weary.

I understood that Wolff would have talked to all the specialists; I knew he had poured over the tests again and again. But I had to hear someone else’s professional opinion. I wanted something miraculous, something totally different from what I had already heard. I wanted to hear “Mrs. Goldstein, Valerie doesn’t need her leg amputated. She simply needs lots of warm hugs and kisses and a bit of physical therapy.” Not impossible . . . ?

I had to dial the number several times. My finger didn’t seem to work well. I took a deep breath, slowed down and finally got it right. I spoke to Dr. Lightman’s receptionist in Houston, Texas. After I told her why I needed to talk to the doctor, she told me to hold on, that she’d get him. No time wasted, he picked up the phone. The speed with which Dr. Lightman did that was much appreciated. “Stay with Wolff,” he said. “I know his reputation. He’s a terrific doctor, the best around. Let him amputate, Mrs. Goldstein. And the sooner the better.” I told Ed. He nodded, rubbed his eyes and went downstairs to work.

That night, I thought about how sweet Valerie was, how impish she was, how she loved her older sister, how we loved her and, after next week, how she’d only have one leg.

In bed with the lights out, I tried to sleep. I couldn’t. I tried to cry. I couldn’t. The tears sat deep in my chest, unable to find their way up and out. Was that normal? I didn’t think so. My dad and my brother brought me up so I blamed it on them, and Ed, too, after that evening in the diner. Isn’t that what they say about men, that they don’t cry? I never saw my grandmother cry so I added her to the mix. What do they say about Eastern European women?

Just the same, if I cried and cried and cried, Ed would put his arms around me and say, “It’ll be all right, sweetheart. She’ll be fine. We’ll be fine.” Snap out of it, said Suzann.

What’s wrong with me? I was unable to cry and Ed was, I think, asleep or lying quietly turned away from me. I could scream though. I’d like to scream. In fact, I want to SCREAMMMM!

My family was sleeping . . . scream and wake everyone up? Of course not.




FIGHTING BACK: One Mother’s Story–Chapter Seven

Posted By on July 17, 2017

At last! After three inpatient days at Babies Hospital searching for signs of cancer and finding none, we took Valerie home. One surgical biopsy, twenty-six sessions of radiation and two years of chemotherapy were over. I believed Valerie was made whole, liberated, renewed.

“No sign of cancer,” the doctors said. “We can’t say with any certainty that Valerie’s cancer is gone, Mrs. Goldstein, that she’s cured. We just don’t know that. We can only tell you what we don’t see, that the various lab tests are now negative. She’s in remission.” There they go again, being clear as mud! But who cares? Valerie’s going home . . . no more hospital overnights! Of course, Suzann was more cautious but I didn’t listen to her.

In the beginning, I had a hard time accepting the word ‘negative’ as ‘positive’. But the specialists explained that negative was good and positive was bad. I looked up the definition in a dictionary. Positive meant optimistic or confident. That was definition number one, and my only understanding of the term. But further down the word list I saw it also meant showing the presence of disease. Okay. That’s what the docs are talking about. I fixed firmly in my mind, for all time, that positive could indeed be bad and negative good. Like Alice, I was in the middle of an insane tea party. Except I stayed there and tried working through the riddles, soon discovering that there were rarely straightforward answers.

Two years ago, when my family and I began our trek through the maze of medical science I came face to face with its language. It was pure torture to my neophyte tongue, but I learned fast. I had to. So did Ed.

For us, decoding the doctors’ medspeak suggested, at the least, that Valerie’s bone cancer was nowhere in sight. We were leaving or better yet bolting from the pediatric oncology floor and returning to our normal life in North Plainfield, New Jersey. What a sense of elation that was. All at once my second-born had been restored. I trusted that she was a healthy child once more.

I grinned uncontrollably that night and willed the hospital elevator to zoom up its shaft to us. A more restrained Ed smiled at me in agreement. Valerie, ignoring both of us, played hopscotch on the worn grayish floor. Before turning back to watch her, Ed poked my arm, “Stop jiggling, Sue. Please. You’re making me crazy.” “I feel crazy, Eddie. Don’t you?” but my tapping foot quieted. I was impatient for transport out of this unconventional and frightening universe, impatient to return to a world where I believed my girls, my husband and I were safe. Just like everyone else.

As we waited, we heard a deep male voice rumble from down the hall, “Valerie, aren’t you going to give me a hug and kiss good-bye?” It was her pediatric oncologist, Dr. Wolff. He was standing at the nurses’ station.

Arms crossed, back resting against a doorjamb, he wore, as always, a somber dark gray suit. A white shirt and forgettable tie completed the outfit. His stocky build, strong and vigorous-looking, was capped by a clean-shaven face and carbon-black hair combed thin and flat against a large head. He was as well-groomed as if the workday had just begun. He dresses like an undertaker. I can’t stand it. Wolff, brighten up!

As a rule, Dr. Wolff was reserved and undemonstrative, his professional wall raised high to the sky. But his dedication to pediatric oncology, a specialty not known for its successes, was unmistakable. Poor guy; Wolff’s no free and easy spirit. Wonder what he’s like at home?

A few weeks earlier, in his office—no injection this time—my affectionate, amiable Valerie rejected the doctor’s attempt to talk to her. “What are you coloring there, Valerie?” he said, and without looking up or saying anything, Val studiously chose crayons for her picture. I glanced at her, then at him, shrugged and plastered a wry ‘that’s kids’ smile on my face. It was obvious, though. My daughter wasn’t buying his change of behavior, not then anyway. She knew that his office was a place for painful shots and bewildering adult talk.

But at his shout that night in the hallway, Val swiveled in place and skipped toward him. An assortment of adult eyes tracked her uneven path. The bone tumor, the biopsy and subsequent radiation had all done noticeable damage to her right leg and made precarious any sudden movements on her part.

Giving her doctor a hug, she forgave him for his past deeds: those semi-monthly injections that generated throat-burning tears, the harsh taste of chemicals in her mouth and the many days of vomiting and inertia that followed. “Thanks, Valerie,” Dr. Wolff said to her back as she promptly turned and skipped back to us.

At the elevator, when its doors finally opened, Ed and I waved hastily to the doctor and staff, grabbed Valerie and dashed away.

Since late 1969 and the shock of her cancer diagnosis, Val’s daily activities and every facet of our family’s life took an impromptu leave of absence. For instance, an upset stomach after an injection was contagious; queasiness or more was a symptom most of our immediate family developed every time Val threw up. That large pot and box of tissues followed us everywhere.

Discipline softened. Who had the heart to holler or punish? If Val or Stacy, or both, were naughty, I’d send them to their rooms. It was a Mommy-ruse. The kids complained but spent the isolation time playing happily and quietly with their toys. Since I sat out the brief silence trying to relax, we all benefitted.

The fallout from Val’s illness spread to our family’s regular outings, too. Those had all but vanished. Disappointment and the accusation of “Mommy, you promised!” were familiar cries, but degree of nausea and chemo-induced bellyaches made plans for child-based entertainment erratic.

Still, the children, laughing and yelling their way through most days—when they weren’t crying or fighting—seemed to pay little mind to chemotherapy and doctors’ appointments. These were mere distractions to be dealt with as soon as possible. I followed in their raucous wake but my pace, I must admit, was less than swift.

I remember little more about those first two years except that I had become habituated to sleepless nights, stress and an irritable, stomach-churning tightness.

The days had fallen into a loose order of sorts. Ed sold his kitchen cabinets through E&S, Inc., and I took care of all things domestic and helped out in the business. Every other week we left Stacy with a babysitter and drove Valerie into New York for her chemotherapy. During those two years, Suzann handled the big stuff and Sue worried about the smaller issues.

After each injection, for example, when the side effects wore off and Val felt better, I’d begin to focus on things like her limp. She limped before the biopsy when her leg first started to bother her, and as time passed, continued to walk slightly lopsided because the growth in that leg had slowed. And that’s what I want to worry about; that’s only what I’m going to worry about, okay?

One day I phoned Dr. Gagnon, the orthopedist. “Valerie still limps, Doctor, and I worry about the future. Will her limp get worse?” His reply to me was abrupt. “Mrs. Goldstein, you have problems far more serious than Valerie’s limp.”

He stunned me with his response and cut off any further queries I might have had. I never forgot that. I never forgave him.

By asking questions that he thought were unimportant Gagnon forced me to confront the unimaginable, the thing that I hid from, the part of me that was usually protected. Suzann, my not-quite-perfect Suzann, where are you?

And I was astonished. How could Gagnon think I needed reminding about Val’s illness? Why doesn’t he have some insight? I can’t talk about Valerie’s cancer. I can’t. I’m afraid of breaking apart. I only want to think about her limp and the built-up, thickened sole the shoemaker puts on at the bottom of her right shoe. My God. He puts one on every few months! It’s an indication of how slowly her right leg is growing. That’s all I want to talk to him about. He’s her orthopedist, for crying out loud, not her oncologist. I don’t like him. I never liked him. And on top of that, I’m told not to sweat the small stuff? Oh yeah? Well, the small stuff’s easier to sweat. Tell ‘em that!

Okay. Dr. Gagnon didn’t deal well with my issues. Noticeably so. But how could he when I wasn’t dealing well with them either? I knew he wasn’t a psychiatrist or a magician for that matter. He couldn’t read my mind and didn’t have time to talk about his young patient. He was a busy man and, in retrospect, maybe my questions were a bit naive, perhaps even dumb.

Trying to rationalize away my reaction I thought, maybe, I’d gone overboard: Gagnon’s not aware of how he sounds; I’d misunderstood him. Blah, blah, blah. Still, I remained upset, my dislike for him thriving in an emotional petri dish that was mine alone. Although Ed no longer liked the orthopedist the way he once did he was not as easily undone.
Gagnon, however, not only lacked empathy, he was inflexible as well. I had just turned thirty-five, Ed was thirty-seven and our business was just a few years old. Monetary concerns soared and added to our fears. As if that were possible! To remedy that, a local doctor suggested we talk to Gagnon about reducing his bill.

Pride put aside, Ed asked him, “Is there some way you can lower your fee? We don’t have any medical insurance.” It was a hard question for him to ask, a hard question for anyone, and my husband reddened at the need for it. But Dr. Gagnon was unyielding in his finances as well as in his compassion. He gave his answer with a quick shake of his head: “You can pay the fee out monthly. That will be fine.” It’s fine for him, that creep.

So, no reduction in Gagnon’s charges and a payment struggle that lasted more than two years. Personally? I would have taken several decades. I’m angry. And I’ve turned into a nervous wreck. I rely on others to take care of Stacy and I can’t protect Val from the awful things that are happening to her. Hey, calm down. Deal with it, said Suzann.

But now, Val’s chemo and all the rest were behind us. She would have an ordinary youngster’s life again, a life brimming with kiddy issues: birthday parties, nursery school, play dates, some scrapes and tears but mostly fun and laughter. You bet! Of course, she’d have doctors’ exams, blood tests, and X-rays every few months, and that’s out of the ordinary when compared to other little kids. I knew we were not home free. But we were close. Real close.

Although I spent the next year watching Valerie limp and talking infrequently but politely to Dr. Gagnon—he was, after all, one of my daughter’s doctors—I also saw that she was putting weight back on. My child had regained her appetite. She was eating better, not great but better. And her cheeks were, once again, a soft, chubby pink, the glowing proof of her good health.

I called Phyllis. “Phyll, what are you and Don doing Saturday night? Maybe the four of us can go to a movie. It’s been way too long.” I could relax with Phyllis. She and Isa knew all about Valerie. What I knew they knew. And both of them, my two best pals, would take care of Stacy when needed. No questions asked. They both bore the brunt of my anxieties regarding Val and her sister.

That year went by quickly. Life seemed under control. Well . . .  as much as a family with two little kids can be controlled.

“Mommy,” hollered Valerie, “Stacy took my Raggedy Anne.” “Mom, I did not. She gave her to me,” Stacy hollered back, “and she can have it. Who wants her Raggedy Anne anyway!” Stacy returned—maybe threw is a better word—the doll to Val and, in three seconds, they were playing together again.

I shook my head and grinned. My girls . . .

I had rediscovered the good humor side of life. And the world was a joyful place for me and mine once more.




FIGHTING BACK: One Mother’s Story–Chapter Six

Posted By on June 19, 2017

Traffic into New York City had been bumper to bumper. I was late. Valerie, my five-year-old, was in Babies Hospital one month after her last chemo. It was January 12, 1972, the date marking the end of two long, difficult years of shock and turmoil for my small family. This time, her checkup was for a three-day stay in the hospital; the doctors wanted to make sure that no residual cancer was found in her small body.

I rushed through the hospital’s lobby, ran to the elevator and pushed the button for eleven. It was slow coming down to the lobby: then again it was always slow for me.

Finally, that snail-like elevator reached the eleventh floor and I rushed out. When Valerie caught sight of me, she pointed to the round black and white clock high up on eleven’s wall, a comic frown transforming her impish face. That clock measured time exactly the way I measured flour for baking. No mistakes allowed.

That Awful Hall Clock

The rebuke dragged on as Valerie’s foot, tapping dramatically on the drab floor, punctuated her shout. “You’re late, Mommy. Where were you? I’ve been waiting!” It was a few minutes after ten—any minute after ten, according to Valerie, meant that I was late.  Why did I ever teach her to tell time?

On that Wednesday morning Val lingered in a pink nightie with an outlandish picture of Donald Duck on the front. Faded and permanently stained with finger-paint from the hospital playroom, it was much too big for her but the down-to-the-floor nightgown was loved beyond reason. I dared not throw it away.

Her pout quickened to a giggle and bursting with nervous laughter, she ran to me. I caught her in my arms and held on tight, repeating over and over, “I’m sorrysorrysorry.”

Valerie didn’t complain about the three-day hospital stay once she was there—she was a pro at this point—but, still, misery shone from her eyes. They followed me everywhere that first night as I unpacked her favorite blanket and pillow.

Valerie’s stuffed lion had leaned cockeyed against the metal bed rail and made her hospital room seem more like home, but my little girl didn’t smile. O God. What will they find this time? Nothing! The doctors will say she’s in remission. But I believe she’s free of the Ewing’s sarcoma. Free!

Since hospital rules prevented parents from sleeping over, the night staff assumed a surrogate’s role. Some handled it better than others. A widespread belief existed though, and I for one was a believer, that the nurse in charge of your child was special, that she was a loving stand-in for the parent.

Right from the beginning of the overnight stays, when Val first got sick, friends would drive me to the hospital each morning so that Ed and I could drive home together at night. I would arrive a bit before ten o’clock and Valerie and I would then face, together, the medical staff and their varying procedures.

We spent the in-between time in Val’s room; I read to her, she watched TV and when tired of that, we played card games. In between, I followed her orders.

“Mommy, I want grape juice.”
“I want an Oreo, Mommy.
“I want Captain Crunch without milk. No milk, Mommy!”
“I want won-ton soup, Mommy, with only one won-ton.”

The soup was special, not hospital-based or homemade, and required a trip outside the hospital to a nearby Chinese restaurant. The rest of my time was spent running marathons up and down the eleventh floor collecting whatever my daughter wanted. I was not alone. The other mothers ran beside me.

Ed joined us at the end of his workday and was welcomed as member number two of Val’s private labor force. At that point, he and I took turns following Valerie’s commands. Every so often, though, when Val gave me permission, and after adding ice from the eleventh floor’s fridge to my personally-brewed iced tea, I would sit in the parents’ lounge and sigh in relative comfort. Stored in a large glass jar from home, the tea’s pale color was occasionally mistaken for a urine sample.

All too soon, though, we’d be forced to give Valerie a last hug and kiss goodnight, tuck her in and rush home to Stacy.

Leaving Val’s hospital room, Ed and I would race to our car for the hour and a half’s drive back to New Jersey. We needed to send Stacy’s various babysitters home and tuck our older daughter into bed. Listening to a brief summary of her day, I’d hug her quickly, smooth her hair, touch her cheek and try not to be too annoying. Ed gave her loud, mushy kisses and long hugs and, of course, was very annoying. We mostly made the Stacy-deadline but it was all in the timing.

Time. So precious . . . so scarce. Governed by that black and white hospital clock, it was my particular bully, confining me to boundaries shaped only by illness. Always in hurry-mode my day was a here-there affair, eternally rushing to get somewhere, anywhere, on time. I fought to beat the clock, to move faster, to advance ahead of speeding time, thinking I could somehow slow it down.

When Val was diagnosed with bone cancer, Stacy, our healthy child, was abruptly thrust into the background. It was not my intention nor my desire. I worried about Stacy when we were apart, hustled to get back to her as soon as possible and, yet, when with her, I wanted her sister.

In the wake of all that, I became marked by the belief that time, forever pictured in my mind as a round black and white clock, had to be accounted for every moment of every day.

And I wondered, will I ever be able to saunter through life again? Will I ever lose the worry that now stalks my every footstep? Will I ever find my way again?