Tag Archives: Acute Lymphoblastic Leukemia

Cancer Causes Love

26 Sep

On a recent sultry September afternoon, I watched happily as my seven year-old daughter, Isa scrambled around with other children at the park, her long, dark hair swinging across her back as she dodged the hot sun under a canopy of shady oak trees. She’s come a long way since that time five years ago when her little bald head was as smooth and hairless as a ripe honeydew melon.

Last Sunday, our family attended the annual reunion party for the Santa Barbara Cottage Hospital Pediatric Oncology Department where Isa was treated for her leukemia when she was two years old. We always look forward to going to this event because we get to see the many friends that we’ve made at the hospital, but mostly we go because sometimes we just need to be reminded of how lucky we are.

Isa, about a month before her cancer diagnosis.

Isa has now been cancer free for over five years, and so our day to day lives no longer revolve around chemo treatments, bone marrow aspirations, spinal taps or blood and platelet transfusions. No longer do I wake up in a panic in the middle of the night because my daughter is running a fever and I have to rush her to the hospital. It’s been a very long time since I had to cradle her head as she vomited from the chemo or deal with her black moods brought on by the steroids.

As time goes on it gets easier to forget that scary time in our lives. Things have returned to normal—or to whatever “normal” is. My husband and I still experience the usual day to day worry that many other married couples do—such as how to pay the bills, how to pay the bills, and how to pay the bills, but this particular worry is nothing compared with the added anxiety that our child could possibly die.  Luckily, we’re now home free and we get to cross cancer off our list.

Isa, bloated and bald after six months of chemo.

This is why I’m writing about pediatric cancer again. At the hospital reunion party I saw children of all colors and sizes—more than a few of them with bald heads, and I was reminded that there are still too many families who have yet to cross cancer off their list. I was reminded of three year-old Lexi Krasnoff, who at last year’s party, took off all of her clothes and ran naked through the park, the dome of her fuzzy head gleaming in the sun. Lexi wasn’t with us at the party this time because she died of her leukemia last February. Her parents have crossed cancer off their list, but not in the way they had prayed.

Cancer is always a very nasty thing, especially when it comes to children, and it’s always a struggle no matter what the circumstances are. Yet there is one beneficial side effect from cancer, whether your child lives or dies from this disease: It is LOVE.

During those first days when Isa was in the hospital, when I was as terrified and vulnerable as a child lost in the wilderness, I experienced a huge shift in my consciousness. I became aware that I was not all alone in this universe and that there were multitudes of people around me—hospital staff, family, friends, and even complete strangers whose love for Isa and our family enveloped us in huge bear hug and lifted us out of that all consuming darkness and fear. I was open to something I would have never known before Isa’s cancer diagnosis: the genuine connection of pure love that exists between each and every one of us.

There’s just something about a child with cancer that makes you forget that negative way of thinking—you know what I’m talking about—those feelings of judgment, resentment, envy and hate with which we’ve become so damn comfortable.

When you learn of an innocent child who’s been diagnosed with cancer, your first reaction is “That poor family! What can I do to help?”  You stop thinking of yourself for a moment and your heart opens up a little more. Your perspective on life changes and you realize how lucky you are that your child is not experiencing something so dire. Perhaps you even begin to appreciate those around you more and your capacity to give and receive love becomes more significant. Your connection with others begins to synchronize and you begin to understand that all of us are exactly the same on the inside.

Wouldn’t it be wonderful if we could experience this profound connection with others without a child having to suffer through the disease of cancer? Wouldn’t it be incredible if it didn’t take something as hideous as pediatric cancer to allow us to love and appreciate each other on a deeper level?  Wouldn’t it be perfect if no child ever had to suffer through surgery, chemotherapy or radiation again in order to teach us about this magnificent gift of love?

There’s no doubt about it—love grows and evolves when a child is diagnosed with cancer. I’ve seen it happen over and over again. And because September is Childhood Cancer Awareness Month, it’s a time when we all need to be reminded to nurture this love and spread it around. There is ample opportunity to help: volunteer for an organization that helps children with cancer, make a donation to cancer research, or reach out to a family whose child has been diagnosed with cancer.

Let’s keep this awareness alive and do all we can to find a cure so that someday, an innocent child won’t have to suffer through the pain of cancer treatment just so you and I can learn to love each other the way we’re meant to.

http://teddybearcancerfoundation.org/

http://www.sbch.org/OurHospitals/CottageChildrensHospital/tabid/150/Default.aspx

http://www.curesearch.org/

http://www.lls.org/

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Bald is Beautiful

2 Aug

My twenty-one year old daughter just shaved her head. When she first told me she was considering doing it, I reacted in my usual jump-to-conclusions-quick-to-disapprove mode and spoke before I took the time to think. I told her she was being impulsive and that she would look ridiculous.

“No one will take you seriously if you cut off your hair, Leah!” I yelled at her, “You just want to do it for the attention you’ll get!”

The look on her face made me want to suck those awful words right back into my mouth, but I just couldn’t bear the thought of her shaving off her beautiful chocolate brown hair that framed her lovely face and fell like silk across her shoulders. Truthfully, the thought of seeing another child of mine with a bald head was just too much for me to face.

You’d think that as her mom, I would have been more supportive of her decision to shave her head, especially after I found out why she wanted to do it, but I’m stubborn sometimes and it takes me a while to see the big picture. At first, all I could think of was how funny she would look, and secondly, what would people think, and finally, how much I would miss her long, thick hair. I’m embarrassed to say that I tried unsuccessfully to talk her out of it.

Daddy cutting off Leah’s braids

Yet, despite my lack of enthusiasm, our entire family traveled down to Los Angeles last Sunday to watch Leah shave her head in front of hundreds of people at a mall in the center of Hollywood. She recently joined 46 Mommas Shave for the Brave, a group of moms who shave their heads publicly to raise money for St. Baldrick’s, a foundation that funds pediatric cancer research. They call themselves 46 Mommas  https://www.facebook.com/46Mommas because each weekday, 46 children are diagnosed with cancer in the United States—that’s two full classrooms of children! All of these moms have had a child diagnosed with cancer, and some of them have even lost their children to this insidious disease. These extraordinary women came to Hollywood from all over the United States and Canada to tell their personal stories of survival and loss.

Now, Leah is not a mom of a cancer survivor, but she’s close to being one. She was fifteen when Isa was born, so she spent a great amount of time being a second mommy to her little sister. Because of Leah’s enthusiasm and commitment to raise money for cancer research, this wonderful organization graciously allowed her to join them as an honorary member.

I cannot remember ever experiencing a more beautiful day in Los Angeles. The atmosphere in the Mall at Hollywood and Highland was electric. Our family sat in awe as we observed  mom after mom sit on the stage and tell stories of their cancer journeys while their heads were being shaved. Many of them, like Leah, donated their hair to help make wigs for children who have gone bald from chemotherapy treatment.

When it was Leah’s turn to be shaved, my daughters, Nora and Isa, and my son, Nino and I walked tentatively up on stage. We encircled Leah, and watched teary-eyed as my husband Rene took the electric razor and began to shave her head. Rock music blared in the background and the crowd cheered enthusiastically as KTLA newscaster Lu Parker interviewed Leah about why she was there.

Lu Parker from KTLA interviewing Rene

Leah was really doing it, and I have to admit, it was spectacular! The smile on Leah’s face was radiant. I began to cry as I flashed back to a day five years earlier, when we had just returned home from spending two weeks in the hospital after Isa’s initial diagnosis of Acute Lymphoblastic Leukemia. Isa had been so very sick for two weeks, burning up with uncontrolled fevers as her anemic body tried to fight off the many infections that coursed through her blood. Even with plasma and platelet transfusions, her compromised immune system could not put up a good fight against the leukemia. It was a frightening time for all of us—knowing there was a chance that we could lose her.

That morning, tufts of Isa’s thick brown hair covered her pillow, and we realized that it was indeed happening—the chemo was making her hair fall out no matter how much we hoped it wouldn’t. We decided to shave her head because we knew it would all come out eventually.

I remember how brave my husband acted as he shaved Isa’s little head, even though he couldn’t stop the tears from rolling down his cheeks as the electric razor buzzed around her tiny head. Bunches of her long hair fell silently to the ground like downy feathers around our feet. In our minds, we all knew on some level that Isa had leukemia, but through this simple act of shaving off her hair, we finally understood in our hearts that Isa really did have cancer, and this initial realization was crushing.

Isa after we shaved her head

Yet somehow, probably because we had no choice, we made it through to the other side, stronger and more caring than we were before this thing called cancer came into our lives. I can’t believe that five long years have gone by since that terrible day in 2007. Next week, on August 6, Isa will be considered completely cured of her leukemia, and we are so grateful that she is here with us, healthy and vibrant, with long, dark hair that cascades down her back like a horse’s mane.

Changing places: now Isa is the one with long hair and Leah is the bald one!

In the end, I was correct—Leah did shave her head for the attention it would cause, but my assumptions about why she did it were completely wrong. Leah shaved her head because she is a brave soul with a huge heart who cares so deeply about finding a cure for cancer that she will go to the extreme of shaving her head in order to raise awareness about childhood cancer and thus encourage others to donate to the cause. By drawing attention to herself in this way, she knows that people will be able to put a real story and face to pediatric cancer—a story about a young woman’s tremendous love for her little sister who fought cancer so bravely and survived.

Today, we are so thankful that Isa was cured of her leukemia. We attribute her survival to the thousands of hours dedicated to cancer research over the years—research that was funded by so many wonderful organizations like St. Baldrick’s, and which gave Isa a ninety percent chance of survival instead of a certain death sentence.

The Mireles Clan supporting Leah

When “Shave for the Brave” was just about over, an invitation came out across the loudspeaker for any volunteers who wanted to shave their heads in solidarity for the 46 Mommas. All of a sudden, I heard my husband’s voice being interviewed. Rene was getting his head shaved, too—just to show his support for Leah.

It’s Leah’s turn to shave Daddy

As I discovered last Sunday, bald really is beautiful, and so are the 46 Mommas and all of their supporters who work so diligently to keep up this valiant fight against pediatric cancer in our minds and in our hearts. I’m so proud of Leah for making this selfless gesture on behalf of all children with cancer. Fight on, Leah, and fight on Brave Mommas!

Transformation

11 Oct

    

        It’s 1977, and she’s a senior in high school. The only thing on her mind should be filling out college applications, hanging out with friends, and going to beach parties, but she doesn’t have the luxury of thinking about such mundane things anymore.

She has leukemia.

She’s already been through chemotherapy—all of her thick, sun-bleached hair is gone; clumps of it came out in handfuls, spilling onto her pillow, clogging the shower drain. Her bronze skin has paled and dark circles hover under her eyes like delicate teacup saucers. She’s vomited so many times it feels like her insides have been ripped out.

She thought she had beaten it; her cancer had gone into remission for nine months, but now it’s come back, and she’s so afraid. Her only chance for survival is a bone marrow transplant.  She longs to talk about her fears with someone—with her parents, her friends—anyone—but she’s afraid she’ll make them sad. So she keeps silent. She wants to believe that this is not her fault.

She doesn’t think of school, or dances, or boys.

She thinks only of wanting to live.

Terri Toon in her senior yearbook photo

 Over thirty years ago, when I was a freshman at Dos Pueblos High School in Goleta, California, a girl named Terri Toon was very ill with cancer. She had been diagnosed with leukemia when she was a junior and had been in remission for nine months when she relapsed. Terri was only sixteen when she found out she had Acute Lymphoblastic Leukemia—the very same kind of leukemia that my daughter, Isabella, had.

Because her relapse meant that the standard treatment for leukemia would not cure her, Terri’s only hope for survival was a bone marrow transplant. Although her younger brother turned out to be a perfect bone marrow match for her, Terri’s family had no insurance coverage to pay for the 75,000 dollar operation, which at that time was considered experimental. As word spread about Terri’s situation, our high school and the community rallied together to raise money for her transplant; through donations and fundraisers, over 170,000 dollars was raised for her treatment and care.

Although I didn’t know Terri personally, I knew who she was, and often saw her walking through the halls on campus. She was a stately girl, with long, tan legs and a shy smile. She wore a short brunette wig to cover her bald head.

Once, during first period, Terri’s voice resonated through the school intercom system. In a confident tone, she thanked everyone for their financial and moral support, expressing her appreciation toward the student body for all their help with the fund-raising efforts.

“Hi, I’m Terri.” Her voice reverberated through the classrooms, “I love life and I love you and I’m going to live.”

It seemed as if everything was going to be all right after all; the student body, as well as the community wanted so badly to believe that she would make it through her transplant and be cured.

She never had the chance. On March 20, 1977, a massive blood infection took Terri’s life before she could even have the transplant.

She was only seventeen years old.

I was saddened by Terri’s passing, but in truth, it didn’t greatly affect me. I was a typical self-centered teenage girl—too immature at that time to understand such intense pain and loss. After Teri’s death, life continued on for me and my high school friends almost like the events of the past year had never even happened.

In June, when the yearbooks came out, I cried a little while reading the dedication to Terri, but soon enough, my yearbook, the pages covered in messy, teenage scrawl, was put away up in the closet as summer beckoned me to the beach. My mind was occupied with other more important things—like slathering my body in baby oil to fry in the sun, or flirting with older boys while working at my first job at a pizza parlor.  I forgot about Terri.

After high school, I went on to graduate from college, get married, have children, buy a home. For me, leukemia was just a word that I’d hear every so often in passing; at one time or another I may have thought briefly of Terri, but probably not. Because cancer had not affected me personally, I was content in my little bubble of oblivion.

At least I was, until exactly thirty years after the death of Terri Toon, when my own two year-old baby girl was diagnosed with leukemia. I was oblivious no more.

As a mother of a child who had cancer, I’ve experienced the gamut of emotions that go along with this devastating diagnosis: paralyzing fear, hopelessness, rage, acceptance, and ultimately transformation.

But it wasn’t my body that was exploding with deadly cancer cells—it was my daughter’s, and she was really too young to understand what was happening to her. It was more about my pain than hers. And it was my emotional distress that affected me most, because I was her mother, and the thought of losing her was unfathomable. But it must be a completely different kind of anguish when you are diagnosed with cancer yourself.

What must it be like to be a teenager with cancer?

I honestly have no idea how I would’ve handled it if I had been diagnosed with cancer as at age sixteen. How does any teenager cope with such a grim reality?

How did Terri feel knowing what was in front of her?

My friend, Robyn, who is the hospital pediatric social worker, sent me a poem written by a young girl who recently went through treatment for Lymphoma (cancer of the lymph system).

Olivia Lafferty is a junior at the same high school that I attended so many years ago. She’s beautiful, artistic, and has many friends—she’s just like any normal teenage girl—except for the fact that she can intimately understand what Terri experienced so long ago.

Olivia wrote the following poem for an English class assignment. I was so moved by her description of her experience—her pain, her fear, and especially her transformation.  I asked her if I could share it with all of you, and she graciously agreed.

Olivia Lafferty during her treatment for cancer

 Adaptation

       By Olivia Lafferty

I have known life, I have felt death,

I remember the beeping of poison machines

All of it surging through my veins,

Killing me, saving me, changing me

I would lay waiting, as my pain grew, and the monster inside of me shrank

These chemicals peeling off my skin and guiding me through a metamorphosis

And in the process, two liters of blood burned, and my lips  turned blue

I know how it feels to have lost all hope, and to find a friend in only the ink of my pen,

My memories guiding my finger putting sentences together that made no sense,

But none of what happened made any sense, so then, it did.

People I knew, they would say, “you’ve changed so much, you’re not the same, it was him, wasn’t it?”

But it was this poison, my savior, my enemy,

And with every word that was spoken, a lake grew in my throat,

And it’s not my fault, it’s not my fault, it’s not my fault.

Then, it STOPPED

And I stopped pretending that I felt nothing,

I cherished my hairs as they grew, even though they were dead, and did not matter

I was still that girl who disappeared in November, but I was much less and much more

Now I can do anything, now nothing can stop me, nothing except that little girl who is no longer me,

She is dead to me, the poison killed her

I’m sorry if you can’t understand that I am different, but I am brave, I am better. I am not the poison who changed me

I won’t ever completely know what Olivia endured while dealing with her cancer—I don’t ever want to know. In reading her words, though, I’m offered a glimpse into the world of terror and pain that she lived in during her cancer treatment. Through Olivia’s words, I believe I have a better understanding of the emotions that Terri must have experienced so many years ago. Perhaps through those same words, Olivia’s friends and classmates will be able to better understand, too.

Olivia and I don’t appear to be anything but normal people, but in one small way, we are exceptional because we’ve been tested by circumstances both terrifying and unimaginable, and we’ve not only survived, but blossomed. We’ve been soundly knocked down to our knees by this thing called cancer, and yet we’ve managed to get up off the floor, our spirits intact.

We’ve allowed it to transform us into something better than we were before.

Olivia Lafferty is just a normal teenage girl, except that she’s not.

Olivia, expressing herself through her art

Olivia, today, wearing her Dos Pueblos Chargers shirt

Denial

15 Sep

Isa, three days before her diagnosis of leukemia. I had put her in the sink for a cool bath to bring her fever down.

Security is when everything is settled. When nothing can happen to you. Security is the denial of life.
–Germaine Greer

I’m standing in the grocery store aisle, staring at the myriad of canned goods, trying to figure out which brand of stewed tomatoes offers the best deal, when I hear a voice next to me.

“Oh, my goodness—isn’t she adorable!”

I turn and face an older woman who has a bemused smile on her face as she looks at my daughter in the shopping cart. I’m used to people making comments about Isa, because she’s a beautiful child with big brown eyes and skin the color of caramel and cinnamon, so I turn toward Isa, expecting to see her flashing a toothy smile at the lady.  I’m surprised to see that Isa has fallen into a deep sleep, her head resting on her shoulder at an odd angle, like one of the floppy cloth dolls from the toy box in her bedroom.

“Look at that sweet girl, sleeping like an angel. She’s all tuckered out!” the woman exclaims. “Did she stay up too late last night?”

“Uh…” I stammer, not sure of what to say. “I guess so…”

“Well,” she smiles at me, “You are so lucky! I wish my kids would’ve slept like that in the grocery store when they were little. I would have gotten a lot more shopping done!” She walks off chuckling down the aisle.

My chest feels heavy. Isa is completely out.  Why is she so tired? She slept over twelve hours the night before.  And now it’s only 9:30 a.m.

I try to put the fear out of my mind, but as much as I want to deny it, I realize something is seriously wrong with my little girl.

I don’t believe that there is such a thing as a perfect childhood. All of us carry baggage around with us from our past that influences how we behave as adults. Because of my own past experiences, I tend to shy away from conflict and I’m likely to hide from confrontation and anger. But my closest relationship is with good, old-fashioned denial.

I’m sure it’s because I was raised in a dysfunctional family in the 1970’s, complete with an alcoholic father, who when drinking, would send our household into a frenzy of fear and anxiety.

As the middle daughter between two brothers, I became adept at putting on a happy face, running around trying my best to make everything all right so my father would choose us over alcohol. I thought that if I was good enough, I could influence his behavior. Sometimes I thought it worked; he would stay sober for two or three days and I could pretend we were a normal family. It never lasted, though—he would always fall back off the wagon. On those drinking nights, I would hang suspended in a bubble of anxiety, filled with a sense of foreboding while I waited for everything to explode into a horrific scene of drunken, irrational behavior.

I loved my dad so much when he was sober, and I hated him more when he drank. My child’s brain believed my actions influenced whether or not my father drank, so I did everything I could think of to prevent it. I cleaned the house without being asked, was an exemplary student in school, and practiced the piano for hours so that my parents would be proud of me. I tried to make my dad laugh so he would not get annoyed with me or my brothers and use his irritation as an excuse to drink.

I became the pleaser child; the one who put my own feelings aside in my attempt to create a façade of a normal family life. I learned to pretend that my reality was an acceptable one, and that I could control it if I tried hard enough.

Because these feelings of anger and hate and disappointment that I had toward my father were so intense and painful, I subconsciously tucked them all away, and put them into a locked box so they couldn’t hurt me. I’ve carried that heavy thing around on my back throughout my entire adult life. It’s been so much easier not to feel.

When I look back on when Isa first got sick, I can see how I let my coping mechanism of denying anything painful prevent me from facing what I must have known in my heart: that my daughter was extremely ill. All of Isa’s symptoms were laid out in front of me like a detailed road map, but I was unable to follow it because of my inability to accept that bad things can and will happen to all of us.

I stood still in fear and denial, when I should have leaped into action.

I’m Isa’s mother—I should have known how sick she was: she had absolutely no energy; she could barely walk up the stairs without getting winded. She had dark circles under her eyes and was sleeping more than usual. The worst part was that she had recurring fevers of at least 102 degrees for almost a week and a half with night sweats so severe that the sheets were often soaked the next morning.

Rene knew that something was seriously wrong with our daughter. He told me repeatedly to get her to the doctor, but in my stubbornness I kept brushing him off, saying, “Don’t worry—it’s just a virus. She’ll be fine in a few days.”

But she wasn’t fine. One evening at bedtime, her gums started bleeding spontaneously and didn’t stop for at least an hour. I thought she had cut herself with her fingernail. The blood-soaked tissues I used to try to stop the bleeding had sort of an orangey color. She had thrown up in the morning and wouldn’t eat any of her dinner.  I was potty training her at the time and her urine was the color of apple juice. You’re probably thinking: “Get a clue, Lady—your kid is really sick! Get her to the hospital! IT’S LEUKEMIA!”

It never even crossed my mind that she had cancer. Twice, I ended up taking her to the local clinic because her pediatrician was out of town, and both times, the doctors there reinforced my own diagnosis of a virus and sent us home with instructions to give her Motrin and come back if her fever didn’t subside. I never questioned them, because I wanted to believe that it was just a virus.

I never imagined that my child could become catastrophically sick.  Many times, my other three children had fevers and acted listless; I’d worry a little, give them medicine, and put them to bed. A few days later, they’d get better. But Isa didn’t get better.

My good friend denial is a tough contender, though. In the recesses of my mind, I knew it was something serious, but I was just so damn afraid to admit it to myself.  I sharpened my denial like a knife on a wet stone. She will be all right! I waited and waited for Isa to wake up in the morning, jump out of bed and once again act like a normal two year old, but she never did.

By the grace of something magnificent in the universe, my own good sense finally got a foothold on my denial, and after we got home from the grocery store that morning, I called and insisted that her pediatrician see us immediately.  He took one look at her, and said, “This child is extremely pale, and she’s not acting like a normal two year old. Let’s get some blood drawn.”

That afternoon, Isa was admitted to the hospital with severe anemia.  Her bone marrow was extracted from her hip and sent off to the lab for analysis. Two days later, we found out she had leukemia.

Denial went down and reality won the fight. This was very bad indeed. No matter how hard I tried to prevent it, the bubble had exploded once again.

The difference is that now I can’t possibly deny my reality, because there’s nothing I can do to change it. I have to accept that very bad things happen sometimes, even to very good people. The trick is that I have to use this ordeal of my daughter’s cancer as a chance to learn something pivotal and enlightening, because that’s really what life is meant for: big lessons and little lessons. It’s about what you learn from your experiences.

I’m also learning that there really is no such thing as security, and that’s all right.

It’s better to feel afraid than to feel nothing at all.

Why Not Me?

9 Sep

I suppose I should begin by writing about my cancer experience. It’s really Isa’s cancer experience, but she was only two years old when she was diagnosed, and barely remembers any of it, so I’m claiming it as my own. I want to share my story because it’s the main reason I began writing again in the first place. It’s much too long a tale to tell in one post, so I’ll probably write about it here and there and spread it out over time.

Last night I was back in the hospital with Isa and my husband, Rene. No, I wasn’t there because our daughter was sick or had suffered any relapse of her illness; but because Isa’s pediatric oncologist had asked us to speak to the parents of a four year-old girl (whom I’ll call Lili to protect her privacy) who was recently diagnosed with the same kind of leukemia that Isa had. He thought it would comfort Lili’s parents to meet Isa and see that after two and a half years of chemotherapy treatment, our daughter is now a normal, healthy six year-old.

It’s still very difficult for me to go back to the hospital, even though I know that Isa is in complete remission right now. Walking through those endless tunnel-like hallways lit by the yellow glare of fluorescent lights, seeing all the doctors in their light blue scrubs, and especially the distinct sweet smell of hospital antiseptic, all manage to trigger a mental time-relapse in my head. I’m transported back to a place in my life when everything I considered normal blasted apart like two cars in a head-on collision.

Before Isa’s diagnosis, pediatric cancer was something I’d watch once a year while the St. Jude Hospital telethon played on television. Cancer in children was relegated to the narrow periphery of my life; a quick glance of a sunken-eyed, bald headed child lying in a hospital bed, tubes dangling every which way from her body like strands of dress-up costume jewelry. I’d pause a moment to sniffle noisily while the music swelled and think, “Good thing that’s not my child—I’d never be strong enough to handle that!” Those brave and miserable kids managed to bring tears to my eyes, but I was so removed from the reality of childhood cancer that I never even made a donation to St. Jude Hospital. Not once.

Then it happened. From one day to the next, I had become a member of a very special club— THE PEDIATRIC CANCER CLUB.  Welcome to stark hospital rooms, the endless scrubbing away of germs, sleepless nights, and life-altering anxiety. Welcome to anesthesia, surgery, blood transfusions, and an array of chemotherapies so toxic that the nurses have to wear protective clothing so as not to burn their skin while they are putting those cell-destroying chemicals into your child’s body.

Welcome to the abyss of primal maternal fear.

 

It’s not a place I’d wish on my worst enemy.

As we walk into Lili’s hospital room, I immediately feel that incipient fear oozing out of her mother, Marta, like thick, black bile. It’s almost as if I can see into her soul and I can tell she’s stuck in that dark and disconsolate place—a place I know intimately. There, fear is a hard rock in your stomach that won’t go away no matter what type of positive diagnosis the doctors give you. This place is a particular hell where you can’t stop asking the question, “WHY ME?—Why my little girl? Is she going to die?”

I will tell Marta that Lili will most likely not die—that her daughter’s type of leukemia has almost a ninety percent cure rate. I will tell her that she’s about to go through the worst hell imaginable; that watching her daughter suffer will be a heavy burden that she’ll carry for many years to come. Yet, in the same breath I will also tell her that she will come out of this experience with a greater appreciation for the beauty and preciousness of life. I will tell her all of these things, but I know she won’t believe me right away.

She won’t believe me because she has to experience it herself. She has to go through the process. Right now, she’s in that place that you can only escape through the passage of time and experience. Marta won’t feel safe again until Lili is done with her treatment; her hair all grown back, and is considered cured. Even then, the fear will never go away completely. She’ll do as I did: watch and wait and worry. She doesn’t yet know  that the fear will ease over time, and the evidence of great blessings will become apparent.

When Isa was first diagnosed, I spent time in that dark place: Why me? Why did this have to happen to our family? We don’t deserve it; Isa doesn’t deserve it. What I didn’t know then is that I would eventually ask myself, “Why not me?

Lives are changed by a child’s cancer diagnosis; normal family life is turned upside down in an instant. What I’ve learned is that patience is paramount, because many blessings are right around the corner. You’d never imagine it, but cancer can turn out to be a marvelous gift—an incomparable, transforming gift.

Isa’s cancer experience certainly changed me in profound ways: I learned that I am stronger than I ever imagined. I learned to accept a difficult situation with grace. I learned to allow others to help me when I was used to doing everything myself.  I learned that there are angels walking amongst us who are masquerading as pediatric nurses.

I learned to slow down and breathe and be grateful and LOVE more deeply. I learned that I have the ability to help others who are going through what I went through—that I have something significant to share with them, just because I’ve been there.

I walk into the very same hospital room that Isa stayed in over four years ago. There is Lili, sound asleep in her hospital bed, the static whir and beeping of the machines droning in the background, and I see her mother next to her. I reach out to hug her tightly and our tears flow together.

I will help her to not be so afraid.

Why not me?