Tag Archives: bone marrow transplant

Waiting

6 Jan

Two beautiful ladies: Kat and Lexi

My friend Kat is waiting. She waits while she puts the dirty laundry into the washing machine, she waits while she scrubs the kitchen sink, and she waits as she bends over to pick up toys strewn about the living room floor. Every time she takes a breath she is waiting.

When your child has cancer, you wait.

It’s exhausting—all of this waiting.  It’s especially wearisome when Kat has to wait in her daughter’s hospital room while Lexi gets her most recent dose of chemotherapy. I know firsthand how difficult it is to spend all day and night in a bleak hospital room, where time drags on and on and terror makes itself comfortable in your stomach like an unwanted house guest.

When the current round of chemo is finished, Kat takes Lexi home, where she waits to see if her daughter’s suppressed immune system will be strong enough to fight off any infection. She waits for the fever to come, and it usually does. She travels back and forth to the hospital (sometimes every day) to draw blood and check Lexi’s hemoglobin and platelet counts.

Lexi in the hospital.

At the clinic, Kat waits patiently while the nurses fuss over her daughter—they can’t help it because Lexi is special. She’s smart and funny and precocious, and she’s one of their favorite patients. Kat laughs and jokes along with the staff, even teasing the doctors at times like they’re family—and indeed, because of this nasty thing called cancer, they have become just like her family.

She waits for Lexi’s white cells to go back up. She waits for her daughter to feel better. To Kat, seeing Lexi feeling good is as calming as putting on a pair of warm pajamas fresh from the dryer—soft and safe and comforting, even though she knows the warmth will only last for a short while.

Then Kat waits for the phone call from the clinic to see if the chemo has done what it’s supposed to do. This is the most excruciating waiting of all. It’s especially difficult when the voice on the other end tells her that Lexi is not in remission and that she has to go back into the hospital for more chemo—this time for a stronger form with even more side effects.

Kat has been waiting a very long time for her three year-old daughter to go into remission.  And she can do nothing but pray and hope and wait, because Lexi must have a bone marrow transplant to live.

Lexi, before her diagnosis of leukemia.

A mother should never have to think that her child could die. It’s an agony beyond comprehension. The love that we mothers hold for our children is so infinite that the mere idea of the possibility of their death drags us into that suffocating room of unthinkable anguish.

Before my daughter Isabella’s diagnosis of leukemia over four years ago—before I even knew what real fear was about, I foolishly tormented myself by visiting that room in my mind every so often.

For years I had a bad habit of waking up in the middle of the night and letting my imagination run away with me like a child on a bicycle speeding down a steep hill. I’d squeeze the hand brakes a little so that the fleeting images in my head would start out slowly and relatively innocuous. Maybe I’d picture one of my kids falling and chipping a tooth, or perhaps slamming their fingers in the car door.

It never stopped there, though. As I pedaled down that dangerous hill of make-believe, the pictures in my mind always became more graphic. Within a few minutes, I’d have come up with some insidious scenario involving my children and electrical sockets, watching them running out in front of a speeding car or worst of all—finding their lifeless bodies at the bottom of our swimming pool.

It was a very sick habit—this making up of horror stories. I don’t even know why I allowed myself to do this, but the more I practiced the better at it I became. I was like a veteran film director shooting a climactic scene; it was absurd the variety of dreadful endings I could come up with! And my mental movies never had a happy ending.

At times, these visions snatched the breath right out of my lungs as I laid there in bed, the stillness of the night amplifying my terror. But even then I knew these thoughts were just figments of my neurosis, that it was just a stupid game I played in my head. I could shake it off, pull the covers back up to my chin and go back to sleep. I could forget all about it.

And then I couldn’t forget about it, because it became real. And never once did I imagine my child getting cancer as the ending to one of my movies.

So I went through my journey with Isa’s cancer, because I had no other choice. As much as I wanted to, I couldn’t close my eyes and go back to sleep—I had to face the reality that my child could die.

I sat and waited in the very same hospital rooms as Kat. I’ve made friends with the very same nurses and I’ve even teased the same doctors. I’ve waited in agony for those anxiety-producing phone calls. I’ve cried, I’ve worried, and like Kat, I’ve had some very bad days.

Isa in the hospital on her third birthday, bald from chemo and bloated from the steroids.

Fortunately, I’ve had more good days than bad. I’ve made it through to the other side. Isa’s leukemia was the kind that has the highest cure rate, and she had all the criteria for a good outcome: her young age, her genetic and chromosomal make-up and most importantly, she responded rapidly to the chemotherapy.

I’ll never forget waiting for the doctor to call and tell us whether or not Isa’s cancer had gone into remission. On that warm summer afternoon when I answered the call from her pediatric oncologist, my stomach knotted as I braced myself for the worst. When I heard those words on the other end of the phone “absolutely no more leukemia cells in her bone marrow,”I sobbed tears of joy and relief as I fell into my husband’s arms—so thankful that such a burden had been lifted off our shoulders.

Mommy and Isa at the beach, December 2011

Since I began this  journey with Isa’s cancer, I’ve stopped my late night visits to that room of imaginary horror—there’s no need to go there. There never was. I’ve grown and changed and learned to live more in the moment. I’ve felt the love and concern from friends, family and even strangers pour into me like warm milk and honey. I’ve been overwhelmed by the sheer goodness of people and I’m forever grateful that my real-life movie turned out to have a happy ending after all.

Isa today, hair all grown back.

Though I don’t presume to speak for Kat, I know that she has had many of the same kinds of experiences and is thankful for those who have helped her along the way.

Lexi has a long road ahead of her. Her leukemia has been difficult to treat. When she finally reaches remission (and I believe with my heart and soul that she will—I have to believe this), Kat will have to begin the process of waiting again as she takes her baby girl through the bone marrow transplant. She will have lots of help along the way because although cancer is a terrible disease, many incredible things begin to happen when a child is diagnosed.

And Kat will have her happy ending, too—I just know it.

A mother will wait for as long as it takes.

Lexi and Kat at the Teddy Bear Cancer Foundation Christmas Party

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

An Ordinary Birthday Party

21 Sep

Lexi, admiring her Shrek Birthday cake. Isa is on the far right.

Last Sunday afternoon, I went to an ordinary birthday party. There were brightly colored yellow and orange balloons, a red and blue bouncy house and a whimsical Shrek cake in the most vibrant shade of green imaginable. The sun danced like it was still summer, accompanied by the music of children’s laughter, as the smoky scent of a barbecue floated through the September air.

The only thing not ordinary about this party was that the birthday girl had absolutely no hair and will soon be headed to Los Angeles to have a bone marrow transplant.

The birthday girl has cancer.

My daughter, Isa and I went to this ordinary birthday party for three year-old Lexi, who is battling Acute Myeloid Leukemia (AML). We met Lexi and her parents, Kat and Jonathan, through the Teddy Bear Cancer Foundation, which is a local Santa Barbara organization that helps families with their emotional and financial struggles while dealing with a child with cancer. Isa and Lexi hit it off right away, because they’re basically two peas in a pod: their mission in life is to be cute, say hysterically funny things, and make people laugh as much as possible.

A year ago, after being diagnosed, Lexi went through intense chemotherapy, and after six months, I was delighted to hear that she was in remission. Unfortunately, AML is somewhat more difficult to treat than ALL (which is what Isa had), and Lexi relapsed. She is now facing a bone marrow transplant, and will travel to the City of Hope Hospital for her transplant in October. The wonderful news is that a perfect bone marrow donor has been found for her. The bad news is the forthcoming isolation of a months-long battle that she and her parents are facing.

The day of Lexi’s party couldn’t have been more glorious: the lingering fog was finally chased away by the sun, just in time to make the surrounding green grass come to life with yellow dandelions popping out like polka dots.

Lexi was dressed up like a little glamor princess with black leggings and a lacy leopard-print frou-frou skirt. Her perfectly-shaped bald head shone in the sun like that of a miniature, wizened Buddha. She ran around entertaining people with her funny antics and adorable facial expressions. She was an ordinary happy child.

I brought my plate, loaded with delicious barbecued chicken and tri-tip, and sat down at a picnic table, surrounded by nurses, doctors, social workers,  clinic office managers—all folks whom I’ve met and become close with through Isa’s long journey with leukemia. We dug into our food, joking and teasing each other, like old friends do.

As I looked at all of their laughing faces, I felt of wave of pure gratitude pour through me. I thought, “How lucky am I to be in the midst of such incredible people?”

By looking at them, you wouldn’t think they are so special. On the outside, they’re the same as you and I: thick, thin, tall, short, old and young. They’re not perfect; sometimes they’re grouchy, admittedly controlling, and even sarcastic at times.

But on the inside, these people are extraordinary. They share something rare: a deep capacity to love and the ability to show that unconditional love to all patients, no matter what the child’s circumstances or background are.  These remarkable people take care of young cancer patients who are ailing and miserable, and always do it with a smile, a silly joke, or a gentle touch.

They deal with rude and irate parents who, so terrified of losing their child, lash out in anger.  They smile, bite their tongues and turn the other cheek. They put up with young patients who act out of control because they are in so much pain; kids who cry and scream and hit because they don’t want to be poked with another needle, or swallow any more nasty medicine. Sick children vomit, bleed and poop on them, and they clean it up without uttering a single complaint. They soothe all of us with hugs and kind words and tell us it’s going to be all right. And we believe them.

Sometimes their young patients die on them.  As painful as it must be, they show up at every funeral and cry because they know they’ve lost another angel.

Yet, God bless them, after all this, they still keep showing up for work every day.

And there they all were, enjoying an ordinary birthday party, after traveling miles away from their homes, on a Sunday—no less, to be with Lexi on her big day. They came to support Kat and Jonathan. They came to her party because they love Lexi—just like they love Isa.

Just like they love Jeffrey and Rosie and T.T. and every single one of their patients.

Attending a birthday party for one of your patients doesn’t seem like such a big deal, but really, it’s much more than that. It’s a sign to the patient’s family that they have a support system in place; that there is a group of people who love and care for them, and will do anything in their power to heal their child.

Isa and her nurses

Nurses Pam, Peralee and Nanci snuggling with Isa.

Recently a friend asked me, “Don’t you want to forget that Isa’s illness ever happened, and just move on? Why do you keep surrounding yourself with kids who have cancer?”

The answer I gave her is yes, I am moving on, but not in the way she thinks. I’m moving on because after this giant struggle, I’m finally growing into the person I was meant to be.  I’m moving on, but I’m also staying put. I’m not going to distance myself from the center of this terrible, horrible, life-altering, transcendental thing that is pediatric cancer, because I’m needed here. There is still so much more work to be done.

As human beings, we are all connected in a way that few of us completely understand, but childhood cancer somehow breaks down that wall of self-protection we build up throughout our lives. The vulnerability created by a child’s cancer diagnosis allows one to find that deep, human connection that we all strive to attain. It allows us to start knocking down that wall that’s been fortified by that viscous mortar of fear.

Nurse Peralee, Isa and Mommie.

Nurse Paralee, Isa and Mommy right before surgery.

I carry a powerful memory around in my heart from the  start of our cancer journey, when Isa had just been admitted to the hospital. I was at the lowest point I’d ever been in my life; when I was so afraid I could barely speak. Isa’s nurse that day saw the state I was in and came over and enveloped me in her arms. She held me for a long time.

“You know, Jessica,” she whispered in my ear, “I’ve seen many cases like Isa’s, and I just want you to know that she’s going to be just fine—I promise you.”

As a professional, a nurse is not supposed to make those kinds of promises, but I can tell you that those simple words were like a soothing balm to me. I realized she couldn’t really see the future and know for sure that Isa would be all right, but what she did know is that I needed to hear those words. That was a turning point for me. With just a few sentences, she was able to begin chipping away at my wall.

Because of these heroic people who all worked together to save my daughter’s life, I have the luxury to appreciate every moment spent with Isa, or the rest of my family and friends, for that matter, and cherish that time with all of my being. For this, I’m forever grateful.

These very same people are there for Lexi, too—giving her parents a sense of support and peace, if only for a short time on the afternoon of their daughter’s third birthday party.

It was just an ordinary birthday party, but what I saw was unrestrained grace. The kind of grace when nothing matters except to live in the moment, where love and joy are tossed around like floating dandelion blossoms, their plentiful seeds fanning out in the breeze, the potential for new possibilities not far away.

It’s fitting that today, Wednesday, September 21, 2011 is World Gratitude Day. Take a moment and tell someone how much you appreciate what they’ve done for you.