Tag Archives: chemotherapy

A Happy Ending

18 Feb

RANDOM 122Days go by when I don’t stop to remember that my daughter is a cancer survivor. I even forget to be grateful that Isa is still here with us. Sometimes it feels like the whole cancer experience was a just a tragic movie that our family acted in a very long time ago—a movie filled with fear, angst and sadness but ultimately concluded with a triumphant and happy ending.

I’m to the point now where life is so normal that I actually hear myself complaining about the weather—and this is when it’s eighty degrees outside in February. Isa is nine now, completely cured of her leukemia, growing tall and lithe; busy with singing classes, piano lessons and Girl Scouts. She’s a joyful and funny child—at that lovely pre-adolescent age when everything about life is still fun and exciting—where she wakes up overcome with exuberance as she meets each new day. The beauty of her smile is intoxicating.

This is in stark contrast to me at age fifty-one, when I don’t recognize the old woman with wiry hair and bags under her eyes who stares back at me in the mirror each morning. My body aches as I tightly grip the handrails of the menopausal roller coaster as it throws me into loop after loop of hormone diminishing mood swings, memory loss and weight gain. It would be easy to complain about it all, but I won’t. Because compared to that movie I acted in a few years back, a few aches and pains, forgetfulness, and some grumpiness are really nothing at all.

I’m one of the lucky ones. I’ve been granted the luxury of complaining about insignificant things like menopause because I’m no longer stuck in a hospital room with my daughter tethered to an I.V. line as I watch the chemotherapy wreak havoc on her little body.

There are so many families out there right now who don’t have that luxury—families who are going through what ours went through—some who have little or no hope that their child will survive. I read about them on Facebook and my heart breaks with every story because I know their fear. I know their sadness. I want to promise them it will all get better, and for some it will, but for others there will be no happy ending to their movie.

I’ve realized that when I start to complain about the unimportant things and forget that I had my happy ending, it’s time to bring out that movie and watch it over again—to be reminded that there is still so much to be done to raise money and awareness for cancer research so that eventually, every family with a child diagnosed with cancer will have a happy ending.

My husband, Rene is running his eleventh Marathon in a few weeks, and my daughter, Leah has taken it upon herself to help him raise money for the Pablove Foundation for pediatric cancer research. Here’s the link: http://www.stayclassy.org/fundraise?fcid=257002  Check it out. Maybe your small gesture is just what’s needed to help a child have a happy ending like Isa’s. A little goes a long way.

From this…

Aug 30 07 022

100_0069

isa on horse

IMG_0758 Isa Mireles 4-26-13 - Copy

To this.

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/

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

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?