Tag Archives: cancer

Miracle

12 Dec

img_0612My youngest daughter, Isa turns twelve years old today. I guess you could say she’s a bit of a miracle–born to a mother in her forties whose other three kids were practically grown up when she entered the world with a lusty cry and a head full of thick, black hair. Then, when she was a toddler, this miracle girl did something even bigger: she was diagnosed with cancer and after a fierce battle, she survived. And as a family, we also survived. The greatest miracle of all is that through this nightmare of cancer, Isa taught us how to live.

Today is a special day: Isa’s golden birthday. She is 12 on 12/12. It’s also the birthday of the Virgin de Guadalupe, who is an iconic saint in Mexican culture. When Isa was going through treatment, when her hair fell out and her belly swelled from the medication, Rene took a short trip back to Oaxaca to see his family. While in Mexico City, he went to the Basilica of our Lady of Guadalupe to make an offering to the Virgincita and to pray for Isa’s life. Now, my husband could certainly win the prize for the best lapsed Catholic, but going to that shrine somehow comforted him, offering him hope during a very dark time.

Since that time, our family has made it a tradition to go to Olvera Street in Los Angeles on Isa’s birthday to Our Lady Queen of Angels Catholic Church to offer our thanks for another year with our beautiful daughter. We went last night and had a wonderful time, marveling at the beautiful culture of Mexico and deeply grateful that Isa is still here with us.

Happy Birthday, Isa!

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The Long Road Home

26 May

Eight isa pile of puppiesyears ago, our lives changed forever.

The doctor sat us down in the hospital room, his face full of concern. “We finally know what it is,” he said, quietly, “She has a form of leukemia.”

For two agonizing days, my husband and I had been pacing the hospital hallways waiting for the bone marrow biopsy to tell us what was wrong with our daughter. Now a pediatric oncologist with tired eyes and a stethoscope around his neck was telling us that our fourth child—our baby girl—had cancer.

Those ominous words should have expelled all the air from my lungs, buckled my knees out from under me, or caused me to run screaming down the hospital corridor—but they didn’t. Oddly, I felt only relief. We finally had a definitive answer as to why my two year-old was so sick. Yes, it turned out to be cancer—but at least we knew what it was and could immediately get started on saving her life.

I can do this, I told myself, not realizing that our ROAD TRIP TO HELL was about to begin. For the next two and a half years, our family would travel down that bumpy, pot-holed road, the gas tank running on empty, the tires balding and the radiator constantly threatening to overheat as we navigated our way through a cancer diagnosis without a map. Isa, strapped into her car seat, would thrash about in the back, sweaty and miserable as she crammed Lays potato chips into her mouth, the salty snacks the only food she ever wanted to eat. In the rearview mirror I watched in horror as my beautiful daughter morphed into this hairless, grotesque creature with a protruding belly and swollen cheeks. Her normally sweet brown eyes were filled with an unrecognizable fury caused by the steroids that we crushed into a white powder and mixed with cherry syrup, feeding it to her each night like a special treat.

The constant fear was the worst part—the multiple surgeries to infuse chemo into Isa’s spine; the weekly lab reports signaling her low blood counts which indicated a non-functioning immune system. This meant staying indoors, constant hand-washing and no visitors. A high blood count report meant that I could actually breathe again until the next round of chemo started. For years my hands rarely left Isa’s body as I felt her skin for any sign of fever. When her skin burned with a temperature over 101.5 it meant a trip back to the hospital—cool skin under my fingertips meant no infection and it was such an enormous relief it was like diving into a refreshing swimming pool on a hot, summer day.

Now, eight years after Isa’s diagnosis of cancer, the lives of our family have returned to normal—if there even is such a thing. Isa is perfectly healthy with no long-term effects from the chemotherapy. Now I can’t even remember the names of all the medications she took. Our daughter is blossoming into an intelligent and thoughtful young girl with a wicked sense of humor. Every day when I see her beautiful smile and hear her laugh, my heart fills with gratitude.

And although we are beyond delighted with our happy outcome, we do carry residual sadness in our hearts from losing children we have known and loved during this long trip. That sorrow gets easier as time goes on, but it will never go away. And I believe that’s a good thing—because in remembering those who have died, we are more apt to cherish those who are still here with us.

Aug 30 07 022

As we approach the eighth anniversary of Isa’s diagnosis, I’m truly thankful for what our family went through all those years ago. I’m grateful for the friends, family and those in the medical field who supported us back then—and who still support us today. I’m grateful that this experience changed me, and that I’m not the same woman I used to be. I’m more loving, more appreciative, more present in the moment, and more at peace with myself than I was before Isa got sick. I’ve realized how incredibly strong I am. I understand that there is only right now, and most importantly, that not only is it acceptable for me to put myself first at times—it’s often necessary. After all, I’m the one behind the wheel.

Our long road trip was arduous and exhausting and I consider it a miracle we arrived home safely. I’ve no doubt there will be other journeys as our family navigates down that long road of life, but lately it’s become a much smoother ride. So smooth, in fact—that now we can actually take time to roll down the windows, breathe in the sweet spring air and marvel at the scenery.

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

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isa on horse

IMG_0758 Isa Mireles 4-26-13 - Copy

To this.

Dia de los Muertos (Day of the Dead)

1 Nov

Today is the first day of November: All Saints Day or Dia de los Muertos (Day of the Dead). It’s the perfect opportunity to remember those who have left us and reflect upon how much they meant to us.  Just by thinking of them today, we can keep their memories alive in our minds and in our hearts.

Our Dia de los Muertos  Altar 2013

Our Dia de los Muertos Altar 2013

Colorful skulls and pan de muerto

Colorful skulls and pan de muerto

Flor de Muerto (Marigolds)

Flor de Muerto (Marigolds)

Making fun of death

Making fun of death

Cancer took them too soon...Rosie, Jessi, Jeffrey, T.T. and Lexi. R.I.P little ones

Cancer took them too soon…Rosie, Jessi, Jeffrey, T.T. and Lexi. R.I.P little ones

Resting in eternal matrimony; Hermelinda Chimil  and Elias Mireles

Resting in eternal matrimony; Hermelinda Chimil and Elias Mireles

Precious Gillian Winters

Precious Gillian Winters

Skeletons and more skeletons...

Skeletons and more skeletons…

Grandpa Joe

Grandpa Joe

Because of Daisy

17 Feb

daisy

A bald-headed, freckled-faced girl named Daisy died in her sleep after being sick for a very long time. She was at home, surrounded by her loving family, and she felt no pain. But she died, and I must say that I’m so very weary of hearing of yet another family’s tragedy and loss. I’m sick and tired of children dying from cancer.

Not again, is all I can think. How can it be that another sweet, funny and adorable child has died? Why was there no miracle this time?

I’ve always believed that a positive attitude is beneficial to one’s well-being and that our life experiences are never random or fortuitous. I truly believe that what we experience here on this earth is revealed in order to teach us something essential that we’re meant to learn. I’ve discovered these fundamental lessons are usually about love.

When my own daughter, Isa was diagnosed with leukemia, an incalculable transformation took place in my life.  I saw first-hand the astounding and unquestionable shifts in consciousness that came to pass in our family, friends, and even our community during our struggle with Isa’s cancer. Love was always the main component.

I see these miraculous changes have also occurred in Daisy’s family and in the huge number of people who knew and loved her—even strangers who’ve only heard of her fierce battle through her blog http://prayfordaisy.tumblr.com  or on Facebook.

I know Daisy’s family carries the strong faith that she’s all right now and I believe this, too. But from what I’ve seen over the past five years since I first became a part of the pediatric cancer world, the pain and hurt is only just beginning for them. Every time I think about her mama and daddy not being able to hold their precious Daisy in their arms, my heart breaks a little more.

When I think about what Daisy’s family has faced and what they’ll continue to face in the coming days, months and years, an infinitesimal part of their burden becomes mine and it hurts deeply.

Yet, I am grateful.

I’m grateful because each time a child dies from cancer, I’m reminded that by some small shred of grace that was bestowed upon me and my family, my daughter is still here, and I’m blessed with the chance to watch her grow up.  I will never have enough words to express my extreme gratitude for this miracle. I only wish that Daisy’s parents had been able to experience this miracle, too.

Yes, Daisy suffered and ultimately died, and we all know that this is the worst thing that could ever happen to a family. Yet, because of Daisy, we are changed forever. Because of Daisy, we can appreciate the blessings we have in our lives. Because of Daisy, our love and compassion for others keeps growing and expanding and filling up the universe.  I believe that this understanding of love is one of the greatest lessons we could ever learn. This kind of love is the real miracle.

Bless her little heart,  Daisy taught us well.

My List

21 Dec
Isa's first Christmas after being diagnosed with cancer

Isa’s first Christmas after being diagnosed with cancer

Christmas is right around the corner, and as I wrote about in my last blog post, my tradition is to send out a family photo and annual newsletter detailing our family’s experiences and accomplishments over the past year.

This year, in honor of my eight year-old daughter, Isa who celebrated her fifth year of being cancer-free (and is now considered completely cured) I decided to write a different kind of letter—one that focused on what our family has learned over the past five years since Isa was diagnosed with leukemia.

I’ve decided to post part of my letter for my blog readers because sometimes it helps to have an actual list right in front of you.

 

The Most Important Things the Mireles Family has Learned over the Past Five Years Since Isa was Diagnosed with Cancer

  1. It shouldn’t take almost losing someone close to you to make you realize how important they are.
  2. People in general are inherently good and will always step up and try to help in times of crisis.
  3. As much as we try, we cannot control everything. Sometimes it’s best not to fight too much and instead just let it happen.
  4. Allowing others to help and love you does not make you a weak person, it makes you human.
  5. The more love you give, the more love you get in return.
  6. There’s no reason to hold onto the past or worry too much about the future—it’s really the right now that matters. Live in the moment.
  7. Being critical and judgmental does not make you feel better in the long run. It actually makes you feel worse.
  8. People are who they are—it’s pointless to try to change them. It’s easier to just love them.
  9. Wanting what you have is way better than trying to have what you want.
  10. Although having money is great, feeling gratitude for all of the “insignificant” things in our lives makes us far richer than any amount of money ever could.
  11. Never take anyone for granted.
  12. Laughter and tears are equally important.
  13. LOVE, LOVE, LOVE and then LOVE some more. Then TELL those people how much you love them.

I am so grateful for all of you who read and comment on my blog! I hope this Holiday Season overflows with love, joy and laughter, and…

May the coming year reveal the blessings that are already right there in front of you!

isa xmas tree

She's come a long way!

She’s come a long way!

 

Worth Repeating

15 Nov

As many of you already know, I turned fifty years old this past summer. I’ve always liked the number 50; it feels substantial and important—and I feel as if my feet are planted solidly on the ground for the first time in my life.  When I neared the half-century mark in July, I thought depression would descend down upon me as it had when I turned thirty and then forty, but the day passed like any other; there were no theatrical tantrums or crying jags. Oddly, those feelings of tremendous loss I experienced in the past were nowhere to be found.

Maybe it’s because we calculate so much of our lives with the “whole” being one hundred that turning fifty feels like I’ve only reached at the half-way mark. Perhaps it’s because we’re all living longer these days, and there’s a pretty good chance that I’ll be around for the next fifty years. Most likely though, it’s that I finally realized that there’s just no going back or going forward—it’s the right now that matters most. By being totally absorbed in each moment, there’s no opportunity for me to latch onto unhappiness. I’ve learned to stop fighting my path and just allow what’s going to happen to happen.

Before you read on, I’ll beg your forgiveness in advance, because I’m just about to repeat myself for the umpteenth time. Please not again, you’re thinking. So her daughter got cancer and she went through some huge transformation and now she’s finally happy—enough already! Can’t she find something else to write about?

Sorry, but this stuff needs to be repeated.

If you’ve read my blog, you’ll see that the central theme that runs through many of my posts is that I allowed my negative childhood experiences to mold me into a fearful woman who never believed in or loved herself enough. I wasted most of my life allowing that insecurity and sense of worthlessness to establish itself so firmly into my psyche that any seed of gratitude was powerless to sprout, no matter what type of nourishment was offered for its growth.

Dissatisfaction is a greedy beast and will steal your life away before you know it. There are huge chunks of time that have been lost to me—mainly those years when my three older children were very young. Seriously, if you ask me what happened between 1989 and 2004, I won’t be able to tell you much, except that I spent most of that time feeling worried, dissatisfied, and believing the lie that I was unlovable. I hardly remember interacting or playing with my children during that period—probably because I rarely did. Thank God for photo albums, because in those albums is the only proof that I was physically there, going through the motions: cooking the holiday meals, planning the birthday parties, helping with the homework. My children reaped the benefits of my being a good mother, but because I wasn’t thoroughly present for any of it, I’m the one who lost out in the end.

Nora, Nino and Leah at Christmas 1996. I wish I could remember it more clearly.

But life is often generous with second chances. When I was forty-two, I received a huge surprise: I became pregnant with my youngest daughter, Isa. Although I was terrified of this unplanned pregnancy so late in my life, I remember thinking that this baby offered me my final chance to get it right. Her birth was such a joyous occasion—the entire family was present as she came into this world squawking like a magpie with a cap of thick black hair covering her head. As I looked into her solemn eyes, I promised myself that I wouldn’t miss out a single moment with this child. I would treasure every minute I had with Isa, and enjoy each one of her milestones with utter delight.

Isa on my chest seconds after her birth

But old habits are so terribly hard to break. Before long, I found myself slipping back into those same patterns of not feeling fulfilled.  Like black mold stealthily growing behind the bedroom wall, those poisonous thoughts once again crept into my consciousness, brainwashing me into thinking that there should have been much more to life than changing diapers, doing laundry and picking up after everyone’s messes. I began to tire of my piano teaching career—it soon became a mundane chore where I perceived only that my students didn’t practice enough nor performed up to my expectations.

My discontent didn’t stop there. Although I loved my husband, I never allowed myself to really understand his point of view—I was the one who was always right and I would not give an inch to compromise. Even though my three older children excelled in all areas, to me, their successes were never quite good enough. Each day I would wake filled with a pervasive anxiety that we never had and never will have sufficient money to pay the bills, let alone go on a vacation. I was exhausted, angry and stuffing my feelings down by constant overeating. I gained over fifty pounds. I let all my good intentions slide, and once again began to distance myself from my present existence— constantly imagining a future that was better than the life I had in right in front of me.

Then the worst thing happened or as I know now, the best thing happened. I had to choose which one it was, and miraculously, I chose the latter. Well, you know the rest of the story… Isa got cancer, and I got another chance.

So fast forward five years. Everything is different. Although I still have to fight off the demons of dissatisfaction at times, I let those negative feelings waft through my brain like lingering cigarette smoke—it temporarily reeks, but after awhile it dissipates into the breeze. It has no chance to stink up my life because there is just too much fresh air circulating around for it to survive for very long.

I now take pleasure in the smallest, most insignificant things: folding a load of laundry fresh from the dryer while watching Modern Family; inhaling the fragrant scent of Isa’s just washed hair as I brush it in the morning before she leaves for school; a late night phone call from Leah wondering how my day went; the sound of Nora reading Harry Potter to Isa before bed; Nino laughing hysterically at one of my stupid jokes; listening to one of my piano students shape a musical phrase with such lyricism that I almost want to cry; and holding hands with my husband of twenty-five years in a darkened movie theater.

Before my last chance, these things meant nothing. Now they are everything. And the joy just keeps growing.

And that is why I keep repeating myself.

Because that, my friends, is the key to a happy life.

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/

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!

Riding the Waves

14 Jun

My seven year-old daughter is Hanging Ten this week. The soggy gray drizzle of Santa Barbara’s typical June weather doesn’t discourage my little brown “Wahine” as she dons a miniature wet suit and wades into the frigid Pacific Ocean. Spread with a thick layer of sunscreen and a light dusting of sand on her cinnamon skin, she is as delicious as a warm sugar bun fresh from the oven. Isa giggles and shrieks with delight as the foamy tide hungrily swallows up her feet and as I watch her leap and dance upon the shore I’m so full of gratitude that my heart physically hurts.

This week, Isa gets to do something for which I would never consider paying good money for her to learn to do: SURF. Don’t get me wrong—I’m a California girl born and raised, and I most certainly do appreciate the sport (or art form) of surfing—it’s just that the $400 for five days of surf camp isn’t something our budget can realistically handle at the moment.

The most wonderful and marvelous detail about this story is that I don’t have to pay for surf camp—Isa gets to participate in this camp for free. She gets this opportunity because when she was two and a half years old, she came close to losing her life to cancer, and surf camp is just one of the many “cancer perks” she has received since her diagnosis over five years ago.

All of you know that cancer (especially when kids get it) is mostly evil and rotten and torturous, but as I’ve reiterated since the start of our wild journey into the world of pediatric cancer, it’s also responsible for bringing beauty and kindness and love into the lives of patients and their families. One of the most moving aspects of being thrown into this whole cancer mess is discovering how many people out there are willing to help make your life easier. This week, the Teddy Bear Cancer Foundation and Surf Happens of Santa Barbara have stepped up for us, sponsoring Isa for a week of surf camp so that she can climb up on a surfboard and ride a wave for the very first time in her life.

Now, over the past five years, I’ve learned to appreciate these “cancer perks” that have been generously given to Isa and the rest of our family since she was  diagnosed with her leukemia. I first heard the term, “cancer perks” from writer John Green, whose teenage characters in his novel The Fault in Our Stars discuss the various perks they receive because they are fighting cancer. (I highly recommend reading this poignant, yet often hilarious love story if you want to understand a little more about how life-changing pediatric cancer can be, not only for the patient but for the entire family as well.)

Some of the “cancer perks” our family has received over the past few years are: financial support during Isa’s initial hospitalization, loads of fun parties, free tickets to events, weekend family camps and presents too numerous to even count. Let’s not forget the Big Kahuna perk—the all expenses-paid trip to Disneyworld (Thank you, Make-a-Wish Foundation for an experience our family will never forget.) We’ve accepted these gifts with great appreciation and gratitude, but now that Isa is coming up on her five year anniversary of complete remission, the idea that we should still be receiving “cancer perks” weighs on my mind quite a bit. The internal struggle I’ve been facing is that I wonder if it’s still all right for Isa to get free stuff even if she’s going to be considered cured in a few short months?

You may not realize it, but a ton of guilt attaches itself to a family of a cancer survivor. Bottom line is that your child is alive, while some of your friends’ children have died. The guilt that comes with this experience is often wrenching (although I know our pain is only a minute fraction of the pain that my friends feel after having lost their child.) Then there’s the guilt you feel when your child is done with her treatment and is now living a happy and healthy life, while other children are suffering through their chemotherapy and are constantly miserable. You are beyond elated that your child made it and want to shout it to the mountaintops, but feel the need to keep it to yourself so as not to make anyone feel too badly that they’re still in the thick of it.

A few weeks ago Isa and I attended the annual “Family Fun Day” event put on by The Teddy Bear Cancer Foundation. It’s a chance for families to get together at a ranch in our local mountains and just relax and have fun with other families who have children battling cancer. I was surprised to have met so many new families whose children have recently been diagnosed, and as I watched the parents interact with their kids, I could see the fear in their eyes, even though they were smiling and laughing and acting as if they were having a good time.

I know exactly how they feel—how their world has shrunk into a place where you only think about cancer and treatment and worry and fear; a world where you carry plastic bottles of hand sanitizer everywhere you go to kill any microscopic germs that may infect and sicken your immune-suppressed child; a world where you try to get your kid to eat even a tiny bit of healthy food even though they shake their heads and cry and tell you that they’re not hungry.

I talked to a few parents whose children have been diagnosed with the same leukemia that Isa had. I remember when Isa first got sick, any story of survival gave me the faith I needed to get through another day, so my hope is that by relating our happy ending to them, they are comforted by the fact that if my child survived, theirs will too.

I guess I’ve just answered my own question about whether or not it’s all right for us to still be receiving “cancer perks.” Of course it is. Our role is that of cancer warriors—if we beat it, then so can you. If our presence offers hope to others, then accepting perks like surf camp is the right thing to do.  If we turn our sad story into a triumphant one,  then perhaps the guilt can be left behind.

I believe that because Isa had cancer, she will never again be just an ordinary girl. Her cancer experience has turned her into something special because she’s a survivor and for this reason alone, she’s a bright light of hope for those families who are waiting and watching as their own child goes through treatment. It’s our responsibility to do whatever we can to ease the pain of others who find themselves navigating helplessly through the rough waters of pediatric cancer.

My sweet little bald Isa.

I’ll never forget that I was once caught in that storm, feeling as if I was about to capsize without a lifejacket. Even today, I think about cancer every morning when I run the hairbrush through Isa’s long, tangled hair while she whines and complains that I’m such a mean mommy to be hurting her this way, and I remember the time when there was nothing growing on her bald little head. I think about cancer when she comes home from school and runs into my piano studio to kiss me hello and gushes on about what her teacher taught her, or what her best friend said, and these seemingly mundane moments make me happier than I ever thought I could be.  I think about cancer when I tuck her in at night and kiss her smooth cheeks, and I no longer have to force her to swallow four different kinds of chemotherapy pills before she drifts off to sleep.

I’m not able to leave the cancer world behind because as I’ve said so many times before, I don’t want to. Isa’s cancer has helped turn me into the person I needed to become. I refuse to stop thinking about cancer because if I do, I might lapse back into that woman who I used to be—the one who was ungrateful and disappointed and dissatisfied for so long—the one who used to stand on the beach and moan and groan about the sand and the tar and the freezing water.

I realize now that I’m lucky to be where I am today. All of that pain and suffering that our family went through has made me aware that the beauty and magnificence of life is hurtling down upon us every minute of every day, just like those perfect green waves that form and curl, and then break upon the shoreline, never resting, never stopping, never giving up.

So I’ll take the “cancer perks” for as long as they’re offered, and in turn, I’ll be right there, holding Isa’s hand as we stand on the beach, the frothy waves crashing over our feet, our presence there offering absolute proof to others that anything is possible.