Tag Archives: leukemia

Ten Junes

30 May

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June is almost here and I’ve begun to feel it—that sense of giddy anticipation for the coming summer. All the signs are here—the misty fog banks that hug the coast, the scent of jasmine in the air when I open the front door; the ruffled towers of purple delphinium that sway in the offshore breezes that slip in off the Pacific.

Since I was a girl I’ve associated June with happy affairs—a long vacation from school, the prospect of lazy days spent at the beach, a new part time job—the thrill of a budding summer romance. June was always filled with a sense of endless possibility and hope.

Then in 2007, June turned on me. It became the month my daughter, Isa was diagnosed with leukemia.

Exactly ten years have passed since Isa’s diagnosis of cancer, when the perfect month of June lost its allure and became a time associated with doctors, nurses and hospitals; with antibiotic cocktails, blood transfusions and chemotherapy. When June became a time saturated with anxiety as my two year-old developed an angry rash all over her body and suddenly stopped eating because her mouth was filled with painful sores. June was raging fevers, sweat-soaked hospital sheets and sleepless nights. June was spending our twentieth wedding anniversary in an isolated hospital room watching our daughter suffer. June was thinking Isa could die.

isa bald

Isa  in the hospital on her third birthday.

But June turned out to be other things, as well. It was the wisdom of the doctors and the compassion of the nurses who held our hands, loved our daughter and reassured us that Isa would be all right. It was when our family, friends and community gave us their unconditional support through selfless acts of kindness—big and small. June was when we received that phone call from the doctor telling us that Isa had responded rapidly to the chemotherapy and was in remission.

Ten years.

In a few weeks, Isa will graduate from sixth grade. Like the jasmine that grows outside my front door, Isa has blossomed into a beautiful young girl—outgoing, smart, funny and most importantly, kind. Today she is considered cured and shows no residual effects from the chemotherapy.

As I stand on my front porch and look out at my garden, I realize the anxiety I carried for so long is gone. I am no longer afraid. Isa is still here with us and for this I am forever grateful. As summer stretches out before me, I feel only wonder for the possibility of what is to come.

June has come back to me.

 

Isa in a commercial for Santa Barbara Cottage Children’s Hospital

 

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…

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isa on horse

IMG_0758 Isa Mireles 4-26-13 - Copy

To this.

Here I Go Again

13 Sep
The peaceful surroundings at Camp Reach for the Stars in Ojai, CA

The peaceful surroundings at Camp Reach for the Stars in Ojai, CA

I never expected to see Alice* again. Our family had met her over five years ago when our daughter Isa was first diagnosed with leukemia at the age of two and a half.

Shortly after Isa’s diagnosis we were invited to attend the American Cancer Society’s Camp Reach for the Stars—a weekend long outdoor camp for families who have a child with cancer or a child who has survived cancer. It’s an opportunity to relax and have fun with other families who have walked in your shoes; who know exactly what you’re going through and because of their experiences, can offer you hope that your child will make it through treatment and be well enough to come back the following year. Camp Reach for the Stars is where we first met Alice over six years ago.

Isa after getting her face painted

Isa after getting her face painted

The weekend camp experience is full of fun activities—swimming, hiking, zip-lining, arts and crafts, movie night and a talent show. Every child is assigned their own personal counselor so the parents can relax by themselves, have a massage, or just lounge by the pool. Three times a day when the bell rings, we all hike up the hill to the dining hall and enjoy delicious home-cooked food and great company. Over the years, we’ve all become one big family. Since we began attending camp six years ago, Alice has always been a vital presence at camp—her goofy sense of humor and loving spirit always managed put a smile on our faces no matter how discouraged we felt.

Leah and Camp Director Amanda

Leah and Camp Director Amanda

But last year, at the end of camp when everyone gathered around the fire pit for the closing ceremonies, Alice’s mother, choked up from the tears she could no longer hold back, told us that this would most likely be the last time they would be bringing their daughter to camp. A few days earlier they had found out that Alice’s cancer had relapsed for the fourth time since she was first diagnosed at the age of nine. There was little hope that any kind of treatment would get rid of the insidious tumor that had wrapped itself around her heart. Our entire family was devastated by this news. All I could think was that I couldn’t bear the thought of coming back to camp without Alice being there.

The thing is, once your kid gets diagnosed with cancer, whether you want it or not, cancer becomes a huge part of your life. It’s like receiving a lifetime membership to the cancer club. You end up meeting and becoming friends with many families who have had to deal with a child battling cancer. This can be excruciating at times because sometimes these children whom you meet and end up loving die from their cancer. You realize you have to do everything in your power to help find a cure so that more of these children don’t die.

Isa and Nora performing in the talent show

Isa and Nora performing in the talent show

So here I go again. It’s September, which means it is PEDIATRIC CANCER AWARENESS month and it’s time for me to talk about pediatric cancer again. Oh no—not again, you say. Isn’t she tired of writing about cancer yet?

Well to be honest, the answer is YES. Yes, I am tired of writing about cancer. In fact, I’d prefer to not write about it at all. I’d prefer not to hear about children who are newly diagnosed. I’d prefer not to see photographs posted on Facebook memorializing children who are no longer alive because cancer has taken their lives. I’d prefer not to see the agonizing fear in the face of another parent who is terrified about what’s going to happen to their child.

I’d prefer that pediatric cancer be wiped off the face of the earth.

But since that’s not about to happen anytime soon, I figure it’s best to keep talking about it and writing about it as much as possible with the idea in mind that perhaps someone reading this will begin to realize that more and more children are diagnosed with pediatric cancer every day, and that one day it might just be them or someone close to them who is directly affected by this disease. And maybe—just maybe, this awareness will prompt them to act in some small way to make a change—whether it be raising money for research, helping out a family in need, or simply just having a conversation about pediatric cancer from time to time. I truly believe that simply talking about something important can incite change, even in a very small way.

Last weekend, our family attended our sixth Camp Reach for the Stars. Our two oldest daughters, Nora and Leah volunteered as counselors for the camp. We had a marvelous time hanging out with everyone, laughing; eating, joking—especially with Alice. Yes—Alice was there. She was back at camp in all her glory, with no sign of cancer in her body whatsoever. The radiation zapped that tumor into smithereens and now it’s nothing more than a hazy image on an MRI filed away in some doctor’s office.

So let’s keep the conversation going. Let’s work to find a cure. It’s true that children do die from cancer, but this time, whether you believe it a miracle occurred or not, one child did not die.

There is always hope.

See you next year, Alice!

*I’ve changed her name to protect her privacy

Out of the Darkness

9 May

isa and me in hospitalThis morning, I was interviewed on K-Lite Radio for Santa Barbara’s Cottage Children’s Hospital. To most people, I’m sure it was no big deal, just a mother talking about her young daughter’s cancer experience to encourage listeners to donate to the local hospital where she was treated and cured.

And it really wasn’t a big deal, except that it was. Because, almost six years later, after my life has spun itself into a comfortable pattern of normalcy, I’m compelled to remember those dark days by once again sharing my story with others.

Over the past few years I’ve become quite adept at weaving those painful memories into the back of my mind like a skilled seamstress who has managed to hide that dark strand of yarn underneath the clean white stitches. But by reliving those frightening first days in the hospital, I’m obliged to unravel the memories and bring them back to the surface again.

I’m wise enough now to realize those memories are a gift; the surgeries and the blood transfusions; the unimaginable pain of witnessing a two year old suffer through chemotherapy treatments; watching Isa lose her hair until there was nothing left but a smooth dome of skin; seeing her belly bloat from the steroids; waking up in the middle of the night to touch her puffy cheeks to check for a fever; the overwhelming feeling of fear in my stomach that never went away; and all the while wondering if my baby was going to die.

Because if I don’t remember, I will return to the way I was before Isa got sick, when life was not as miraculous as it is today. These memories remind that I have to let go of what is not important.  I have to be thankful that my little girl is healthy and beautiful and that she is still here with me. I have to remember that what I have right now in this very moment is enough, and that my gratitude has the power to disentangle those little worries that I so expertly knit together into a tangled ball of dissatisfaction.

I have to remember the joy of coming out of the darkness and into the light.

Happy and healthy at eight years old.

Happy and healthy at eight years old.

Because of Daisy

17 Feb

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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!

 

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.

A Different Outcome

21 Feb

It’s difficult to believe that an entire year has passed since Lexi Krasnoff died from her leukemia. I’m re-posting this in honor of her precious memory. She will never be forgotten.

Lexi Krasnoff died on a Friday afternoon at four thirty. It had been a glorious Santa Barbara day—the kind of day when we forget that we’re still in the middle of February. A soft breeze drifted through the newly budding trees and pointed its finger in the direction of spring. It was the kind of day when the air was scented with a hit of early blooming flowers, offering a sense of anticipation and hope for what was ahead. It was not a day when a beautiful and precious three year-old girl should have died.

But there’s never a day when it’s tolerable for a child to die.

When I told my seven year-old daughter that her little friend, Lexi had died, she didn’t believe me at first.

“Isa,” I told her, pulling her onto my lap. “I’m so very sorry to have to tell you that Lexi died this afternoon.”

She stared at me with a half smile on her face. “No she didn’t, Mommy—you’re just kidding around with me!”

My eyes filled as I choked out the words. “No, Honey—I’m not joking. Lexi died a few hours ago. I’m so sorry, sweetie.” I cradled my daughter’s warm body to mine and cried into her sweet-smelling neck.

She pulled away from me. She still didn’t believe me. “Mommy, Lexi didn’t die! That’s not funny!”

I took her by her shoulders and looked into her face. My voice cracked.

“Isa—I’m sorry, but it’s really true. Lexi was very sick and her little body couldn’t fight the leukemia anymore and she died a little while ago at the hospital.”

She saw the tears on my cheeks and finally realized I was telling her the truth. And then she began to sob. I’d never seen Isa this upset before. She cried uncontrollably for almost an hour and there was nothing I could to do to console my daughter. Her friend was gone.

Lexi and Isa three weeks before she died.

What I admire most about Lexi’s mother, Kat is that she never gave up hope that Lexi would make it. She spent day after day in a hospital room waiting for her daughter to get well again. When Lexi was moved to the pediatric intensive care unit, she became a mother lion who would not stand for tears or sad faces from visitors because that meant they did not have hope.  As she watched and waited while the leukemia ravaged her daughter’s little body, I know she held onto that hope until the very last moment.

Since I learned of Lexi’s death, a sensation of pressure has been building in my chest like a vice has been carefully positioned on either side of my lungs. It squeezes a little tighter every day, making it more difficult to take a deep breath. I thought my bouts of tears would help loosen the tightness in my chest, but it’s not going away. It sits there—rock hard and unbreakable, making my heart feel heavy and my body fatigued.

At first I thought it was only the grief and sadness over losing Lexi that was filling up my chest and clouding my thoughts with despair.  After all, Lexi was an extraordinary little girl who charmed me and everyone else around her with her sweet smile and sassy personality. She was special, and it wasn’t just because she had cancer—from what I’ve heard from her family and friends, she was born that way. I feel a deep sadness about her death that weighs heavily on me, but it’s more than that—the pain I feel is mixed with an emotion which burdens me in a more profound sense: I feel guilty.

Isa at Lexi’s memorial.

I feel guilty because by some luck of the draw, my daughter lived, and Kat’s daughter did not. Although I’m filled with an unending gratitude that Isa is still here with us, I’ve become fully aware of the unfairness of Lexi’s death. I also know that what I’m experiencing is “survivor’s guilt” and that it’s a common emotion for parents of children who survive their cancer.

Isa’s oncologist warned me about this condition four years ago after a little boy named Jeffrey died of the exact type of leukemia that killed Lexi. We had befriended Jeffrey and his family in the hospital when Isa was first diagnosed, and our families developed a bond that only families with children suffering cancer can form. When Jeffrey relapsed and died, it was a crushing blow to our entire family. The intense fear that I felt about Jeffrey’s death caused my panic level to rise to a fever pitch because it made the possibility of Isa’s death that much more real. If it happened to Jeffrey, it could happen to Isa.

I remember feeling guilty that Isa was doing relatively well during her illness, but because I was in the throes of her treatment and so terrified of losing her, I set aside those feelings of guilt and placed my complete focus on taking care of my daughter. For my own psychological survival, I had to shut myself down. At that time, I didn’t think about how unfair Jeffrey’s death was. I convinced myself that there was some predetermined reason for our friends to lose their only son to this horrible disease, and that someday we would all realize the good that came from it. I shoved all of those intense feelings of guilt and loss into a hidden chamber in my heart and left them there, unresolved and festering like bacteria growing in a Petri dish.

So here I am again, in the same place I was after Jeffrey’s death, but the difference is that now Isa is healthy, and I’m strong enough to face the pain and the guilt about Lexi’s death. This is why I’m walking around in a daze and can’t snap out of it. This is why my heart hurts so much. I finally understand the unfairness of it all and I feel the pain to the core of my being. I wish there was something—anything—that I could do to take Kat’s suffering away, but I know that no matter what I say or do, it will never be enough.

Caleb, Jonathan, Kat and Lexi Krasnoff

What I hold close in my heart is the knowledge that Lexi brought so much love into this world during her short life. I saw how much the doctors and nurses at the hospital loved having her as their patient. I witnessed it at her memorial service when her father spoke about how Lexi was his best friend. I listened when her grandfather talked about how Lexi taught him what pure love was. I cried when one of Lexi’s neighborhood friends got up in front of all those people in the church and sang a song dedicated to her. Finally, I watched as hundreds of people let go of pink balloons into the clouds above, on each one a personal message written to this sweet little girl who died too soon. Lexi, just by being who she was, had managed to change them forever.

Messages sent to Lexi

But I also realize that it’s not fair that the world doesn’t get to watch this adorable little girl with the big brown eyes and pouty lips grow up into a sparkling young woman full of life. It’s not fair that my daughter lost her little friend to cancer. It’s not fair that Lexi’s little brother Caleb will never know his big sister.  It’s not fair that I get to watch Isa grow and learn and play and dance and laugh and go to college and get married and have children and Lexi’s parents do not get to watch their daughter do these same things. I’m sad and sick and angry about this. Why do I get it all and they don’t?

Pam, the nurse (and close friend) who has helped take care of Isa these past four years helped put things into perspective for me. She told me that it’s normal to feel guilty when your child survives cancer when other children die. She said that my experience dealing with Isa’s cancer is every bit as painful and life-changing as that of a parent whose child has died from this insidious disease.

“In your mind’s eye,” Pam told me, “you probably watched Isa die and may have may have even planned her funeral—every parent who has a child with a life-threatening illness goes to that dark place, so your pain is just as weighty as anyone else’s. From what you’ve been through, you know intimately how that pain feels. It’s just that you had a different outcome.”

Yes, my outcome was different—I was one of the lucky ones.  And I’m sure the guilt will stay with me, but it’s imperative that I feel it and deal with it and not run away from it. It’s important for me to use my experiences to help others should they need it. I know that it’s my responsibility to offer my love and support to those families who will benefit from hearing my story, because I was one of the ones who had a different outcome.

No matter what happens, every parent who has a child with cancer needs to know that Isa made it, because then they can have the hope that their own child will survive. Hope is really the essence of life, and the one thing we all can hang onto. Hope is what kept Kat going until Lexi took her last breath.

And yes, it’s true that sometimes children die from their cancer.

But sometimes, they don’t.