Tag Archives: pediatric cancer

Letting it Out

9 Apr

photo (28)You may have noticed that I haven’t been posting on my blog as much as I have in the past, which I sincerely hope you don’t think is a good thing because that would be a definite blow to my already fragile ego.

I remember when I first starting blogging, I was so in the writing zone—I would post something every few days—my brain was constantly popping with ideas. After a while the posts went down to once a week, twice a month, and then finally whittling down to once a month if at all. You get the picture.

There are several reasons I’m not posting as often. Primarily, it’s because I’m spending what little time I can carve out of my busy day to work on my novel—which, I’ve just begun to realize, is going to take way longer than I thought. I’m up to twenty eight chapters with no end in sight. I never would have thought that writing a novel would consume me so deeply. It’s a very strange process where I feel like my characters are these horrible, rebellious little people stuck in my brain, fighting with all of their might to come out while gleefully taking me down in the process. I hate them at times but mostly I love them.

I’ve also stopped blogging as much because the truth is that I’ve begun to bore myself by writing about the same topics over and over. God knows that if I’m boring myself, I can only imagine how you feel. I can even hear your voices in my head: Please stop making me cry with sad stories of kids with cancer, or For god’s sake, stop going on and on about how happy you are now that you’ve hit fifty and I swear if you post one more picture of your flower garden I will come over and personally drive my car right over your flower beds. I know, right? Sorry. Even as I write this, I’m realizing that these words sound strangely familiar which means I’ve  probably already written this exact post somewhere in the not too distant past. I’d go back and read through the archives to find it, but I’m way too tired to check.

The writing process is often agonizing. Lately I find myself trapped in these moods where nothing is ever right and all I do is moan and groan and complain and try to blame it on my husband or my kids or on the hormone situation (another topic beaten to death) and then I realize that I’m most likely grumpy because I need to let something out and the way I do that is by writing and sharing it with others. Through the act of writing I feel alive and connected with the outside world and even if it’s just a photo on Instagram, a line or two on Facebook (or Twitter, which I’m only now getting the hang of) or an essay on my blog, I feel more alive after hitting  the “publish” or “share” button. If just writing a post on my blog makes me feel so satisfied, I can only imagine the high of publishing an actual novel, so I’m going to keep at it no matter how long it takes.

Talk about good timing. Yesterday, writer Elizabeth Gilbert posted this on her Facebook page and it totally resonated with me. Here is an excerpt:

I am a writer. If I have a story in me that I’m not able to tell, things will start going wrong all over my life. If I have a story in my head and I tell it, “I’ll get to you in 2015,” that story will start to rebel, start to act out, start to claw at the walls. That’s when the shit gets dark in my world. 

Because having a creative mind is something like owning a Border terrier; it needs a job.  And if you don’t give it a job, it will INVENT a job (which will involve tearing something up.) Which why I have learned over the years that if I am not actively creating something, chances are I am about to start actively destroying something. 

And that ain’t good.

I believe that readers don’t need good writers, although that’s always a plus. The truth is it’s the writers who need good readers. Someone  probably already wrote that somewhere and I should find out who it is and give them their due credit, but I’m way too tired to check.

Life can be crazy at times and I’m often too tired to do a lot of things, but I’m not too tired to tell you something important: I appreciate you for being my good reader. Because without you, I can’t share who I am, and then all kinds of chaos breaks out inside my head.

And that ain’t good.

Another shot of my flower garden. It's just too pretty not to share.

Another shot of my flower garden. It’s just too pretty not to share.

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

Time to Remember

23 Oct

I almost didn’t do it.

Halloween will be here soon, and we had already decorated the front porch with strands of cottony spider webs and dangling skeletons. We’ve been planning our costumes for weeks now and a tiny witch’s costume and black hat dangle spookily in the closet when it’s not being tried on over and over again. Bright orange pumpkins, swollen with seeds, sit on the hearth waiting to be hollowed out and turned into grimacing goblins.

It’s that season again, when the days shorten and the change of light paints shadow pictures on the sidewalks as the sun settles lower in the sky. I knew that there was still one thing left to be done, but I thought that I just didn’t want to do it again this year. My husband, Rene still hadn’t brought it up, so I figured that we just weren’t going to get around to it.

Selfishly, I was relieved that he hadn’t said anything, because I just didn’t feel like digging through the shed to look for all the boxes. The thought of having to sift through all of the stuff was more than just a bit overwhelming. Besideswhy do I always have to be the one who does everything around here?

Then last Saturday evening, my oldest daughter, Nora said, “Mom, I’m going to set up the altar—want to help?” and I suddenly realized that I did want to help.

We moved tables and covered them with white cloths; we emptied boxes of candles and vases and arranged them around the centerpiece of a grinning papier-mâché skull. My daughter Isa and her best friend, Tali helped tape tissue paper onto an arch that stretched across the window in a rainbow of pink, orange and yellow flowers. Lastly and most importantly, we lovingly dusted off the photographs and placed them on the altar. The following day, we took a trip to the farmer’s market and bought bunches of fresh marigolds and gladioli and came home and filled up the vases.

Isa and Tali helping to set up the altar.

The altar was ready for Dia de los Muertos. It’s time to remember.

I’d been trying to ignore the importance of this celebration because I’d been thinking all along that it’s only for Rene that we do it each year. After all, it’s his Mexican culture, not mine.  Yet in the process setting up the altar; through the act of looking at all the photographs of the people who have died and really thinking about them, I always realize how important this celebration is to me.

Time has a way of robbing us of that deep connection we once had with our loved ones, no matter how devastating their deaths were to us. People die—even children die—and yet somehow life manages to continue on no matter what. Our memories fade and those of us who are still here on this earth tend to let those memories slip into the recesses of our consciousness. As we move on with our lives, we forget to remember. And in forgetting, we lose that sense of emotional connection that we once held so deeply in our hearts.

I want to remember these people because in doing so, they continue to stay alive.

Lexi died last February, so this is the first time she's been placed on our altar.

Lexi Krasnoff died last February, so this is the first time she’s been placed on our altar.

Rosie Chavez was a star who still shines brightly on our altar. We left her some red lollipops.

Michael “T.T” McGrew and Jessi Modeen both died from their cancer. I never met Jessi, but found out after Isa was diagnosed that her mother, Denise used to live three houses down from us and I babysat her when she was a child. She always loved my name, and gave it to Jessi when she was born.

It’s impossible to forget little Jeffrey Zamora! Rene’s parents, Herlinda and Elias Mireles watch over him in the background.

Our altar at night with all of the candles lit. My dad is right above the skull.

Our precious Gillian Winters.

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.

Waiting

6 Jan

Two beautiful ladies: Kat and Lexi

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

When your child has cancer, you wait.

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

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

Lexi in the hospital.

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

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

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

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

Lexi, before her diagnosis of leukemia.

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

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

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

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

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

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

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

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

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

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

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

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

Mommy and Isa at the beach, December 2011

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

Isa today, hair all grown back.

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

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

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

A mother will wait for as long as it takes.

Lexi and Kat at the Teddy Bear Cancer Foundation Christmas Party

Transformation

11 Oct

    

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

She has leukemia.

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

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

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

She thinks only of wanting to live.

Terri Toon in her senior yearbook photo

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

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

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

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

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

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

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

She was only seventeen years old.

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

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

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

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

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

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

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

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

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

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

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

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

Olivia Lafferty during her treatment for cancer

 Adaptation

       By Olivia Lafferty

I have known life, I have felt death,

I remember the beeping of poison machines

All of it surging through my veins,

Killing me, saving me, changing me

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

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

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

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

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

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

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

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

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

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

Then, it STOPPED

And I stopped pretending that I felt nothing,

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

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

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

She is dead to me, the poison killed her

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

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

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

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

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

Olivia, expressing herself through her art

Olivia, today, wearing her Dos Pueblos Chargers shirt

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