Here I Go Again

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

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

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

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

Cancer Causes Love

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/