Tag Archives: Santa Barbara Cottage Children’s Hospital

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.

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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

 

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.

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/