Archive | January, 2012

Gillian’s Heart

17 Jan

Princess Gillian Margaret Winters

Right after my daughter Isa’s leukemia diagnosis, I felt the hospital walls closing in on me. Being isolated in a ten by ten hospital room with a two year-old with cancer is not an ideal situation to say the least. The dread and worry I felt about my daughter’s illness caused me to feel suffocated, like I was wearing a belt around my chest which would cinch tighter each time she cried out in pain, vomited, or spiked another high fever.

Isa had become restless and bored being cooped up in the room. We’d already watched enough Wonder Pets and Sponge Bob to last us a lifetime, so it was up to me to come up with new ideas to entertain a two-year old with an I.V. line tethered to her chest. So I colored, I painted, I read stories, and I played endless games with finger puppets—I’m ashamed to admit I spent more quality time with Isa in those first five days in the hospital than I had with her during her entire two and a half years of life. Once again, I’d let the demands of life steal me away from what’s really important.

I was thinking about what to do next with Isa when I looked up and saw my younger brother, Tony through the window in the door.  He smiled at me through the glass, but it wasn’t a real smile—it was more like a grimace. I could tell he was uneasy and I knew why: the last time he was at the hospital was on that terrible August night five years earlier.

Tony came into the room and handed Isa a present—a toy doctor bag, complete with a tiny stethoscope, syringe, thermometer and blood pressure cuff. She was thrilled with the gift, but her pleasure hardly registered with him. His utter distress at seeing the I.V. line that snaked across the bed into Isa’s chest was not lost on me.

“Jess, you know Mele would be here if she could,” he said, his eyes darting around the room at all of the machines.  “But it’s just too much for her to handle to come back to this hospital.”

He reached up with his hand and rubbed the bridge of his nose.

“Especially in these circumstances,” he said. “After what happened with Gillian and everything….it would just be too devastating if something happened to Isa.”

I immediately cast his comment out of my head like a door slamming shut. Nothing bad will happen to Isa—it will not be like Gillian.

While Isa played with the doctor bag we talked quietly about her prognosis and treatment for a few minutes until Tony stood up abruptly and grabbed me in a bear hug.

“Sorry, Jess,” he said, “I’ve got to get out of here. This place just has too many bad memories.” The sorrow in his heart poured out of his chest and into mine—we were connected in a way that to this day, I still can’t explain. He let go of me and I could see the tears in his eyes.

My little brother caressed my daughter’s cheek with his fingertips and then he was gone.

My brother, Tony holding Gillian.

I wasn’t angry that he only stayed for five minutes. I could only imagine how difficult it was for him to come back to the hospital in the first place. With Isa’s life at risk, I could more closely imagine the fear and pain he went through the last time we were all gathered together at the same hospital.

The night his only child, Gillian, died.

I have many regrets about how I treated Gillian, but the one thing that I’m thankful for is that I let her help me make those oatmeal cookies that one last time. Normally, I would have been annoyed that she wanted to help me—she would have heard the irritation in my voice as I said, “Gillian, let me do this. You go and play—go watch cartoons or something. Let Auntie Jessie do it.”

I would have been unkind to Gillian because her behavior made me feel edgy—probably because I didn’t have the power to control her. And I was a big fan of being in control.

My niece, Gillian Margaret Winters was born on Valentine’s Day.  This is undoubtedly why she was filled with an unbridled love for everyone around her. Gillian even looked like a Valentine’s cherub—put wings on her back, hand her a bow and arrow—she’d be a ringer for Cupid any day. Gillian was also obsessed with the color pink.

Pink was her color of choice for everything—her bedroom was a vision of bubble gum pink, the walls stenciled with magenta hearts. She loved pink girly things: dolls, dress-up clothes, stuffed animals; you name it. Gillian was certainly meant to be a princess, or perhaps a Barbie stand in, because she had the taste and style that fit perfectly with the colorful job description of either of these titles. She adored Disney movies, especially those that had to do with princesses or fairies.

Gillian with Minnie at her favorite place on earth.

Gillian, or “Jelly Bean” as we often called her, was what you’d describe as a free spirit—or to me, spoiled and uncontrollable. She was my brother’s only child and she most certainly called the shots. She had a difficult time following instructions and always wanted to do things her way.

As an energetic six year-old, she would dart mischievously from one thing to the next, constantly leaving a mess in her wake. She loved to play more than anything, and her active imagination was always as work creating stories in her head. When she begged her parents for a baby brother and it didn’t happen, she made up an imaginary little brother whom she named Josh, who was always excellent company when she had no one to play with.

My brother and sister in law were the “laid-back” type of parents who gave Gillian the freedom to explore life, and they allowed her to express herself in ways that I never did with my own kids. I wasn’t comfortable with Gillian’s willful behavior, as my husband and I tended to be stricter and more controlling with our own children. My kids were calm and obedient and Gillian wasn’t. She didn’t fit into my neat little box of how children should behave.

I guess I resented Gillian for her lack of self-control, which in hindsight I realize how ridiculous my attitude was because she was just a child. Because of my hardheadedness, I never allowed myself to grow close to her. And for the rest of my life I’ll regret that I didn’t open up my heart and accept and love her for who she was.

Inexplicably, on that hot August afternoon when Gillian and my brother came over to swim in our pool, I had a sudden change of heart. I invited her to make oatmeal cookies with me for the first time ever. I wouldn’t have considered doing this usually—I would have avoided the ordeal of making a mess with Gillian at any cost.

But that day, my husband and children were still on vacation in Mexico and wouldn’t be home for another week, and I was lonely. I thought a little girl time was in order.  Gillian was thrilled with the invitation and she sat eagerly at the kitchen table, waiting for my instructions in her bright pink two piece bathing suit which was still damp from the pool. Her face lit up with excitement as her curly hair dripped like little wet ropes onto her shoulders.

I let her measure out the ingredients one by one into the bowl, her brow furrowing as she stirred the batter with a large wooden spoon. She looked like a little sunburned witch as she mixed the ingredients, the sweat beading on her upper lip. She scooped out the sticky dough from the bowl with her chubby fingers, rolled the balls between her palms and placed them on the cookie sheet like she’d been working in a bakery for years.

I didn’t even care that she left a mess on the table—clumps of oatmeal stuck to her fingers as she repeatedly dipped into the bowl for taste after taste of the gooey dough. When the timer on the oven dinged, signaling that the cookies were done, I helped her use the spatula to take them off of the pan and place them on the counter to cool.  The entire time, she was a delightful little angel.

With two tall glasses of cold milk between us, we ate the warm, delicious cookies together, happy and proud of ourselves—Gillian for actually making the cookies, and me, for not becoming annoyed with her during the process. It was a lovely and enjoyable afternoon between an aunt and her niece; something that should have been a common occurrence between us, but hadn’t been because I’d never allowed it to happen before. I don’t know why I was different with her on that hot summer afternoon, but I was.

Wearing pink, of course.

And thank God I was, because it was the last time I would ever see her again.

Two weeks later, while having dinner at the YMCA, at only six and a half years old, Gillian died after choking on a hot dog.

It was a Friday night when we got an odd phone message on our voice mail. It was a friend of Tony and Mele’s and she was talking so fast I could hardly understand her.

“Gillian choked on a hot dog at the YMCA and they’ve taken her to the hospital. I can’t get a hold of Tony or Mele—they’re not answering their cell phones. Please see if you can reach them!”

When we couldn’t reach anyone, our entire family piled into car and we raced north forty miles to the small community hospital where they had taken Gillian. There, a group of my brother’s friends congregated outside the entrance to the emergency room. For a summer evening, it was very cool and everyone huddled together looking stunned. My brother came out and told us they were transferring Gillian to a larger hospital in Santa Barbara, where we had just come from two hours earlier.

Tony and Mele had left Gillian at the YMCA for a program called “Parent’s Night Out” in which people could leave their kids in a supervised environment where activities and dinner are provided for the children so the parents could go out alone together. Tony and Mele had almost decided not to go out that night, but Gillian had insisted that she wanted to go to the Y and play—she loved going there. They dropped her off and went to meet some friends for dinner.

While at dinner, they couldn’t hear their cell phones ringing with all the noise in the restaurant. Afterward, walking to their car, they finally got all of the messages about what had happened to Gillian and they rushed over to the hospital.

That night at the Y, they had served hot dogs for dinner. Gillian, always a fast eater, was also eager to get up and play, so she shoved the last big bite of her hot dog into her mouth and got up to throw her plate in the trash. As she was running to the trash can, she began to choke.  The staff at the Y tried everything they could to dislodge the inhaled food, but nothing worked. Even the paramedics couldn’t get it out.

Sometime during this chaotic chain of events, Gillian threw up and aspirated into her lungs. Later we learned that her heart had stopped three times during the ambulance ride back to Santa Barbara, but the paramedics would not give up on her—they kept bringing her back, again and again; they did everything they could to keep her heart beating.

After arriving at the hospital, Tony and Mele anxiously walked up and down the hallway, still dressed up in their fancy clothes from their dinner date while the doctors worked on Gillian.  The heels of Mele’s black pumps clicked and echoed on the tile floor of hallway as she paced back and forth under the fluorescent lights. The waiting was excruciating.

When you’re in this horrific situation of waiting to find out whether a child you love lives or dies, you vacillate back and forth between the extreme feelings of terror and hope. But I knew it was dire when the ICU doctor came out and asked to speak with Tony and Mele alone in the hallway.

The next thing I saw was Mele walking into the waiting room with this dazed look on her face and her shoulders just sagged.  She whispered, “That’s it… They can’t do anymore. She’s gone.”

Everything went into slow motion. This couldn’t be real. I fell to my hands and knees on the floor as my three children began to weep. My poor mother looked like she was going to pass out. Through the roar in my head, I heard my husband tell my brother how sorry he was—his words were almost unintelligible through his tears.

The sight of my baby brother sliding his back down the wall to the floor with his head in his hands, crying, “Why my little girl?” over and over, in a child-like whimper will be imprinted on my mind forever.

Gillian and Barbie resting with Daddy.

Our family held a memorial for Gillian at our house because she loved to come over and swim and to visit Grandma there. Tony and Mele wanted to keep it simple and informal—so they turned it into a pink party—just what Gillian would’ve ordered.

Hundreds of people showed up. The casino where Tony worked generously paid to have the entire party catered, and we were completely floored by the many people who came to demonstrate their love for Tony and Mele and Gillian. The obituary asked everyone to wear pink in honor of Gillian, and sure enough, they did; some even brought along bouquets of pink roses.

Hundreds of pink helium balloons were tied to the mailboxes that lined our street, and when the party was all over and everyone went home, our family gathered the balloons together in bunches and let them go.  We watched them fly away until they looked like nothing more than little pink jelly beans against the bright blue sky.

When someone dies, it’s always difficult. When a child dies, it’s unbearable. Tony and Mele were like any parents who have lost their child: devastated to the point of going completely insane. They had to do things a parent should never have to do: they had to visit Gillian’s first grade classroom to talk to her classmates about her death; they had to clean out her desk and pick up the belongings that she had left behind; and worst of all, they had to somehow accept that their daughter was never coming back to them.

Inside Gillian’s desk in her classroom, they found an envelope labeled, “Loose Ends” which was used as a place to store assignments that had not been finished. Normally, Gillian’s envelope was stuffed full of incomplete work, but that day, when they cleaned out her desk,  her envelope was empty, like she had purposely taken care of everything before she died.

Tony, Gillian and Mele at Disneyland, where they celebrated her birthday every year.

A few days before her death, she had also insisted to her mom that she wanted to clean the clutter off of her bulletin board in her room; she had never asked to do this before. Tony and Mele felt strangely comforted by these events, like Gillian had somehow known she was going somewhere, and had been preparing for her upcoming journey—as if she had other important and significant things to do elsewhere.

Only a pink heart birthday hat would be acceptable.

A week after Gillian’s death, Tony and Mele decided that they needed to get away; so they got on a plane and took a trip to England to visit Mele’s grandfather. While there, they decided to take a side trip to Paris and see the sights in a vain attempt to take their minds off their grief for a while.

In Paris, on a warm September afternoon, they made the long climb up to the top of the Eiffel Tower. When they reached the pinnacle and looked down, they saw something that they were not able to see when they were on the ground. To their amazement and joy, way down below them was a huge pink heart. To them, had to be a message from Gillian, letting them know that she was all right; that her loving spirit was still present for them, and would stay with them forever.

Three weeks after Tony and Mele returned home from Europe, Mele found out she was pregnant again. The following July, she gave birth to a baby boy and they named him Joshua, the very same name of Gillian’s imaginary little brother—imaginary no more. Gillian finally got her heart’s wish.

After Gillian died, I became a believer that good always comes out of bad. I know this because I experienced such a profound change in myself after her death. I began to see my brother and his wife in a completely different light: that they are incredible people who were able to handle such tragedy with so much grace. After losing Gillian, my heart finally began to open up and an unconditional love for them—the kind of love I always had the potential to feel flowed out of me like a waterfall after a rainstorm.

My relationship with Tony and Mele has changed drastically. I enjoy being in their company now—I look forward to spending time with them. I no longer judge them. So much good came to light after Gillian died, and although I’m devastated that she’s not here with us, I am grateful for the gift she gave me: the knowledge that love and acceptance is what keeps your heart full.

I realized the truth in this even more as I sat there in that hospital room, facing the unknown with my daughter, Isa. I was terrified about what could possibly happen, but still able to feel such gratitude for all of the good things that were presented to me each day. Because Gillian’s death had opened my heart, I was more able to understand the lessons I was being taught.  Within those lessons, the message was and is still clear: it’s all about love.

Just like that big pink heart in Paris—it was always there, even if it wasn’t visible from the ground.  Sometimes you just have to allow yourself to climb up and be in a place where you can see it.

Gillian would have celebrated her sixteenth birthday on Valentine’s Day.

Love your children like there’s no tomorrow, because sometimes tomorrow doesn’t come.


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