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Dana Drouin is justifiably proud of her photo albums. In one a trip to the shore is carefully documented -- snapshots show a pair of cheerful toddlers splashing in the surf, a serious older boy digging in the sand, a gang of adults hanging around a beach house, grinning. Another catalogs a trip to Disney World, while a third testifies to the hectic but happy life Dana shares with her husband, Shawn, their three children -- Ryan, 12, and twins Sydni and Aidan, 5 -- and their dog, J.J. "This is from last year," Dana says, pointing to a shot of Shawn and Sydni at a tearoom near their home in Blackwood, New Jersey. In the photo Shawn, who's 6-foot-4 and built like a linebacker, sits delicately on a wrought-iron chair. Tenderly, he leans toward a beaming Sydni, dressed in her Christmas best, offering her a tiny tea cake. Dana, who took the photograph, remembers the occasion with bittersweet fondness; for the Drouins, high tea with their daughter at Christmas is more than just a holiday treat. Three and a half years ago Dana was diagnosed with stage IV terminal cancer; the tea party is a special ritual she'll share for as long as she can. After she's gone, Shawn and Sydni will celebrate alone.
In the summer of 2003 things were finally coming together for the Drouins. They'd spent years trying to have another baby, and finally -- to 6-year-old Ryan's delight -- conceived the twins through in vitro fertilization. They'd survived the serious complications that sent Dana to the hospital several times during her pregnancy, and she'd weathered two whole trimesters of bed rest. They'd even managed to move to a bigger house after the twins were born and had taken out a second mortgage to cover their anticipated extra expenses (Dana planned to return to her job as a certified medical assistant when the twins turned 2). In her new home, Dana felt she could finally relax. "Life had certainly thrown us a few curveballs, but now I felt that all our dreams were within reach," she remembers. And then, when the babies were 9 months old, her back began to hurt.
At three separate visits over the course of an entire year, her doctor told her not to worry -- chances were she'd pulled a muscle lifting the twins. So the pain came and went, until one day it became so intense that Dana could barely breathe and had to race to the doctor again. Thinking that she had kidney stones, her doctor ordered a CT scan and sent her to a urologist. The urologist told Dana she didn't have kidney stones, but that she needed to go back to her primary care physician right away because she had lesions on her kidney, spine, and liver. "Right then I knew I had cancer," Dana says.
The oncologist she was later sent to was baffled. Dana's blood work came back without any of the usual markers for cancer, but an MRI showed a massive tumor on one of Dana's vertebrae, which a biopsy confirmed to be malignant. "Then I had a PET scan, which lit up like a Christmas tree," Dana says. The scan showed more tumors on her spine, on her right shoulder, throughout her liver, and in her kidneys. She was 31 years old.
In the oncologist's office Shawn's eyes filled with tears when they heard the news. The prognosis was grim: Dana's cancer had already metastasized so far that it was impossible to tell where it had originated. Kidney cancer meant she could be dead in six months, Dana remembers being told; breast cancer might give her two years. (Although her breasts were cancer free, the pattern of her metastases suggested breast cancer -- which typically spreads to the liver, bones, and lungs -- as a possibility.) Dana, stunned, felt both anger and disbelief. "I kept thinking, 'I've got three little kids. I have to be here for them. This can't happen.'" Because the tumors on her vertebrae were so close to her spinal cord they were inoperable; the surgery could paralyze Dana from the neck down. Aggressive chemotherapy and radiation treatment were her only options.
At first the sheer physical agony of her treatments eclipsed everything. Taking care of 21-month-old twins and an 8-year-old is challenging for anyone: For Dana, whose regimen began with 10 radiation treatments in 12 days and three different kinds of chemo, followed by white-blood-cell-boosting shots that made her cancer-riddled bones ache so badly that even a hug from her kids was intolerable, it proved nearly impossible. Shawn took as much unpaid leave from his job at Staples as they could afford, while Dana's friends and family helped when they could. Still, there were plenty of days when she found herself alone with the kids, weak, sick, scared, and in terrible pain.
"Everyone fusses over you when you first get sick, but after a few months the novelty wears off, and you're forgotten," Dana remembers. Steroids caused her weight to balloon, which added to her difficulties; she wept the day her thick hair came out in clumps in the shower.
To make things worse, the family's financial situation was becoming desperate. For Dana to return to work was now out of the question, and her medical expenses were snowballing. Yet through it all Dana's devotion to her kids remained unwavering. Terribly nauseated from the chemo, she still managed to change diapers and fix lunches, and when the kids got colds or fevers and needed hugs from their mom, Dana was there -- though with her compromised immune system she'd always end up sicker than they were.
But there were also bright spots, like the fund-raiser family and friends organized at a local bowling alley. The Drouins used some of the money for medical expenses, but set part aside for a trip to Disney World when the twins were 2 1/2. Disney World was a wonderful respite for Dana, as was a vacation at the Jersey shore that summer. "For a whole week I didn't even think about being sick," she says. Photographs show the kids, ecstatic in the sand and sun, and Dana with a huge grin, a scarf tied over her bald head.
The twins don't remember a time when their mom wasn't sick. But neither do they fully comprehend the seriousness of her condition. "They don't know I'm dying," Dana says. "But now that they're 5, I talk about my sickness. I tell them that if something happens to me, I'll be going to a better place and will always watch over them. Sometimes their obliviousness is almost funny, like the time UPS delivered a box of meds and the twins began dancing around, shouting 'Mommy's chemo is here!' as if it were my birthday or something." She treasures their innocence. "I don't let them see me cry, and I try my best to hide it when I'm sick or in pain," she says.
But the Drouins thought that Ryan, who was almost 9 when Dana was diagnosed, deserved a fuller explanation. "I told him right away I had cancer, that it was a serious disease, but that I'd fight as long as I could to be with him. I also told him that the medicine would make me very sick and that the cancer might someday kill me."
Originally, Ryan, who's quiet by nature, didn't show much emotion. "Maybe he was too little to comprehend the situation, or else he was in denial," Dana says. "But when I lost my hair he came completely undone." He begged her to wear a wig whenever she came to his school -- "it made my disease more real for him," Dana guesses, "and he didn't want his friends to know. Ryan keeps his real feelings to himself, but we're very close, and I knew he was suffering." She decided to meet his attitude head on, telling him firmly, "Hair doesn't change who someone is. It's just a cosmetic thing, and no matter how funny I look, I'm still your mother." And then, to honor his request, Dana always wore a scarf tied around her head when she went to his school.
But when Ryan was in fifth grade, Dana and Shawn sensed he was withdrawing even from them. Worried that coping with his mom's illness was starting to take a serious toll, Dana called his school counselor, who put her in touch with an organization called Mommy's Light.
Mommy's Light was founded in 1997 by a terminally ill mother named Mary Murphy, who wanted to make sure her 10-year-old son continued a special ritual they shared -- in their case, baking cookies -- even after her death. Since its inception, Mommy's Light has helped hundreds of families cope by providing bereavement education materials and facilitating "tradition fulfillment" for children whose mothers are dying. Whether it's planting a garden, attending a baseball game, or having a picnic, kids often find that continuing activities they once shared with their mom is a huge comfort after she dies. Together with their children, Dana and Shawn decided on two traditions: their annual Christmas tea with Sydni ("We brought the boys once -- never again!" laughs Shawn) and bowling with the whole family on Dana's birthday in February. (Making sure the rituals occur at a specific time every year helps guarantee they won't accidentally be skipped or forgotten.)
But having to describe herself as "Stage IV Terminal" on the forms required by Mommy's Light reminded Dana of her oldest, worst fears -- that her children, especially the twins, wouldn't truly remember her after she died. Would these once-a-year rituals be enough to keep her alive in their minds and hearts? How could she make sure they felt her love for them, even after she was gone?
We've all, at some point, asked ourselves how we'd change our lives if we suddenly found out we had very little time left. For most people, it's a rhetorical (even inspirational) question, meant to remind us to savor the present, to keep our priorities in order and treasure what we have. For Dana, struggling to figure out how best to make the rest of her life a happy, meaningful time for her children, the question suddenly took on a terrible urgency. Should she try to cram as many exciting adventures into her days as her strength and the family budget allowed, hoping her kids would treasure those special experiences forever? Or should she budget both her money and her energy and strive for as normal a life as possible? "There's this feeling that you have to constantly go out of your way to have special treats and fun times or to make every moment special, and there's no doubt I want the kids to have as many wonderful memories as they can," she says. "But sometimes that attitude backfires with small kids. It's often the little things they remember, like cuddling on the sofa or tickling or even just goofing around at lunch. Even if we could afford endless trips and activities, do I want the twins to remember a fun day at an amusement park -- or do I want them to remember me as a presence?"
One thing is certain: Dana wants to leave something tangible behind to remind her kids of their mom. Though she's already outlived her prognoses -- "I'm on borrowed time," she says, trying to sound cheerful -- Dana knows that the chances are slim she'll see her children grow up. "I'd love to make a video of myself for Ryan and the twins to watch as they get older because I'm so worried they'll eventually forget my voice, my gestures, the way I look when I talk. But every time I try, I break down crying. And I don't want them to remember that."
Since it's too painful to make a video, she's been trying to write a journal to each child, along with a series of letters to be opened years from now at the birthdays, graduations, and weddings she's not likely to see. "I especially worry about Sydni, left behind with all these boys," Dana says. "I want to write her letters for when she's a teenager -- when she gets her period or has her heart broken for the first time, since I won't be here to hug her." It's a beautiful ambition; so far, however, Dana has found it agonizing to fulfill.
For one thing, 25 rounds of radiation on her right shoulder have left Dana's arm so weak that the physical act of writing is exhausting. But even composing the letters in her head, which requires her to picture her kids growing up without her, makes her miserable. It's a wretched catch-22: Dana, who has only a few hours a day of feeling strong enough to tackle any project, knows that working on the journals and letters for her kids will both distract her from their present needs and make her extremely upset. "Here I am trying to do something for my kids in the future, and meanwhile they're at my feet, wanting attention! I have to ignore them so I can concentrate -- and then I have to hide from them because I don't want them to see me cry."
But there's another reason it pains her to work on these messages. In Dana's mind, to complete the projects she has planned would be tantamount to admitting she's ready to die. "I always tell myself I've got to hang in there. There are still so many things I've left unfinished, I've got to hang on," Dana says. "But once I write all the kids' letters, finish their diaries, put together their scrapbooks and write a letter to Shawn to read after I'm gone? It's as if there will be nothing holding me then." And while therapists and grief counselors often say that acceptance of one's fate brings a necessary peace, to Dana, acceptance feels a lot like giving up. "I swore to myself I'd fight this thing for my kids. I still pray for a miracle -- I refuse to let go of my hopes."
For now, Dana is determined to split the difference between pragmatism and optimism. She focuses on small goals only a few months in the future -- a trip to Florida for her niece's bat mitzvah -- instead of worrying that she'll never see Sydni graduate from college or Ryan get married. "Do I take life for granted? No," she says firmly. "But do I feel right now as if I'm about to die? No." In the journals she works on whenever she feels mentally and physically strong enough, Dana has written the same passage to each of her children -- a message that perfectly captures the essence of a dying mother's undying love. "If you're reading this, and I'm gone, then I know you're sad. You may even feel heartbroken. But remember this: My life may be over, but yours is not -- my life is not yours. Your life has to go on, whether or not I'm physically there for you -- follow your dreams, do what makes you proudest of yourself, do what makes you happy. And when you miss me, don't make yourself upset by thinking that I'm gone. I'm still here. Look in the mirror -- you'll see me."
Originally published in Ladies' Home Journal, April 2009.