April 2006

Skylar Kendall swung her large overnight bag in front of her and pulled the shiny Mylar balloon close as she swept through the sliding glass doors at St Michael’s Hospital. She strode over to the elevator and up to the pediatric floor, pausing outside room #436’s cracked door.

Niki lay small and pale, like a cherished china doll carefully propped up in bed wearing a nasal cannula to pump vital air to her oxygen-starved heart. Dark smudges bruised the underside of her eyes and her little bony chest rose and fell with visible effort. Her light blonde hair seemed darker than usual against the pastiness of her face, and a faint roadmap of veins readily revealed themselves through her transparent, closed eyelids. With heart deterioration this advanced, just breathing proved an exhausting chore necessitating lots of sleep.

Faith sat in a chair next to the bed gently stroking her daughter’s hand, deftly avoiding the clear IV tubing and its tape. Worried blue eyes stared at Niki’s chest as if she could ease her heart’s burden through will alone. Faith’s respirations mimicked Niki’s rate. It had to be totally subconscious, an involuntary effort on a mother’s part to help and to reassure herself that her child still breathed. The lines of strain puckering Faith’s forehead vanished the instant Niki batted her eyes open.

“Aunt Skye,” Niki called out. “You’re late.”

“Five minutes.” Skye pushed into the room and placed her packages on the chair. “Cut me some slack, kiddo.” She turned to her sister. “How do you put up with this tyrant?”

Faith shrugged. “She’s nice to me.”

“Is that for me?” Niki nodded at the big yellow smile balloon.

“Nope, it’s for your mom ‘cause she’s such a clown.” Skye settled on the end of the bed. “Of course it’s for you, silly. How’re you feeling?”

“Okay. What else did you bring?”

Skye dragged her large bag onto her lap and unzipped it. “Let me see. I got us KFC and Taco Bell for dinner.”

“You did not. It’s got too much sodium and processed stuff.”

“Is that so?” Skye frowned and pulled out Styrofoam containers. “Okay, how about broiled skinless chicken, green beans, mashed potatoes, and chocolate-dipped bananas for dessert? And what sleepover would be complete without . . .” She lowered her voice. “Sexy pajamas?” She whipped out a pair of cotton PJ’s in a tiny bunny rabbit print and rimmed with fun rainbow zigzag edging. She held the gown up and wiggled it back and forth before Niki.

“What’da ya think?”

Faith leaned closer to inspect it. “Aren’t they cute?”

Niki brought it to her face and rubbed it against her cheek. “It’s so soft, but way too big for me.”

“That’s mine, silly.” She reached into her bag and tossed a matching outfit on Niki’s lap. “This one is for you.”

Faith held up the gown. “How’d you get this?”

Skye raised her eyebrows and chin. “I know people.”

“Nice to have connections.”

“Nothing’s too good for my niece.”

“Can I wear it now?” Niki asked.

“Well, I’d look pretty silly in bunny PJs by myself.” She lifted her silver digital Cannon. “And I brought my camera to commemorate the big event.” She brought it to her face. “Closer, Faith. Say world’s best sleepover.”

Faith slid onto the bed and Niki curled into her mother’s protective embrace like a small hermit crab easing into its shell. They chimed, “World’s best sleepover,”

Skye snapped the picture and rested the camera on the bed.

“Did you find the movie?” Niki asked.

Skye affected an insulted look. “Of course.” She rummaged through the bag and pulled out the portable DVD player she’d bought at Walmart earlier that day, then retrieved the DVD and held it up. “13 going on 30. Sure this is the one you want to see?”

Niki reached for it, then dropped her hand in her lap as if it was too heavy to hold up. “It reminds me of you and me. I’m the kid Jenna and you’re the grown-up Jenna.”

Except that Jenna was a brunette—not blonde, thirteen instead of nine, and had a healthy heart.

“Looks like you thought of everything except the popcorn and soda,” Faith said.

“Empty calories,” Skye scoffed. Niki’s appetite was so negligible these days that getting her to eat anything remained a challenge, so every little bite had to count.

“While you two are having your feast, I think I’ll go see what’s taking Daddy so long.”

“Don’t forget to say goodnight,” Niki said.

“Never.”

As Faith left the room, Skye pushed the bag aside. “So. Eat first or change into our PJs?”

“PJs. I’m not hungry.” Niki closed her eyes, her voice turned soft and sleepy. “You first.”

“O-kay.” Skye whipped off her clothes and donned the custom hospital gown, then scurried over to her night bag and pulled slippers out and hid them behind her back. “I almost forgot. What outfit would be complete without . . .” She whipped her hands in front of her and snapped her wrist up and down sending the large ears bouncing. “Floppy bunny slippers."

Niki’s eyes batted open and a slow smile spread across her pale lips. “Cute. Did you get me some too?”

“Of course.”

Skye slipped her feet into the slippers and backed up so Niki could see. She fluffed her hair and slid a hand down her side, preening first to the right then to the left. Then she turned her back and peeked at Niki over her shoulder. “Well? Is this not the height in hospital wear? We’ll be the envy of all the other patients.” She lowered her voice. “Patients will come from all the floors, just to beg you for the name of your designer.” She sighed dramatically and batted her eyebrows. Niki’s giggle warmed Skye’s heart.

“Say, silly Aunt Skye,” Niki snapped picture after picture of Skye mugging for the camera. She held out her own small gown and struggled to sit up. “My turn.”

Skye had just finished tying the bow when the door opened. While Niki looped her oxygen tube around her ears, Skye glanced over her shoulder and frowned at her sister’s bright eyes, red nose, and forced smile.

“What’d I miss?” Faith asked, overly cheerful.

Niki’s gaze sharpened and she tried to see around Skye. “We just put on our PJs.”

Skye settled the DVD player on Niki’s lap and thrust the wrapped DVD in her hands. She slid off the bed to plug in the machine, “Why don’t you get the movie ready and figure out how this thing works while I talk to your mom.” Skye whirled Faith around and pushed her toward the door before Niki could get a good look at her mother’s stricken face.

“Don’t you want a robe?” Faith asked.

Standing in the hospital hall looking ridiculous in her bunny ensemble was the least of Skye’s concerns. She pulled the door open, shoved Faith through and then quietly closed it behind them. With arms crossed, she faced her sister. “What’s wrong?”

Faith looked at the ground and blew out a deep breath. “The bone marrow extraction is off.”

“Off or postponed?”

“Off.”

“Why?”

Faith bit her lip and blinked away tears before looking at her. “Her heart’s too weak to withstand the general anesthetic. The anesthesiologist refused to do it.

“Find another one.”

“It’s too dangerous. Niki’s on the organ donor list, but this last battery of tests showed that she’s worse.” Lips trembling, she wiped tears with the back of one hand. “They upgraded her to class four heart failure.”

“How many classes are there?”

“Four.”

“How . . . is that an upgrade?” What, she’s upgraded to what. . . death?

Faith shrugged and reached in her pocket for some Kleenex. “I guess it moves her higher up the organ recipient list.”

Suddenly Skye felt a hand on her shoulder.

“Hey, squirt.” Her brother-in-law backed away and looked her up and down. “Ni--ce outfit, but aren’t you a little . . . cold?”

Skye smiled and gave Paul a brief hug. Paul had stepped in and had done a credible job of substitute father and friend when she’d been a senior in high school and her father had died. He was a great father to Niki and was devoted to her sister--that alone was enough to earn his way into Skye’s good graces.

Paul’s hand trialed off Skye’s shoulder as he bent to kiss his wife. “What’s wrong?”

Faith moved into his arms, whispering, “They won’t do the extraction. She’s not strong enough for the anesthetic.”

The wrinkle lines at the corner of his eyes disappeared behind a stone mask as he gathered his wife close and rubbed a comforting hand over her back. It was his hard, policeman look used to intimidate perpetrators—only this time he had no flesh and blood target. A criminal would be a welcome enemy about now. Heart disease made a lousy adversary—it so often won.

“Shh. We’ll think of something.”

“She’s so tiny; they’ll never get a heart in time. But where are we going to get the stem cells from? We have to have stem cells to seed her heart.”

“Can’t she use ours?” Skye asked. “We’re blood relatives; we have to be a good match.”

“We’re not. We’ve already been checked.”

“I haven’t been checked. How do I get checked? Where do I go?”

“It’s just a blood test, but if we’re not a good match the chances of you matching are pretty slim.”

“So? We still have to try. But in case I’m not, where else can we get cells from?”

“The best cells to use would be harvesting stem cells from Niki’s bone marrow; it eliminates the worry of rejection. But the next best thing is genetically compatible stem cells from an embryo. embryonic stem cells (ESCs) are easier to coax into growing into heart cells once injected in a heart muscle than adult stem cells—being immature cells, they’re more impressionable and easier to manipulate.

“The last option is using stem cells from umbilical cord and placental blood (CBSs). These cells are a little less flexible than ESCs, but far more flexible than adult stem cells—but again, one of the primary challenges with these cells is worry over rejection.”

Faith tore at her thumb nail. “The doctor is going to call the International Cord Blood Society and the National Marrow Donor Program first thing tomorrow morning. The NMDP has six million donors and five hundred thousand units of cord blood and another four million prospects through some international cooperative program.”

“So that’s at least ten and a half million possibilities—somebody should be a good match for Niki,” Skye said.

Faith slowly nodded. “Except Paul’s Native American heritage makes it harder to find good matches.”

“Just get someone in to draw my blood, and as soon as I get home tomorrow, I’ll start making calls and doing research. I’ll find some stem cells for Nik. I promise.”

“Skye, don’t go making promises that are impossible to keep—especially to Niki,” Faith cautioned. “She’s been disappointed too many times.”

I’ll keep it.

“You still want to go out to dinner?” Paul asked.

Not really, but I need some time.” Faith took a deep breath. “Let’s say goodnight.”

The adults filed back into the room and stood staring at the sleeping girl. She was such a sweet thing; how could God allow her to suffer this way? She didn’t deserve it. And her sister for sure didn’t deserve it.

Faith had nearly died from eclampsia while pregnant with Niki. Her blood pressure had soared off the chart and she’d fallen down in convulsions. There went Faith and Paul’s dream of a big family; the doctor told Faith her reaction was so severe that getting pregnant again would jeopardize her life. The family had paid their price; they didn’t deserve this.

Niki blinked, before her gaze settled on the group. Her blue eyes, so like her mother’s, seared Skye’s conscience forcing her to look away from the awareness and resignation in her expression. “What’s wrong?”

Faith sat on the bed and pulled her daughter close in a careful hug. She blinked hard and cleared her throat. “They’re worried you’ll have a bad reaction to the anesthetic, so they’ve put off your bone marrow extraction until we can think of another way.”

Skye’s head snapped up and she stared at her sister wondering if she’d really heard the half-truths that came out of her mouth. Why didn’t she tell the kid the truth? Tell her it was off, but they were doing everything they could to find a different source of stem cells for her. Let her know they were doing something.

Niki pulled away and fixed solemn eyes on her mother. “Am I going to die?”

“Of course not. Don’t be ridiculous.” The words burst from Skye’s mouth with such force that she tried to cover them with a nervous smile. “Don’t be so dramatic, kid.”

Niki die? She was only nine. She hadn’t even made it to double digits yet. She hadn’t had a chance to play soccer on a team, get braces, get her period, have her first kiss, go to prom, be a bridesmaid at Skye’s wedding—not that she was even dating anyone right now, but she might get married some day and she’d want Niki to be a bridesmaid. She couldn’t die.

Niki frowned at her, then looked at Paul. “Daddy?”

Paul moved forward. “Well . . . I know Skye’s cooking isn’t the best, but I’m pretty sure it won’t kill you.” He put a hand on Skye’s shoulder and squeezed hard. In warning or was it a reaction to his daughter’s stark honesty? “Ya gotta give her points for trying. She didn’t make you her famous stew, did she?” He shuddered.

Niki giggled. “Nope. Chicken. Store bought.”

Paul released a deep exaggerated breath. “Well, good. Then you’re saved. Praise Jesus, it’s a miracle.”

Skye scowled at him and slapped his stomach. How could he clown around when his daughter thought she was dying?

“So are they sending me home? Is our sleepover cancelled?”

“Not a chance, kiddo.” Skye forced the lightness into her voice. “They can kick us out tomorrow, but tonight’s already paid for and I am not being gypped out of my movie. If you’re parents will ever leave, that is.”

“We can take a hint.” Paul reached for Faith and pulled her to her feet. “Don’t forget to brush your teeth and don’t stay up too late. You can always finish watching the movie tomorrow morning.”

“We won’t.”

“Say goodnight and get out so we can get on with the fun,” Skye ordered. She had to get Faith and Paul out of there. Skye wasn’t any good at this game and although they all played denial well, the desperation permeating the air like a thick, cloying perfume, threatened to choke her.

Paul and Faith kissed Niki goodnight, promising to return first thing in the morning to bring her home. Skye set the DVD player on the tray directly in front of them, then climbed onto the bed and wrapped Niki in her arms. She resisted the urge to press Niki close, as if crushing their bodies together might somehow magically recharge Niki’s damaged heart. Or maybe, if Niki were a part of her, Skye’s heart could beat for them both.

Skye sighed and forced her arms to relax. Unfortunately, the predicament of a thirteen year-old girl magically turning into her successful thirty year-old self over night, couldn’t come close to competing with her niece’s real-life drama. Skye couldn’t do much about finding Niki a suitable heart for transplant, but she could—and would, find some compatible stem cells. She would not let Niki die.

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