What do I think?
I think I have an incredible partner. I think that today I will try not to worry. I will just enjoy her company. And I think we will laugh at the thought of spending time away from Nancy during the holidays.
Summary: Nancy’s fever slowly disappeared early this week. We have no answers as to why the fever came or what caused it. With no evidence of infection, our path took a different turn. Our new worry is graft-versus-host (GVH) disease. A colon biopsy was another dead end, but Nancy’s symptoms continue and her fever is back.
With concern,
Winnie
The Best Christmas Ever
December 20, 8:38 p.m.
Dear Friends and Family,
As a medical doctor married to an airline flight attendant, our family has over the years often celebrated holidays at nontraditional times and in nontraditional places. Every year since the kids stopped looking up the chimney for Santa Claus on Christmas morning, I have volunteered to work on Christmas Day to allow my younger partners at the clinic to spend family time with their children. Many years Nancy was flying on Christmas, and other years she and the kids went to her mother’s home in Georgia. So Christmas for us has always been a “variable” holiday. The only requirement became finding a time when Nancy, Jayna, Jaret, and I could be together in the week before or after this special day.
This year will be different.
The frozen image outside our surprisingly large window at the hospital could pass as a Christmas postcard, and the snow-covered mountains seem close enough to touch. A nearby residential development shows off homes twinkling and dressed in holiday decor. Beyond the homes and mountains, the sky is painted in red, orange, and gold as another day comes to a close. However, inside Room 506 at the University of Utah Hospital, it is anything but a normal Christmas. There are no live bowls of holly and no Christmas cookies. In fact, there is no food at all.
How are the holidays for the Winn Family?
Yesterday, I realized that we would not be leaving the hospital any time soon. “Dadder, don’t be so worried,” Jayna told me as she studied my face. “Think of it this way: The doctors have always said Mom will likely develop GVH at some point. Why not get it over with now? I don’t want to go home and come right back. Do you? And besides, if we end up being here on Christmas Day, who cares? It will be really easy for Mom. Can’t you just imagine her at the apartment, fretting over not having enough presents for Jaret and wondering if the shirt she bought you is a color that you’ll actual like—let alone wear? If we stay in the hospital, we can do all the work. Mom can just stay in bed and enjoy things. Cheer up. Chill and take a look at the tree Emmy brought us today. It’s so cute. Christmas in the hospital won’t be so bad.”
I couldn’t help but think, “My dear, sweet Jayna. You’re grown up now and you lift my spirits in the same way your mother does each day.” With some real effort required on my part I responded, “The tree is cute, Jayna. It’s not even three feet high. And it’s a little different from the ones that touched our ceiling when you were still leaving notes for Santa.”
During our children’s early years, we would annually venture into the forest to cut a tree with the Fields, our neighbors. Many of our holiday trees stood over twenty feet, and decorating them took two ladders and sometimes a full week to get the lights and ornaments just right. However, it was always worth it. Jayna and Jaret’s wide eyes consumed their faces as they would race down the steps on Christmas morning.
“Mom really likes the small tree. When she woke up from sleeping and discovered it, she clapped her hands. We can do it, Dadder. This will be the best Christmas ever—even if the doctors do decide Mom has GVH.”
Once again, I decided that it was best to keep my thoughts private. But I couldn’t help but think silently: All right, Jayna. We’ll have a Christmas to remember, even if it’s in the hospital. Where do I hang my fears? There’s no tree big enough. Your mother looks so serene, asleep in her bed—but she’s facing the two most terrifying challenges (infection or GVH) of transplant patients. Jayna, quite honestly, I don’t know which diagnosis to wish for in my prayers. You think we should treat GVH now and get it over with, Jayna. Prednisone, a steroid Mom would take in gargantuan doses if her symptoms prove to be GVH, is lifesaving—but prednisone is an awful drug. It affects sleep and causes temporary diabetes—and high blood pressure, skin changes, and weight gain. Yes, it would keep the new bone marrow from attacking Mom’s gut, but the cost is very high. And most scary, a high dose of prednisone increases the already elevated risk for infection.
“You’re right, Jayna. We do need an answer to Mom’s fever and bowel problems—even if it’s GVH. I just had hoped she wouldn’t get it for a little while longer, preferably sometime after Christmas.”
“Dadder, let’s make plans then. What do you think we should get Mom?”
We can get Mom anything you want, Jayna. In fact, let’s get her everything you and Jaret can think of for Christmas. Our holiday this year will never ever be surpassed. What’s important is that we celebrate together, like always. This year Christmas should be one day that, unlike every day since this all began for Nancy, she’ll truly want to remember always.
Summary: As Christmas approaches, it looks like Nancy will remain in the hospital. Her medical team is trying to figure out why she has fevers and a GI tract that won’t accept food right now. Though disappointing, we will plan a big day in Room 506 and be very thankful that we won’t gain any weight like we usually do during the holiday season.
Sincerely,
Winnie
Stepping Up Isn’t Hard to Do
December 21, 10:36 p.m.
Dear Friends and Family,
Today after work I was ordered by my “girls” to go to Woodland rather than come to the hospital, as is my usual routine. “We want some girl time, Dadder,” Jayna explained on the phone.
Nancy had a slightly different explanation: “Jaret’s been alone for several days. He needs you more than I do. Isn’t there a football game on TV tonight?”
Nancy was right; it was time for a trip to the mountains. Jaret met me at the door of the house, which is somewhat unusual for him.
“Hi, Dad. Did you have a hard day at work?”
“Pretty busy, Jaret. I’m sorry to be getting here later than expected.”
“That’s okay. The game doesn’t start for twenty minutes.”
“Who’s playing?”
Over the last month, watching a football game with Jaret has become part of our Woodland “routine.” We both anticipate and cherish the experience no matter what time I arrive home from work or the hospital. The teams don’t really matter. The score doesn’t matter either. What matters is the illusion of normalcy. After all, I’m usually snoring (loudly I’m told) by the second quarter. (I also come to Woodland more often these days since it is Christmas break at Westminster College and Jaret is home continuously for the next several weeks.)
“Dad, guess what?”
“What?”
“I already took out the trash and watered the plants. You didn’t have to remind me. I even remembered the laundry that Emmy didn’t do yesterday. And since you’re working so hard, I did the dishes, too.”
Jaret beamed and so did I. (With a normal child, news of this sort would be a pleasant surprise, but with Jaret and his unique challenges, such actions are major.)
“Thanks, Jaret.”
“I want to do my part, Dad. How else can I help?” Jaret walked over and kissed my bald spot. (I can’t help but wonder if it feels as good to Nancy when I kiss her head as Jaret’s kiss did to me.)
“Jaret, you’re already helping more than I could have imagined. Mom will be proud.”
“Oh, I forgot to ask. How is Mom today? Did they find anything out?”
“Actually Jaret, I was just about to tell you some really good news. It’s taken ten days, but they finally figured out what germ Mom has in her body. The biopsy of her colon shows CMV vi
rus.”
“Is CRV bad?”
“CMV, Jaret. Any infection Mom gets is potentially bad, but the doctors believe their medicine will kill the CMV virus. We’ll see how everything works in the next couple of days. And guess what else? They also think the CMV virus is the cause of Mom’s fevers. What that means is that if Mom has any GVH, it is mild. I really hope they’re right.”
Jaret was listening intently and his eyes were glassy like mine. Though he often has difficulty finding words, he has a deep love of his mother. He welcomed my hug with open arms. “Jaret, you need to know that Mom will be very excited to hear what you’ve been doing at the house. She’ll be just as excited as we were when we learned about the CMV. Again, thanks for everything you do for your mother and me.”
Summary: Even Jaret has stepped up in our struggle through these difficult times.
Excitedly yours,
Winnie
A Holiday Miracle
December 24, 11:09 p.m.
Dear Friends and Family,
Today we learned that even though Nancy is tolerating the medicine for CMV well and is slowly improving, it is now definite that Christmas Day will be spent in Room 506.
For the past few days, I have anticipated this news, but there is a part of me that had hoped for a Christmas miracle. However, we have quickly adjusted. On the twenty-fifth, I will (as usual) work, but my partners insist that I only work the second half of the day so our family can actually celebrate Christmas on Christmas Day morning. Kathleen, my partner, good friend, and riding companion, called me last week to inform me of my partners’ decision. She said, “You’ve volunteered to work on Christmas Day for as long as any of us can remember, Winnie. This year, at least, you will come in late in the day. The partner group insists and won’t hear anything different.” Jaret, Jayna, and I have embraced this change and have immediately begun preparing for the big day. Even the hospital staff has noticed.
“Oh my gosh, Nancy. I don’t think I’ve ever seen better decorations in a patient room.”
Hope should know. She’d been a nurse on the bone marrow transplant floor since before Jayna was born over twenty-two years ago. A Christmas tree, Santa’s sleigh, and a holly wreath that glitters in the afternoon sun are from my creative days when I made holiday presents out of stained glass and glass jewels. (Emmy, our Christmas angel, has provided almost all the other decorations.) Numerous strands of white lights camouflage the dull-brown hospital shelves. A basket of plastic branches and artificial flowers has turned the TV stand into a festive holiday display. Four bright Christmas stockings are hung from the towel rod behind Nancy’s bed. Emmy told me they were her “extras.” But I must admit, I wonder if it was a Christmas “fib.” (Who in the world has four extra matching elegant Christmas stockings just lying around?)
Finally, there is our perfectly shaped “too-cute-to-be-true” little tree perched ever so preciously on Nancy’s nightstand. It stands all of nearly three feet tall with short, stubby, symmetrical branches. Each branch drips with Emmy’s miniature ornaments. (Where did she find miniature decorations?) The tree “matches” the holiday gift from Joannie, our neighbor and close friend, who cleans the cobwebs and everything else that needs it at our Woodland home once a week. Since Nancy will not be venturing outside, Joannie has sent a handmade miniature wooden snowman. Nancy named him “No Frost” and has found him a seat of prominence on the last available shelf.
A short while ago, Hope handed Nancy a present: “This gift was delivered this morning, and you are supposed to open it now.”
Nancy read the handwritten tag: “We love you guys—our family is thinking of your family. Merry Christmas, Bob.” Bob Evers is one of my two original partners. We built our medical practice together, even raised our families together. His children are the same ages as Jaret and Jayna, and both sets of kids shared many milestones and friendships.
When Nancy opened the present, she found a hand-carved ivory-billed woodpecker inside wrapped in tissue paper. One of Bob’s many other talents is woodworking. The woodpecker’s movable wings spanned over two feet and the highly polished body was made from inlaid maple and red heartwood. “It is so beautiful, Winnie. Can we hang it above my bed so I can see it all the time?” I stood up to fetch the fifth floor’s ladder. “Wait,” Nancy said before I could leave the room. “Listen to the note.”
Nancy read slowly from a pink notecard with lacy fringe that she unknotted from around the woodpecker’s neck. The card was written in calligraphy by Bob’s lovely wife and Nancy’s very good friend, Anne. (You may recall that Anne is the lab tech who works at LDS Hospital, where Nancy was first admitted. She was the technician who took me to view the slides of Nancy’s “bad guy” leukemia cells.)
The card read, “The ivory-billed woodpecker had last been seen in 1944. Hence, all of the major bird experts and bird books declared it extinct. Last year, however, it was rediscovered in a swamp in Arkansas. Birders called it a miracle. The bird is thriving today. Like the ivory-billed woodpecker, most thought you would be ‘extinct.’ Having this bird in your room symbolizes the miracle we expect for you.” Each member of the Evers family had signed at the bottom of the note and sent their love.
Ten minutes later, our woodpecker was hanging from the light above Nancy’s bed, adding to the Christmas spirit.
Summary: A hand-carved, wooden bird that vigilantly flies just above her hospital bed now protects Nancy. The ivory-billed woodpecker is our symbol of hope and miracles and also a reminder of the amazing support given to us by our friends and family.
Very much love,
Winnie
A Christmas to Remember
December 25, 9:17 p.m.
Dear Friends and Family,
First, and most importantly: Merry Christmas and Happy Hanukkah.
Our hospital room is deeply personal and extremely intimate today. It is not surprising that the fifth floor is quiet because every patient well enough to be discharged has been sent home for Christmas. Nancy is dressed for the occasion in her candy cane pajamas, Christmas socks, and no-longer-visible bald head. She is nonchalantly hiding it beneath a Santa hat, a present from her sister, Linda. (It’s a way for us to be connected to Linda even though she is physically in Georgia.) Nancy’s glowing face makes the room feel warm and fuzzy. Even though it’s not the place we would have chosen for our Christmas gathering—we are off to a good start.
Jayna arrives a few minutes later, huge plastic bags slung over her shoulders. “Ho! Ho! Ho!” she utters in a deep and throaty voice as she drops one of the overflowing bags and spills the presents across the floor. Nancy and Jayna fill the room with laughter.
The ivory-colored phone on the portable stand besides Nancy’s hospital bed rings. And rings again. And again. Uncharacteristically, Nancy answers the phone, and her eyes immediately tear up and become slightly glassy. The many voices she hears are loved ones from near and far away sending their best wishes. Every caller wants us to know they are thinking of Nancy and the Winn family. Nancy recaps each phone call to us, describing in considerable detail each person she speaks with and word-for-word their kind messages.
Jayna’s two bags filled with presents double those already neatly stacked in the chair that guards the end of Nancy’s bed. The chair is overflowing with offerings of varying sizes and shapes. I can’t for the life of me think of who shopped, wrapped, and bestowed so many gifts for our family. The stockings are bursting with goodies that were also not brought by Jayna. Emmy must be the culprit. (She’s not only an angel, she’s a saint, too.)
The next hour or so is deliciously joy filled for the Winn family and, unlike any Christmas I can remember, it is totally relaxed. There is no table to set. There are no meals to prepare. Nancy sits up in her bed and Jaret, Jayna, and I take a seat along the edges of her blankets. During our “family” time together, we do not encounter any interruptions that would somehow disrupt the magic in our room. The hospital staff seems to know not to disturb us.
/> Nancy is somewhat hesitant to be the center of attention as we make “merry” in our little room. We snap picture after picture, making sure that anyone who sent Nancy a gift will see firsthand that she received it. We urge Nancy to model a new bracelet and hold up a new pajama top for the world to see. We toast to her new blood type by clinking water-filled glasses. And then I notice—Nancy’s face looks like she has just received an injection.
“Shall we take a break, Sweetie?”
Nancy doesn’t answer. Instead, her forehead lines soften as she rests her head on the pillow behind it and shuts her eyes. Initially, I fear that we have asked too much of Nancy and that we have worn her out with too much activity and commotion.
Ten minutes later, our nurse Hope tiptoes into the room, taking a somewhat circuitous route through all the wrapping paper, bows, and boxes haphazardly strewn on the floor. She taps Nancy on the shoulder: “I’m sorry to interrupt, dear, but it’s time for your pills.”
Nancy sits up and carefully swallows three white pills. She doesn’t lie back down. She turns to Jaret, Jayna, and I bunched together on the one remaining empty chair and flashes a smile that nearly knocks me over. “Don’t I have any more presents?”
You do indeed, my love.
She opens the final gift-wrapped packages, unable to alternate with us since we’ve long since opened the last of ours. In days gone past, Nancy was always Mother Santa. Inevitably, when it came to unwrapping gifts, Nancy was always the first one finished. But this is a very different year. It is time to write new Winn family traditions. Now we take more pictures, we talk of past holidays—and we share more kisses and hugs and water toasts.
“I got more than you did, Winnie. I also got more than Jayna and Jaret. How did that happen? It’s not fair,” Nancy declares when all the gifts have been opened and shown around the room by each “giftee.”
Night Reflections Page 25