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