The holidays can be hectic for anyone, but for the Fish family of Highland, Christmas in the hospital was made easier by the caring staff and patrons at Primary Children's Medical Center and the support of their community.
The Fishes' days are a flurry of activity, filled with medical tests and procedures designed to save their daughters from a rare autoimmune disease, all while juggling everyday life with their five children.
Earlier this fall, 8-year-old Natalie, the oldest daughter of Elisabeth and Tyler Fish, was diagnosed with a variant of Severe Combined Immune Deficiency after years of illness and hospital stays. Natalie's body "leaks" enough immunity to fool medical tests into thinking she has a functioning immune system, but instead of protecting her, that leakage attacks her body. Her 2-year-old sister, Alice, also has Leaky SCID.
While there are about 60 new cases of SCID in the United States each year, there are only about two cases of Leaky SCID diagnosed in the same period.
"They have been abnormally ill for a very long time," Elisabeth Fish said. "We'd been seeing specialists, but even the smartest of the smart missed it. The labs would indicate normal, but we knew there was something wrong. It was a long, hard road to diagnosis."
Natalie has been at Primary Children's since Dec. 14, receiving chemotherapy and preparing for her procedure in a special germ-free room. On Dec. 21 she underwent a bone marrow transplant. Natalie's 4-year-old brother, Blair, was a perfect match. Alice will begin the same regimen in a week or two when her anonymous donor from out of state arrives.
"The hardest part for Natalie is yet to come," Elisabeth said. "It takes about three weeks for that marrow to take hold. She's basically living off of blood transfusions from the blood bank. That's why donations are always so necessary."
The Fish girls will each receive between 25 and 50 blood transfusions during the course of the transplant process. Natalie is dealing with all the fatigue and nausea of chemotherapy, a pre-existing lung problem, as well as painful mouth sores.
"Think of the worst canker sore you've ever had, then multiply them and spread them around your mouth and down your throat," Fish said.
The family has been divided over the holidays with Elisabeth and Tyler trading off between staying with Natalie at the hospital and taking care of their other four children.
The hospital staff has tried to help the patients.
"We try to make it as fun as we can. No one wants to be in the hospital during the holidays," Kate Crawford, Primary Children's communications specialist, said. "We have all sorts of musical volunteers that come and sing in the lobby. We have people that buy trees at Festival of Trees and then donate them back to the hospital, so there are Christmas trees on every floor all over the hospital. Every child receives a special present from Santa in their room Christmas morning, all of which are donated and picked out especially for that child. Then there are the special guests that come and visit the children, like the Utah Jazz players and, of course, Santa."
Natalie had one such special visitor a few days before Christmas, when David Archuleta came to sing and visit with her.
"Natalie said he sang 'Jingle Bells' and it sounded really good," Elisabeth said. "We've had so much support from every side."
Natalie's cousins and uncles even shaved their heads in a show of support.
"It started with her cousin, Landon, and then just snowballed. I think I counted 22 or 23 that wanted to look like Natalie when she lost her hair from chemo," Elisabeth said.
The Fishes have a long year ahead. Tyler has quit his job to help Elisabeth keep up with the hectic schedule of doctors and tests, in addition to normal life with five kids. The family will be basically in quarantine after Alice and Natalie come home.
"The first 100 days will be the hardest to get through. It's so critical to keep everything sanitized and keep them well, but if this is a means to an end where they can someday have something like a normal life then we're all about it," Elisabeth said.
In addition to taking care of her family, Elisabeth has begun to crusade alongside the Immune Deficiency Foundation.
"Their whole objective is to make people aware and prevent this hard process from happening to others," she said. "The state of Utah does not include SCIDs on the newborn screening tests. I heard that it only costs $8 for this additional test. When I asked why the state does not include it, I was told that it is a lack of education. Something this simple might prevent others from having to endure what our children have endured."
Accounts for donations have been set up at Utah Community Credit Union and Wells Fargo banks to help cover the Fishes' expenses.