Teen hoping transplant makes life picture-perfect

2013-06-22T00:00:00Z 2014-08-05T10:19:58Z Teen hoping transplant makes life picture-perfectCarmen Duarte Arizona Daily Star Arizona Daily Star
June 22, 2013 12:00 am  • 

Lizzie Bell is savoring moments.

Moments spent with family and friends watching movies or taking photographs. Moments enjoying Mexican food or basking in Tucson's heat - the sun that warms her body, which is usually cold.

It is these moments that Lizzie, 19, would rather live and talk about. She doesn't want to think much about what's ahead.

Lizzie was born with Diamond-Blackfan anemia, a rare disorder that prevents her body from producing sufficient red blood cells.

Lizzie, a recent Salpointe Catholic High School graduate and aspiring photographer, has been in and out of hospitals since she was a baby fighting the rare disease, which requires blood transfusions every two weeks.

While at University of Arizona Medical Center-Diamond Children's earlier this week undergoing IV medications and a blood transfusion, Lizzie said she did not want to think about leaving Tucson on June 30 and what she faces at the University of Minnesota Medical Center in Minneapolis.

It is there on July 25 that Lizzie is set to receive a potentially life-saving bone marrow transplant from an anonymous donor who perfectly matches her.

But preparing for that transplant will be arduous. There are risks involved, serious complications can occur and there's no guarantee it will even work.

"I haven't really let myself think too much about the scary bone marrow stuff because it is not happening yet, and I don't want to freak myself out," said Lizzie.

She knows that each day she lives is a miracle. She knows it was a miracle finding a donor. Right now her body is at the healthiest it can be for the transplant.

Yet, the transplant has many risks for the young woman who weighs less than 100 pounds, and who has lost 95 percent of her bone marrow.

Lizzie must under go high doses of chemotherapy that will basically wipe out her immune system, followed by radiation treatments before the transplant takes place. The actual transplant will take about 30 minutes, and Lizzie will be awake during the procedure, which is done intravenously.

The most difficult part for Lizzie "will be to recover from the side effects of chemotherapy that is needed so that we can make space for the healthy donor cells," said Dr. Jakub Tolar, director of the University of Minnesota's Stem Cell Institute, who is on Lizzie's transplant team.

The risk of infection is high after the transplant, meaning Lizzie will be in an isolation room for a time.

"The bone marrow transplant is a life-saving procedure. It is a risky procedure for a risky disease," Tolar said.

But, Tolar emphasized that Lizzie's transplant team is made up of 10 doctors, nurses and pharmacists with a total of more than 200 years of experience.

"The first ever successful bone marrow transplant in the world was done here in November 1968," Tolar said.

It will take two weeks for the "cells that come from the donor to grow to high enough numbers to protect Lizzie from infections and bleeding," Tolar explained.

Lizzie, described as a fighter by her family and medical team at UAMC Diamond Children's, has an 85 percent chance of surviving the transplant, said Tolar.

If the procedure fails, which is called a graft failure, then it will be repeated. If the second transplant doesn't work, Lizzie could go back to the regular blood transfusions, Tolar said.

"We have presented the best medical science to Lizzie. She has a lot of supporters (medical doctors who also treat her) in New York and in Minnesota. We are trying to do the best for Lizzie," said Tolar.

Once Lizzie is physically strong, her cells are growing and there are no complications, she and her family will stay at a Ronald McDonald House minutes from the hospital until she returns to Tucson.

The majority of bone marrow transplant recipients are able to return to their homes in three to four months, and receive medical care from their physicians, Tolar said.

Lizzie's immune system will take a year to fully recover, and she will be followed by the Minnesota doctors for more than a decade. "We are very protective of our patients," Tolar said.

Her "fighting spirit"

Diamond Children's medical staff roots for Lizzie. Her decision for the transplant is understood.

It has come to the point where effectively ridding her body of harmful iron buildup because of blood transfusions was becoming more difficult, explained Dr. Brenda Wittman, a pediatric oncologist at UAMC, who is a member of Lizzie's medical team here.

"I love working with Lizzie because she has a great outlook on life," Wittman said. "She is ready to have a transplant because the disease has taken up a huge part of her life. She wants to get on with her life outside of hospitals.

"Lizzie's fighting spirit will help her through the procedure and afterwards. I am happy for her chance at a transplant. I think once she is finished with all the immediate complications of a transplant she won't see us as frequently as she does now," Wittman said.

"She can go to school and study photography and get on with her life," Wittman said. Lizzie is planning to attend Columbia College in Chicago.

Nurses and doctors at UAMC have seen Lizzie grow up and feel a bond with her, Wittman said.

Lizzie recently had a party where friends, family, nurses, teachers and businesses who support her bone marrow drives showed their love, support and wished her the best.

Well-known nationally

Lizzie is well-known in Tucson and across the nation because of her and her family's work raising funds, sponsoring blood and bone marrow drives, and educating the public about the urgent need for bone marrow donors, especially mixed-race donors for critically-ill children.

Their work, with the help of countless volunteers and local businesses, made Lizzie and her rare anemia known worldwide when in 2009 the ABC reality show "Extreme Makeover: Home Edition," practically tore down the family's home and built a new one.

Community projects to help children with blood disorders began in Africa, Australia, Iceland and the United Kingdom.

Team Lizzie Bell drives accounted for tens of thousands of blood donations across the country, and nearly 2,000 Tucsonans have registered their marrow, said her mother, Kathy Flores Bell.

Kathy and Lizzie's father, Michael Bell, are among Lizzie's strongest advocates.

The couple and their other children have lived with Lizzie's medical condition, including surgeries, infections and side effects from medications since childhood. They have spent many a night in the hospital with their daughter.

"The transplant could change her life - make it good, new and different," said Kathy. "Our faith, family, friends and the Tucson community have allowed us to get to this moment.

"Jesus is a man of miracles. We have picked up our cross and are carrying it. I am grateful for the doctors, research and science. We are focusing on Lizzie living," said her mother.

On StarNet: See more photos at azstarnet.com/gallery

Stay connected

• On Facebook: Lizzie Bell Photography

• On Facebook: Team A Positive

• Also: www.youcaring.com/medical-fundraiser/team-a-positive-outlook-is-everything-/66467

Transplant information

Information about bone marrow transplants: bmt.umn.edu

"I love working with Lizzie because she has a great outlook on life. She is ready to have a transplant because the disease has taken up a huge part of her life. She wants to get on with her life outside of hospitals."

Brenda Wittman,

a pediatric oncologist at UAMC and a member of Lizzie's medical team

Contact reporter Carmen Duarte at 573-4104 or cduarte@azstarnet.com

Copyright 2014 Arizona Daily Star. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Activate

Follow the Arizona Daily Star

Get weekly ads via e-mail