Lizzie Bell, family wait to see if transplant succeeds

2013-07-27T00:00:00Z Lizzie Bell, family wait to see if transplant succeedsStephanie Innes Arizona Daily Star Arizona Daily Star
July 27, 2013 12:00 am  • 

Tucson teenager Lizzie Bell and her family are watching and waiting, hoping that Lizzie's recent bone marrow transplant will engraft and reverse a rare, life-threatening blood disorder.

Lizzie, a recent Salpointe Catholic High School graduate, is at the University of Minnesota Medical Center in Minneapolis, recovering from a two-hour intravenous bone marrow transplant she received Thursday following a 10-day regimen of chemotherapy followed by radiation.

Lizzie and her family refer to Thursday as "Day Zero," which for transplants patients is like a new birthday. Staff in the bone marrow transplant unit feted Lizzie with balloons and "Happy Birthday" decorations on her hospital room door.

She was a little sick Thursday night but by Friday - Day Plus One - she was doing better, her family says. The risk of infection after a transplant is high.

Lizzie suffers from an extremely rare, genetic blood disorder called Diamond-Blackfan anemia. The disease means her bone marrow does not create enough red blood cells, and Lizzie's treatment has been blood transfusions every two weeks since she was a baby. Red blood cells are important because a protein in red blood cells called hemoglobin carries oxygen to all of the organs in the body. When the number of red blood cells is low, the organs may not get enough oxygen.

Blood transfusions temporarily infuse the body with red blood cells, and the tranfusions have been a lifeline for Lizzie. She even had a blood transfusion during her chemotherapy treatment.

But the blood transfusions have caused an unhealthy overload of iron and ridding her body of the buildup has become more difficult. Her family and doctors decided a bone marrow transplant was her best option. Her family is hoping the transplant will allow her body to build more bone strength. She has fragile bones and teeth.

The chemotherapy wiped out her immune system, which was necessary to make space for healthy donor marrow.

She's doing well post-transplant, but there is still a risk of rejection.

The 19-year-old is expected to be in the hospital indefinitely. It will take three to four weeks for the donor cells to grow to high enough numbers to protect Lizzie from infections and bleeding. A second transplant will be performed if this one doesn't work, and if a second one fails Lizzie will go back to getting regular blood transfusions.

She must stay hospitalized while her immune system recovers, and she'll be followed by Minnesota doctors for more than a decade.

"If everything goes really well, it would be nice to have her actually in Tucson for Christmas," her mother, Kathy Flores Bell said in a telephone interview Friday. "The hard part is that she'll have to come right back to Minnesota. The first year is very specific. We have a whole year of all kinds of stuff. She'll have to get her baby shots all over again. After that we're hoping she'll do so well that she can enroll in college."

If the bone marrow transplant engrafts as it should, Lizzie will not need regular blood transfusions, and that will change her life.

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.

Her donor lives in Europe and a team from the group Be the Match, which maintains an international registry of potential bone marrow donors, transported the bone marrow stem cells from Europe to Minnesota in a sealed plastic bag inside a cooler, and it got to Lizzie at about 11:30 a.m. Minnesota time Thursday.

Lizzie was awake during the transplant, and it was not painful. It works just like a blood transfusion as stem cells from the donor marrow go into the bloodstream.

All that Lizzie and her family know about the donor is that he's a male. They are not allowed to contact him for two years, under rules specified by his country, Kathy said.

Lizzie is of German, English and Hispanic descent and finding a bone marrow match was more difficult than the family had expected. Kathy said the family wants to eventually contact the donor.

On the day of the transplant, #lizziebellstrong showed up in multiple tweets from Lizzie's friends. Some friends are also maintaining a fundraising page.

Lizzie's family is staying in a hotel during her hospitalization. They were supposed to stay in Ronald McDonald House in Minneapolis, but it was full.

The family is also facing other expenses related to the transplant that are not covered by insurance.

But right now, they are focusing on Lizzie's recovery and maintaining faith that the transplant will be successful.

They ask that friends in Tucson keep praying and thinking, "engrafting thoughts."

Updates on Lizzie

On Facebook: Lizzie Bell Photography

On Facebook: Team A Positive

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

Contact reporter Stephanie Innes at sinnes@azstarnet.com or 573-4134.

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

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