Story by: Kim Huston on September 14, 2021
On Valentine’s Day, 2020, Angel Florian received a 6-foot-tall plush rose from her boyfriend. It was a substitute for the real flowers he wanted to give her but couldn’t because her weakened immune system made it too risky.
It was a year earlier, just after her 17th birthday, that Angel received a diagnosis of myelodysplastic syndrome, a rare but serious blood disorder. After a haploidentical blood marrow transplant and a three-month stay at Norton Children’s Hospital, Angel is now getting better every day.
She celebrated her 18th birthday and graduated from high school. As she continues her recovery, she is looking forward to living a full life.
Angel had been a healthy child with no health issues into her teen years. She started feeling changes at the end of 2018.
“I couldn’t walk without being completely out of breath. My heart was beating out of my chest, and I was completely worn out all the time,” Angel said. “It kept getting worse, and I started to notice bruises on me.”
Angel told her mother that she felt like something was wrong. Angel’s mom, Alicia Huff, called one of Angel’s doctors and was told that she should go to an emergency room immediately. Her father, Alex Florian, went to Central Hardin High School to get Angel, and they went straight to Hardin Memorial Hospital in Elizabethtown, Kentucky.
“They took my blood and my white blood cell counts, hemoglobin and my platelets were so low that they thought their machines were broken,” Angel said. “They tested my blood again and got the same result. They told me not to leave my room, and that I would have to go to Norton Children’s Hospital.”
Angel was taken to the Addison Jo Blair Cancer Care Center, Norton Children’s Hospital’s inpatient cancer and blood disorders unit, known to patients and families as “7 West,” for more testing. Angel stayed in the unit for three days, where she received multiple blood and platelet transfusions. She also got her diagnosis: myelodysplastic syndrome (MDS).
Myelodysplastic syndrome often is called a “bone marrow failure disorder,” according to the Myelodysplastic Syndromes Foundation. Healthy bone marrow creates three kinds of blood cells: red blood cells (oxygen carriers in the body), white blood cells (infection-fighting cells) and platelets (allow clotting) from stem cells.
With MDS, the blood marrow’s stem cells do not fully develop into white and red blood cells and platelets. The result is a buildup of immature stem cells in the bone marrow. The stem cells also may die prematurely. This lowers the amount of available white and red blood cells, as well as platelets, causing anemia (low red blood cells in the blood), neutropenia (low white blood cells in the blood), and thrombocytopenia (low platelet counts in the blood). For 1 out of 3 people with MDS, the condition develops into acute myeloid leukemia (AML). However, some of the biggest health risks to people with MDS are bleeding or infections.
When Angel went home after her three-day hospital stay, she had to withdraw from school and all of her extracurricular activities due to the increased infection risks of having a low white-blood cell count. Hematology specialists with Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, began the work to find the match Angel needed for a bone marrow transplant.
The best treatment for patients with severe MDS is to replace a child’s unhealthy blood-forming stem cells with a donor’s healthy stem cells. This allogeneic hematopoietic stem cell transplantation (HSCT) requires a donor with identical tissue type to the recipient. Neither Angel’s sisters nor someone in the National Marrow Donor Program (BeTheMatch.org), however, was a match.
But Michael Huang, M.D., pediatric hematologist/oncologist at Norton Children’s Cancer Institute with the Hanna Catherine Evans Bone Marrow and Stem Cell Transplant Program in Norton Children’s Hospital, had an alternative. A haploidentical bone marrow transplant can use blood and bone marrow from a person who is a half-match, such as a parent.
The program team decided that Angel’s dad, Alex, would be her donor.
“A haploidentical bone marrow transplant is arguably as safe if not potentially safer than doing a transplant with a nonfamilial donor,” Dr. Huang said.
Alex wasn’t too concerned about being a bone marrow donor. When it was suggested that he be Angel’s donor, he jumped at the chance.
“Well, I’d do anything for her,” Alex said. “They couldn’t find a match through Be The Match, and they ended taking me because I have the same blood type and I’m bigger, sturdier. I told them, do whatever you need to do. I’ll figure myself out later; just fix her. They weren’t sure what was going to happen to me due to giving so much bone marrow.”
Alex had no complications after his donation, except he felt a little sore. He went back to work four days later with no issue.
“I think it was pretty special for my dad to be my donor,” Angel said. “It was more special than having a complete stranger as a donor because it was something my parents could do to help me.”
Norton Children’s Cancer Institute has been home to the Hanna Catherine Evans Bone Marrow and Stem Cell Transplant Program since 1993. It is the only blood and marrow transplant program dedicated to helping kids in the Louisville and Southern Indiana region.
Call (502) 629-7725
Between her diagnosis and being admitted to the hospital for her bone marrow transplant, Angel had to come to the Norton Children’s Infusion Center on a weekly basis for blood product transfusions. She also had to be seen by multiple specialists to evaluate her status prior to undergoing the transplant procedure. That included a reproductive specialist to harvest and preserve her eggs. Chemotherapy, which can cause fertility issues, would be used to help keep Angel’s MDS from developing into AML.
Angel recovered from her transplant during a three-month stay at Norton Children’s Hospital, becoming close to her nurses and doctors. It was her nurses who decided to celebrate her 18th birthday in 7 West.
Angel was used to wearing a mask and the strict social distancing protocols that Americans came to understand amid the coronavirus pandemic. Due to the infection risk before and after her transplant, she had to wear a mask, practice social distancing and limit her time in public places. Just before the COVID-19 outbreak occurred, she was excited to lift some of her own social distancing restrictions, considering going to Thunder over Louisville and other events if she had medical clearance from her doctors to do so. She also was looking forward to a family cruise during the summer. And then the pandemic hit.
She continued her follow-up treatment amid the outbreak. Angel used her time in Louisville to show love for her Addison Jo Blair Cancer Care Center nurses and the kids receiving treatment by making signs that could be seen from the windows.
“I have so much love for my doctors and nurses,” she said.