Patient Stories

Gabrielle

Even a father’s love is not always enough… Gabrielle, born in September 2006, was diagnosed with hemophagocytic lymphohisitiocytosis (HLH) at four weeks old. HLH is a rare, life-threatening disorder of the immune system. The only known cure for HLH is a stem cell transplant. Gabrielle’s parents, Natalie and Will, were devastated by their baby’s illness and soon learned that they had to move to Cincinnati Children’s Hospital for a lengthy period of time for their daughter to receive a lifesaving stem cell transplant. Gabrielle was flown from her small farming community in Iowa to Ohio for her treatment in December 2006. She was hospitalized for over eight months, the majority of her life. Gabrielle’s four year old sister, Abigayle, was her donor and constantly traveled back and forth between Iowa and Ohio for medical visits. Between clinic visits, hospitalization, multiple medications and the gap in medical insurance coverage, the family’s expenses soared as their budget stretched beyond its limits. With neither parent able to work, their home town community (of fewer than 330 people) rallied to help with the catastrophic costs associated with the transplant, but that too was not enough. Gabrielle’s parents were relieved that The Bone Marrow Foundation was there to help with the overwhelming costs associated with caring for a sick child far from home.

Radel

Radel, a 7 year old boy from the Dominican Republic, diagnosed with Fanconi anemia, was unable to receive the medical treatment that he needed to save his life in his native country. Radel’s mother, a divorced, minimum wage earner, turned to an aid organization, Healing the Children, for help. The solution was for Radel, impoverished and very sick, to make the long journey alone to New Jersey where he met and lived with a host family. The Brewer’s opened up their hearts and home to him. Radel was accepted at Cincinnati Children’s hospital to receive a cord blood transplant in January 2007. The hospital donated all of the medical treatment and follow-up care for Radel. George Brewer said, “Be thankful for the healthy children in your life. I have seen Radel experience so much pain, and I am grateful that he is receiving a second chance at life.” George turned to The Bone Marrow Foundation for financial assistance to provide Radel with the support services necessary during the long months of treatment and recovery. Even with the loving support of the Brewer’s it has been a very sad and frightening experience for Radel to be without his mom for such a lengthy period of time. Radel’s transplant physician expects Radel to remain in Cincinnati for an additional three months. The Bone Marrow Foundation is also planning to fly Radel’s mom from the Dominican Republic to Ohio to be with her son during this post-transplant period for emotional support and encouragement.

Jacob

Jacob is pictured here with his donor Stefan, a Massachusetts Institute of Technology student who registered to be a stem cell donor during a donor drive at school. Jacob, a charming, active 14 year old, lives with his parents, Ken and Tammy, in Massachusetts. He is presently in the ninth grade and enjoys swimming, gym and art classes. His father Ken says, “Jacob is a normal kid.” This is great news considering that seven years ago Jacob was diagnosed with acute lymphocytic leukemia (ALL). He had not been through even six months of chemotherapy when he was told that in order to survive he needed a stem cell transplant. Jacob had his transplant at Children’s Hospital in Boston, Massachusetts on November 9, 2000. Ken and Tammy took unpaid medical leaves from their jobs to be with their critically-ill child. “I was scared to leave Jacob for even a minute in fear of never seeing him again,” said Tammy. Both parents stayed with Jacob in the hospital for four months. The family then moved to The Ronald McDonald House for eight weeks because Jacob had to be monitored by his transplant team on a daily basis. During this time, the family had no income and nothing to rely on. Ken said, “Our situation was just a disaster. The Bone Marrow Foundation was the only organization that responded to our needs and was really helpful during this time. This was the blessing we needed and their grant was greatly appreciated.”

Jasmine  is a sweet teenage girl who is currently in high school. She and her family live in Mashpee, Massachusetts. Like most teenagers, Jasmine is very busy. “She is into acting, plays and chorus,” explained her mother, Kim James. Furthermore, Jasmine is a member of The National Honor Society and a member of Falcon Flavor, an R & B dance group. Jasmine is not only involved in many activities, she also maintains excellent grades.

Although Jasmine is doing well in her life right now, she also has been through quite a lot. When Jasmine was eleven years old, she was diagnosed with Acute Myelogenous Leukemia (AML). Kim explained that Jasmine was complaining of pain in her throat and had swollen glands. Initially, her doctor treated her for strep throat. However, one week passed by, and she still had pain. Her doctor then thought it might be a case of mononucleosis. Blood work was taken and the results came back showing leukemia. Kim remembers taking her children to the dentist that day. On the way there, she got a call from the doctor demanding that she see him right away. Upon hearing the diagnosis, Jasmine and her family were devastated. “What do you mean leukemia?” said Kim. “It was difficult to accept since Jasmine was always the healthiest kid and never got sick,” explained her mother.

Jasmine began chemotherapy. “She was very sick after chemo” stated Kim. “It took one month before the doctors figured out Jasmine had a secondary cancer, Hemophagocytic lymphohistiocytosis (HLH). They had to stop treating her for leukemia and treat her for HLH.” Once Jasmine was treated for her secondary cancer, they had to wait for her to go into remission. Without remission, they could not go forward with the transplant.”

Out of all three of her siblings, her ten year old brother Alan was the perfect stem-cell match. A big concern for the family was Alan’s heart problems. He had several open heart surgeries, and they were not sure if he was physically able to be her donor. Fortunately, Alan was able, and Jasmine had her transplant. As Kim explained, “My baby is a fighter.” Kim stayed with Jasmine throughout her hospital stay. They were in isolation for an entire year because Jasmine had many complications. Jasmine got graft-versus-host disease (GVHD), which is a side effect of a transplant that happens when the new bone marrow or stem cells reject or attack the patient’s body.

The James’ were so grateful for the help they received. “The Bone Marrow Foundation is wonderful. They kept us afloat. It was organizations like The Bone Marrow Foundation that supplied the entire family with meals and gave us the support we needed,” said Kim.