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

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.

Jasmine still battles with GVHD and continues to need multiple medications. Once a month she goes in for a check up at the Dana Farber Cancer Institute. Even though recovery hasn’t been easy, Jasmine is doing well and has the support of her remarkable family.

Duane

At the age of 23, Duane was diagnosed with Hodgkin’s Lymphoma in November 2003. This was the very last thing that he and his family had expected. After graduating from college in 2002, he had received a fellowship to pursue a year of independent research and travel throughout the Mediterranean and Middle East. Having just returned to his Bronx neighborhood after such a transformative experience abroad, Duane felt inspired and excited about the future. The shocking news of his cancer diagnosis, however, made him feel as if he had fallen suddenly from the greatest high imaginable to one of the greatest lows.

After months of chemotherapy and radiation treatments, Duane was in remission and he began to put his life back together. In 2004, he enrolled in a graduate program and completed his first year, but just a few months prior to beginning his second year, ominous signs appeared. Follow-up scans showed that the cancer might have returned. After further examination, it was shown that in fact the lymphoma was back. Disheartened, Duane was forced to take a medical leave of absence for one year from his studies in order to take care of this reoccurrence. Traditional treatment was no longer an option for him. As a result, he received an autologous stem cell transplant in February 2006.

It was during this time that he first learned about the amazing work of the Bone Marrow Foundation. With no personal income and only the help of his parents, who themselves were working tirelessly to provide for their son and two daughters, the Bone Marrow Foundation’s financial assistance was a tremendous relief. “Worrying about one’s health is challenging enough. Worrying about one’s health plus where you’re going to find the necessary money to pay for medical expenses is even more nerve-racking,” said Duane. The Bone Marrow Foundation’s aid helped to pay for transportation, sperm cryopreservation, and other expenses that were not covered by his insurance.

After nearly six months of remission following his autologous stem cell transplant, the Hodgkin’s Lymphoma returned once again. He had already begun the second and final year of his graduate program and despite the sorrowing news, he was determined to keep his eyes on the prize. He completed the final year of his studies on time in June 2007 while receiving salvage chemotherapy in preparation for an allogeneic stem cell transplant. In August 2007, Duane received an allogeneic stem cell transplant thanks to the generosity of an anonymous donor, whom he hopes to meet in the near future.

The Bone Marrow Foundation came to his aid once again. Duane received assistance to help with the assortment of medical and miscellaneous costs related to his allogeneic stem cell transplant.

One year following his unrelated stem cell transplant, Duane is in remission and doing remarkably well. He remains optimistic about the future. He and his family are grateful for the continued support and assistance of the Bone Marrow Foundation.

Arelis

Sometimes a small child can have an enormous health problem.

Arelis – a beautiful baby girl – was born on Oct. 23, 2007. But just 11 weeks after her birth, she was rushed to the hospital with a high fever and extremely low blood counts. At first, the doctors believed she had leukemia, but as her health continued to deteriorate, it was discovered that she had a rare and terrible blood disease called hemophagocytic lymphohistiocytosis (HLH).

The body’s immune system normally causes an inflammatory reaction when fighting infections, but in a HLH child, this inflammatory response cannot be “turned off” due to a genetic defect. Without treatment, the condition is rapidly fatal – the only hope for Arelis was high-dose chemotherapy followed by a bone marrow transplant that would replace her defective immune system.

After six long months of treatment, Arelis was given a second chance at life with an umbilical cord blood transplant. Today – thanks to the support of The Bone Marrow Foundation during her long hospitalization – Arelis is at home and getting better every day. In 2009, the family hopes that she will have a normal and healthy childhood.

Duane Bogart

“Once again I would like to say thank you for your foundations assistance. In my previous thank you I didn’t list all the reasons the help was so much appreciated. In January of 2008, I went into the hospital for a standard procedure and ended up staying for heart bypass surgery. I was off work for 8 weeks but had short term disability and accumulated sick time, so our income was not affected. After I had been back to work in March, I just wasn’t feeling as good as I felt I should. Prior to my heart surgery, my doctor had been monitoring my white blood count as it was always borderline low.

“We decided to do a bone marrow biopsy and the results were diagnosed as Acute Myeloid Leukemia. I was given this news on 4/24/08 and on 4/25/08 I was admitted to the Cleveland Clinic, where I remained for 5 weeks. I had enough accumulated sick time to receive my normal pay for 4 weeks. At that point my income was reduced to short-term disability insurance which I had through my employer. I was also told by the doctors I wouldn’t be returning to work. I was admitted again in July to the Cleveland Clinic for Consolidation Chemo. My final hospital stay (my hopes) was in August for a STEM CELL TRANSPLANT. So far I have been leukemia free.

“Before all this happened my wife and I thought financially we would be okay for 6-8 weeks, which we thought would be sufficient for most major illness. What we didn’t figure was all these so called “waiting periods.” Since my diagnoses in April through November, we suffered financially with almost 3 months of waiting periods involving short & long term disability insurance and social security disability. We did receive financial assistance from other organizations, but the funds were for specific reasons (co-pays & etc.) Yours was the only one for living expenses.

“Things are starting to improve for us but your financial help came at a time we didn’t have money for gas in the cars, low in food and was trying to figure out how we were going to pay for parking at my next Clinic appointment the next day. When I opened the letter from your foundation that day we just couldn’t believe what we say. It brought tears to both our eyes. Whatever your sources of funds are, I hope there is some way that you can show our appreciation, for the generosity of those who helped us.”