By Gloria Romano-Barrera.
“I started to notice bruises on my shin; I was losing lip color and I was also very tired,” shares Briana Donis of her initial symptoms. “It was hard for me to work out and my headaches were terrible. I finally talked to my grandma and I said ‘I think I have to go to the doctor to get checked out.’”
In addition to noticing petechiae (tiny, circular, non-raised patches that appear on the skin or in a mucous or serous membrane that occur as the result of bleeding under the skin), she was losing her life.
Initially diagnosed with anemia, Donis took iron pills, however, after she did not get better, she revisited the doctor. Soon after, doctors found her blood levels were extremely low and they rushed her to the hospital for an immediate blood transfusion. It was there where she was diagnosed with severe aplastic anemia.
Diagnosed with the blood disease at the age of 18, it was during her senior year of high school on March 14th, 2014 that she needed multiple transfusions of hemoglobin and platelets to keep her alive. Severe aplastic anemia (SAA) is a disease in which the bone marrow does not make enough blood cells for the body. Aplastic anemia can range from mild to severe with bone marrow transplants used in severe cases.
According to the Aplastic Anemia and MDS International Foundation, between 600 and 900 people are diagnosed with aplastic anemia each year in the U.S. It can strike people of any age, race or gender, but it’s more common among children, teenagers and older adults.
Donis received one ATG treatment and when that did not work she had to proceed with a blood stem cell transplant. She received her first transplant at Texas Children’s Hospital in December 2014, but it quickly failed. She faced many complications until her next transplant was scheduled.
“I had a really weak immune system and they had to make my immune system even weaker,” she shares. “They had to suppress it with chemotherapy and radiation in order for me to able to accept the donor cells.”
The non-profit donor organization Be The Match is working hard to deliver a cure for blood cancers and blood disorders. For patients with blood cancers like leukemia and lymphoma, and other life-threatening diseases, a cure exists.
Be The Match is a community of donors, volunteers, health care professionals and researchers who deliver cures by helping patients get the life-saving blood stem cell transplant they need. Their passion to save lives drives them to help more patients survive each year.
According to Erica Sevilla, Be The Match Registry® spokesperson, out of more than 20 million potential donors on the Be The Match Registry only 7 percent are Hispanic. Hispanic patients currently only have a 46 percent likelihood of finding a perfectly matched donor, which means there is a great need for more ethnically diverse donors to join the registry to improve the chances of a patient battling a life-threatening blood disease to find a cure.
“Finding a blood stem cell match is more complex than matching blood type, it is urgent that as many healthy individuals as possible join the registry,” shares Sevilla. “A bone marrow transplant from an unrelated donor is like searching for a genetic twin – so if a donor matches a patient, they may be their only hope for a second chance at life.”
The Be The Match Registry® is the world’s largest and most diverse donor registry. With morethan 20 million potential blood stem cell donors and more than 295,000 cord blood units on the Be The Match Registry, the organization provides patients with access to more than 33 million potential donors and more than 765,000 umbilical cord blood units on U.S. and global registries.
More than 1.7 million new potential donors were added to the Be The Match Registry in 2018, of which more than 525,000 were recruited in the United States. Thirty one percent—more than 161,000 — of the potential donors who joined the Be The Match Registry in 2018 were ethnically diverse.
In March 2015, Donis received her second transplant. Radiation therapy was increased and other complications arised. However, everything seemed to fall into place as time went by. “My body was done,” she shares. “I felt I was microwaved. I couldn’t get out of bed, I had fevers all the time, but now I feel great that the second transplant worked.”
Not only did Donis lose her hair during the process, she was distraught she was not going to be able to start college like her friends did.
It’s been a long journey of recovery for Donis and today she proudly walks the halls of the University of Texas at Austin as a third-year college student. Doing what is best for her body, working out and having a positive mindset is how she lives her life.
Having developed mental strength and seeing life with a different lens, Donis describes life as beautiful and is forever grateful not only to her family, but for life as well. While her mom lost her job, and her father split his time between work, family and the hospital, Donis also remains thankful to her grandmother, who was also her caregiver.
“I make sure to let people around me know how grateful I am for them and the things that they do in my life,” shares Donis. “You never know when your last day is and as cliché as that may sound, it is so true. That is how I see the world. You do what you can, when you can and don’t be sad. Don’t live sad. Try your best to be positive.”
With a mission to save lives, Be The Match also supports 36-year-old Susie Rabaca, a mother of five ages 14, 13, 4 and 6-month-old twins, who is now waiting for her second transplant with hopes of eliminating her cancer. Rabaca was diagnosed with leukemia in September 2018, and learned she would need a blood stem cell transplant.
Rabaca found a matched donor and received a transplant in January 2019; however, at her 100-day post-transplant follow up it was discovered her cancer had returned.
Her search for a donor in the Fall of 2018 (when she was pregnant with twins) went viral and more than 85,000 people across the U.S. joined the Be The Match Registry on her behalf. According to Rabaca, her goal is to get 100k people to join the registry – she is hoping more people will continue to join as a result of her battle.
Today, Rabaca is battling against her life-threatening cancer but remains hopeful and continues to share her story and encourage more people to join the Be The Match Registry.
“The goal is to get me back to remission and then after that, I would go straight to transplant if we have a donor,” shares Rabaca. “That is why we need people to register. I still need to find a donor and a match for a second time, so it is very important for people to do it.”
According to Sevilla, as a Hispanic patient, Rabaca’s odds of finding a match were less than 50 percent,
a disparity that she is determined to change and continues to do so as she courageously shares her battle publicly and encourages more Latinos to join the registry.
“Susie’s story is miraculous,” Sevilla shares. “She delivered two healthy twins and went on to have a blood stem cell transplant. Unfortunately, her cancer has returned and she will need another transplant so she can continue to care for her five children. Susie is a true hero whose battle with leukemia has inspired more than 85,000 people to join the Be The Match Registry on her behalf.”
Transplant outcomes and experiences are unique to individuals, all depending on disease, disease stage, the patient’s age, health, timing of treatment, degree of match, and many other factors. According to Sevilla, sometimes a transplant will not be successful and doctors determine a second transplant to be the best course of action. In Donis’ case, her second donor’s cells successfully grafted with her own and she found her cure. Rabaca is now awaiting a second transplant with hopes of successfully eliminating her cancer. “We cannot predict how she will respond to this next treatment,” says Sevilla. “For most patients, a blood stem cell transplant is their only hope of a cure. But we are hopeful and inspired by Susie’s fighting spirit. Her story has touched so many people.”
Rabaca remains hopeful and positive despite everything. “God and my kids are what gets me through every day because they need me,” she shares. “I can’t be negative even though I want to sometimes. It’s discouraging to go through this, but I have to stay strong for my babies.”
Rabaca’s advice for anyone going through a similar situation is to stay strong, have faith and hope.
As ambassadors for Be The Match, both Donis and Rabaca encourage everyone to become donors and save a life. In 2016, Donis met her two donors, Fernando and Jose, at a Be The Match’s Council Meeting. She is now five years post-transplant, happy and healthy.
“Thousands of patients are given a second chance at life after receiving a transplant and essentially being cured of their disease,” shares Sevilla.“For patients like Brianna, a young woman with her whole life ahead of her, having a matching donor who could cure her of her blood disease changed everything. She could continue going to school and living her life. Some patients go from needing blood transfusions ever few weeks and constant hospital visits to being fully cured of their disease and able to live a healthy life.”
Donis plans to graduate next year and hopes to have a career with Be The Match.
“It’s so rewarding to be able to save somebody’s life or have a chance at it,” shares Donis. “You are probably that person’s best chance of their future. You are not impacting that person’s life, but everyone’s life around them. My life is here today because of donors. I needed transfusions every day, and I am here today because of them.”
What is the best approach to donating?
There are two methods through which a registry member may be asked to donate: PBSC or marrow donation. PBSC stands for peripheral blood stem cell collection – a nonsurgical procedure similar to donating plasma where blood is extracted from one arm, stem cells are collected by a machine, and remaining blood is returned through the other arm. For five days leading up to a PBSC donation, the donor will receive injections of a drug called filgrastim to increase the number of blood forming stem cell in their bloodstream. Marrow donation is a surgical procedure that requires the donor to go under anesthesia and marrow is extracted from both sides of the back of the pelvic bone.
Donation is not painful, although donors do describe some muscle aches leading up to PBSC or following marrow donation. Most donors return to work or school within one week, if not sooner. The patient’s physician will request which form of donation they require for optimal results.
How can someone become a donor?
LATINA Style readers who are in good health and between the ages of 18 and 44 years old can join the Be The Match Registry for free. All it takes is a cheek swab to have your genetic typing added to the international registry. The kit will be sent to your home address within one week and once the cheek swab is returned, it will take another 4 to 6 weeks to have your blood stem cells typed and receive your official registration card via mail.
To register on behalf of patients like Susie visit: http://join.bethematch.org/susie.