Soldier, survivor urges others to help
U.S. Army | .
published: September 20, 2016
In January of 2015, Spc. Santino Ayala, who was then stationed at Fort Bragg, North Carolina, began shaking uncontrollably.
“I was always good at (physical training) but now I felt weak,” said Ayala, a 21-year-old allied trade specialist with Company B, 501st Brigade Support Battalion, 1st Stryker Brigade Combat Team, 1st Armored Division. “I was in the shower and could see my bones. I would start shaking, shaking in the bed even though I wasn’t cold.”
The shaking, which was a case of rigors, along with a swollen lymph node was a sign to Ayala, despite being revolted by the idea of going to sick call, that he needed to get checked out.
“I started getting worse. I was suffering from fevers every night and would just take ibuprofen,” said Ayala. “It came to a point I went to the (emergency room) where they did a bone marrow biopsy and found HLH.”
Hemophagocytic Lymphohistiocytosis, HLH, is an uncommon often life-threatening syndrome which, if untreated, only gives patients a few months to live due to multi-organ failure. It was later found that the cause of HLH in Ayala was ALK-negative Anaplastic Large-Cell Lymphoma (ALCL), a rare type of Non-Hodgkin Lymphoma, or blood disease.
According to the Lymphoma Research Foundation, ALK-positive ALCL usually affects children and young adults. ALK-negative ALCL is more common in patients over the age of 55 years.
Following his diagnosis Ayala was transferred to Brooke Army Medical Center (BAMC), San Antonio, to begin treatment.
“Leukemia, lymphoma, those blood cancers are very difficult to (treat),” said Maj. Lindsey Graham, chief of Medical Hematology and Oncology, WBAMC. “For organs such as kidneys or livers, there are treatments you can do to hold off (those types of cancers) while waiting for a donor. That’s not the case for blood cancers.”
Graham became familiar with Ayala’s case as she completed the Hematology/ Oncology Fellowship Program, which is the only Department of Defense training program offering onsite autologous and allogeneic bone marrow transplant services, at BAMC.
In March of 2015, Ayala began treatment for his lymphoma with chemotherapy. This is when he met other service members suffering with similar cancers.
“People are dying,” said Ayala, a native of Devine, Texas and graduate of Devine High School. “There have been Soldiers who have lost the battle to cancer such as lymphoma or leukemia.”
During his stay at BAMC Ayala met several service members who were waiting on bone marrow matches to save their lives. Unfortunately, some even passed while he was there.
“Sometimes you have these patients with very horrible cancers, that despite all the toxic chemotherapy you give them, it’s not enough,” said Graham, a native of Houston. “The cancer continues to come back.”
“The problem is most (people in the bone marrow registry) are European Caucasian,” said Graham. “Not enough Hispanics, African Americans and Native Americans are registered.”
The C. W. Bill Young Department of Defense Marrow Donor Program is a DoD program which works with military personnel, dependents, retirees and DoD employees to register in the bone marrow registry. It is the only program that manages military and military-affiliated stem cell donors.
According to the program, every year more than 12,000 individuals are diagnosed with a blood disease requiring a stem cell transplant. The program “matches” Human Leukocyte Antigen (HLA) profiles of donors and recipients aligning HLA as closely as possible to perform the transplants. Although many matches may occur among family members, about 70 percent of those in need are unable to find an appropriate match.
“We give them a new immune system from someone else,” said Graham. “That new immune system from someone else will attack the cancer, whereas the patients’ system may not.”
After completing six cycles of chemotherapy, Ayala was eligible for an autologous (self) bone marrow transplant because the cancer had not made its way to his bone marrow.
“You’re donating the seed to start the flowering of all the different types of cells, white and red blood cells,” said Ayala as he explained bone marrow transplants. “Stem cells create bone marrow.”
Ayala interpreted the process of a bone marrow transplant by analogy with a tree.
“Bone marrow is the root and branches off into the body while stem cells are the seed planted to create the bone marrow,” said Ayala. In an autologous bone marrow transplant one “kills the root but it’s still the same seed,” he added.
Ayala is now in remission and was transferred to Fort Bliss in March.
While Ayala was fortunate enough to be able to donate his own bone marrow to fight the cancer, watching his fellow comrades with blood diseases die due to a lack of match in the bone marrow registry left an impression.
“You drive down the street and see signs and posters for recycling, SHARP, all this stuff,” said Ayala. “Imagine if bone marrow registry posters were up, maybe (some Soldiers with blood diseases) wouldn’t have died.”
Ayala is now on a personal mission to raise bone marrow registry awareness with the help of the C. W. Bill Young Marrow Donor Program and the Armed Services Blood Program, which also offers access to the bone marrow registry.
Registering consists of a cheek swab and filling out personal information which is analyzed and input into the National Marrow Donor Registry. If a donor HLA matches a patient’s, then the donor is contacted and may volunteer to donate. Matches usually occur between people of similar racial or ethnic backgrounds.
“We’re such a heterogenetic country, sometimes that works in our favor and sometimes it doesn’t,” said Graham. “Sometimes (a close match) all it takes. It provides hope to Soldiers.”
According to the National Marrow Donor Program, 70 percent of individuals may not find matches in their own family. Chances of a match and possible survival are sometimes dependent on strangers. Registering does not commit individuals to donate since only one in 430 will match and it’s also voluntary. Donors who match also have modern procedures to ease the donation process.
“It is no longer that painful bone marrow drill through the hips that is shown on television,” said Graham.
The Peripheral Blood Stem Cell (PBSC) donation method is similar to blood donations where catheters are placed in both arms while blood is circulated through a machine that separates the blood forming cells and then returns blood through the other arm. Depending on the patient’s health, doctors may choose between donating through the PBSC method and withdrawing liquid marrow from the pelvic bone.
For Ayala, moving on after his fight with cancer means raising awareness.
“Cancer will always be a part of my life, in a good way,” said Ayala. “If I just move forward, if Soldiers out there just knew one life can save a thousand lives.”
The former boxer said he’s feeling strong and passing Physical Fitness Tests again. While Ayala’s goal is to register as many Soldiers as he can in the bone marrow registry, he is also thinking about life after the Army by serving his local community.
“I want to go home become a San Antonio police officer, and go back to boxing,” said Ayala. “I’m truly blessed from this experience, it was a hard one but I have a mission now.”
For more information on the bone marrow registry visit www.salutetolife.org