March 9, 2001
By Yvette tenBerge
You would not be able to tell much
about Carmen Delgadillo's life by simply looking at her. This
attractive, petite, 37 year-old woman easily blends in with the
other stylishly dressed people sitting in Starbucks with newspapers
and magazines opened and steaming coffee cups in hand. It is only
after you look into her eyes and listen to her almost breathless
manner of speaking that you might be able to begin to realize
the impact of what she has recently been forced to live through:
every parent's worst nightmare, the loss of a child.
San Diegans and football fans throughout America came together last September to offer encouragement as her 14 year-old son, Scott, who suffered from leukemia, visited Notre Dame in South Bend, Indiana. The Make-A-Wish-Foundation, an organization famous for granting wishes to children with life-threatening illnesses, stepped in to grant Scott a portion of a wish that he had carried close to his heart since he was five years-old. Although they could not help him attend Notre Dame or allow him to play on its legendary football team, they could fly him and his family out to see a game, arrange for a campus tour and introduce him to the football coach.
It did not seem to matter that the Foundation could not grant Scott's wish completely. Those who knew Scott and those who were following his story believed that he would beat the disease; they were convinced that this remarkably positive young man would be able to turn his own dreams into a reality. When he was first diagnosed in January 2000, Scott's own doctors had given him a 75 percent chance of recovery and a protocol (a plan for a course of medical treatment) of two and a half to three years - odds that, although hopeful, would still keep anyone, especially a determined mother, focused on finding ways to push that number up to 100 percent.
"Like any other parent in this situation, I thought that [our family] would get through this, that it would be something in the past. We were not prepared for [the leukemia] to return nine months later when [Scott] fell out of remission," says Ms. Delgadillo; she goes on to explain that with acute lymphoblastic leukemia, the form of leukemia that Scott had, a form that attacks the body's T-cells, relapses are most often fatal. The chances that chemotherapy will be effective are slim, and a successful bone marrow transplant is often a patient's only hope of recovery.
Bone marrow is a substance found in the hollow center of bones; everyone has bone marrow, but, as is the case with blood, the donor's marrow must be an exact match with the recipient's marrow. Often an exact donor match can be found in the patient's family. However, this is not always the case. If the marrow belonging to a patient's siblings or other family members does not match that of the patient, doctors are left to search through the National Marrow Donor Program's (NMDP) database for a compatible donor. This was the case with Scott.
It was at this point in Scott's illness that Ms. Delgadillo became faced with a problem that has plagued the Hispanic community and other ethnic communities since bone marrow transplants first became available. "There just aren't enough Hispanic people who even register to become donors. I'll be honest, a few years ago, I was guilty of not getting involved, as well. I remember there was a young boy at church who got up in front of the [congregation], pleading for people to donate at his father's blood drive," says Ms. Delgadillo, clasping her hands together and wincing at the memory. "I remember walking out of church that day and looking at the blood mobile set up outside. I walked right on by. A few years later, it is my son who needs a transplant, and it is me standing up [in front of the congregation] pleading to save his life."
Despite the fact that three blood drives were held in communities with a high percentage of Hispanics, relatively few Hispanics showed up to be tested. It is this lack of concern that has motivated Ms. Delgadillo to work hard to increase awareness and increase the number of minorities who register with the NMDP and donate.
The National Marrow Donor Program, a non-profit organization that facilitates unrelated donor stem cell transplants for patients with life-threatening blood diseases who are unable to find a match within their own families, currently facilitates more than 130 transplants a month. Blood stem cells used in transplantation are most commonly taken from bone marrow and umbilical blood, the latter of which can be donated by a mother after the birth of her child. As of December 31, 2000, over 4 million people were registered as potential donors. Hispanics made up only 9 percent of that number. Although donor match-es do not strictly occur between people of the same ethnicity (see Maria Huaracha's story in sidebar), those at the San Diego Blood Bank agree that a diverse registry of donors will increase the number of minority patients able to find a match should they need one.
"Every year, thousands of patients of all racial and ethnic backgrounds are diagnosed with leukemia, aplastic anemia and other potentially fatal diseases. A marrow or blood stem cell transplant from an unrelated donor might give many of these patients another chance at life," says Marlo Brooks, a recruitment Specialist at the San Diego Blood Bank's Bone Marrow Donor Center hired to raise minority awareness as to the importance of bone marrow donation. "Because the characteristics of marrow are inherited, the best chance of finding a suitable donor is someone from the same racial or ethnic background as the patient."
Research within the San Diego Blood Bank's outreach programs shows that the reasons people within particular ethnic groups have for choosing to donate or not donate, vary. "What we have found in the Hispanic community is that [the majority of Hispanics] have emotional reasons for donating. They tend to donate for one specific person versus anyone who comes up as a match. Many times we call back [to follow-up] and the interest is not there," says Ms. Brooks, attempting to sum up her findings. "They are moved by a story. Out of all the minority groups, [Hispanics] are really the most family and community based."
If the Blood Bank's research is correct, the key to increasing the Hispanic community's participation just might lie in reminding us that we are all members of one big, extended family, something that Ms. Delgadillo learned from her recent experience. "I want to help the Hispanic community to become more aware. So many of the children I saw in Children's Hospital were Hispanic and many were from very humble means. Because I speak English, I was more aware of my options than other mothers and I knew [from the beginning] that I could get out there and challenge what the doctors were telling me. If I can save one or two lives [by helping to increase awareness now] then I have done something in Scott's honor."
For those interested in supporting the research and treatment of blood related diseases, donations can be made to the Cox Kids Foundation/Scott Delgadillo Fund c/o the San Diego Foundation, 1420 Kettner Blvd., Suite 00, San Diego, Ca 92101. Proceeds from the April 1, 2001 San Diego Gulls Game @ 5:00 p.m. will also go to the above fund.
By Maria Huaracha
During a newscast in October of 1990, a story was told about a little Hispanic boy who needed a bone marrow transplant. They were asking Hispanics to come and be tested, to see if they could possibly be his match, since it was more likely to find a match in the same ethnic group. After much contemplation, I went to be tested. "Lo que Dios mande", "It's God's will" I said to myself. I thought to myself, that's some-one's baby and they want to see him grow up and live a normal life. Time passed, and after a while I forgot I was on the National Marrow Donor Registry (NMDP). That was until 1998, when I received the call of a lifetime.
March 18, 1998, while working I received a message to phone the Bone Marrow Donor Center, I was a possible match. In a state of absolute surprise and shock I returned the call and spoke with a representative, who asked if I had remembered signing up on the registry? My immediate response was "No." It had been 8 years, since I first signed up. After an extensive health history screening, an appointment date was set for further blood tests. Michelle Hartup, the coordinator that explained the procedure and drew my blood, also made it clear that it could take up to three months before we would know if I would be the match. Waiting to me, was the worst part. For the weeks and months that followed, many questions and thoughts ran through my mind. There is a 37-year-old man somewhere in the world with Chronic Myelogenous Leukemia (CML) who needs a bone marrow transplant. Is he married? Does he have kids? Is he an only child? What a terrifying feeling it must be, not to know what tomorrow would bring.
Finally in June I was told I was the match. Thrilled and exhilarated were understatements to how incredible I felt at that moment. The chance to help save a fellowman's life was in my hands. Next came, more blood tests, a video showing a marrow collection, and a physical exam. "This is really going to happen" I told my husband. I knew he was worried, but he never held me back and I thank him for not trying to. Deep down he understood why this was especially important to me. In 1993 my Mother died of rectal cancer, and a few months before I would be called to help this man, my 6-year-old niece was diagnosed with Acute Lymphoblastic Leukemia (ALL). If I had the means of stopping someone from going through the pain of chemotherapy, radiation and the anguish of not knowing if they would live, I'd do it in a heartbeat. The amount of discomfort and time the bone marrow collection takes, does not compare in the least to what that patient is going through in order to survive.
August 3, 1998 my big day came, I am now a bone marrow donor and I say that very proudly. The bone marrow harvest was done at Children's Hospital, and the care I received there was exceptional. When I awoke in my room, I realized I was in same room my niece had been in for her treatment. Later that day while I walked up and down the halls for exercise, a woman asked the nurse, "Why is she here?" The nurse replied, "She donated bone marrow today." The expression on the woman's face as she looked at me was empowering as well as heartbreaking. I imagine her child was awaiting a bone marrow transplant since I was on the Hematology/Oncology unit at Children's.
After a long year of anonymous letters, for the first time in September 1999, my 37-year-old male with CML had a name. Heribert Hecht of Neustadt/ WN, Germany, was my new big brother. Heri as he likes to be called, was an only child, but now he calls me his baby schwester (baby sister). Among the other things we share, Heri and I have the same blood type, which is the same as our outlook on life B+. Before the transplant Heri had fine sandy blond hair, now he has thick dark brown hair, I tell him, "It's the little Mexican in him." Whenever Heri feels ill, I know it before a phone call is ever made. Phone calls and e-mails are our weekly routine and not only between him and me, but also between my husband, his wife and all of our children. My questions about my purpose in life have now been answered. I now know I'm to experience life with my new big brother, Heri.
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