Imagine coming home from a week long camping trip only to discover that the morning fevers you have been having are precursors to your worst nightmare. Nancy Parmar, a 20-year-old pre-dental student at Brooklyn College, went into the doctor’s office the morning of July 25th, 2013 only expecting a tick bite to be the cause of her unexplained high fevers. A day later, she is called back into the doctor’s office only to be diagnosed with Acute Myeloid Leukemia (AML) on the basis of her skyrocketing white blood-cell count (WBC). She was hoping to enjoy the rest of her summer and get back to her junior year of college but now she is trapped in a hospital room without a single clue as to when she would be home again. After going through three kinds of failed chemo-therapy regiments, she is on a clinical trial drug which may or may not inhibit the aggressive FLT3 MLL mutation in her body which is causing the cancer. Due to the lack of a bone marrow match, she is resorting to a cord blood match with a survival rate of 50 %. Nancy Parmar is my younger sister and this is her story.
It is true what they say, “you don’t know what it feels like until it happens to you”. Truth is, a cancer cell regenerates in your body every 72 hours, if you are strong enough to fight it at the moment it occurs, you are lucky; if not you become a statistic. According to the institute for justice, “Leukemia will strike 44,000 Americans, including 3,500 children. It will kill about half of the adults and 700 of the children. Only 30 % of the patients diagnosed with leukemia will find a match within their family, while others will have to resort to various bone marrow registries which carry potential matches within their ethnic group. The percentages of donors who are available and willing are: 65 for Caucasians; 47 percent for Hispanics; 44 percent for Asians (including South Asians and Pacific Islanders); 34 percent for African-Americans.”
The lack of donors haunts every person diagnosed with leukemia and other such blood cancers. The National Bone Marrow Registry (USA) in 2009 calculated that there were only 139,460 South Asian bone marrow donors registered in all of the United States; that is only 1.9% of the South Asian population in the country at the time. Despite having multiple organizations such as the American Bone Marrow Registry, Delete Blood Cancer (DKMS), and the sub-group oriented South Asian Marrow Association of Recruiters (S.A.M.A.R) and The Nargis Dutt Cancer Foundation readily available to the community, South Asians are rated amongst the least likely donors till date. These are mere statistics for most readers, but for a child fighting for his or her life, it is a matter of one more donor that could have freed from their sorrows. Mr. Kavi Kirti, the coordinator for the Seattle, Washington branch of The Nargis Dutt Cancer Foundation urges more South Asians to get tested, “Please go and get registered for bone marrow donation. A life somewhere in this world is awaiting someone’s generosity of donating a matching bone marrow, perhaps only you can save it. You are that special. Please get registered and find out.”
The lack of South Asian donors is not only problematic in foreign countries but also in the homeland. Despite having support from Salman Khan’s influential Being Human Campaign, The Marrow Donor Registry of India – Mumbai is at constant battle to recruit more donors to help fight this vicious disease. Dr. Sunil Parekh of the Marrow Donor Registry of India (Mumbai) believes, “When you decide to be a stem cell donor, you not only save a life, you add meaning to your own.” In India alone, 40,000 leukemia patients succumb to death annually due to a lack of bone marrow donors, a large number of whom are children; the children that could have been tomorrow’s astronauts, scientists or superstars. Considering India’s population of 1.2 billion, there should be no reason for 40,000 people to lose their lives.
Potential donors fear extensive invasive procedures and therefore do not wish to become involved. The words “bone marrow” are enough to promote hesitation in any human being. Thankfully modern technology has helped reduce the number of invasive procedures required for a bone marrow transplant. The process is simple. In the circumstance that you are a donor match, someone from the registry will contact you to see if you are still a willing and able candidate. If you agree, a through medical checkup will be conducted to ensure that neither you nor the patient will face complications post the procedure. Post medical clearance, a small amount of stem cells will be taken from you via Peripheral Blood Stem Cell Collection (PBSC), a procedure similar to standard blood donation. The stem cells go through a machine which separates blood from the cells and the blood is then filtered and returned to your body to ensure your health. The cells being extracted are excessive cells which are enhanced in the body due to G-CSF, a stem cell growth factor injection given to the donor for 3-4 days prior to donation. The recovery period for the donor in most cases vary from 3-7 days. During that time frame, the donor may experience fatigue, insomnia and nausea; but remember every donor is different and some may not even experience these side effects.
Drives are constantly being held around you. All it takes is one simple step in the right direction. For those in New York and Florida, DKMS and Checkmate, Caner will be holding drives as part of their Sawb [U]niveristy Campaign, in honor of Nancy’s ongoing battle with leukemia, at the following locations:
Tuesday October 22th 2013 at Baruch College (Manhattan) 11am – 5 pm
Thursday October 24th 2013 at Fordham University (Bronx) 1 pm
Tuesday October 29th 2013 at Brooklyn College (Brooklyn) 1 pm – 6 pm
With future drives at:
College of Staten Island (Staten Island)
Hunter College (Manhattan)
University of Miami (Florida)
Embry-Riddle University (Florida)
Nancy’s cancer is not a result of any “bad habits” or genetic inheritance, it simply happened because it had to. She may not get a second chance at life, but there are others out there who are still deprived of their first. A simple cheek swab and a few pints of stem cells is all it takes. Give the gift of life, become a bone marrow donor.
Author: Diana Lydia Parmar
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