"I had to face the reality that the blood that saved my life from cancer 10 years earlier gave me HIV. I went from no medications to being put on AZT. AZT was available to children because of Elizabeth Glaser."
Ben has been living with HIV since childhood. He and his wife, Kasiah, live in Virginia.
January 1, 2009
Ben is an EGPAF Ambassador who travels around the country to help raise resources and awareness in order to help bring hope to children. He lives in Virginia with his wife, Kasiah.
Imagine a two-year-old child. Envision your child, your niece or nephew, your brother or sister, your neighbor, your friend's child. Picture this loving, healthy child playing outside, running around, and just generally being a kid. Now visualize this child's body being destroyed by cancer in three weeks. Two surgeries, three blood transfusions, fifteen months of chemotherapy and radiation therapy, and many, many prayers are required just to keep this child alive. That child was me.
I was diagnosed with bilateral Wilms' Tumor, Stage V. The doctors told my family that it would be a miracle for me to live through surgery. Wilms' Tumors attack the kidneys. I had tumors on both kidneys. I had a tumor that was 11 inches by 15 inches plus others throughout my kidneys and abdomen. During a 15-hour surgery, the doctors removed my right kidney and part of my left kidney. I had two surgeries; each required a blood transfusion. I received my third blood transfusion when my platelet count was so low that I started to bleed through the pores on my hands, face, and feet. The chemotherapy made me lose my hair five different times and the radiation therapy made me hallucinate and stop breathing. The treatments withered me down to 23 pounds and if I was touched, I would bruise. I lost everything but my will to live. I fought. I did not let the disease beat me. I am a survivor!
Over time my health continued to improve. My hospital visits were daily. Then weekly. Then monthly. Then every few months. Then twice a year. Then yearly. At my 10-year check-up for cancer. I was celebrating being cancer-free for 10 long years. That was a huge milestone for me and my family. I saw the same doctor as I had when I was six. He was excited when he saw me. I had grown, gained weight, my complexion was normal, and I had hair! He wanted to do just a physical and then send me home. My mother reminded him that I bled through my pores when my platelet count was low and that we could not take any chances. He agreed and did some blood work along with the physical. I had been to the hospital many times, so I did not think any different for this appointment. Plus, all I could think about was getting ready for the summer break.
A few days had passed when I came home from school to see my mother crying on the edge of her bed. I walked up to her and asked innocently, "Why are you crying?" She responded with tears streaming down her face, "The doctor called. You are HIV-positive." I froze. I became dizzy. My body went numb and I collapsed into my mother's arms. She held me, rubbed my head and told me, "Everything is going to be okay. Everything is going to be okay." I had to face the reality that the blood that saved my life from cancer 10 years earlier gave me HIV. I returned to the hospital and went to the infectious disease doctor, instead of the oncologist. I went from no medications to being put on AZT.
AZT was available to children because of Elizabeth Glaser. Elizabeth demanded that medications, doctors, research, and treatment be available for children. Elizabeth did not back down until children's voices were heard. Eventually my HIV became resistant to AZT and the medication no longer worked. I started taking DDI with the hopes that it would work for me. There are no guarantees that these drugs will work for you. Therefore, many medications must be created and continue to be created.
When I graduated from high school, I was introduced to the HIV "cocktails" at the National Institutes of Health (NIH). The "cocktails" are combinations of several drugs that are more effective than just one drug at controlling the HIV virus. For some, these medications successfully add years to life. But for others, there are often painful side effects that accompany the medication. And some build up resistance to a certain drug and the “cocktail” becomes worthless.
The bottom line is, there are still many children who are constantly waiting for the next medication in order to survive. Eventually, I was kicked out of the pediatric clinic at NIH, which was a good thing—it meant that I was too old for the clinic. I was moved to the adult clinic at NIH. I have graduated from college, twice. I have been married since 2003, bought a house, started a career, and planned for my future. Why? How? I have been very lucky. I have had access to care and treatment. The BOTTOM LINE is that EVERY CHILD DESERVES A LIFETIME. We need to bring this care and treatment to all the children around the WORLD!