It was only a few days after his 16th birthday when Sam Arikupurathu was diagnosed with Acute Lymphoblastic Leukemia.
Three years later the New Hyde Park resident is still battling the disease, defeating it once, only to see it return.
But Arikupurathu has continued to persevere with the support of those around him.
“It’s such a big burden and you cant hold it up all on yourself,” Arikupurathu said. “At first I didn’t know why I would want this to be on anyone else, but I had to let people in. You just have to accept it.”
During their annual international culture club night, New Hyde Park Memorial High School recently held a bone marrow donor drive on behalf of Arikupurathu, who suffered a relapse just a few days after this past Christmas,
More than 20 people in total signed up during the event.
Arikupurathu, 19, spoke from his hospital bed last week as he enters his second month of chemotherapy, which he should be finished by his birthday on the Feb. 29.
If all goes well with the treatments Arikupurathu will soon be headed to the Memorial Sloan-Kettering Cancer Center Rockville Centre to receive umbilical cord blood, that will help fight off his cancer.
He said hopes to then return to college, which he began in September following his graduation from New Hyde Park Memorial High School.
It has been more than three years since Arikupurathu began his fight against cancer, and he can recall the very day he was told the news.
“It was on a snow day off from school, and I had already been to the doctors multiple times for blood tests,” Arikupurathu said. “I knew something was wrong because I was losing lots of weight, sweating when I would sleep, and could just feel something was wrong.
“My mom called me up and said I needed to go to Long Island Jewish Hospital for another blood test, but I just ignored her because I didn’t want to take anymore tests,” Arikupurathu continued. “But then my personal doctor called and said it might be cancer. I didn’t know what to do, I didn’t want go and find out. In the back of my mind I knew it was serious but I didn’t want to face it.”
Arikupurathu, who was at the time a student at New Hyde Park Memorial High School, said his parents bribed him to go with the promise of buying him a plasma TV.
After the blood test was taken it was determined that there was a 90 percent chance that he had cancer, but a bone marrow test had not been done yet. Arikupurthahu was admitted to LIJ shortly after.
“It was when I was in the room when it just hit me, but I tried to stay strong,” Arikupurthahu said. “They had me hooked up to an I.V. pole, and when my cousin came into the room I could see how withdrawn she was. I didn’t know what to do at this point.”
Arikupurthahu received the final confirmation the next day that he had cancer.
He had spent the previous day on the internet researching his particular cancer, learning his type had the highest survival rate.
“They gave me the official confirmation the next day, but at that time I was already looking at stuff online,” Arikupurthahu said. “I always like to stay on top of everything. It still had a big impact because I had to get out school and start chemotherapy two days later. Life started changing and I started seeing a lot less of my friends. I didn’t know how to react and neither did they.”
He said he began induction therapy to reduce the number of leukemia cells in the body through chemotherapy treatments.
After 28 days, Arikupurthahu had completed his therapy and was told his body had gone into remission, only to find out the next day that he was not.
“It was the best news possible until the next day they came up to me and told me I was not in remission,” Arikupurthahu said. “They basically changed the definition for it on me and I was above a certain percentage. That really hit me right there and that is when they told me my only option was to get a bone marrow transplant. I didn’t know what the deal was, everything had changed.”
Arikputhu was not optimistic about his chances in getting a transplant. He was also not sure of the one-year recovery period that he was told to expect.
Moazzam Kahn of the South Asian Marrow Association of Recruiters, said finding a matching donor is “like finding a needle in a haystack.”
“Unlike having to only find a few red-blood type matches, white-blood cell matches are needed for bone marrow transplant,” Kahn said. “Since white blood cells are polymorphic there more than 10,000 combinations. Minorities combined only have a 50 to 60 percent chance of finding a matching donor.”
After seeking second opinions, Arikupurthahu’s family found Dr. William Carol, who worked at the NYU Children’s Oncology Group. The group was responsible for making the protocols for what other hospitals use in fighting childhood cancers and diseases, Arikupurthahu said.
Carol said he worked on a specific protocol in treating Arikupurthahu’s Acute Lymphoblastic Leukemia.
“He was the best doctor we could possibly find,” Arikupurthahu said. “They told us about the testing they have and also new medications that we could try. If I responded to the treatments and went into remission then I could continue that treatment for the next two years. We decided it was the best way to go.”
Arikupurthahu then transferred to the NYU Tish Medical center where he began more chemotherapy and more testing. Results showed that he was responding well to the treatment and his leukemia cell count was going down a significant amount. Arikupurthahu then began visiting the Hasbro Children’s Clinic in Rhode Island, where he said the clinic had its own TV room, children room, library and own classroom.
After a few treatments Arikupurthahu was told his leukemia was undetectable, but still needed to continue treatment for another two years.
Throughout the process Arikupurthahu wasn’t always positive. He said he was depressed to have to miss his junior year of high school, during which he was home schooled.
He said didn’t think he would be going back to high school and wanted to simply get his GED rather than continuing with home schooling.
“It was right in the middle of the junior year, right before winter break when all the kids were studying for their SATs and stuff. That is when I asked myself what was the point of all this?” Arikupurthahu said. “I might as well get my GED and go to community college. I had a date set up to take my GED and a day or two before something in my mind said ‘just go on, you know you can do it, and if you don’t do it you won’t go to senior prom or graduation.’ Knowing that in the back of my mind gave me this motivation and it changed my perspective.”
Arikupurthahu said the support he got from everyone at NYU helped him, especially that of Dr. Laura who told him whatever he wanted or needed to do, they would help him with it.
“They told me I could and can do it, and it can be what I want,” Arikupurathu said. “I changed my mind and decided to forget the GED, that I will continue home schooling. There were people I’ve known for years who I wanted to graduate with.”
Arikupurathu was able to start his senior year at New Hyde Park Memorial and begin maintenance therapy, which only required he take pills and receive regular blood tests.
During his senior year he said he was able to live life almost as if he was normal. He attended the New Hyde Park Memorial prom, graduation and even went on a cruise.
“I could go to the movies, and had no real worries about going to crowded places,” Arikupurthahu said. “Different things like any teenager would want, and not have to worry about someone else being sick and getting me sick. I would get tested twice a month for blood count and get an IV push of medication.”
By December 22, 2011 Arikupurthahu was completely done with treatments and had just finished a semester at Nassau Community College with a 3.8 GPA. He said Nassau Community College was a great experience, but he was ready to transfer to another school.
“That day was surreal, I even left the Facebook status about it and got a good 130 likes,” Arikupurthahu said. “There is always a light at the end of a tunnel, look at me as proof. I was amazed by all the support and it proves itself that it shows. I went to visit my high school to visit my guidance counselor, my home school assistant Ms. Graslin Beck - who helped me out during the whole treatment with school. When I went in I could see the tears in her eyes and how she was. It was the best Christmas gift I could get. I did all this and proved to everyone that I beat cancer - the feeling was just incredible and unbelievable, I had never felt that before.”
It was two days after Christmas when Arikupurthahu had a routine blood test and after returning home received a phone call to come in for another test.
Arikupurthahu said he felt tired and needed a nap. When he awoke he said he needed to use his cell phone, but it wasn’t getting good reception so he picked up the house phone. It was then he listened in on a conversation that would take his life on yet another unexpected turn.
“I heard my mom on the phone with the doctor and the first thing I hear is ‘what do we do now - do we have to have a bone marrow transplant?’’ Arikupurthahu said. “That is when I realized something was wrong. I heard mom asking if she should tell me, but she said she didn’t want to tell me tonight. She and I knew I was due for an inpatient treatment the next day. I heard my mom said she didn’t want me to do anything crazy.”
Arikupurthahu then walked down the stairs and confronted his mother with what he called “that dead stare.”
“I asked her what was wrong and was had happened and when she said nothing was wrong I told her to stop lying and that I had heard her on the phone,” Arikupurathu said. “The first thing I did was get my coat and ran outside to the backyard steps and just started balling. I felt like life was over and went into this crazy depression. It all hit into me. I went into my room, locked the door and sat there as I let it sink in, but I really couldn’t let it sink in right there.”
Arikupurthahu said he went downstairs and told his told his family they weren’t allowed to come to any of his appointments anymore and asked why they would lie to him.
After taking a few hours to calm down in his room, Arikupurthahu decided he was going to get an Iphone upgrade and buy an Ipad.
Since it was around Christmas he said his family had planned to take him out to get an upgrade anyway, and he also had his father’s credit card number.
“They knew I was angry and pissed, and didn’t want to argue with me,” Arikupurthahu said.
He was once again back at Tish hospital and Arikupurthahu went into a depression as he dealt with his relapse.
“I don’t know how or why, but everything went into a downfall and depression starting hitting me,” Arikupurthahu said. “I didn’t eat for a good four days, didn’t let my family visit for two weeks. It was the support of everyone at NYU that kept me going. They were the ones who helped get the strength inside me to face my disease and accept it. Once I finally accepted it, I had to deal with what God gave me. Once I had it in me I let visitors come by. I started making sure my mom was doing okay - I just couldn’t let it be like it was three years ago.”
Once Arikupurthahu was able to get himself back on track, he said he has faced “many many” issues that brought him down, but with all the support he gets he is “doing what I have to do”
Arikupurthahu said he is remaining positive that his new treatments will bring success and hopes his story will help inspire people not to give up.
He said he wants to be a biochemist and help create medication that will help with people in his condition. It’s a field of study he said he always enjoyed, even before his sickness began.
Arikupurthahu said he also wants to be that person who goes in and speaks to people who are in his position who might have lost some faith.
“They might need that extra something to boost their system and I want to be able to do that personally,” he said. “I want to help someone and know you are the perfect person to speak with them.”