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On May 25, 1997, God gave us the most beautiful gift of all. Tanea was born with her eyes wide open; we knew then that she was going to be special. I know that all children are special, but there was always something about her that stood out.
As Tanea grew and began to walk, I would take her out with me as I ran my daily errands. As I stood in line to pay for merchandise, I heard a child clapping their hands and saying "Praise the Lord, Hallelujah." As I turned very quickly, there was my 3-year-old niece standing, giving God praise. As a child Tanea was quite popular, almost everyone we knew wanted to take her places. My best friend, Natausha Green, came over one day to pick me up, when she first saw Tanea. She became attached immediately and wanted to take her to church. I had to convince my sister, who was Tanea's mother, that my friend was truly the best person I knew. Reluctantly, she allowed Tanea to go to church with her new "Godmother." This was the beginning of that special light that shined within Tanea. Tanea loved church and everything that came with it. She loved the music and couldn't stop singing it. She loved the praise dancing and began dancing with the older women of the church. She was the only child dancing with the adults at Mt. Herman Baptist Church, where she was christened.
Most of all, Tanea loved to hear the word of God, and brought the message home to everyone. Tanea had a passion for reading and drawing, but what she really loved to do was dance. At the age of 10, she earned a ballet scholarship to one of the finest ballet schools, Columbus Ballet Met. As she perfected her dancing, she performed in many plays such as La'Verne Reeds' The Chocolate Nutcracker. Her first performance in the play was in 2003 and continued every two years that followed. She always wanted to play the lead role of "Claire," but she was still new to the program and had much to learn.
As Tanea perfected her ballet, she was struck with career ending news. She had begun to have headaches while practicing her back bend. I decided to take her to the doctor who told me after feeling her neck, that she needed to see an eye doctor. He told me that at least there were no tumors. On April 5, 2008, the day after our doctor visit, Tanea was at ballet practice and her balance was off. Her Godmother met me at Nationwide Children’s Hospital. The doctors there performed a CT scan and came into the room to give us the news. Instead of removing her from the room to tell us the news, the doctor said it bluntly. She had a mass on her brain, but needed an MRI to determine what it was. I will never forget how hysterical she was. She looked at me and her Godmom and said "I know what a tumor is, I don't want to die.” I felt as though my world had ended, but convinced myself that maybe it was an infection or something else. I had to call her Mom, but she was grocery shopping and did not have a cell phone. After getting the family together, we had to wait until Monday for a diagnosis. Because MRI’s were not done on the weekend, we had to wait until that Monday, April 7th. I had faith that this was no tumor, that Tanea would be fine.
After the test was done, we were given the news: Tanea had a rare, inoperable tumor on her tiny little brain stem. Glioma brain stem tumors are known as "The Terminator" because it is 99.5% fatal. I lost control of my tears, my legs and I just wanted to die. As a friend lead me outside, picking me up many times, something happened. As the air hit my tears, they were drying up and I couldn't make myself cry. Then a tingle went through my entire body and took over my consciousness. I knew then that God had taken over; he had a plan for me. I felt the sun on my face and I was filled with so much faith, I wanted everyone to know. I went back into the hospital, where everyone was still hysterically crying. I ran up to tell them what had just happened to me and that everything was going to be just fine. I guess they had thought something was wrong with me, because no one really listened, they just kept crying. I then went into Tanea's hospital room, where she was asking questions. She thought the doctors who gave us the news said there was nothing wrong, in fact it was quite the opposite. Tanea was going to die within a year, and there was nothing anyone could do. She asked me, "Auntie, why is everyone crying?" I told her, "look, Auntie is not crying, because God said it was okay.” She then asked if the tumor was contagious, because she did not want to give it to anyone else. I assured her that it was not, but we had to try to find someone who can help.
Tanea's mom and her Godmom were still crying, all day. Her older sister, Troi was no longer herself, she put up a wall and did not want to talk about the diagnosis or the prognosis. Traevon, who was five years younger than Tanea, was trying to understand what was happening to his family. We began researching, looking for a cure, but there were none. So we traveled to a Proton Clinic in Indiana, to find other treatment options, but were given the same answer. This disease is terminal, they may prolong her life a month, but nothing could help. I was still standing alone on my faith, knowing that the feeling that God gave me on April 7, 2008 had to mean something.
I then began researching everything. I looked for drugs not approved by the FDA and drugs only available overseas. I looked for clinical trials and treatment centers. St. Jude’s were so helpful and offered to take us in, but still we faced the same prognosis. They also told us that Nationwide Children's could administer the same drugs that they had and we could stay close to home. They said that we would need the support of our family and friends. Tanea began an extensive round of chemotherapy and radiation therapy in June of 2008. There were constant obstacles, such as the tumor blocking the flow of fluid around her brain. She had surgery to put in a shunt to drain the fluid safely. Next came the infections that kept her in the hospital. It was trying, but she took it in stride. After finishing her treatments, the effects of the tumor were becoming visible. Tanea was losing control of the right side of her body. She began to walk with a limp and was not be able to write with her right hand. We knew that this was bad, very bad. The doctor told us that her tumor was growing back. Once the tumor begins to grow back, it comes with a vengeance and takes over the brain. Tanea had many friends from school, church and her extended family. Everyone came to stay with her at the hospital. She was never left alone without someone while she was in the hospital. She had so many dependable friends, sometimes up to 10 people would stay the night with her. She was so loved.
After getting out of the hospital, Tanea was given the chance to make a wish. The Make-a-Wish Foundation sent our family to Disney World, where Tanea continued to enjoy her life, despite our worries and sadness. She continued to deteriorate as The 2008 Chocolate Nutcracker came to town again. After hearing her story, La'Verne Reed wanted to give Tanea another wish, to play the lead role of Claire in the play. She was excited and nothing could make her sad. You see, she would not complain, although she constantly said she just wanted the tumor to go away. She never talked about it or complained. She will always be the strongest person I have ever known. After playing Claire, Tanea set her sights higher, she wanted to see Barack Obama, elected as President of the United States. We watched as the votes were counted that November and Tanea saw the first African American become president. She now wanted to go to his inauguration in January. I began sending emails to all the elected officials that I could, about 20 or so. I did not expect to hear from anyone, but some of them put us on a waiting list for a drawing. We were not chosen, but it didn't stop there. As I walked in from getting the mail, my niece, Troi, told me that a Congressman Pat Tiberi had just called and wanted me to call him back. I introduced myself to the Congressman, he asked me how was Tanea doing. He then offered her tickets to the 2009 inauguration in a special seated section, because at this point she can no longer walk.
The tumor had grown even bigger, putting so much pressure on her brain. She had already had an operation to put in a shunt to drain the fluid (CSF) from around her brain. We had to give her a steroid used to reduce the swelling. It caused her body to swell and made her prone to infections and raised glucose levels in the blood. Because of an infection she was unable to attend the 2009 event in Washington, DC. Tiberi, then called me to say that he was trying to have President Obama send her a letter. On January 27, 2009, seven days after taking the oath of office, President Obama wrote Tanea a letter (overnight mail). The letter spoke of his disappointment that she could not attend the ceremonies. He also gave the support of his family, and told her that she was in their prayers. To get a letter from the President of the United States made her even more popular, not even that terrible tumor could bring her down.
The very next month, we heard on the news that President Obama was coming to Columbus, and Tanea wanted to see him. I called The Congressman, who then asked how many tickets we would need. He was so sincere and supportive. The day before The President was due to arrive in Columbus, for the Columbus Police Recruit Graduation, I was contacted by Tiberi's office asking if it was okay to give out my phone number and information to The White House. Without hesitation, I agreed and was contacted later that night. The lady on the phone asked would it be all right if President Obama met Tanea after his speech. "Of course," I said while jumping up and down. I was now thinking of the impact this would have on Tanea. I knew this was what she wanted, and she wanted to tell everyone. Since Tonia’s mother did not want to attend, I asked her Godmother, Natausha and Rashida Ransom, who Tanea considered her Stepmom, to come with us. I almost didn't go because my front crown had come out and my dentist couldn't see me until the following week. I went anyway by couldn't even smile for the picture we took with Obama. I wouldn't have missed it for the world. We waited anxiously for the program to close so that Tanea could finally meet the very first African American President of our Country. The moment had finally arrived, and as we pushed Tanea into the room that was surrounded by Secret Service, we saw his face. "Hello Tanea, you couldn't make it to The White House, so I came to you," the sound of his voice made my heart tremble. I can only imagine how Tanea felt. He gave her a hug and asked his assistant, Reggie Love to give her a coin. He told her " look Tanea, it even has my name on it." As we posed for pictures with his photographer, I could see the joy in Tanea's face. Later we met with a reporter from the Columbus Dispatch, Bob Vitale, who interviewed Tanea and I for an article in the paper. The very next month, Tanea slipped into a diabetic coma and was hospitalized. She was given hours to live, four different times. But my angel was resilient. As the hospital, overflowed with visitors, Pat Tiberi arrived to visit the little girl he had done so much for. She knew he was there.
On the morning of June 13, 2009, Tanea took her last breath and went right to heaven. The pain was unbearable and still is to this day. I finally knew why God had dried my tears that day and gave me a feeling I had never felt before. It wasn't because he was going to heal her the way I had wanted, but he wanted me to be able to be strong for her. He wanted me to be able to care for her and prepare her for her journey. He wanted me to be able to carry her on my back, when she could no longer walk, and he wanted me to tell this story to witness of his existence.
A letter from President Obama on June 18, 2009 read: Dear Stephanie: I am heartbroken to hear that Tanea was taken from you, and I would like to extend my deepest sympathies to you and your family. When we met in March, Tanea's energy and warmth radiated through her. As you mourn her passing, I pray you find comfort in knowing that all who knew her will forever be inspired by her strength and bravery. Her joyful spirit will resonate in my heart and in the hearts of all those she touched during her time with us. You and your family are in my thoughts and prayers at this difficult time. Sincerely Barack Obama
I have set up a page in her honor on Facebook to bring awareness to childhood cancers. I hope to raise enough money to become a non-profit so that I can give support to those families of children with cancer who need more than awareness.
Written by Stephanie Ivory, Tanea’s Aunt
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