Written by Akshara Koneru
Edited by Anirudh Koneru
Published on 10/19/2020
Seven years ago, Ali lived the life of any 15-year-old girl. She went to school, hung out with her friends, and spent her time doing the things she liked. She had dreams for a normal life, and for a happy future. But her life changed irreversibly the day she was diagnosed with cancer.
No matter who you are, where you come from, or what you believe in, the effects of such a diagnosis are permanent. Whether your reaction is anger, denial, shock, or despair, the toll of this statement will take its place on your life for the worse. The first time she heard those words, they shattered her world, and she knew her life would never be the same.
Over the years, Ali would have to deal with the consequences of her rare disease, as well as the many other parts of her life that were made so much worse by her condition. She has fought her way through life and has worked to recover from everything it put in her way, whether it be the bullying she faced at school, the struggles with her friendships and relationships, the trauma that arose from the abuse from her father at a young age, or dealing with mental illnesses, suicide attempts, and self-harm. And while Ali once thought she was “invincible,” life had something else in mind for her. Despite this, though, Ali has had to learn to cope with her disease and the struggles that come with it, but it has not been an easy journey—showing all the more that she is stronger with every problem she overcomes.
About Ali
Ali is a 22 year old blogger, YouTuber, and Twitch streamer who lives in Honolulu, Hawaii. She is a photographer, foodie, and mental health and body positivity activist who loves gaming and traveling. But what most people don’t know when they see Ali is that she is a two time survivor of Pediatric Wild-Type GIST, a rare form of cancer. To learn more about Pediatric Wild-Type GIST, click HERE.
The Initial Diagnosis
Ali was first diagnosed with cancer in June of 2013, in the summer before her sophomore year of high school, when she was just 15 years old. Most people her age were worrying about their grades, their friendships, and their futures. And so was Ali, until one eventful day at the mall that changed her life.
Ali was out shopping with her mom on a beautiful summer day when she began to experience severe cramping and sharp pains on the left side of her torso under her ribs. When she went home her mother called the doctor, who assumed it was gas and told her to take ibuprofen. Her grandmother had tried feeding her chicken noodle soup to help with the gas, but in a matter of moments, she nearly passed out.
Eventually, she was taken to the hospital by her mother. The car ride felt painfully long; the pain in her stomach was so frequent and intense that she passed out twice. Once she arrived at the hospital, the doctors conducted several tests, including a blood draw and an X-ray. After her blood was drawn, Ali attempted to stand up but immediately passed out. She continued to fall in and out of consciousness.
The test results concluded that she had a dangerously low blood count, a burst tumor, and severe sites of internal bleeding. A laparoscopy was conducted soon after, in which a camera was inserted into Ali’s abdomen to get a better view of her stomach. Ali woke up from her surgery to find herself hooked up to a heart monitor, multiple IVs, a catheter, and a tube in her nose. She recovered well from the surgery, but was heavily anemic, and the doctors had found a tumor the size of a golf ball inside her body. Another concern was that the cancer cells might have spread after the tumor had burst.
About a week later, Ali had a second surgery to make sure the tumor was completely gone. The doctors scraped the lining of her stomach and tested each sample to ensure that as much of the cancer as possible had been removed in all areas. The tumor found in her body was then sent to the National Institute of Health (NIH). Finally, after analysis by the NIH, Ali was diagnosed with Pediatric Wild-Type GIST, a rare type of cancer.
Treatment
Ali was left shocked, confused and terrified. With such a rare form of cancer, conventional forms of cancer treatment, such as chemotherapy and radiation, were not viable for her. Her only options for working treatments were surgeries, clinical trials, and one type of pill medication that treated GIST’s similar to hers; unfortunately these therapies are not always effective, and can be dangerous. Currently, she is on what is called a wait and watch treatment, which is when patients are monitored over a long period of time to ensure that the signs and symptoms of their conditions do not worsen.
Relapse
In May of 2018, Ali faced a relapse. She had gone to the doctor’s office by herself for the first time since she had gotten diagnosed, and had been prepared to handle the outcome of the appointment. However, when the doctors said they had found growths in her stomach lining, Ali felt as though her whole world was crashing down around her again. She tried her best to calmly leave the doctors office, but it quickly became difficult to breathe. For the first time in many years, Ali began to cry over the cancer she had been facing for almost five years; it seemed as though she was back to that horrible moment so many years ago when she was first diagnosed. Over time, Ali learned to cope with the recurring effects of her cancer, though this struggle is something that will never be fully solved.
In an effort to combat her relapse, she was put in treatment in October of 2018 to September of 2019, flying 5,000 miles away from her home every three weeks to the NIH in Maryland. She participated in a clinical trial, in which she received injections to her stomach five times a month. Eventually though, she stopped participating in the trial, after recognizing that the benefits of discontinuing the trial outweighed those of staying on. The impacts that these treatments had had on both her mental and physical health were far more detrimental than any positive impacts they might have had on her disease, and the long plane rides to and from the NIH had been worsening her anxiety. Ali realized that having a more normal life, going back to work and school part time, and seeing her family and friends every day was more important than continuing a treatment that may or may not work.
An Inspiring Future
Ali’s goal is to spread awareness about this disease and to reach people with the same diagnosis to help them find the best health care route. She wishes to share her knowledge and experiences with others to help them find what is the best for them.
Throughout her life, Ali has been through a rollercoaster of struggles, with everything from her illness to her trauma and her mental health weighing down on her. And yet, despite the fact that the deck seemed to be stacked against her, she has kept going, and has found strength and purpose in empowering others. Ali is a true inspiration, and her efforts to bring change in every way she can have made her better for it. In a way, she is still the same 15-year-old girl she was before her diagnosis, but the experiences she has lived through have changed her innumerable ways. Now, with a fire in her heart to speak her story and share her voice, she is changing the world every day.
Thank you so much Ali for your strength and contributions!
Be sure to check out Ali’s platforms:
Instagram: @owlsaur
Website & blog: owlsaur.com
YouTube: Owlsaur
We believe these stories are important for others to hear, not only for awareness of the disease itself, but also for the support it provides to every patient. Thank you so much to all the people who share their stories with us! We truly appreciate your strength and not only are you contributing to our organization, but you are also furthering the awareness of rare diseases as a whole.
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Citations
Ali. (2020, August 14). Virtual Interview through Google Forms.
*, A. (2019, July 28). Invincible, Right...? Retrieved October 17, 2020, from https://owlsaur.com/invincible-right/
A. (n.d.). Owlsaur. Retrieved October 17, 2020, from https://www.youtube.com/channel/UCrTVxNOjSHqnDs7Ze-qJDag/videos
*, A. (2019, July 28). The 'C' Word. Retrieved October 17, 2020, from https://owlsaur.com/the-c-word/