Selma Sulejman

@selma-sulejman | contributor
Selma Sulejman, thriving bilateral retinoblastoma survivor. From cancer kid, to survivor, to loving daughter, sister, aunt, friend, advocate and academic. 
Selma Sulejman

My Mom's Battle With Idiopathic Thrombocytopenic Purpura

Mom: a three-letter word that can consist of so much meaning and emotion. Gulsefa Kazimoska, age 52, mother to two daughters, knows a thing – or perhaps a whole novel – about the good and the bad that life has to offer. Born and raised in the Republic of Macedonia, my mother is the oldest of four. She was the only girl in the household, so she was always being spoiled by her family in the most loving of ways. Just as life would suggest, my mom got married as a young woman and migrated to the US. She dreamed of a better future because her homeland has been, and still is, deeply underdeveloped. Moving to America, my mom had many positive things happen to her, but sadly, that is when she started having health issues. Initially, she was diagnosed with a kidney disease, which led to kidney failure. She was immediately started on dialysis, which made her extremely sick and required specific dietary care. At that time my older sister, Edis Kazimoska, was in her early teens. She had to start taking the necessary care for mom. Not only that, she also had to care for me, her totally blind sister. Can you imagine a young teenager, who is supposed to be concentrating on her education and enjoying time with friends, instead taking on some majorly intimidating adult tasks? I can’t! The difficult, but loving journey taking care of mom continued. Then one day there was a ray of hope. We found out that our grandmother’s kidney was the perfect match for my mom’s. On February 24, 2000, my mom received a life-changing gift that to this day, is still going strong. Though her new kidney demands frequent doctor visits, daily meds and blood screenings, we are so thankful to our grandmother for allowing us to continue to live life with mom. So we can take a breath now, right? Wrong! Somehow we found ourselves back in a cold, wooden box, screaming and crying with fear and hurt. In 2006, mom became very ill once again. She had a splenectomy done because of a very low platelet count. She endured trial after trial of toxic chemo drugs such as intravenous immunoglobulin (IVIG), Rituxan, Vincristine, and so much more. Finally, we got the correct diagnosis: she had idiopathic thrombocytopenic purpura (ITP). After having surgery, mom was in remission until 2012. Then the monster was back, this time more aggressive than ever. Mother’s case was beyond complex because she was resistant to all of the chemo-induced drugs, and worst of all, nothing would bring her count above 10,000. We needed to try everything we could to help the situation. So there we were, once again, feeling scared that we will lose her to this dangerous blood disorder. It felt like it had taken over our entire lives. During this time, I was preparing to graduate with an undergraduate degree in diplomacy. But I just couldn’t fathom this indescribable, ugly and heart-wrenching feeling that was going through my entire body. I asked myself questions like, “Will Mom be there for graduation? Will she live to see my nephew grow to be a young man? Will she see me get married one day and meet my children?” My biggest fear suddenly became the thought of losing my mom and waking up one day, never hearing her voice again. Everything seemed unjust and unfair to me in the world, until one day, an innovative drug turned my frowns into hopeful smiles. It took Mom’s everlasting energy, but a few months before graduation, doctors finally put her on the Nplate. It worked its magic on mom’s count, and slowly but surely, it brought her back to a somewhat stable life. It was smooth sailing from 2013 until 2016, when doctors decided to take mom off the Nplate. She had been doing well without it, maintaining stable counts. And then our short-lived life of normalcy came to an abrupt end when she relapsed for the second time. This time around the Nplate was induced immediately. It took a long period of time for her body to recognize it and start reacting. Transfusions, long days in the hospital, and watching her gasp for her breath were all I could remember then. Currently, my mom is on a weekly dose of Nplate, which helps control her ITP. She still continues to face severe, ongoing issues such as diabetes, hypertension, pulmonary complications, and so much more. Despite all of mom’s hardships, she is still here, pushing forward with her all. Though we do not know what tomorrow holds with her health, we are deeply blessed and grateful to have her with us each morning when we wake up. I could not imagine life without her. Unconditional love and my nephew’s special bond with her are just some of the little things that keep her going. She is able to find those minor specks of happiness and lean on them because to her, the little things are what matter the most! More awareness needs to be given to ITP, and we need to raise more funds for better treatment options. I am on mission to create a change in this fatal disease, as well as many other blood cancers-disorders. I hope to one day create a marathon that is specifically geared towards ITP, and I hope it creates hope for other patients and their families. From our family to yours, never lose hope! We want to hear your story. Become a Mighty contributor here .

Selma Sulejman

Living With Retinoblastoma and Side Effects of Treatment

As the saying goes, “Life is a box filled with chocolates, you never know what you are going to get.” Life is unpredictable, just like pediatric cancer , the number 1 disease killer in kids. It can strike at any given time on any race, gender, socio-economic demographics, religion, and so on. At only 3 months old, my family and I were faced with the cold and intimidating world of childhood cancer. After several days of simultaneous fevers and an odd glow in my right eye, my mother rushed me to the nearest emergency room. It was there that diagnostic tests were conducted and an ultrasound confirmed the diagnosis of retinoblastoma. I immediately had to undergo an emergency enucleation of the right eye to ensure my survival. Post-surgery, my loved ones were forced to reckon with the news that the cancer had spread to my left eye, and that now this had become bilateral retinoblastoma. With the outstanding care of Memorial Sloan Kettering Cancer Center, I did two full years of radiation and cryotherapy to get rid of the cancer in my left eye. When I turned 3, I was able to deem myself cancer-free, and done with the toxic treatments that were sure to leave me with long-term side-effects as a survivor. The years that followed, consisted of close monitoring of my eyes and brain, where treatment was induced with MRI scans , lab tests, and ultrasounds . At the age of 7 I lost sight in both eyes, all due to the toxicity used to kill the cancer. So here I was, first an infant unaware of what’s being done to my body and brain while battling pediatric cancer, and then growing into my early childhood years and learning to live with the reality that I will never be able to see my face again, the sun rise and set, my family’s appearances, and so much more in the physical world. Of course, like anything else, this was a time of adjustment and adaptation, to living a life as a completely blind individual. It was not smooth sailing at first, but all journeys in life have those small pebbles that one must crawl over, then you eventually make that Olympic jump over the larger rocks. This is just what I did. I went through grade school and high school for persons who are blind and visually impaired, and then made my way to undergraduate studies at John Jay College of Criminal Justice. In between high school and my college career, I was diagnosed with a list of long-term effects, such as ACTH deficiency, induced radiation migraines, hyperthyroidism, increased heart rate, and the continuation of being screened for secondary cancers. I was also recently diagnosed with equal to mild hearing loss due to the radiation. As pediatric cancer has significantly shaped who I’ve become as a person, when entering college, I always knew I wanted to go into a field of study that would allow me to help others not only in a regionally, but on a more universal spectrum. I am driven by justice, humanitarianism, advocacy, and effective change, all of which brought me into the field of criminal justice, the sciences, and literature. Currently, as I complete my legal academic endeavors in post undergraduate studies, I have found ways to utilize my skills and passion within the subcultures of law, health, and social justice. Not only am I a fierce advocate for children fighting this beast of pediatric cancer, but I also find this awareness grounds for disability rights, women’s rights and human rights — all on an international level. If there are a few things I have been taught early on in life (thanks to my fight with pediatric cancer), it is that life is imperfect, but these ups and downs have solidly paved my rode to success, happiness, and love. You never judge a person until you can find yourself walking in their shoes. You just don’t know if you could walk with your eyes closed and do what they do on a daily basis, or communicate with a voice synthesizer, or function with a hearing aid because they have severe hearing loss, and much more. Most importantly, no idea or question is ever stupid or silly, because we all have a right to our personal feelings and considerations. The battle is indescribable. It’s hard for parents and family members because they are not running the marathon or fighting the same battle that their family member is. Children battling cancer should never give up hope and never feel that they are alone. So many are willing are to help and listen, if needed. In some situations, there is a sad outcome even if you survive the disease. Cancer can leave you with a disability like me (blind in both eyes), and you can have post toxic treatment side effects. For parents, the most important thing is to give their child hope and that they can still accomplish their dreams. That a cancer diagnosis can’t take everything away from them, and to always have hope. Although many milestones have been taken away from me, as a child and as an adult, I only wish to work tirelessly with my best foot forward in making more milestones possible for the kids who are faced with cancer in society. “Be a voice for the voiceless!” We want to hear your story. Become a Mighty contributor here .