Selma Sulejman, Bilateral Retinoblastoma

3 Months Old at Diagnosis.

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 #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 three 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 three, 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 seven 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 because their speech has been taken away from them, or function with a hearing aid because they suffer from 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.

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!”

September 2016 Interview with Selma

Selma has supported CureSearch and its mission to accelerate the search for cures since 2014. We asked her a few questions about this:

Q. What advice would you give to a parent/family member of someone with cancer?

A. First and foremost, 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.

Q. What advice would you give to a child battling cancer?

A. They 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 suffer from 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.

Q. What are you doing to raise awareness during Childhood Cancer Awareness Month?

A. To give you a glimpse of what I am involved in for the month of September, on Monday, September 12, I hosted a “Light it Up Gold Gala” at school, in honor of a young pediatric fighter that left us too soon. I worked with her and her family for an entire year. Her name was Cecelia, and she was from Rwanda Africa. She had stage IV neuroblastoma.

I conducted various grant and research writing submissions for her to help her and her family to come to America and possibly receive the most innovative treatments. After six months of intense chemo, her condition worsened, and three weeks later, she died.

September 12 was solidly dedicated to Cecilia and Emily, another little girl who I also grew really close to. Emily was only five years old when I met her and she was recently diagnosed with DIPG. In short, she had the most beautiful and brightest smile, just like Cecilia. Sadly, post her diagnosis, she fought out this monster an entire year, just two months shy of her sixth birthday.

I spent countless hours with Emily in the hospital room, playing Candyland, reading, and coloring, but most of all, just listening to her little words of strength and worry. Although I devoted the night to both of these girls, all of the funds will be going toward our current fighters in hopes of a better tomorrow.

Likewise, on Tuesday, September 13, we had a gold bake-off, and during the entire month I will strive to advocate, raise awareness, support research, and raise funding for Childhood Cancer Awareness Month.

Another exciting event we have is on September 20. It is a #GoGold poetry night in which all entrance fees will go to the fight against pediatric cancer and all poets will be styling their gold awareness ribbons.