Everyone has a story to tell; some you can tell by looking at a person, but for others you have to get to know that person. From the outside, you see I’m short and hearing impaired however, this is not my story. My story is what I’ve learned and the journey I have been on while overcoming the everyday challenges I face.
My story starts when I was two years old, I was diagnosed with Neuroblastoma, a solid tumor cancer that originates in the adrenal gland. As a result of multiple rounds of chemo, radiation, and two stem cell transplants, I lost some of my hearing and my growth was stunted but I defeated the cancer. Eight years later, my brother passed away from leukemia, I was ten years old and had just lost my brother. I remember sitting there thinking everything would change; nothing would ever be the same. What I didn’t realize in that moment was one thing would remain the same, my determination to succeed in life.
Losing some of my hearing made learning in school and socializing in large groups much harder for me. I had a choice; I could use it as an excuse or I could accept the challenge and show the world what I was capable of doing. I chose to accept the challenges. Being hearing impaired means that in class I miss about 30% of what a teacher teaches in class. It is my job to be an advocate for myself and learn the material I miss. I’m not going to just sit there and not understand what’s going on. I also wasn’t going to let this hearing barrier stop me from hanging out with friends or participating in activities I enjoy. I still watch movies with my friends, the only difference is I turn on closed caption. When I have big groups of friends come over to my house to hang out, I just tell them to get my attention and look at me when they are talking. Even with my hearing loss i still participate in dance, concert and marching band and so many other things. In these activities when I cannot hear certain parts of the music or certain instruments, I use visual cues or look for other indication.
My height challenges also made some things in life harder for me, especially as I’ve gotten older. For example, pushing through the jolly green giants in the halls of my high school, in order to get to class on time, or finding a car I could drive. Not to mention dealing with the confused looks I received when I get out of my car at the gas station because I look much younger than I actually am. I also make adjustments for myself. In marching band, I play the xylophone, however, when I first started playing it was too tall, I brought in a step stool in order for it to be the proper height. I have a lot of step stools around my house in order to reach high shelves in my kitchen or reach the top of my closet.
Through my personal experiences I learned some very important lessons; adjustments can always be made and that one look from the outside of someone really shows you nothing. I know now that people who do that are blind to so much of the world around them just like they are blind to the potential I have. I have learned always be an advocate for myself and to not let obstacles stop you from doing what you love. These experiences and challenges I have faced have helped define who I am today; a strong, determined and driven person.
-Tara Lackey
1 Comment
Tara thank you for sharing your story. Your journey sounds very much like that of my daughter, who also had Stage 4 Neuroblastoma at 2 years old. She was treated with the high dose chemo and full body radiation during two back to back stem cell transplants. She somehow survived, but the cancer and the cancer treatments did leave behind their mark, in the same manners you describe, hearing loss, stunted growth, and a few other problem.
She’s had a double whammy in her life in that 8 years later at 10 years old she got osteosarcoma, with a cancerous tumor on the bone in her forearm. Docs thought the earlier radiation might have been the culprit in causing it. She went through chemo again and had an operation to cut out the section of bone in her arm and replace it with a donor bone and steel plates. She beat that cancer as well, and now today she is 18 years old and a senior in high school.
The one difference I notice between your story and hers is that because of her hearing and shortness and the fact that she looks much younger than she is she has become painfully shy. It has been a real problem for her. If you would ever like to contact her and discuss your challenges, or whatever, feel free to send me an email at rjbonigli@icloud.com and I could supply her email address.
Thanks again for your inspiring story or overcoming the difficulties Neuroblastoma has left behind,
Ron Bonigli, proud dad of another brave cancer survivor