Childhood Cancer Awareness

❤️️ Luciana’s Story

… the heartbreak and triumph of a local Salem County family

On May 19th 2021 I went to the hospital to deliver my second baby. Not knowing the gender, my husband and I were excited! We had a good ole time in our delivery room, laughing, reading, breathing through contractions – luckily for only a few short hours. Not knowing those were the last short hours my mind would be at ease, just pure excitement for what was to come. Seconds after birth and I mean seconds, Luciana Marie Italiano was taken from me, as I was basking in the moment I actually have a little girl to join big Brother Enzo at home, rushed over to the incubator table where a team of 10 rushed in like an army, and out of the room my daughter went, with only 20 seconds to hug and kiss her goodbye. She was rushed to the NICU at Christiana hospital due to an 8×8 mass on her neck. Four hours after birth, Luciana Marie was transferred to Nemours AI DuPont while I was discharging myself to be with her. We had no clue what was to come, and letting our family know was difficult, because we had no answers for all the questions.

Upon walking into our room at AI Dupont, I was met and blessed with the sweetest staff on the NICU North floor, Room 21. After the hardest days of my life, and a biopsy later, we find out my daughters mass is in fact a cancerous tumor called neuroblastoma. Neuroblastoma is very rare for a diagnosis at birth. That same sentence of “neuroblastoma” was met with “this is the protocol for chemotherapy we are going to start asap”. Here is my daughter, fighting for her life with a breathing tube, on morphine, about to start chemotherapy at 9 days old. For 3 long brutal months, full of chemotherapy, celebrating milestones, deemed in remission on July 10th, crying due to setbacks, but again, had a care team of 4 nurses who quickly became family— we were discharged to come home on August 17th. While Luciana had other quality of life issues due to the placement of the tumor, she has thrived ever since. While she is not cancer free, the tumor has been continuing to shrink, rather slowly ever since.

We spent 2 days every week at the hospital for different clinical visits, ENT, Allergy, Oncology, GI, Nutrition, Speech Therapy, Lab work, NICU follow-up, and the list goes on. We also spend 2 days every 3 months getting protocol MRI and MIBG scans, to track her tumor. Little Lulu (thankful for her care team in providing the cutest nickname) has been through so much in just 3 months of life, than most adults in their lifetime. While inpatient, we learned of a “Beads of Courage” program. Luciana received a bead for every prick, prod, placement, test, milestone, sad milestone (which included losing her hair)—so we can all remember, just how far she has come.

Pediatric cancer is never spoken about, never really talked about, and never brought awareness – until you or a family member steps into the those shoes. It’s a feeling you can never un-feel. While Lulu has went through quite the journey over the past 15 months, I have been there every step of the way, fighting for her, advocating for her, and making sure her voice is heard. I am her voice. The statistics are sad. The federal dollar amount towards pediatric cancer is 4%, while the rest of the 96% goes toward adults. Chemo drugs are the same no matter the age. Most states do not help assist families with children who have cancer and need to undergo extensive lifelong treatment, New Jersey being one of them. Advocating for children who need help, who did not ask for cancer, who fight better than adults, and don’t understand, but understand enough of just what is going on – against healthcare facilities, state health departments and federal health departments who run their agencies like business, is tough. Living with extensive medical bills is the least of my worries, as long as I have my little girl doing life with me by my side.

Lulu has been beating the odds, participating in clinical cancer research studies, and growing stronger and growing through her NICU problems everyday: She has paralyzed vocal cords, Horner’s syndrome from tumor placement, a Gtube placed due to silent aspiration; not to mention the chemotherapy effects: slow growing teeth, slow muscle growth, hair loss/hair growth, the ability to just develop allergies because the chemo lingers in her body, ongoing skin issues, eczema and possible fertility issues as she grows.

Would I change anything? Absolutely not. Beautiful things come from cancer, no matter the outcome.

Luciana has brought a whirlwind of emotions and pray that I never knew existed. Friends and family have helped tremendously. The community banded together and brought awareness. Other cancer moms I’ve never met sent gifts, words of wisdom and checked in everyday. The local churches recognize Luciana and pray for her daily. She is prayed for worldwide, this little girl from Salem County NJ. My family will continue to bring awareness for all the years to come, and celebrate Lulu and the triumphs overcome. While I did not have the perfect birth story, my story is absolutely perfect, along with my Warrior Princess Luciana. To be continued.