LUCY DINA

#TEAMLUCY

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“Before Lucy was diagnosed with stage 4 high risk neuroblastoma, she was quite possibly, the most pleasant and cheerful baby in the world. She loved watching her music videos on YouTube, playing with her toys, crawling around and pulling herself up and always trying to outdo what she had done the day before. She was full of so much life and so much energy. She was an amazingly good sleeper and would sleep about 10 hours each night from when she was 2 months old. She was such a good eater with a healthy appetite, and many would giggle that this cute little 9-month-old baby had such a sophisticated palate. She was such a ray of sunshine in everyone's life. There was no way we could have seen what was coming because she was so cheerful and exhibited no symptoms at all until a week before her diagnosis.

In late Feb. 2020, just before the pandemic, Lucy's right eye started to look irritated so I thought that she may have had a touch of pink eye so I brought her to the pediatrician. The pediatrician agreed that it looked like pink eye so she prescribed us some eye drops and I started giving them to Lucy that day. Within 3 days, her eye got worse and started bulging. We took her back to the pediatrician where we were told to take her in to see a pediatric ophthalmologist ASAP and we were able to get an appointment the same day. Once she was seen by the ophthalmologist, they said whatever was causing her eye to bulge was not anything within the eye, and that I should take her to the ER immediately for a CT scan. After waiting many hours in the ER for the scan, we were told that Lucy had orbital cellulitis and we were brought up to the PICU. By the grace of God, there happened to be a neurologist on call at the hospital that night who looked at her scans after we were told what her diagnosis was, and he said that it looked like a mass and that she should be airlifted to Cohen's Children's Medical Center for more in depth scans.

When we arrived at Cohen's, we were greeted by a team of doctors that we later learned were the pediatric oncology team. Before they took her in for her MRI, one of the doctors told me that they believe there to be a mass and Lucy's orbit causing the bulging. I had hoped so badly that they were wrong, but about an hour later the team came into our room and told us that not only did she have orbital masses, but they had seen this before so they also scanned her abdomen where there was a large mass on her adrenal gland. They said that they believed it to be neuroblastoma but that further tests would need to be done to confirm it 100%. I felt like the air had been knocked out of me. My ears started ringing and everything got blurry. It just didn't make any sense that my sweet and happy girl could have cancer. I don't truly think there are any words that could fully explain the feeling of receiving such devastating news.

After her initial diagnosis, Lucy went through seven cycles of chemotherapy, one resection surgery, two weeks of radiation, and 3 cycles of 3f8 immunotherapy at MSK. We were told in October 2020 that she was NED, but in December 2020, while I was out for a walk with her, she vomited and lost consciousness and was unresponsive and her pupils were huge. I called 911 and she was rushed to the emergency room where they gave her a CT scan which confirmed that she had several small masses in her cerebellum and the largest one had caused a major hemorrhage, so she had to be airlifted back to Cohen's for emergency brain surgery that ultimately saved her life. She also had a shunt placed in her brain to aid in proper draining of her brain fluid. We were so relieved that she survived, but now we were back at the bottom of the staircase ready to start the climb again.

Lucy went on to do six more cycles of chemotherapy, 6 weeks of radiation to her complete central nervous system, two cycles of 8h9 immunotherapy and 3 more cycles of 3f8 immunotherapy at MSK.

Watching my daughter have to go through all of this was absolutely heartbreaking. All I ever wanted for her was to lead a normal and healthy life but because her immune system was so compromised we had to shelter her away from the world most of the time. It was heartbreaking to not see her go out and enjoy herself and play with other children. Because of the extensive brain surgery that she received, she is still very wobbly and unsteady on her feet, she is delayed in speech and occupational skills as well. She receives therapies once a week and has come so far. This was very difficult for us to handle as a family. Seeing our child have to suffer and be in pain during treatment was unbearable. Myself, Lucy's dad Christopher, and Lucy's big sister Mina will never be the same after Lucy's diagnosis. We are all still in therapy and we're still trying to navigate life as a "cancer family" due to the nature of this disease because it can come back at any time and it is so sneaky.

Due to Lucy's diagnosis, as a family, we were unable to travel and do many different fun things with our family that we hoped to do. The pandemic did not make it any easier. But I am happy to report that Lucy has been NED for just over a year now and she is a bundle of energy and she is thriving more and more every day. Lucy's favorite thing to do when she's not playing at the park or visiting her family for fun playdates is watching Bluey, Minnie Mouse and Frozen. She's a total Disney kid and lights up every time she sees her favorite characters! She carries her Minnie Mouse and Bluey dolls around with her everywhere she goes. The dream of visiting Disney would mean everything not only to Lucy but to our entire family, as it would be our first visit as well! What a special memory it would be to share all together! We are so grateful have this opportunity through OAAT!

Lucy is the strongest girl I know. I'm so proud to be her mama. After seeing everything she has gone through over the past 2 and 1/2 years and seeing how far she's come really is a testament of her strength and resilience. I just want her to live a long and happy life and to live it to the fullest everyday.”

- Lori Del Percio