Meet the Shvartsman Family
Our journey began in 2016, when Sophia was diagnosed with Cancer at the age of two and a half. 2016 was the year that breaks down our life into before and after. The year when everything about us changed and we had to learn our new “normal”…much like everyone has experience over the past year.
Sophia was a healthy beautiful child up until January 2016. She had no medical issues, and the only time we had to go to the doctor was for her well visits. On January 1, 2016 she woke up with what seemed to be a cold, but then she started complaining of leg pain, which then moved to her other leg, and then her arm. It took us four long months and multiple visits to different specialists, urgent cares, and emergency rooms to be diagnosed. She didn’t have any specific symptoms or signs to point out as a major problem, just vague symptoms of a cold, and growing pains and behavior changes possibly due to her age. We were told “there is nothing wrong with your child”, and hearing that was as hard as living through her pain. We knew something was wrong with our daughter, but we were not heard. Until one day, on April 6, we went to meet Dr. Lazarus, a rheumatologist affiliated with Bellevue Hospital, and he listened… He knew right away that Sophia was not well. On that same day, Sophia had an abdominal ultrasound, an X-ray, and blood work… that night we got a call from him, and we were immediately referred to see an oncologist at Hassenfeld Clinic at NYU Langone.
We knew that Sophia was not well, but nothing could have prepared us to hear that our child has cancer. This is the moment when you lose ability to think and rationalize, when you feel so crushed that life doesn’t seem worth living. The only thing that kept running through my head was that we were losing our beautiful child. A week of testing landed us at the diagnosis that none of us ever heard before – NEUROBLASTOMA, a rare childhood cancer that occurs in 1 out of 500,000… our beautiful girl was that One.
This was the beginning of our new chapter where the focus was checking her counts, managing medications, keeping up with appointments, and isolating from the outside world so Sophia didn’t get exposed to viruses/bacteria. Sophia went through 6 cycles of very intense chemotherapy, surgery, two stem cell transplants, 12 rounds of radiation, 5 cycles of immunotherapy and then two years of DFMO trial. Every part of her treatment had its challenges, but Stem cell transplant was intense. She was given a very high dose of chemo that wiped out her blood counts to a zero, and then she was given stem cells to regenerate her counts - the side effects were so extreme that she couldn’t eat, walk or even talk. She just lay in bed. After each transplant she had to learn to walk again because her little body was very weak and exhausted. Even now, as I am writing this, it seems overwhelming and impossible to go through. But she did. Our then 3-year-old made it through.
Sophia beat Cancer, but this chapter of our lives will never be forgotten. It made us stronger, it taught us about what really matters in life, and to live every day that we are given to the fullest. Every time I look at Sophia, I see strength and power. This little person fought so hard, and she did what seems impossible. Our little hero is the proof that cancer can be defeated.
As horrible as this whole experience has been, there are certain positives that came with it. We met so many amazing and caring people during our journey. Everyone involved in Sophia’s treatment became our new family. I will never be able to express enough gratitude to all selfless nurses, volunteers and especially our oncologist, Dr Gardner, who was there for us any time of the day and night, whenever we needed her. And then, while being in the clinic one day, we saw a flyer from Sunrise Day Camp. The volunteer told me all about the camp and advised to contact Robin. Miraculously, Sunrise Day Camp was located 5 minutes away from our new house that we just moved to from Brooklyn.
Sophia started going to camp in 2017. Sunrise became her favorite place on earth. She was making new friends, introduced to so many activities and sports, and learned a lot of new skills. The following summer, once her central line had been removed, she was able to go to the pool and actually learned how to swim! She couldn’t wait for the next day to go back to Sunrise. She finally got to be a child again – not just a child with cancer. The counselors were amazing and so caring. As parents, we knew Sunrise was a safe place and that the staff knew how to care for her because she wasn’t just a child, she was a child with certain limitations and would require some adjustments. We also felt at ease because Sunrise was the place where she wasn’t looked at as different because of no hair or a catheter hanging from her chest… She was just any other camper. In 2019, Sunrise also welcomed Sophia’s younger brother Luka.
Sunrise Day Camp is a magical place, where they give kids the world! And even in the darkest times like these, they find ways to brighten their lives and make children with cancer feel special. Our family is so thankful to everyone who makes these programs possible, because without Sunrise, cancer would feel so much worse than it already is. Sunrise brings back the smiles, happiness, and joy to their little lives. Again, thank you so much for all you do from our family and all the entire community that we have represent today!!!
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