After our daughter, Chaya Dalya, was born, we noticed her upper lip was puffy. No one was worried right away, but when it did not get better, panic began to arise. This was the start of our nightmare.
At five days old, Chaya Dalya had an MRI. When the results came back, we received the news we had been praying for—it was NOT Rhabdomyosarcoma, a rare cancer that forms in soft tissue. I still remember the pediatrician looking at the MRI report with me and saying, “That is good…you are lucky it is not that.” Surgery was then scheduled to remove what was filling up her upper lip.
Before the surgery, I did not like the way she was breathing. The doctor said they could do a test under sedation. At the same time, they would also do a biopsy so the doctor would know what they were dealing with before the surgery. Our baby was now two and a half months old, and our lives were about to completely change.
I received the call on my oldest child’s birthday. The ENT said, “It looks like cancer…it is a very rare type…we need to send it out for confirmation.” I remember I was home alone, the house was so quiet, and I was sitting on my favorite chair in the house. When he said those words, I felt like someone had kicked me so hard in the stomach that I could barely breathe. I screamed, “What are you talking about?? CANCER….CANCER…My new baby has cancer?”
I hoped and prayed this whole thing was a big mistake. But then we got confirmation that Chaya Dalya had been born with Rhabdomyosarcoma. Our new baby had to fight for her life—a life that had just begun. Her days would be filled with doctor appointments, blood work, MRIs, tests, chemotherapy, radiation, and surgeries. Her big brother, Reuven, and her big sister, Eliana, would have to spend a lot of time away from their new baby sister, whom they loved so much.
The chemo began. At first, the doctors thought it was working, and then they realized it was not doing as much as they had hoped. A new chemo plan was put in place. Next came Chaya Dalya’s big surgery. This was so difficult, as they had to intubate her for 10 days. This meant I could not hold, kiss, love, or feed our new baby. My heart was breaking.
After she recovered from the surgery, radiation started, along with chemo. Radiation for Chaya Dalya meant being sedated every single day for 4 weeks.
Life continued with many ups and downs. Then, when Chaya Dalya was 13 months old, we found out that after all of the chemo, radiation and surgery, residual tumor was still present. We heard words from her ENT that we NEVER want to hear again— “Prepare yourselves.” He said, “I have talked to many doctors, and everyone is saying to leave this poor girl alone; there is nothing else that can be done.” With tears rolling down my face and barely being able to speak, I said, “NO, YOU NEED TO DO SOMETHING.” He said simply, “Ok.” He talked with her wonderful oncologist and they came up with a plan. We would do ANYTHING for her. We knew we had to fight, just as she, herself, had been fighting to survive.
Over the years, we have had many scares, and I feel like a black cloud is always hanging over my head. Chaya Dalya was given a tumor-starving therapy, which works differently than chemo and is normally not used for her type of cancer or on children. We thank Hashem every single day, but it is hard, and the worry NEVER goes away.
Chaya Dalya is now a spunky, fun, loving, caring, and special 13 year old girl. She is our sunshine. She keeps me going every single day, and she makes sure I am always smiling. If she sees me sad, she will say, “Put a smile on your face; don’t look sad, look happy.” That is Chaya Dalya—always bringing happiness to everyone around her. She has a special magic about her. She may be only 13, but she is way beyond her years. When she looks at me, smiles, says “I love you, Mommy,” and gives me a big hug and a kiss, it is worth more than millions of dollars. She is our walking miracle and my inspiration. I always say, “To meet her is to love her.” She is a very special blessing, and I know how lucky I am to be mother to her, Reuven, and Eliana.
After what Chaya Dalya went through, I knew I wanted to give back and help other families going through medical challenges with their child. I never liked seeing Chaya Dalya in hospital pajamas because it was a constant reminder that she was sick. I loved seeing her in cute, cozy, and comfy pajamas. It did not take away any worries, but it brought a little piece of home to a place that definitely did not feel like home. This is how our nonprofit organization, Sweet Dreams for Kids came about. We donate new pajamas to kids in hospitals nationwide. We have now donated over 15,000 pairs, and we hope to keep growing. As our slogan says: We want to take the “ICK” out of SICK. (See below for their Facebook info.)
I know that our world is forever changed. No parent should ever have to see their child go through what we have, and no child should have to go through cancer. The images of Chaya Dalya being given chemo—the poison that would help her, being sedated for MRIs and surgeries, and being brought in for radiation, along with all the hospital stays, will never leave my mind, just like the worries never do either.
