Lillie's Story: Parent's Letter Project Neuroblastoma- Lillie's mom

This July marked the five year anniversary that my angel Lillie was diagnosed with a rare cancer called neuroblastoma. She was only six months old when we noticed her stomach distended. We took her to the doctor's office, where they immediately told me to go straight to the emergency department. The car ride to the hospital felt like an eternity. You couldn't imagine what was racing through my mind.

When the nurse took us back to be evaluated, I could tell by her reaction that I really had reason to worry. Testing went on that day until the middle of the night. The following days, more testing followed until we got the news- the words no parent ever wants to hear- our baby girl had cancer. They didn't know if the cancerous tumor was on her uterus, which would have resulted in a hysterectomy. They thought it was in her spine, which could have paralyzed her. There were so many "ifs" to deal with.

As painful as this was to endure, I knew I had to be strong. Did I keep it together at all times? Yes, of course I broke down... many times. I'm only human. I had to constantly remind myself that if I wasn't strong enough to keep it together, who would be? I needed to be focused for Lillie's sake. It was during this time that I really connected with God. I knew in my heart that my baby would be fine. I never gave up hope. Until this day, my husband is amazed at how I was able to keep it together. It amazes me, as well. I guess that's the extraordinary power of faith.

Lillie underwent surgery. They were able to remove most of the tumor that was growing in the nerves of her spine. No chemo or radiation was necessary. We had to follow up with MRIs every three months until eventually we only needed them yearly.

This summer, the brilliant Eva Perdahl, MD, PhD,  told me that my (now) kindergartener didn't need her anymore. Lillie has been cancer-free for five years now. Although we will not be visiting the oncologists anymore (thank God), they will always have a special place in our hearts.

I pray that whoever is reading this letter will be able to share a similar story eventually. A story of faith, hope, and happiness. May God bless your child with a lifetime of health and joy always. Thank you for allowing me to share my story.

Sincerely,

Lillie's mom, Jennifer

Treatment Team

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