Meet Jillian – Neuroblastoma

Since the day she was born, Jillian was never ordinary. Born a month early and by an emergency c-section (her acrobatics in utero caused two knots in her cord), she was still perfect. This strong willed baby had a feisty and outgoing personality from day one. She ate good, slept when she had to and loved playing with her big sister.

She turned 3 in April of 2013 and like a light switch, something changed. She started complaining that her tummy hurt. Her personality became withdrawn; she no longer wanted to play with her sister and became aggressive with our dogs. She would eat when forced and sometimes she would throw up. A trip to her doctor in June for a wellness exam showed no physical signs of a medical condition. All her “symptoms” were nothing more than the “Terrible Threes” or teeth coming in and possibly just changes as she grows, typical toddler issues. But something in the back of my mind knew there was more to this. Instinct told me that something was wrong.

By the end of our summer vacation in June, she was worse. By the Fourth of July (on a Thursday) she started with a low grade fever and vomiting every time she ate. The four day holiday weekend left us no choice other than an emergency room visit but I felt we would be turned away for a fever of only 99.6. That fever went up and down and lasted through the weekend and by Sunday she had quit eating and drinking all together. Monday morning, July 8th 2013 I took her in to see her doctor again. Her color was off, her breathing shallow and a hardness in her abdomen had her doctor concerned and we were told to go straight to the e.r. for abdominal X-rays.

She was taken right in and after her labs were drawn, vitals noted and X-rays done, the rest is but a blur. All I remember is being told that she was in critical condition with a low probability of survival. The massive tumor in her abdomen was probably some sort of cancer but she was too unstable to even be sedated for biopsy. By Wednesday they were able to do a biopsy and bone marrow aspiration as well as a temporary port placement. By Thursday evening July 11th, we were told the news. Stage 4 Neuroblastoma, originating from her right adrenal gland and invading every square inch of her tiny abdomen; attaching itself to her organs and her arteries; cancer cells present in her bone marrow and lymph nodes. The prognosis? We start chemo now and pray its works. Neuroblastoma is ugly and has a tendency to either respond in the beginning or not respond at all. And the chances of relapse are extremely high. Only 1 in 5 children survive this (those were the most recent statistics at that time). We no other choice but to fight.

Jillian handled her treatments in her own way, the dramatic way. Most days all she wanted was to watch movies over and over. On good days she wanted to play in the hospital play room or sit on the floor with toys we brought from home. Bad days, her spicy personality made her throw things and lash out at me, since I was always there and she knew I was never leaving her side. Through six cycles of chemo, a couple trips to NY for surgery and stem cell transplant, 20 rounds of radiation, numerous tests and scans and six cycles of painful immunotherapy, she never lost her spiciness. She would dance and sing down hospital corridors with me dragging her “Jilli tree” aka an IV pole along behind her. She loved an audience. And by some miracle she beat this monster. She won. She was declared NED (no evidence of disease) April 2, 2014 but still had to finish protocol. She completed treatment on September 21st, 2014 and has remained cancer free since.

The obstacles of cancer treatment for my family were huge. My husband had just started a brand new job so getting time off was not much of an option. Thankfully we had good insurance and I was able to quit my job to be with Jilli 24-7. But the copays and deductibles were relentless. We had to fight the insurance company to pay for some necessary procedures. Our marriage was already strained and we had a 6 year old daughter just starting first grade and she needed her mommy. When everyone in the family was breaking down; I was the only one strong enough to be the rock. I had no choice. The war was fought and won. I can honestly say that I still suffer from PTSD because of it. Our marriage ended eventually and we are still picking up the pieces from a life that once was normal. But what is normal anyway? I was once told by another cancer mom at the beginning, “normal is just a setting on a dryer”.  She was right. Every chapter we face a new normal. Jillian is starting to forget all she went through.  Her growth has been affected, she requires hearing aides to help her hear high frequency sounds, she has some skin and bladder issues, and she fatigues easily when doing a lot of walking. But she is brilliant; very smart!  And she is brave and talented and funny and has a personality on her like no other.  She is a fighter and my inspiration.