Mom Shares Heartfelt Story of Her Daughter’s Battle With Cancer

It was a Friday evening when I went into work for my usual night shift on the pediatric floor at St. Rose Hospital. I had my 4 patients and things were going fairly normal for the shift.

My husband was at home caring for our 2 girls while I worked, and I would sleep the next day after I got off my shift at 7:30 am. We had a busy 2 1/2 year old and a 7 month old, so the nights were often long.

Our 7 month old, Riley, was born very small at birth with a growth restriction and neurological deficits. She had delayed milestones and was difficult to feed and put to sleep and keep to sleep, but I have a very patient husband who handled the nights very well while I was away on my nursing shifts.

This night was different than our normal, though.

Before I left for work, my husband, Brandon and I had a quick talk about signs of brain tumors. You see, our 2 1/2 year old, Navy, had been to an optometrist just the week prior, because her eye was looking very strange to us… it was deviating to the left. The optometrist didn’t have a great explanation for us and we had to just wait for the opthamology appointment for 3 weeks.

In the meantime, she developed a few other little symptoms; and in my head, I kept thinking the word “tumor”… but at the time, I was worried I was making it all up in my mom-brain!

This process of waiting was dragging on for us as her eye was getting slightly worse and she developed a low grade fever. We were getting impatient with no answers.

So before I went to work, I talked with Brandon about how this was going on for too long and if she showed any weird signs that night, just to bring her into the ER and tell them about seeing the eye doctor… and the fact that we really think it may be a tumor.

That night, in between assessing my patients and hanging the IV medications, I checked my phone and saw that Brandon had texted me.

They had gone into the ER.

She was waking up and wrenching with painful cries. It was very unlike her nature.

They found what looked like 2 tumors. Behind her eye and behind her nose. She was admitted that night back up to the same floor I was working on. My charge nurse relieved me of my assignment so I was able to go be with Navy.

It felt all so surreal. Like we were living in a separate reality.

It took a full month to get the complete diagnosis, a lot of outpatient tests and waiting for results.

Stage 4 High-risk Neuroblastoma.

Stage 4 of any cancer never sounds good, right?! And High-risk?! No known cause and no 100% proven treatment. 40-60% cure rate, but even if your child survives, they are ridden with seemingly endless complications from the years of treatment.

Before we started treatment, Navy completely stopped walking. She lost sight in her left eye and was quickly loosing sight in her right eye. She shuddered in pain with any movement of her legs.

We later found out her tumors stretched from the top of her head clear down to the bottom of her legs. Like spider webs on her bones. She had a melon-sized tumor in her tummy and a walnut-sized one behind her heart along with the ones behind her left eye.

Right after diagnosis, we traveled from Las Vegas down to Children’s Hospital of LA so we could start a clinical trial and be with Neuroblastoma specialists.

18 months of intense hospital treatment. Traveling to and from LA, San Francisco and Salt Lake City to complete the various treatments, staying in the wonderful Ronald McDonald house for most of the stays— Implanted double central line (no swimming, bathing, or strenuous activity for 18 months), 8 weeks of chemotherapy, 12 days of targeted radiation, 1 major surgery, a month-long stem cell transplant, 1 week of experimental MIBG isolation therapy, 6 weeks of painful immunotherapy and 1 year of oral Accutane treatment (remember how teenagers take this for acne?! It is used for Neuroblastoma as well!).

Navy lost her hair twice, and even when we were at home in Vegas from the hospital, she often was in isolation or felt too sick to be out doing anything.

Our life revolved around doctors appointments, her fragile immune system, and simultaneously trying to figure out Riley’s growth and development issues.

Entering the pediatric oncology world is a whirlwind.

So many numbers…

So many doctors…

So many bills…

and paperwork…

So many angel children and grieving parents…

it feels like you are trying to crawl your way through a long, deep trench…

and YET, there have been so many silver linings through our trials.

I feel like through this, I became a different parent.

I learned to crave the mundane, the “normalcy” of life – any slow morning at home now is a gift.

Any milestone for either of my girls is a celebration of life, of freedom.

I learned that there is no way to be on top of everything. When life got crazy I had to learn to let many things go.

I have learned that there are SO many good people in the world. We have felt like we have been surrounded by them. People near and far who have reached out to us and given us encouragement for both of our girls. Many wonderful souls who brought over meals, gifts, texted words of encouragement, sent cards, provided support. Our wonderful families who stepped in to care for Riley and to provide support at the hospital. The healthcare staff, the doctors, nurses and cancer organizations— so many wonderful people doing an awesome job.

So many good people that feel like literal angels on earth. They all uplifted us.

Thankfully, Navy (almost 5 years old) is currently stable. Her tumors have turned into a benign-like cell and the have stopped spreading. We are on an oral treatment and do scans every 3 months to check how they are doing.

She has minimal side effects so far. She attended preschool, dance class, and soccer this past year and is full of energy and life. She is able to travel to visit cousins and absolutely loves it.

Riley (almost 3 years old) is continuing to improve and learn and grow. She has been going to weekly therapies and is on growth hormone shots to help with her growth issues. She is a lover of life and has a contagious smile.

Seriously, we are in a great spot right now. Let me take a moment while I soak it all in..…