Through My Eyes: Cancer Family Finds Light During Daughter’s Neuroblastoma Journey
Written by Rachel Wood (Director of Marketing) & Sarah Stephens (Cancer Mom)
“Through My Eyes” is a series in which those affected by childhood cancer share a behind-the-scenes look into the ripple effect cancer has in their lives. Our goal is to raise $50,000 for rare pediatric cancer research in the month of September. Become aware, give monthly or donate. [Presented by Atrium Health Levine Children’s]
- Perspective: Cancer Mom
- Name: Sarah Stephens
- Daughter: Eleanor, 3 years old
- Cancer: Stage IV High Risk Neuroblastoma
- Diagnosed: 3.10.2017 at 3 months old
- Treated at: Advent Health Orlando, Memorial Sloan Kettering Cancer Center, Helen Devos Children’s Hospital and now Atrium Health Levine Children’s
Diagnosed at 3 months old:
“3.5 years ago, our lives were forever changed. I took my 3 month baby, Eleanor, in expecting to figure out a small ailment, but instead was told our sweet baby girl most likely had Neuroblastoma.
Within the last 1256 days, She has overcome lots and lots of rounds of chemo, radiation, immunotherapy/chemo, broviac line placement/removal, liver biopsy surgery, multiple bone marrow hip biopsies, port placement surgery, 2 medical trips to New York, a 13 hour surgery, hundreds of blood draws, way too many port accesses, IVs, Pokes, 6 medical trips to Michigan for a clinical trial, tons of scans: MRI, CT, X-RAY, PET, MIBG. She’s been sedated and under anesthesia more than anyone should have to be in their lifetime. I am her own mother and I have lost count.
When Eleanor was diagnosed, we decided we were going to fight, going to fight hard and do everything we could to give her the best chance at survival. We didn’t care where we had to go or what we had to do to accomplish this. The next part of our journey will be in North Carolina at Levine’s Children’s to follow Dr. Sholler who recently joined the LCH team from Michigan. Levine Children’s will be our 4th hospital part of Eleanor’s cancer journey (FL, NY, MI & NC).”
A mass was found in Eleanor’s abdomen and on 3.10.2017 she was diagnosed with stage IV high risk neuroblastoma. The disease was found in her liver, adrenal gland & bone marrow. The tumor on her liver doubled in size every 4 days and caused respiratory distress due to the size pushing on her little lungs. Initially the doctors couldn’t fit a port in her chest because she was just so little.
Eleanor is now 3 years old and is currently in remission. Her mom says she loves sunshine and wakes up each morning declaring its a good day. Eleanor loves pink, tutus , sparkles, dresses and all things girly. She is a tiny ballerina and has decided she will be a princess when she grows up!
Neuroblastoma is a solid tumor cancer that arises in immature nerve cells and strikes primarily in infants and children. When cancer is high risk it means it has a high chance of spreading or coming back.
Light in the middle of darkness:
“I became pregnant with little sister Eloise when Eleanor was finished with treatment. We were SO excited! Things were looking up and we were beginning to get a grasp on living a more normal life when we found out Eleanor relapsed from neuroblastoma. We were absolutely crushed. Eleanor began treatment and things were pretty tough. I pushed through pregnancy symptoms because what Eleanor was experiencing was so much worse it just didn’t seem fair to complain. Although sometimes we would both be vomiting. She would vomit due to chemo and I would sometimes join her due to pregnancy nausea. Quite a pair we were.
About 12 weeks before Eloise was born we found out Eleanor was not responding to treatment, I honestly felt numb. We had no idea how it was going to work bringing a new baby into the world while being so immersed in Eleanor’s battle. More than one person would say to me “Wow, this could not be the worst timing” and for good reason. However, I finally decided I was not going to let negativity define Eloise’s birth.At 38 weeks pregnant, we packed our bags to be admitted for a week for chemotherapy and threw in another bag just in case the baby came. It had been one of my fears to deliver the baby while Eleanor was admitted because Eleanor always wanted either myself or her dad with her 24/7. We never left her side. I finally accepted reality that there was a good chance that Eloise would be born that week and this would just be part of our story. One thing that helped bring peace, was to let go of our original plans. We had plans to deliver at a different hospital with my regular doctor and I decided I didn’t want our family to be separated between two hospitals. Our plan was solidified that I would deliver in Eleanor’s hospital as a walk in if I went into labor.
A few days later into Eleanor’s inpatient stay I thought maybe I was having Braxton hicks, but then the cramping became more intense. I did not want Eleanor to be nervous or scared to see me in pain, so I did my best to hide it from her. I labored in her hospital room for the day and when things were more intense, I would go hide in the little bathroom. I remember having this moment leaning against the wall in the bathroom not believing this was really happening, and how comical it was. Sometimes you just need to take a moment to find humor in how crazy life can be.
That evening when things were progressing, I walked to Labor & Delivery and Scott stayed with Eleanor until my mom could be with her. While Eleanor fell asleep, Scott joined me for the rest of Eloise’s labor. Eloise was born into my own hands as our nurse was walking in the room. Things around us were chaotic and Eleanor was asleep on a different floor receiving chemo. It was as if time stopped and I could feel a sense of peace around me. Eloise was an absolute ray of sunshine and source of joy our entire family needed in some of the darkest days. Scott stayed with me and newly born Eloise for about an hour after her birth and then he returned to the pediatric oncology floor to be with Eleanor as she woke up.
Sometimes we aren’t sure what Eleanor remembers about her journey and fight… especially since it began at 3 months old. One night Eleanor found a picture of her and Eloise in the hospital bed. She said, “Me feel sick” and pointed at herself. “Mommy, Eloise made me better. Eloise maked me happy Mommy.”
From the very start Eleanor has believed Eloise was her baby. We truly believe Eloise played and continues to play a big part in Eleanor’s healing! The timing couldn’t have been more perfect when she arrived right in the middle of chemo treatment. I’m not saying it was easy, but sometimes the most perfect things aren’t meant; to be easy. When things were so dark, gloomy, and sad, Eloise arrived for Eleanor and for us all!”
Robbed of our innocence:
“A cancer diagnosis introduces children to a world of sickness, pain, and terminology they wouldn’t otherwise know of. Eleanor at 3 years old, inquires about things we are often surprised at. She constantly asks about cancer, germs and things that most toddlers aren’t worried about. Eleanor has missed out on going to church, birthday parties, holidays, family gatherings, and friend playdates. We even spent Thanksgiving in the hospital, it was so sad seeing all the holiday social media posts while we were within the four walls of the hospital room.
If I was honest, I would admit I am angry that Neuroblastoma stole a lot of our youth too. It changed who we are as people. My husband and I were just in our mid-20s when we became parents. Eleanor’s cancer diagnosis robbed us of our innocence quickly and definitely took a toll on us. It has aged us, mentally and physically. We can look at pictures of ourselves prior to Eleanor becoming ill and pictures after…and we see the lines and difference in ourselves. Worrying about our daughter surviving is a heavy burden, but also having to torturously witness her suffering has been incredibly difficult. We will carry those memories with us until the day we die.
Cancer changed us in many ways, but one of the positive ways it changed us is how we truly appreciate the time we have together. We cherish our health and every day we have with our girls. It sounds cliché, but we truly know what it is like to have our lives completely altered. We have chosen to have faith and to put our trust in God, we definitely could not have done it without that. But, we are human and we worry every day about the cancer returning or the many side effects that could occur later.
The thing is, it never gets easier. We are exhausted, but we won’t ever stop fighting. We have seen the impact childhood cancer has on our family but also others. We live every day, seeing kids lose their lives with the same diagnosis as our own, sometimes even after the same treatment we are about to undergo. This is war, this is war on childhood cancer.”
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*Photos courtesy of Sarah, Eleanor’s mom. Photos were taken before the coronavirus pandemic and may not reflect current health and safety policies.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES