Trigger Warning: This story has themes and images of child loss that may be triggering for some.
“My husband, Ross, and I met in college in 2009. We started dating after the two of us were randomly assigned to do a project together. We had fun, traveled, started our careers, and got a dog. In 2013, we were married. For the next year and a half, we continued our fun, spent time with friends, traveled some more, and bought a home. In 2015, we decided we were finally ready to start a family.
Starting our family was easy, but keeping it was hard. I first found out I was pregnant in 2015. It was a complicated pregnancy with significant bleeding and many doctor’s appointments. I was sent home each time having been told nothing was wrong.
On July 23, 2015 my water broke, and we delivered what would have been our healthy son, Ryan. But he was too early. I was only 20 weeks pregnant. When we met Ryan, we took photos and got him baptized. We held him until his heart stopped beating in my arms. After that moment, we knew we needed a family more than ever.
After that pregnancy, I was diagnosed with an incompetent cervix. My risk for delivering early was high, but at least the doctors knew what to look for this time around. I found out I was pregnant again in October of 2015. At that moment, I knew in my heart it was a girl, Natalie. We did everything we could to keep her in as long as we could. Despite our interventions, Natalie arrived early. I was 32 weeks pregnant when my water broke on Mother’s Day.
Labor was easy, but shortly after Natalie was born, the NICU team rushed to meet us to tell us they did not think she was going to make it. This could not be happening again! We went to visit her in the NICU. Natalie was dying. Our baby was in septic shock. Thankfully, after a few very scary days, Natalie began to recover. We were able to hold her 4 days after she was born. She was diagnosed with meningitis, which can have lifelong consequences, but we were lucky. Natalie was able to hit each of her milestones as she grew.
After Natalie was born, I got an even better plan in place with my doctors. Each pregnancy I had in the future would need a surgical procedure called a cerclage to help support the weight of the pregnancy. Ross and I decided to expand our family. We had a healthy son, James, in 2018. And in October of 2019, we were pregnant again with another little girl. Life was good. Until I noticed something.
I first started to notice a change in December of 2019. Natalie always had a chronic runny nose, but it had started to become more blood-tinged. We brought the kids to celebrate Christmas at Sesame Place on December 21, 2019. She was not her usual happy self that day, and we decided to leave early. As we were leaving the park, Natalie had a major nosebleed. EMTs came to help and offered to take us to an ER if we couldn’t get it under control, but we eventually did. We got dinner on the way home and called the pediatrician, who prescribed a nasal spray. Over the next few days, her symptoms improved. We had a great Christmas and celebrated with our family.
The weekend after Christmas is when the headaches began. We went to the pediatrician and then to the ER, only to be told Natalie looked ‘healthy.’ We were temporarily relieved. But on Monday, as my husband was dropping me off at the SurgiCenter for my cerclage, we got a call that the ENT at Children’s Hospital of Philadelphia wanted to see her immediately. I had my procedure and then we rushed out of there so Ross could bring Natalie to the ER at CHOP.
Ross and Natalie arrived at CHOP’s ER where the ENT was waiting for her. They looked up her nose and knew something was there. They thought it was possibly a bead or something benign. After completing a CT scan, Ross and Natalie were admitted to the hospital, having no idea what the scan had shown. I arrived to meet them early the next morning. I will never forget the look on the doctor’s face as he approached us. I had a knot in my stomach before he even spoke. He said, ‘There is a mass behind your daughter’s nose, around her right eye, and invading her optic nerve. We need an MRI before we can go forward.’ I felt the sadness in his voice as he delivered the news. I knew things were bad. My mind flashed back to a Google search I had done that fit her symptoms, rhabdomyosarcoma.
Natalie’s MRI required sedation, so while we were waiting in the recovery room, the ENT doctor came back with even more sadness in his voice. ‘I reviewed the MRI. I am sorry to tell you it looks malignant. Your daughter has cancer.’ He could barely look at us as he delivered the news. I burst into tears. I asked him a multitude of questions.
‘Is it in her brain?’
‘Thank God. Is it in her lymph nodes?’
‘Not from what we could see.’
‘What is it? What type? What do we do?’
‘I am not sure. We rarely see this. It is very unusual. We won’t know anything until we get a biopsy.’
After a flurry of apologies, he left us alone in our shock and sadness. Natalie was sitting in my lap, completely unaware of how much all of our lives were about to change. Ross and I cried, and we wondered how once again this could be happening. This had to be a dream. But it wasn’t. This was real life. We cried, we held each other, and we picked each other up. By the time the oncologist came to see us, we had resolved we were going to beat this thing no matter what. We wiped our tears and we were ready to fight for our family once again.
We were discharged home without many answers as to exactly what we were dealing with. Natalie had increasing pain over the next few days. Tylenol and Motrin were no longer managing her pain. Natalie was never a complainer, but she was up all night.
We were a few days away from her scheduled PET scan and ovarian tissue preservation procedure. We called the oncology clinic and they brought us in early. We met with Dr. R who gave us our daughter’s diagnosis of ‘nasopharyngeal embryonal rhabdomyosarcoma.’ She laid out the treatment plan. We could see in her delivery she was trying to find the best way to say it, so as not to overwhelm us.
We were told Natalie had about a year of treatment ahead of us and were informed her tumor was inoperable. She needed a minimum of 42 weeks of chemotherapy and every 3 weeks, she would need to be admitted to the hospital for her bigger chemo treatment called VAC.
Dr. R nervously followed that up with Natalie needing 28 sessions of proton therapy, each one requiring general anesthesia. As Ross and I tried to process this information, Natalie was admitted to the hospital that day for pain management. Our daughter needed morphine every 3 hours to not be in excruciating pain.
The next day, Dr. M met us to help get things moving so we could start chemo as soon as possible. This was when we started getting our first bits of good news. We were told the additional imaging had shown Natalie’s tumor was actually not in Natalie’s optic nerve and for now, her vision had been spared. Her chest CT came back clear. We asked Dr. M, ‘Is this treatable?’ and her response changed our whole outlook.
She said, ‘Anything is treatable. What you need to know is if this is curable. And Natalie’s is curable.’ I think that was the first time Ross and I felt any relief since December 30. We knew this did not mean it was guaranteed Natalie would be cured, but it meant she had a chance. A chance was all we needed to push forward. Natalie started chemo later that week.
The next few days were really difficult. We were filled with resolve to get Natalie through this. But upon seeing her reaction to that first round of chemo, it made me question everything. Our girl who loved to eat would not eat anything. She was weak, she had started peeing the bed again, she was vomiting, and she was crying. We were discharged 2 days later and told to come back to the clinic to meet her primary oncologist.
I remember getting her home that first day and my mind immediately went to, ‘I need to get her outside. No 3-year-old should be confined to the house.’ I put her in the wagon and tried to bring her around the block. She could barely hold her head up. She cried to go home. I turned around and brought her home. I doubted whether we had the strength to do this. Chemo was supposed to be cumulative. It was supposed to get worse from there. I got my first taste of what I thought cancer truly looked like.
The next week, we went to the clinic for the first time. We met our primary oncology team. Our team consisted of an oncologist, a fellow, a nurse, and a child life specialist. We brought Natalie’s chemo duck. It had a port just like Natalie’s ‘straw’ and it really eased her anxiety about having a port. We left the clinic with a bit of a confidence boost. We loved her team, and she did well!
2 days later, that confidence was shattered as Natalie got a fever on her very first round. We had an ambulance ride, our first blood transfusions, and another hospital admission. She had rhinovirus, a common cold, and after two nights, she was sent home.
Thankfully, things calmed down a bit after that. We were starting to get used to our routine when the time came to start proton therapy. 28 days in a row of getting radiation under general anesthesia. We met with the radiation team, where they reviewed the risks associated with radiation. Burns, cataracts, endocrine dysfunction, and secondary cancers. I had a hard time accepting we had to put her through radiation, but if we wanted to beat rhabdomyosarcoma this seemed to be the most effective way.
Proton therapy began just as the shutdowns for COVID began. Natalie was going to be tested every Monday, Wednesday, and Friday. If she tested positive, all treatment was going to be put on hold. My husband and I are both nurses. I was on medical leave for my high-risk pregnancy, but Ross was still working in the ER. At the time, not enough was known about COVID. There was a lack of supplies in hospitals, and the world was on lockdown. We made the difficult decision to have Ross move out during proton therapy. My mom moved in to help with James. Just when we thought we were getting a handle on things, a pandemic was thrown in the mix! My husband was unable to be with his family during one of the most difficult times of our lives.
As the weeks of proton therapy progressed, Natalie had some swelling and minimal skin peeling, but less than I had mentally prepared myself for. Ross moved back in after 6 weeks and we continued on Natalie’s chemotherapy treatment plan. Natalie had her first MRI 6 weeks after completing proton therapy and we were thrilled to learn that the tumor had shrunk by over 40%!
From that point on, we pressed on. We went to the clinic two to three times a week for chemo and blood products. We often spent 8 hours a day or more at the clinic. Natalie spent her days distracted with toys, movies, arts, and crafts. We got better at managing her nausea, we got in a routine with her counts, fevers weren’t hospital admissions, and she even made friends.
Even though we were told Natalie would need to be admitted to the hospital every 3 weeks, we managed to never have another hospital admission again after her first fever. Natalie was stronger than we ever even knew.
Natalie pushed through those 42 weeks and made it with no treatment delays. We had more good days than bad, and none of our days were as bad as those first days. Even when Natalie eventually lost her hair, she told me she loved her haircut and that she looked, ‘Really good.’ I did have some late nights where I had moments of fear of the unknown creep in. I spent nights googling stories about rhabdomyosarcoma and sometimes had trouble sleeping. But in the morning, I would see Natalie and just know everything was going to be alright. We were so worried about getting Natalie through this, but in fact, it was her strength that got us through.
Natalie had her last chemotherapy on October 7, 2020. We were relieved. I could not wait for that day to come. Despite this, I found my anxiety increasing the closer we got to her end of treatment scans. I had a hard time living in a world where we were not actively fighting her cancer. I imagined the worst. I prepared my mind for tumor progression, even though in my heart I knew her cancer was gone. With each passing day, even though the chemo may have gotten harder, I could see our girl coming back to us.
Around 6 p.m. on election day, our fellow called us to report all of Natalie’s scans showed no malignant activity. She was cancer-free! Ross and I let out a brief, tearful cry. It was as if I knew all along what the scan was going to show and now it was just confirmed. I felt as though I had been guided to this moment and it was finally here. We were returning to real life.
We have been living a cancer-free life for a few weeks now. Every day I see bits of my little girl coming back. Her energy is higher each day, she is interested in learning, and we are even seeing some hair growth!
On our personal social media accounts, you won’t find fancy pictures or sad stories about Natalie. We did everything we could to be sure cancer was a part of our life, but not our whole life. Despite how hard Natalie’s treatment was, we know we were lucky in her battle and not everyone has that option.
We count our blessings each and every day and pray for anyone walking this path in life they can find peace and happiness on this often long and difficult road. You can never give up hope. We still have 5 years left before Natalie is officially cured, and we pray one day, we will get to say those words. For now, we are looking forward, not back. We want to be sure to remember our past, but not live in it. We are ready to give Natalie the life full of happiness she has worked so hard for.”
This story was submitted to Love What Matters by Julie Eckbold from Wilmington, DE. You can follow Natalie’s journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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