“330 days. That is the number of days we had our daughter with us. It was only 8 days from receiving her diagnosis to her passing. That’s how quickly the tumor shut her body down.
Amelia Mae Watkins was born on July 11th, 2016, at 1:09 p.m. She weighed in at 4 pounds, 10 ounces and was 2 weeks early. She came into this world on her own agenda, sassy and feisty as all can be. But she was also the sweetest, most beautiful blue-eyed, dark haired baby girl there ever was. We thought that despite her tiny body, she was healthy as could be. Little did we know that there was something inside of her that could take her from our family.
Amelia (or as we called her, Millie) was the little sister to Kaden, and boy did she love him. Kaden continued to be the very best big brother to her, but when they were together not only was my world a ball of chaos, but also it was the happiest form of chaos. He was her favorite person and I’d like to think I was her second.
She was my shadow. Everywhere I went she came with me. As she grew, she would make everyone around her smile. She would talk to everyone and eventually talk herself to sleep. She had her dad wrapped around her tiny little finger and would light up the moment she heard his voice. She really and truly was the happiest baby, no matter what.
Last May, with my husband in the military, our family was preparing for another move. This time we were going to California from Virginia. After 9 months of ‘okay’ wellness checks, we thought she had no serious health issues. Right before we left, we knew she was fighting an ear infection, and since it is fairly common in babies, we left the state with the doctor’s okay. Since we have made almost the same cross-country move years before in opposite directions, we knew that both kids could be thrown off their usual behaviors. Amelia started to become increasingly irritated, had a fever that came and went and came back, was extremely fatigued, not interested in anything to eat or drink (which was very unlike her), was very clingy and absolutely not herself. When we made our first big stop to stay with family in Texas, she was beyond the point of allowing anyone but me hold her. Not even dad would do. If she heard my voice, caught a glimpse of me or even smelled me, she would scream and cry until she was back in my arms. She would immediately grab my shirt and just lay her sweet chubby cheeks down on my chest and fall back asleep.
Knowing that this was definitely not normal, we took her into a pediatric urgent care right away. When we arrived and after the first exam, the doctor informed us that her ear infection did not go away — but it had increased to a double ear infection. They gave us another round of antibiotics and sent us on our way.
We kept up with all the things we could, giving her dosage of medicine, trying to convince her to eat, drink, play — anything. She started to seem a little like herself giving us hope that our talkative, happy baby would be coming back around. As we continued our journey, our next stop was New Mexico. When we arrived, she was back to not being herself and even worse. Her fever crept over 100 degrees and all she wanted to do was sleep. We immediately took her into the nearest emergency room where they hooked her up to an IV, told us that she indeed did not have a double ear infection, but barely a single. Not only was the infection confusing, they believed she had pneumonia, which was a surprise to us. They told us she could have picked up some sort of horrible virus since we were moving locations so often. The doctors discovered that the dosage of her antibiotics were completely off, wrote us a new one and recommended we admit her to continue to hydrate her. We informed them that we are heading to Arizona next where we had more family, and would take her in there since we had outside support for our son. After a long night, we continued on.
After a few days of this new medication and a huge amount of hydration, she again gave us hope that her health was coming back to normal. We celebrated my 30th birthday and right after, her health started to decline yet again. The biggest difference this time was her eye. She had a strange black eye on her eye socket, not like the typical ‘shiner’ that mobile babies could get. We thought that perhaps she had laid her face on her IV with the splint on it back in New Mexico. Her fever came back, her lack of drinking any fluids had us beyond worried, her black eye and her complete lethargic behavior told us to take her back in. Our son Kaden stayed with family while we took her into Phoenix Children’s Hospital, one of the extension campuses. We hooked her up for another IV, had blood work drawn and a belly X-ray. The doctors and nurses that we saw were stumped at her behavior and her symptoms. Bloodwork showed that she was anemic. One doctor noticed that her belly was enlarged and slightly hard to the touch. As her parents, we knew her as the squishy baby. We even said that she had a Buddha belly, so when we heard this we were surprised that it could mean something. One of the nurses noticed that she had thrush, which was a surprise to me because she was a bottle baby. The doctor that read the X-ray said she did not see any masses, but her liver looked a little enlarged and sent us down to the main campus to see a specialist. That ambulance ride was the only sleep that she got in days where she was not laying on my chest.
After being admitted, another team of doctors told us that they are stumped. That nothing is jumping out at them. They were thinking that something was going on with her liver, perhaps liver disease. The doctor ordered a complete CT scan so we could hopefully find some answers. At this point, John and I were staying in a hospital room and trading off who would drive 45 minutes to go spend a few hours with our son and who would spend the night not sleeping and holding Millie so she would sleep. When we finally had our scan scheduled, waiting for the answers shot my nerves through the roof. The doctor came in, much earlier than we had expected, which usually did not result in positive news. He sat down with us, looked at us and said, ‘I’m not waiting for the definitive radiologist report. That could take quite some time since this is a holiday weekend. I have good news and I have bad news. We finally figured out what has been making your daughter so miserable. She has cancer, we believe it would be stage 4 neuroblastoma. The good news is prognosis can be good, about 80%.’
I felt like someone just punched me in the stomach. My daughter had an 80% chance of living? I haven’t even thought of her first birthday. We haven’t even made it to our new home, we are living out of suitcases. I’m sure my face went pale as a sheet of paper. I felt my heart race, my hands shake, and I immediately clutched onto Amelia since she was sitting in my lap. No. This was not possible, she’s healthy. She was healthy her whole life. We never saw this coming. I tried to ask in between tears about the doctor originally saying she never saw a mass. This doctor took a breath and informed us that the tumor taking over her body was so large that the other doctor probably didn’t think it was a mass, because of the size.
Whatever the doctor said after that, I couldn’t tell you. All I could think about was, ‘How did I miss this? I am her mother. I see her every day, she grew inside of me for 38 weeks. How did I not see this?’ We had to wait to meet with the oncology team the next morning to discuss the plan, since we are still supposed to be arriving in California. We sat down and talked with the team of doctors in Arizona and they spoke with the Pediatric Oncology unit at Rady Children’s Hospital in San Diego. We made a plan to perform an MRI as well as a biopsy in Arizona and prepare to be air lifted. By the time we would land and get settled in San Diego, the results would be back and definitive for us to start treatment. We quickly learned that this tumor was much stronger than we had anticipated. During her MRI she coded, was placed on a ventilator and was moved to the PICU where we would not be allowed to hold her for the next 8 days. After having to give her body time to relax, we found out that she had advanced high risk, stage 4 neuroblastoma. The tumor started to grow from her kidney and completely metastasized throughout her body. She had tumor spots in her lymph nodes, on her spine, on her femur, jawbone, and eye socket (hence her black eye), as well as both sides of her body in her bone marrow. Oncologists believed that the tumor most likely started to grow as she was developing before she was born. We started signing papers left and right to immediately start treatment in order to try to shrink the tumor.
Specific nurses came in to deliver the chemo. They wore special colored suits, different gloves, and different face masks. Large ‘chemo in progress’ signs were placed on her door as well as her windows. We were told about this process of chemotherapy, a bone marrow transplant after harvesting her own marrow, we learned about the shots that we would have to give her, what we would do if she had a fever, the short term and long term effects that could happen from this chemo. We learned that she could lose her hearing, she would indeed lose all of her thick dark hair, her eye lashes, her fingernails, she would have mouth sores, she could have problems walking and talking, and that our 10-month-old baby could have her own fertility problems. We also learned that kids who have this specific level of cancer had about a 40% chance of living beyond 5 years old, and that either this cancer could come back or another one could take its place.
Amelia received blood transfusions, platelet transfusions; she was placed on CRRT (a mild form of dialysis) to help her kidneys flush the toxins from her body. We had pictures printed of what she looked like placed around her room. Her body was being pumped full of so much sedation medicine the multiple nurses and doctors didn’t even know she had the richest blue eyes ever. Over the course of 5 days, she received her treatment. John and I shuffled back and forth spending time with Kaden and Amelia. We waited and waited for doctors to give a report, and all we were told is ‘we just need time to let the medication do its job.’ We sat and read to Millie, I held her hand that was tied down with baby restraints so she wouldn’t pull the tubes when the medication wore off. We couldn’t hold her, but I talked to her. I saw her sweet blue eyes fighting the sedation medication so hard when she heard my voice, just to look at me. That was the last time that I ever saw her eyes open.
We told her all day every day how much we loved her, and I told her how sorry I was that I didn’t see this sooner. After 5 days of chemo, which was her first round, we found out that the tumor was far more advanced than we thought and the medication simply did not have enough time to work. The doctors told us that there was nothing else they could do to save her life. I asked if there was any way that we could donate any of her organs, but the tumor and chemo completely ruined that. I was thinking maybe she could help another baby in some way that some other mom and dad wouldn’t have to feel the immense pain that was on our hearts.
We had family come in, Kaden came to say goodbye, and we were finally able to hold her. We held her as long as we could, told her how proud we are to be her parents. I told her how incredibly sorry I am that I couldn’t save her life and we promised that we would do big things in her name. We told her it was okay, that she didn’t have to fight it anymore, and when she was ready, to go. At 4:15 p.m. on June 6th, we said goodbye to our daughter who was only 5 days shy of being 11 months old.
Since then, we have pledged to work side by side with the Children’s Neuroblastoma Cancer Foundation based in Illinois. We have done different fundraisers that have allowed us to raise around $20,000 in Amelia’s name. It may sound like a lot of money, but pediatric cancer gets less than 4% of total funding for cancer research. That is not okay for our children. We are their advocates; we are their voices. My husband, my sister-in-law and 3 of John’s close friends from work all raised money and awareness by racing and completing the Oceanside half Ironman. We conducted a fundraiser with Pura Vida designing bracelets in her memory; we designed custom shirts with Custom Ink that spread her name across the world. But to us, that is not enough.
I constantly struggle with feeling the guilt of not saving her. I drove myself crazy wondering how I missed this. Looking back, I brought different health concerns to her pediatrician’s attention. She didn’t have any teeth, she hated tummy time and refused to crawl and would only want to scoot on her butt, her soft spot was larger than it ‘should’ have been. The doctor assured me she was fine. I cannot say with any certainty, but tumor spots found in those specific areas could have caused all of those individual instances, maybe. We took her to the doctor every single time we knew something was not right with her. We aren’t the medical professionals; we did everything we could as her parents to make sure she was healthy. The biggest thing we can do as parents is trust our gut and hold our babies tight. If something is not right, and you feel in your heart that your baby needs something — go get it.
Our world was dumped upside down, turned inside out and was simply broken. My mom heart has been shattered into a million pieces and I cry more days than not now. I hold onto Kaden closer than I ever have every day. My heart will never be put together the same way; it will always have cracks and holes in it from losing our daughter. I cannot change the fact that she was taken from our family. But what I can change is how we move forward with our lives and how we keep her memory alive.”
This story was submitted to Love What Matters by Jayshree Watkins, 30, of Oceanside, California. She is the founder of milliemaestrong.com. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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