Eight days. That’s all it took for cancer to steal the life of ten-month-old Amelia ‘Milly’ Mae.
Eight terrifying, heart-breaking , soul-destroying days. Eight days that began with a simple earache. And ended with two shattered parents planning a funeral for the baby girl they loved beyond measure.
This is a story that no parent ever wants to write. The story of the loss of a child – THEIR child. But it happened to Jayshree and John Watkins. Impossible to fathom, heart-breaking to read, it’s the story of how a family can wake one day and have their whole world crumble.
And all in just eight awful days.
Amelia Mae Watkins was born two weeks early on 11 July, 2016, weighing barely two kilograms.
“She came into this world on her own agenda, sassy and feisty as all can be,” Jayshree writes, for Love What Matters. “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.”
A little sister to Kaden, the siblings were the best of friends. ” When they were together not only was my world a ball of chaos, but also it was the happiest form of chaos,” Jayshree remembers. “[Kaden] 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.”
The family’s nightmare begins
In May 2017, the military family were preparing to move across the country to California. Millie had developed an ear infection but her parents weren’t too concerned at first.
But after a few days, Jayshree knew something wasn’t right with her little girl,
“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 recalled.
Doctors diagnosed a double ear infection and gave the tot another round of antibiotics. But there was a terrible invader that the medical experts missed.
One step forward, two steps back
The family hit their next stop, New Mexico and Millie became ill again, with an extremely high fever and a lack of energy so severe that she didn’t want to do anything but sleep. A ‘horrible virus’ probably caused by the families cross country trip, was diagnosed. New antibiotics were prescribed, IV fluids were administered and the family continued on their way.
“When we arrived [at our next stop], 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 celebrated my 30th birthday and right after, her health started to decline yet again,” Jayshree says. This time however, there was a new symptom. “She had a strange black eye on her eye socket. Not like the typical ‘shiner’ that mobile babies could get.”
Trusting her mummy instincts, Millie was taken to Phoenix Children’s Hospital where she had a battery of tests. And that’s when the punch in the guts happened for Millie’s parents.
Jayshree recalls the moment the doctor told them what had been troubling their precious baby girl.
“He sat down with us, looked at us and said … ‘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,” Jayshree remembers. “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.”
The fight to save Millie Mae
Through her tears, Jayshree tried to make sense of what the doctor was saying. None of the other doctors had noticed a mass, how could they have missed it? The doctor then informed the family that the tumour was so large that it was easier to miss as it seemed ‘too big’ to possibly be cancer.
“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.”
As treatment commenced, the family learned just how great the battle in front of them. The MRI revealed that their beloved Millie had advanced high risk, stage 4 neuroblastoma. The stage 4 status meant that the tumour had spread. While it had originated in her kidneys, probably while still in the womb, it had completely metastasized throughout her body. She had tumour spots in her lymph nodes, on her spine, on her femur, jawbone, and eye socket as well as both sides of her body and in her bone marrow.
Chemo began. Amelia’s parent learnt that their little girl might lose her hearing. That she would certainly lose all of her thick dark hair, her eyelashes, her fingernails. She would have mouth sores and there was no telling the long term impact on her gross motor skills. They were also told that kids with the specific level of cancer Millie had, had about a 40% chance of living beyond five years old. And still they carried on, doing everything they could to save Millie’s life.
Millie, you are so loved
Throughout everything Millie endured; blood transfusions, platelet transfusions, CRRT (a mild form of dialysis), sedation to ensure she wouldn’t pull out her tubes, she was surrounded, always and every day, by love. Her parents took it in turns to ensure she was never, ever alone. They read to her, they held her tiny hand, tethered down by restraints, they watched as she fought against the sedation medication coursing through her body, to open her eyes when she heard her mum’s voice. Every day, they told Millie how loved she was.
” 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.”
After five days of chemo, the family found out that the tumour was more advanced than anyone had anticipated. There was nothing else that could be done. Family came in to say their goodbyes. Kaden gave his little sister and favourite playmate one final cuddle. And Jayshree and her husband were finally able to hold their beautiful baby girl.
“We told her it was okay, that she didn’t have to fight it anymore, and when she was ready, to go.”
“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.”
How does a family recover from the loss of a child? It’s a pain that most of us cannot even fathom. For Millie’s family, they threw themselves into raising awareness and funds for research into, and treatment of, children’s neuroblastoma.
Millie’s dad, aunt and three close friends completed the Oceanside Half Ironman alongside other events, taking every opportunity possible to spread the message. So far they’ve raised almost $20,000 in Millie’s name for the Children’s Neuroblastoma Cancer Foundation. In the US, paediatric cancer gets less than 4% of total research funding. For Millie’s family, that it not okay and something they are working to change.
“My mom heart has been shattered into a million pieces.”
For Jayshree, each day brings new challenges, including struggling with feelings of guilt and endless ‘what if’s?’ “I constantly struggle with feeling the guilt of not saving her. I drove myself crazy wondering how I missed this,” she says.
“Our world was dumped upside down, turned inside out and was simply broken.”
Jayshree’s biggest learning from the experience? Trust your gut. “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.” We are are children’s biggest advocates and it is our responsibility to make sure they are heard.
You can find out more about paediatric neuroblastoma and support the family over at Millie Mae Strong.
Need a good news story? Take a look at our article about tot Skye Savren-McCormick, who defied all the odds and beat a rare form of blood cancer.