330 days. This is how long Jayshree and John had their beautiful baby girl, Amelia Mae, by their side. Amelia, or Millie as they called her, was her mother’s shadow, her dad’s sweetheart and her big brother’s best friend.
More than just an ear infection
Eight days before Amelia’s passing, Jayshree thought her daughter had an ear infection, possibly a double ear infection or possibly pneumonia. It turned out to be much worse.
The family was on a massive move across America, moving to a new state for John’s work with the army. Every day on the drive Millie seemed to be less and less like herself.
As Jayshree shares with Love What Matters,
Right before we left, we knew [Mililie] was fighting an ear infection, and since it is fairly common in babies, we left the state with the doctor’s okay.”
However, as they made the massive trek, Amelia started to become increasingly irritated and clingy. She wouldn’t go to anyone but her mum, had a fever that would come and go, and was extremely tired.
Jayshree took her to the doctor in the first city they stopped in. The doctor informed them that Millie’s ear infection had progressed to a double ear infection.
The doctor gave her another round of antibiotics and sent them on the way.
A strange black eye
When the family arrived at their next stop – New Mexico, Millie wasn’t much better.
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.
They believed she had pneumonia, which was a surprise to us.”
More antibiotics and hydration and the family were on their way again. For a few days, Millie was herself. However, it didn’t last and Jayshree noticed something strange about her daughter’s eye.
She had a strange black eye on her eye socket, not like the typical ‘shiner’ that mobile babies could get.”
In addition to the black eye, Millie’s fever had also returned as well as her lethargic behaviour.
A devastating diagnosis
They took Millie to Phoenix Children’s Hospital and doctors searched and searched for a diagnosis.
They found Millie was anemic and her liver was enlarged, but they weren’t sure why. They ordered a CT scan which is how Jayshree and John discovered their daughter had stage 4 neuroblastoma.
Neuroblastoma is a cancer that develops from immature nerve cells found in several areas of the body. Neuroblastoma most commonly arises in and around the adrenal glands, which have similar origins to nerve cells and sit atop the kidneys.
Stage 4 neuroblastoma means that the cancer has spread to other parts of the body, including bones, skin, liver and other organs.
‘How did I miss this?’
A heartbroken Jayshree shares,
I felt like someone just punched me in the stomach. 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.
No. This was not possible. She’s healthy. She was healthy her whole life. We never saw this coming.
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?’
Doctors soon discovered the tumour had taken over most of her little body, which is why it was hard to discover a mass – it was everywhere. While it had started in her kidneys, the cancer had spread quickly.
She had tumour 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.”
The last time I ever saw her eyes open
Treatment would start right away. But with the chemo came the risks. She might have mouth sores, kidney problems, or fertility issues down the road. She might lose her hair, and her hearing. She could lose her fingernails, her eyelashes.
But as long as they didn’t lose Amelia, Jayshree and John knew it would be okay.
For five heartbreaking days, they watched their little girl try and fight the tumour. She received blood transfusions, and platelet transfusions; she was placed on CRRT (a mild form of dialysis) to help her kidneys flush the toxins from her body.
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.”
Saying goodbye to Millie Mae
After 5 days of chemo, which was her first round, the heartbroken parents found out that the tumor was far more advanced than they thought and the medication simply did not have enough time to work.
They would have to say goodbye to their little girl.
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 was 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.”
Life without Millie
Jayshree made her daughter a promise – that she would do big things in her name. And she wasn’t going to let Millie down.
The couple now works side by side with the Children’s Neuroblastoma Cancer Foundation based in Illinois, working tirelessly on fundraising and campaigning.
They started the Millie Mae Foundation which provides financial and other support to children and families affected by childhood cancer
But, to Jayshree, it never feels like 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.
We took her to the doctor every single time we knew something was not right with her. 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.
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.”
Since Millie’s passing, John and Jayshree welcomed two more beautiful daughters, continued to move with John’s job changes and have continued their work through The Millie Mae Foundation to help other families with children who are facing the battle of pediatric cancer.
You can find out more about this foundation and show your support through the following:
How we can help children like Millie?
In Australia, you can also help raise awareness and donate to those fighting cancers, such as neuroblastoma, through the following foundations:
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