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September is Childhood Cancer Awareness Month. Last September I didn’t even know that this was a “thing.” I didn’t know that there was a whole month dedicated to children who were dealing with the unimaginable pain of treatments for their cancers. I didn’t know there was a time each year where the families affected by pediatric cancers make a push for more awareness, research, and cures for their babies. And how should I know? Last year at this time I had two healthy children- a three year old little boy who loved his baby sister- then only 2 months old- so fiercely that it made my heart skip a beat. Never in a million years did I think that I would be sharing this story; that I would be one of those parents whose child was diagnosed with cancer.
After 19 painful shots of progesterone and multiple standard checks, on July 11th, 2016, Amelia Mae was born to our family at 2 weeks early. Our feisty girl weighed in at 4lbs 10 oz, 18 inches long. She was the perfect addition to our family. Her big brother Kaden was born 10 weeks early, so Millie’s short-term NICU stay of only 5 days because of temperature regulation seemed like a breeze. She had a head full of dark hair and bright blue eyes and we thought everything was just perfect with her. What we didn’t know was a tumor was growing off of her kidney that would take over her body, and take her from our family.
It was clear from the beginning that Millie was a mama’s girl. She loved to be held, snuggled, and close to us at all times. I would spend countless hours just rocking her because that was all that she wanted- to be held by her mama. She taught me to slow down and that everything else can wait. It was exhausting, of course. Having a newborn always is the most tiring experience of any mother’s life. There were days where I was cranky, where I was short with Kaden or my husband John, and when I just wanted a break from it all.
There were days where I wished someone would just hold Millie for five minutes so I could shower or heck, just pee by myself. But now- my God, now I wish I could have those moments back. I would give anything to have those moments back. I regret any moment that I ever felt exhausted, frustrated, tired, or plain old done with everyone around me. I miss her so much.
As Millie grew older one thing stayed the same- she was a mama’s girl. She was my side-kick. My partner in crime. We never left each other’s side. Her personality began to really shine through, too. She was always happy, bubbly, and smiling. This girl would talk all day, every day to anyone and everyone. She would even talk herself to sleep. She had people smiling every single place she went, and still continues to brighten the world with her smile. Not many parents could say that about their baby, but Millie actually was the happiest girl.
When she would see her brother her mood would brighten instantly. When her dadwould walk through the door, she would scoot on her little bum all the way to his feet. She had the most beautiful smile and the best belly laugh. Her blue eyes and dark hair were something that supermodels would envy. Millie was her daddy’s twin, too, and she had him wrapped around her finger from day one. Who wouldn’t be with that smile?
Millie wasn’t sick. At her nine month checkup there was no indication anything was wrong with her. The doctor gave her a clean bill of health. She was happy, and as far as we knew, healthy. My husband is active duty Marine Corps and in May of 2017 we were on our way across the country from Virginia to California. Millie had been running a fever and had been diagnosed with an ear infection. As we continued to travel west, we had to take her to urgent care offices and emergency rooms because she was showing signs of dehydration, she was refusing to eat, and she was extremely lethargic. When we made it to Arizona, we took her back in yet another ER where an on-top-of-it doctor finally diagnosed her with anemia and dehydration. His instincts told him to continue searching for answers as Millie’s belly looked a bit enlarged- this was the first indication that this was more than an ear infection or a virus.
We were shortly transferred to the downtown Phoenix Children’s Campus where they had the specialists we needed to see. After an x-ray and an ultrasound found no known causes, a CT scan of her whole body was ordered. At this point we had spent days in the hospital. When the results of the CT scan finally came back, the doctor shook our world in a few short words.
On May 29th, the doctor sat down and said, “We have good news and we have bad news. Bad news is, she has cancer-the good news is the prognosis is good”.
Jesus. What? Did I just hear that right? Did you just say my daughter, my sweet ten month old little girl, has cancer?
No. No, this isn’t possible. This is wrong. All wrong. Someone run another test. Get me another doctor. For Christ’s sake, someone punch me and wake me up from this nightmare.
I started sobbing and clutching on to our baby as my husband tried to maintain his composure asking questions. We started to write out our plan of action which included plans in Arizona and plans in California, where we were due to be within a matter of days. Our house was packed up in a truck, making it’s way to our new house in California. Our son, who was there for every moment of this terrible nightmare, was scared and worried about his baby sister. This can’t be happening, I kept telling myself. It can’t.
We all agreed that we would be air transported the next day to immediately start treatment at Rady Children’s Hospital in Balboa, California. Millie was first scheduled for her MRI and biopsy to officially confirm the diagnosis as well as see if the tumor had spread. At this point we were scared but we were hopeful. Millie was a fighter- after all, she was sick this whole time and we didn’t even know it. But then we got the news that would punch us in the gut when we were already down.
Shortly after her MRI, we learned that the tumor was much more than we had ever anticipated. She was diagnosed with stage 4, high risk, advanced Neuroblastoma.The tumor spread all throughout her body. There was the primary tumor which started on her kidney (from the adrenal gland) and she had spots of the tumor in her femur, her jaw bone, her eye socket, her skull, her spine, lymph nodes as well as in both sides of her body in her bone marrow. This whole entire time, her whole ten months of life, we had absolutely no idea this was taking over her body.
We learned that the tumor was beginning to be so large that Millie’s lungs were losing capacity. Doctors had put her under anesthesia to keep her comfortable, but she had complications and coded. We were immediately placed on the Pediatric Intensive Care Unit where we would spend the next 8 days with our girl, unable to hold her.
Millie was placed on a ventilator and it was determined that we needed to immediately start chemotherapy while still in Arizona in order to shrink the tumors before we could transfer to the hospital in California. We agreed, signing papers left and right to start her on the strongest medicine that a 10 month old could have. Over the course of 5 days, she completed her first round of chemotherapy along with multiple blood and platelet transfusions. She was also placed on CRRT (which is a mild form of dialysis) to help her kidneys flush out the chemo.
We had to take shifts with our baby girl and our son. Back and forth, we tried to spend as much time as we could with both kids. At this point we could only sit with Millie and hold her hand while she fought for her life, but I didn’t want to leave her side. Going from having her in my arms almost every single minute of every single day to not being able to pick her up was horrible. I would talk to her, read to hear. She would hear my voice as I talked to staff, trying to fight off the sedation medication. Occasionally she would open her bright, beautiful eyes to look at me for a split second. I still see that in my head when I close my eyes.
We were told her course of treatment would be at least 1.5 years long and we were overwhelmed with the short- and long-term effects of the chemotherapy drugs planning to use to save her life. We learned about the shots that we would have to give her; what we would need to do if she got sick (even a mild fever). We learned she would have to get multiple blood and platelet transfusions. We would have to do a bone marrow transplant after harvesting her own marrow. The course of treatment was daunting, and although my baby is girl is gone, this is one thing I am glad we could spare her.
Our time in the hospital felt like an eternity. We sat with Millie, waiting for the doctors to let us know if the medicine was working. Every time someone came in the door, we were hoping they would provide with some sort of news. Eight days after her official diagnosis, we found out that the tumor was so advanced we just didn’t have enough time for the medicine to work. The doctors told us with tears in their eyes that there was nothing else that they could do to save her life.
That afternoon, we were finally able to hold our girl for the first time in over a week. I told her how proud of her I am, how proud I am to be her mom, and how deeply sorry I was that I couldn’t save her life. I told her that it is okay that she can’t fight anymore. At 4:15 p.m. on June 6th our sweet girl gained her angel wings.
I was pissed.
I was hurt.
I couldn’t breathe for days.
I lost weight because I couldn’t eat.
I felt like an elephant was sitting on my chest and I couldn’t sleep.
Every time I closed my eyes I would hear her taking her last breath. I would feel how cold she was and all I could think of is how she hated being cold. My sweet girl that I so desperately wanted was no longer here with me. We will never see her go to school, hug her, kiss her chubby cheeks, see her get married, hear her fight with Kaden like siblings are supposed to do. We would never hear her laugh ever again.
Before Millie was born I spent so many days and nights wondering how I was supposed to parent two kids at once. My son, Kaden, and I spent so much time with it just being him and I. We had a special bond- how will I feel about this other baby? Once I got our routine down, I realized that moms always say “your heart grows with each child” is completely true. My heart swelled every time I looked at both my babies. But now I had to walk out of this hospital without Millie in my arms. I wouldn’t be coming back for her. I felt empty. I feel empty.
Part of my body still feels like it is missing. I will always and forever feel like that. Every day I question: Why her? Why us? What did I do that was so horrible that my daughter would be ripped away from me in 8 days?
A little bit before we learned of Millie’s diagnosis, I felt like I needed to be doing more with my life. I just felt like I had more to do, more to give beyond caring for our family. As I sit here and think of ways to spread awareness by continuing to tell her story, I can’t help but think that this is what I was meant to do. In Millie’s short, almost 11 months of life, she showed me that even with the worst possible situation, to keep smiling. She kept laughing every single day and she made people so happy. That is why I have been pledging to work with Children’s Neuroblastoma Cancer Foundation to raise money in Millie’s honor- to spread awareness, to help other parents, and to continue her life legacy.
Maybe she wanted to be held all the time because maybe she knew I wouldn’t be able to hold her for too much longer.
Maybe she was so happy every single day because she knew she had limited days.
I have no idea if any of this is true, but I think it every day and it brings me a level of comfort. She is still very much a part of our family and will be forever. We tell her good morning and goodnight every day. I tell her how much I deeply miss her every single day. Almost every night as I try to go to sleep tears roll from my eyes because I just miss her so damn much.
Some mornings, I just don’t want to get out of bed. But I do, because I am a mother and a wife, and my boys need me. I know I am allowed to feel down. I’m allowed to not do anything – and somedays not a damn thing gets done besides me getting up, showered, dressed, and making sure that Kaden and I eat. I keep moving forward because I have to.
I don’t hate much, but I hate cancer and really freaking hate that the world continues to move on without Millie in my arms. I promised her I would try to do big things in her name. I wish she was with us here in California; she would love it here. But I would rather feel this heartbreak than have her feel an ounce of pain from the treatment she would endure from this monster. I know that all of my efforts wont bring her back to us, but maybe – just maybe – it could help another family from feeling our pain.
This article was written by warrior mom Jayshree Watkins. If you would like to get more involved in the Watkin’s family’s cause or read more about Millie Mae or pediatric neuroblastoma, please visit Millie Mae Strong.
If you would like to help honor Millie’s name and legacy, please consider donating to Children’s Neuroblastoma Cancer Foundation in Millie’s name.
Photo Credits: Rachael Laurin Photography