Alice Josi the Rockstar

Submitted by Andrew

November 27, 2013

The day my life changed forever.

On November 23, 2013 at 10:19 am, Medical Center Hospital, Odessa TX, a 19 year old kid evolved into a man, a father, and a provider in a matter of seconds. 

Her name was Alice Josi Bernal. 

When I held her for the first time, I was mesmerized by her. She was a superhero with the special power of melting my heart. From the very first moment she was born, I didn’t even think of the simple fact that I had just became a father. Adrenaline, fear, anxiety, worry, excitement, whatever my brain could process in seconds is how I felt in the hospital that night. It wasn’t until I got to hold her, skin to skin contact, that’s when it hit me. That’s when I realized, this is mine. This little bundle of so much joy and energy and a living beating heart, is a part of me.. I helped create this life. I’m a dad now.. 

It was, undoubtedly, the best day of my life.

Alice, then, turned 1. And then I joined the Navy, active duty. And then she turned two. We moved from Texas to Florida and then baby girl turned 3. Then 4, and 5, 6, then 7… we packed up again and moved all the way to California…and then my baby girl turned 8… if I had known then, my sweet, sweet Alice Josi would be forever 8…I would’ve done more… My job was starting to take its toll on me, although, I wasn’t very open about it. Mentally, I had a lot to deal with the only way I knew how. Work through it and talk about it later! Alice, 8 years old, third grader at Akers Elementary in Lemoore, CA, was dealing with her own mental issues. She was bullied at school by the neighbor kids. Bullied to the point that her mom and I switched schools to distance her from them even just for a little bit. All the while, Alice is battling through migraine after migraine.. These migraines came very unexpectedly. But she wasn’t always open to talk about them. I mean, it makes sense doesn’t it? To an 8 year old kid, having a headache means I can’t play outside or watch tv or read my books and comics. Alice was a lover of many things. She had so much personality. She had great taste in everything and always knew how to accessorize. Her loves we’re always Music, movies, tv shows, comic books, Pokémon, and the occasional watching sports with Dad. Everything was normal. For 8 years, everything was normal. Even with these ugly and cruel people living next door, we always had her back and we made sure there was love waiting for her as soon as she walked in her house. 

Her favorite holiday was Halloween. Same as mine. The colors of fall, the spooky decorations her mom and I would put up in the beginning of September, the spooky movies on Disney plus, the spooky cupcakes, the spooky breakfast every Saturday when she was off of school, spooky this, spooky that, and spooky everything! Alice truly appreciated and loved the art of spook. And then, along came the holidays. Christmas and Yuletide holidays. The house would go from spooky to holly within weeks. Sure, she loved it. I don’t know any kid that doesn’t like cold weather, presents, and two weeks off of school. Am I right, parents? However, Alice appreciated more of the meaning of the holidays. The true meaning. Having the family together and giving hugs and kisses and time to each other. She loved to watch movies and certain movies during the later seasons. Her favorite Halloween movie was the nightmare before Christmas, no brainer. Her favorite Christmas movie, The Grinch. The holidays passed again and here we are going into 2022, not knowing at all what’s coming around the corner… it was a quiet start to a new year. It was a quiet spring. Summer of 2022 was the start of what will now be a lifelong feud between two families that won’t ever see eye to eye or agree to disagree. Alice’s entire summer was robbed by two sisters who never had anything nice to say about her. No matter what the reason was, Alice didn’t deserve any of it. Alice was the kindest, most gentle, loving girl in the entire neighborhood. She knew how to forgive, at times a little too well. These kids made her life unbearable to the point she couldn’t go outside and play. Even by herself. Then the migraines started to happen a little more frequently.. as parents, we tend to disregard headaches and migraines by saying “here you go! Take this Tylenol, and go lay down you’ll feel better!” 

September 19th, 2022

Now begins what will soon be the living nightmare I can’t wake up from.

TW…

It was a Monday. Work was normal. Work load was normal. Mommy is pregnant with now our third child, a soon to be healthy baby boy due in December. Sounds normal. We’re all excited and my son August, 3 years old, is excited to be a big brother. Alice is upset she’s not having a baby sister, but otherwise, everything is normal. I took her to school that morning.. she seemed tired, maybe a little lethargic, but I didn’t think much into it. It’s an early Monday morning, how much more normal could it be? What seemed to be a normal Monday changed when Alice came home early from school because of more migraines. Something was off about these migraines and how they were making her feel… she was in excruciating pain… she threw up in her bed while she was just trying to rest and sleep it off.. She went from her bed to mom and dads big bed. Still crying, still trying to feel normal again. These migraines came and went but not like this. This one, Alice felt like it was here and wasn’t going away.. the entire day, Alice was in tears… she would cry for help and cry on the floor in the bathroom thinking she needed to throw up and nothing was coming out. As a parent, there’s only so much you can do and say. When you’ve ran out of the things to say and do, well then you start to get annoyed. Which is where I went wrong and just wish I could go back and do it differently that day… We then got Alice to lay down again. Still in pain. Still lethargic. She was just so tired and needed to sleep. I came to bed at 11 pm. Alice is next to me. I rolled over, not quite asleep yet, and then I noticed something. I noticed a pool of what I thought was drool at first.. it wasn’t drool. It was vomit. Alice was still asleep with eyes closed.. I got up, not fully comprehending what’s going on. 

“Alice…Alice…ALICE! Hey, wake up baby…”

I’m starting to shake her to try and wake her up. She isn’t waking up to the sound of my voice. So then I pick her up and her body is stiff. Her arms and legs locked. I tried to carry her to the bathroom but her body seemed to be frozen and can’t move. I called for Amanda. She calls over some friends to help as I’m calling 911. EMTs came, Alice is still in a very deep sleeping state…Amanda and I are terrified and we don’t know what’s going on. She’s then rushed to the nearest hospital to ER. There, we get the worst news and a parent’s worst nightmare continues.

September 20th, 2022

We’re now in the ER…it’s late. Alice hasn’t moved. She hasn’t spoken a word. She’s attached to oxygen. Nurses and the doctor are in and out of the room while Amanda and I are in front of the bed just waiting for anything good or positive to happen.. the doctor comes in and says it’s time for a CT scan, just to make sure and rule out anything that could be wrong in her brain…

Results come back, the doctor, with the most unpleasant and unprofessional people skills says, “well…it’s not the best news. But it’s treatable…” he shows us the results and says they found a large brain mass in the front of her brain. We were shocked. We were confused. We just couldn’t believe it… not our baby girl. Not our Alice Josi. This has to be some cruel prank… it wasn’t. It was very real and happening fast. In a matter of what seemed like seconds, Alice’s levels then begin to increasingly spike rising higher and higher and very fast. Amanda and I are crying and we are screaming and begging the nurses to help her… “Save her please… please!!” They used the AED to get her heart back to normal… the way her little body jumped after the first shock is forever stained in my head. I can’t erase it. After hours and hours of monitoring her levels and what we’re hoping is progress, we’re then told that ER cannot give her the care she needs. It’s time for her to be taken to the closest children’s hospital in Palo Alto, CA for her to get the absolute care she needs during this time. Okay. Let’s do it. 

September 21st, 2022

Lucille Packford Children’s Hospital at Stanford University. Palo Alto, California. Alice was flown by helicopter, still unconscious, within an hour while Amanda, august, and myself are driving 3 hours just to see our girl again. And what we’re hoping is an awake, conscious, and “normal” Alice. The procedure was complicated. We knew the chances. We didn’t care. We wanted her back. This family sticks together. We have each others backs. The phone call that changed everything happened the moment we arrived in Palo Alto. The doctor that did the surgery for Alice calls me and we’re 20 minutes away from the hospital. “Mr. Bernal, where are you? We need to speak in person.” I tell him we’re almost there. “Okay, we will talk when you get here.” Amanda and I are now officially worried sick to our stomachs.. we arrived finally and are greeted by a social worker that works for the hospital. Hmmm…why do we need a social worker? Strange.. she escorts us to see Alice. Well, this time, Alice isn’t looking much like Alice right now. Her body is wrapped in warmers, she’s breathing through tubes and attached to bags and monitors and in that moment, the feeling was there… that feeling of hopelessness is starting to present itself. The doctor then comes and speaks to us, privately, my son is talking and playing with a team of social workers now. We’re done with the suspense, the cryptic comments, the unrelenting feeling of doubt. “Just tell us is she gonna be okay? Is she gonna survive?” The doctor finally says with pain and regret in his eyes… “I’m sorry…no.” 

In that moment, our world stood still. Our family had broken. Cries of pain begin to leave us. Or sense of “normal” was gone. Our baby girl, our Alice Josi, our little rockstar, our superstar in the making, her time with us is coming to an end. No…this just can’t be all the time we have with her. Please, it just can’t be… she’s only 8 years old. Please don’t take her from us… she still has things to do here on earth…

September 22nd, 2022

Now here we are still in the hospital with our Alice. Family has made it within days and nights of driving and flights. Everybody is tired. Everybody is hurting. We’re in shock. Alice for the time being, she’s still with us. All of us. The people who loved her the most. No more bullies. No more fake friends. No more people who never chose you first. Just the people who love you. We got you, baby. We’re here for you. Her favorite music played non stop next to her bed. Her favorite movies was playing on the tv while she was fast asleep. This hospital, even though we’re running on little time and energy, the staff gave her everything. Complete strangers just doing their job, gave her everything with the most genuine care. For those few moments we all had together, we made the last living memories we could make. It was almost time to set our little girl free… our last moments together, me, Amanda, and Alice together, amanda and I each got to pick one more song to lay in the bed with her and sing to her. We did that. We laid in bed with her as they begin to take her life support off… the sound of her last few breaths haunt me still to this day. Her heart was racing until finally her strong, caring, loving, and kind heart finally rested. Our Alice was finally free. Free from a world that wasn’t ready to see what she could do and what she was going to change. Setting her free was the hardest thing I’ve ever had to do and I’m haunted by it.

November 22nd, 2022

Alice. It’s been two months. Two months without you is like living in my own personal hell. I try. I pretend. I distract myself often away from feeling sad. But the truth is, I’m not okay.. music helps. Family and friends help. But it doesn’t bring you back. Days and nights are long and I am just counting down seconds hoping to see you again. The universe is cruel to take you away from us. Something tells me it was a mistake to take you so soon. But I’m hoping one day I’ll think the opposite of how I’m feeling now. You are so loved by everybody even new people who never met you before.. I wish you could see it. Your baby brother is almost here and I wish you could meet him and hold him. Being your father taught me lessons that no teacher could ever teach me. I learned from your mom. I learned from the tears, the cuts, the bruises, the mean kids, and also the laughs, the hugs, the love, and the moments we shared together. It’s not the same coming home from work and not getting a hug from you. It’s not the same going in your room and not waking you up to get ready for school. Nothing will ever be the same. 

Her life ended on September 22nd, 2022. But her story will continue to be shared and her life celebrated for as long as I’m alive and her family and friends. For any parent who has ever lost a young child to cancer, brain tumors, etc. I hear you. I see you. I hurt with you. You’re not alone. I’m not alone. Brain masses and tumors are something medical professionals need to be more serious about. More research needs to be done. More conversations need to be made. More children need to be saved. My daughter was wrongfully taken by a brain tumor we could not see coming. There was no time to prep for. When we caught it, it was too late. She didn’t have a chance and that’s the worst part. She didn’t get the chance to grow up. It’s haunting. It’s painful. I hope my daughters name and her story reaches out to more people and spreads awareness of the severity of frequent migraines and how much our children need us. Fight for them. Teach them. Love them. Hug them. Accept them. Time is precious…