Support Auli'i's Fight for Health and Stability

Aloha to all this message reaches— I thank you for your time and energy during this challenging time.

For those who want the short version:

My mom needs support.

The past few years of fighting unresolved chronic health issues, a weakened immune system and routine bacterial infections my mom remains in a debilitating state of exhaustion, unable to work and not given clearance to return to work. Fainting, irregular heart functions, signs of kidney trouble, critically low electrolytes and more— with no definitive diagnosis or plan of recovery yet.

She cannot work due to chronic fainting, weakness and vomiting (this is only a few of many severe symptoms she's experiencing daily.)

As of a couple days ago, my mom completed a round of Vancomycin, and incredibly strong antibiotic, in an attempt to rid her of this infection. Not only has this failed, (as she found out yesterday she is still infected with C. diff.) she also learned she tested positive for a second toxin variant of the infection. This is dangerous. Her doctor has given a prescription for another antibiotic— but her pharmacy called and let her know they'd be unable to fill this and it was not reasonable as the antibiotic cost over $7,000.00. This is incredibly frustrating, as it seems my moms body did not respond to the antibiotic that her insurance covered.

For those of you still reading, wanting to learn more:

My name is Noho Monarch. I am my moms third born. I have two older siblings, and two younger siblings.

I'm putting this into the universe, because right now feels like a scary time filled with uncertainty, frustration and worry.

If you haven't met my mom, Auli'i, she's a gift to anyone who comes across her. Her light, her kindness and her heart cannot be mistaken.

She is a daughter, a nurse, a single mother of 5, a tutu (Hawaiian word for grandma) to 4, and a survivor of severe domestic abuse. She is a pillar of empathy, unconditional love, acceptance, light and joy. She loves and cares deeply and has devoted her life to giving.

Despite all of the incredible challenges she's endured, she remains unequivocally good— unlike any other. For all the reasons she could be angry at the world, she spreads love instead. For the unimaginable unfairness that's unfolded before her, she'd still make sure everyones plate has something on it before her own. She's relentlessly giving. She gives her heart to her patients— to those who cannot give to themselves. She's worked long and hard hours for 30 years, to give everything she possibly can to her children and grandchildren.

She is unconditionally accepting and loving to those near her.

My mom has so much joy, light and love to continue sharing with the world— but right now she's being drained of this.

In 2021, my mom checked into the ER, to be admitted for MRSA. This is a bacterial infection which can be very dangerous. Unfortunately, this would become the beginning of many visits to the ER. She overcame the infection and was discharged. We were so thankful she was ok.

Fast forward to today— she's been in the ER at least a dozen times since January of this year (2024).

I'm sure many of you can sympathize, as it seems to be an infuriating inevitability that when dealing with a chronic illness, or serious health problem, it often happens to be the case that you reach more questions than you do answers.

My mom is now dealing with a second bacterial infection; C. diff (Clostridioides difficile). Since January of this year, my moms Potassium levels have routinely been dropping to critically low levels. This has caused my mom to become dizzy, light-headed, lethargic and daily fainting. After an infusion to get her levels back up, there were times she'd feel ok for a month, 3-6 weeks or so. As of now, her condition seems to be worsening. A week after her latest trip to the ER, turned hospital admission for 5 days, she returned home, anticipating a month or so before her routine decline. Instead, she felt her body declining in just a week. Her levels are dropping quicker each time, and to more critical levels.

Recently, when her levels were the lowest they've ever been— I was driving her to the ER. We were stopped at the red light on Broadway Street, headed for Allen Hospital in Waterloo, Iowa. There was a train— so I was waiting. As I was waiting, I look over and my moms body was jerking and twitching, her eyes closed. It looked to be a seizure. I grabbed her hand and was trying to talk to her, but she wasn't conscious, she wasn't responding to me. I was shaking her leg, trying to keep her with me, trying to let her know we were almost there, pleading that she be ok for just a few more minutes. This was terrifying— I felt I was going to lose my mom right there in the car, on our way to the ER. I felt there was no "just a minute" left. I felt in a matter of moments, there could be a million moments to come where I'd regret not having taken her to the ER sooner.

When she arrives at the ER now, they know her— they recognize her and know it's likely a Potassium infusion that's needed. Apart from this, there are no further answers they can provide her. She's had every test, every assessment, multiple procedures to try to find out why this is happening. She sees her primary doctor, gets various lab testing often and still, nobody seems to be digging deep enough into why my moms body seems it cannot sustain itself.

This is potentially causing irreparable damage to my moms heart, kidney, immune system and other vital bodily functions.

I don't want to lose my mom— my siblings and I spend most of our time, most of our days in worry. In frustration.

My mom has fought hard. Harder than anyone deserves to. She has overcome much pain and suffering. She deserves a chance at health and a return to joy. She deserves answers and stability.

My mom has always loved butterflies, Monarch butterflies were her favorite. It's one of my first memories of her that I can visualize in my mind. She had this beautiful vintage book; full of every species of butterfly. From a young age, butterflies have felt like a special kind of magic that my mom and I shared. Each year we'd tell each other "I saw my first Monarch of the year today!". A moment of gratitude for things yet to come.

My mom has always been a butterfly herself. I need help. She needs help. We need help to support my mom in her well-deserved return to her butterfly self. Anything you can do at all, is appreciated. I don't expect to fulfill the full goal, but I can start with what I believe she deserves. She deserves all the help she can get.

My heart aches for my mom, and for all the others in the world who feel close to a situation like this. I don't wish this on my worst enemies.

Mahalo nui loa,

Thank you so much for reading, and for anything you can do to help.