Race For Lace, Warrior Amongst Us

To All Who Love Lacey Grace,

We are reaching out to you for your help in support of the family of Lacey Grace during this time grieving, and as they pick up the pieces after Lacey’s passing. We would like to continue the GoFundMe that once helped in seeking medical care for Lacey. Her family’s journey in this experience continues as they recover, work through their heartache, and prepare for Lacey’s Celebration of Life. We ask that you please continue to share her story. We thank you for all the ways that you have supported Lacey and continue to support her family during this time.

Following are two pieces of writing from Lacey’s Mom sharing about Lacey’s passing, along w/Lacey's writing about being reborn:

To All who have been on the journey with Lacey Grace,

Lacey was ushered by angels into a wonderful new adventure. My Mama Bear heart is broken in indescribable ways. We didn't expect it at this time or that it would happen so quickly. She was gone within fleeting seconds, but that swiftness was a gift for her. My words of assurance, my touch, and my face next to hers are what she felt as her human heart let go.

Lacey is both light and fire, battling cancer with bold fierceness. At the same time, she lived a full, colorful, festive, love-filled life. Although she suffered incredibly in her last few weeks, she still was light in dark places. In her own pain, she showered all of us with her sweet love. I also know that she at all times felt fully loved, and fully protected by those that love her.

Lacey did not die from cancer, but from irreversible liver injury. She suffered greatly over the past year in the aftermath of an artery being severed in surgery last Feb 2, 2022. Those effects for Lacey have been incalculable.

We continued to tenaciously search for her cure, a way to heal her liver, and extend her life. Present plans were shrinking tumors and gaining strength for either a living liver donor transplant or multivisceral transplant. She shattered, and we never accepted prognosis after prognosis. No stone unturned, no alternative unexplored and no words unsaid

During a recent hospital stay sunlight poured in the window reaching photos of Lacey on the wall behind the hospital bed. (I strategically place these, so those providing care know who she is) When we saw it, I reminded her “Remember, you draw the light”.

Today, I write sitting in her room, being in the space that I need to be of loving and grieving my baby girl. I continually look up at one of her quotes on her wall; “The best is yet to come”.

You are bright light, my sweet Baby Girl. Keep shining…

Rebirth:

Lacey suffered greatly and endured agony this past year up until her passing. As her liver began to fail, she developed encephalopathy, which for her caused her to regress to being like a child, and then a return to infancy. As a mother, I was caring for my infant daughter all over again, bathing her, dressing her, feeding her, holding her, and lulling her to sleep. Never leaving her unattended because she would wander out of the room just as a wobbly toddler would. As she would wander, I would ask “Where are you going?”. She would reply in one word; “Daddy” or “Daulton” (one of her big brothers), as she would make her way unsteadily toward them.

At times she couldn’t put her words together, and in the last hours, although she was present, she couldn’t talk. I never knew that 22 years ago as I held my newborn baby girl in my arms, that easing her colic, or helping her through a near-death experience from rota virus was sharpening the saw. It was teaching me how to mother her as her liver failed, through her own labor, and as her human heart let go, her rebirth.

My heart pours out onto paper as I read the following piece of her writing, and as I begin to write. Her written words; cathartic, visceral, sacred. It’s as if it’s her soul writing, knowing her higher purpose, perhaps speaking of her own physical death and rebirth. At the same time, she is teaching all of us what it is to be reborn in this life and how to fully live. What a gift she has given us in her writing. And I hear her now: “Write Mama, write.”

“The process of rebirth is kind of like living in our house as it’s being remodeled.

It can be messy, uncertain, and emotional.

And sometimes you'll wonder if the walls of your skin will be able to hold you together

as seemingly endless cycles of life and death circulate within the cells of your being.

Please be gentle and kind to yourself in this metamorphosis.

It's ok to slip into a womb of solitude as wings are being stitched into your spine.

Your soul is fluent in motion. Listen to it.

You have everything you could ever need within you.

Surround yourself with people and places that strengthen your evolution.

You are being reborn”

Lacey Grace (June 2019)

September 2022

Lacey continues to be a relentless now 7yr fighter with a tenacious warrior spirit. Please come alongside in supporting her in this battleground of relentless love. She continues to need the help of all her supporters. While we share some of her recent sufferings here, know that she is forging forward and going for cure. No stone unturned. She is a phoenix rising out of fiery ashes taking flight to fully live.

Over seven months since the last surgeries, Lacey is still recovering with an open abdomen and a broken heart. While she is finally gaining strength after months of frailty, the recovery has been long and agonizing. She's not been able to return to her normal yet, seven months post-surgery. Lacey is fierce, unbroken, and unstoppable. It’s time for her to reclaim her life.

This follows a 3-month stay at a Children’s Hospital, 3,000 miles from home in California. What was expected to be her 5th debulking surgery became surgeries 5,6,7,8,9 in 12 days when the artery that supplies blood flow to the liver was compromised. This took her through a rocky and uncertain passage. She experienced 2 wks in PICU (Pediatric ICU) and two rounds of delirium following anesthesia (3 dys ea). A tear in her stomach (fistula) developed due to partial gastrectomy to save her stomach caused by the lack of blood flow during surgery. The surgeon left her abdomen open w/mesh and a wound vac attached. Starting new chemotherapy has been delayed due to the time needed for wound healing.

Presently, her enlarged liver causes pressure on her stomach and requires a biliary drain and cholangiogram every 4 wks. She has hyper-level ammonia that began following the surgery she’s treated for daily. She was recently admitted to the hospital as ammonia levels began to creep into the 200s, slurred speech, unsteady gait, tremors, confusion and unable to say the alphabet. In addition, there is hepatic artery thrombosis (blood clots). She’s been on IV Nutrition and IV fluids for seven months due to the stomach tear. There have been repeated visits to the hospital and the infusion center for blood transfusions, broad-spectrum IV antibiotics to cover infection, and more endoscopy procedures to repair the fistula. She’s been unable to start new chemotherapy due to the risk of interrupting the healing process with her abdomen and stomach. There is some tumor progression, and she needs our help continuing her relentless fight.

We ask for your continued help with the exorbitant, ongoing expenses incurred by the family. In addition, lacey needs continued alternative and traditional treatments as her fight against Fibrolamellar Hepatocellular Carcinoma is a marathon, and she continues another harrowing leg of the race.

Whether it's sharing her story or contributing, we are more than grateful for all those, in whatever capacity, who come alongside as Lacey goes for cure!

 Back Story:

Lacey’s cancer journey began when she was 15 years old, diagnosed with Fibrolamellar Hepatocellular Carcinoma (FLC, FLHCC), an extremely rare form of adolescent cancer affecting only 1 in 5 million people. To say she is 1 in a million is an understatement. Due to the rareness of her cancer, there is no standard of care. Lacey travels to medical teams that are knowledgeable of FLC. This requires ongoing out of state and out of country travel, with some medical care not covered by insurance; one treatment protocol requiring 4 – 8 visits out of the country. There is also continual testing needed to determine what treatments are effective for her. Due to the rarity of FLC, Lacey must continue to be a pioneer and explore more options in the fight for her life. 

 

Lacey is running an ultra-marathon to beat this cancer! She has already run many miles with unwavering grace and grit. She’s endured 4 major abdominal surgeries, including 3 liver resections. Each surgery is followed by continual chemotherapy daily, as she’s done since the onset of her disease in 2015. She’s had 6 years of treatments that have varied from a 24-hour chemo pump attached to a port in her chest, injections 4x a week, oral chemotherapies, 6-hour infusions and/or ongoing self-injections. Pauses in treatment are for surgeries, ablations, hospitalizations, or toxic side effects from treatments.

 

Although Lacey has been tirelessly fighting for her life for the past 6 years, if you didn’t know that she was suffering, you would’ve never guessed it. She balances her life as if she has superpowers. She carried a full-time job throughout high school and now as a manager for a surf-skate shop. She also remains academically driven as a full-time college student. Through it all, she still makes time for friends and family. Her bravery is admirable; upon her diagnosis, she didn’t wallow and ask, “Why me?” Instead, she said, “Try me.”

 

Lacey radiates happiness, ushering sunshine into the lives of those she loves and touching anyone she meets with a ray of positivity. Her outlook on life is never wavering, reaching beyond being simply inspirational to those who know and love her, and challenging us to adopt a similar mindset of fearless love and abundance. Her laugh is contagious, and hanging out with her is a spontaneous, exciting adventure. Lacey’s originality is evident in the uplifting artwork that she creates; even her social media presence is geared toward encouraging others. She is a beacon of hope, a spreader of joy. Her strength truly makes her an absolute warrior, while she continues to live a wildly magnificent life.

 

Lacey has many miles to go in the fight for her life. At times the finish line seems to evade her, and fear is just beneath the surface. Yet make no mistake, she will conquer this ultra-marathon, going for cure and cross the finish line victorious! But just like any marathon course has aid stations and supporters at every mile, Lacey needs our aid and support as well! Lacey is fierce, unbroken, and unstoppable. She is the relentless Warrior Amongst Us in the fight of her life.

 

We ask for your prayers, honor your kindness, and thank you from the bottom of our hearts for your donations! Please feel free to share her story; we need all the support possible!