Jules Laurita-Smith

$105,069 of $250,000 goal

Raised by 917 people in 16 months
Prior to October 21, 2017, Jules was enjoying the happiest time in her life - on track to graduate high school a semester early (still did), enjoying a budding career as a singer/songwriter and singing and playing bass in a band (still is), working as a barista (sadly, not), accepted to college for fall of 2018, and generally loving life and being a healthy, positive, blossoming, joyful 17, now 18 year old.

A massive series of seizures landed her in the ER, and a suspicious MRI prompted transport to Children’s Hospital in Denver. Many more tests, and a subsequent biopsy revealed a diagnosis of a cancerous glioma brain tumor, mostly in her right frontal lobe. At first deemed inoperable, many second opinions, sent out across the country and even to Europe, suggested otherwise. After a trip to NYC to meet with a specialist, many more tests, consults and an enormous amount of conflicting and varying information and opinions, she was able to get on the schedule of a neurosurgeon in Denver, Dr. Kevin Lillehei, who removed most of the tumor on 12/8. 

She was a “rockstar” going in, during, and after the surgery with amazing courage and a sense of humor throughout. She did so well, she was discharged in three days and was able to begin recovering at home, celebrating her 18th birthday, graduating, and enjoying the holidays, her favorite time of the year. 

Unfortunately, cancerous tumor is still present in areas that could not be touched by surgery. The treatment plan is being formulated with radiation and chemotherapy stretching over the next year.  Outside assistance with nutrition and supplemental therapies and a procedure that will protect her fertility will need to be paid for ‘out-of-pocket’.  In addition, possible inclusion in clinical trials are being explored around the country, none of which will be covered by insurance and can amount to hundreds of thousands of dollars. 

This gofundme page was set up by a dear and supportive friend and the overwhelming support thus far has helped tremendously, though we are now discovering that this is barely the start of what is going to be a very, very long and complicated journey.

So much of what is required to beat this cancer and ensure that Jules blesses the world with her amazing spirit through a full and long life, is unfortunately, NOT covered by insurance, and so we humbly and so greatly appreciate any and all support so we can give her the best opportunity to fight this and for us to be able to focus on what is most important- Jules and her full recovery.

Please share this link.  

With deepest gratitude.

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A week ago today we found out that the tumor in beautiful Julietta’s brain has progressed despite all efforts

We are heartbroken. Shattered.

Her stunning, intelligent, witty, bright, creative, loving, compassionate, kind, strong, sensitive, gentle, fierce, and hopeful self has been met with the biggest challenge to date.

There are no words. Only deep, deep sadness. This unexpected turn is shockingly devastating.

We appreciate your loving support as we stay present to love and care for her.
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After a solid month in the hospital, Julietta was able to return home last night. She appreciated the beautiful sunset that ushered her back to us and with the help of dear friends, her brother and beloved grandmother, her wobbly legs made it up the many steps to our upstairs room that has the best view. We watched the day fade away, and enjoyed a “picnic” in bed with a delicious dinner that was lovingly made for us.

Organizing home care is in the works. Her needs include skilled nursing, PT, OT, SLP. We are now in a very different place that includes new challenges and navigation on all levels.

Her voice is soft and loving. She breathes consistently beside me as I stroke her beautiful dark hair. Her hair that surprisingly grew back after losing it due to the dozens of radiation treatments that she endured nearly a year ago in an attempt to kill the cancer.

The cancer.

It’s unbelievable that the cancer has taken so much out of her, out of all of us...but, her. My beautiful nineteen year old daughter losing so much and fighting the cancer so, so hard. I feel confused, devastated, sad, angry, defeated. This disease is evasive to the best minds out there working towards a cure. It is a mystery, truly - an alien form of rapid insatiable hunger. I don’t understand where it came from, how it started and of course, I am terrified of where it leads.

My challenge is to stay present while putting a new infrastructure in place to give my girl the best quality of life at this juncture.

She has said all along that she wants to get through this so that she can help others and she’d like to have a big event for those who have helped us.

Julietta continues to embrace the amazing and generous spirit that she is throughout this unfortunate situation. I am so proud to be her mother.

As always, your support, love, and communication is so deeply valuable.
Thank you.
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Approaching sixteen months. Yesterday a dear friend took me to the hospital where Julietta has been for theee weeks now and stayed with me for many hours. It has been a difficult for me to drive, sleep, and yes, even breathe. I’m grateful to those who drive me to the hospital these days.

The anxiety I have is so deeply debilitating. I cry and try to hide my grief from my daughter but she knows about my sadness and she says that she feels it too. We talk about it all. She doesn’t want to be like this, nobody does.

Today or tomorrow we get the final results from Friday’s MRI. The preliminary read came in showing a lot of change and of course we hope that it means it’s the inflammation that is working - killing the cancer and not the opposite.

This FCM, (f*€#ing caNcer maze) is so brutal. You just don’t know what a war zone it is till you’re in it. How could you? I didn’t. When the unimaginable shows up in this way, you are instantly on another planet. It’s so surreal.

Jules is very slow with rehab & so discouraged. I hope that we can bring her home soon and have the appropriate team to be able to help her with the therapies she is receiving in the hospital.

I appreciate those of you that are sticking with us in all of the myriad of ways you creatively show up. Thank you.

I am trying to be positive but it is truly a challenge when I see her so compromised and questioniwhat we have done in regards to this trial. I know that is not helpful but I’m stuck in this insane loop.

Breathing is such a challenge for me. Why am I holding my breath? I know better. Why does it hurt so much to attempt to calm myself down. The only thing I feel is fear and grief and when I slow down it becomes even more present, more painful. Interesting. I know this. I’ve practiced yoga seriously. I have wanted to collapse and roll myself up into a ball when doing backbends or any pose that opens my heart. I know that staying in the pose long enough for some sort of release or transformation take me place can be helpful. But this is different. I feel that I cannot fully go into the places a deep calm, slow breath could take me. It’s just too much to feel. Too much pain - and believe me, my tolerance for pain is pretty high, even before all of this.

So I write. I write to all of you that are bearing witness to the incredible misfortune that my daughter is facing. The deep, deep sadness that we as a family now carry. The questions, a brother, a son, a dear fourteen year old asks when I arrive home late each night.

When the nurse came to check vitals last night, we all took turns listening to Julietta’s heart. It was slow. When Jules asked to listen, she said, “is it still there?” - it was so faint.

I wake up ridiculously early no matter how late I go to bed. I hear the train whistle in the darkness. I hear my dog take deep, slow breaths. I try to follow his lead. I anticipate another day.
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It’s different now. Things have taken a turn in a sickening, real way. Three weeks ago today, Jules had an MRI at Duke. We were told that things were stable. It didn’t appear that the infusion was doing much yet. Then two days later after she returned home, we noticed some left sided weakness. There has been concern of possible recurrence near the resection site on the right, the very area that Duke saw that made her eligible for their trial.

Because of that weakness, she was admitted. Unfortunately hours after, she had two grand mal seizures and stopped breathing for 30 seconds. She was intubated and stayed in ICU for several days. Shortly after being transferred out of ICU and into her own room, a nurse that was assisting her walking to the bathroom, got distracted and let go of Julietta and consequently, Jules fell to the ground and hit her head.

Last Friday, a week ago now, we went over her last two MRI’s, the one from Duke and the latest one from Children’s. We seemed to have positive news that the inflammatory response might be working and that she was beginning to show improvement with PT/OT. But on Sunday things with Jules turned again. She became uncommonly tired, her progress with regaining her strength began to wane and has shown a decline all week. She feels like a whisper of herself right now.

Alongside of this, Niko became real sick so I took time to care for him and since he was contagious, I couldn’t see Julietta. The change in that time from late Friday night to Tuesday when I saw her again, was heartbreaking. How could this be? Well, it’s brain cancer, Dona. That’s how.

This reality hit me differently than it has in the past. We were always focused on active engagement: taking Jules to radiation last year this time, thirty-two times. Chemo. Two kinds. Vomiting, losing hair, losing weight. Supplements, dozens of them. A naturopath oncologist, acupuncture, reiki, meditation, prayer, qi gong, blessings from priests, ketogenic diet, trauma therapy, MRI’s, countless lab draws, visits to UCLA, countless books, articles, sharing research, connecting with other cancer families, going to Duke twice, enrolling in a clinical trial...

Screech. Halt. Whiplash. Now this. Hospital bed. Bedside commode. Can’t walk. Weak. A whisper. No sleep. Meals from friends and those we don’t know. Financial support from friends and friends of friends because they share our story and their shares touch others that care. Visitors that stay the night, so that a tiny break can be offered. Tears. Fear. Deep knotted sickness. And, an MRI late in the day today to see if there are explanations.

Before the Tsunami as I call it (don’t care for the word diagnosis), I was working with immigrants, refugees, and DACA, sharing their stories with their words & my imagery. This project, has gained momentum and is currently at the Museum of Boulder with a reception this evening. Julietta told me last night that I must go tonight. She insists. So while she’s having her zillionth MRI, I’ll be at the museum with my project.

Ironically the the project explores those “living in the shadows” and the importantance of sharing personal stories. Here I am. In the shadows, sharing every parent’s worse nightmare. Sharing my daughter’s story, mine, my family’s. In the darkness. No sleep. The world of cancer. Childhood cancer. Brain cancer. The worst kind. The darkest shadow.

Thank you all who are helping us. Thank you for sharing this link to help us - help us. Those of you that are continually there day after day, week after week, month after month, we deeply appreciate you...we are so touched by your generosity in all ways.

Jules said recently that she’d like to have a party for all who have been there for us...I’d like that to happen too. Love you all for being in our world ❣️

The Silhouette Project reception at the Museum Of Boulder

Friday February 8th

6:00-8:00 pm

Free + Open to the public!

The Silhouette Project was started in October of 2016 as a way to help give a voice to segments of our population and our local and national community that is too often relegated to the shadows, becoming faceless and, more and more, having value only as statistics used in political rhetoric.

Using silhouettes and depicting a person as an anonymous, faceless form, while still incorporating elements of their character leaves more to the imagination of the observer. When coupled with their actual story and words, this encourages a deep interaction between the subject and the observer, such that both fill in and color the silhouetted image with their own subjective reality.

“When you go to another place to live, you are changed forever”
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$105,069 of $250,000 goal

Raised by 917 people in 16 months
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