You could say Tia Stokes was born April 24, 2020 — the day the Utah mom of five got an acute leukemia diagnosis and was dropped off alone at a Salt Lake City hospital in the middle of the coronavirus pandemic.
Or maybe she was really born the day she left that hospital after those first 30 days in isolation to learn that her own mother had died suddenly. Or was it when she beat back the coronavirus with a compromised immune system? Maybe it happened when she got a bone marrow transplant or when she looked in the mirror and didn’t recognize that moon-shaped face.
What is clear is that after TikToking her life daily for the past 580 (as of Thanksgiving) days, Stokes is the same dancer, mom, influencer and upbeat optimist she always has been — and also a completely new person.
At the center of it all is her body.
Battered by mouth sores, fevers, chills, mysterious aches, hives, hair loss, loss of mobility, sight, hearing and speaking, she also has faced depression, rocketing emotions, sadness, yearning and anxiety.
When Stokes began to heal through the use of steroids, which packed on weight, she was bombarded with cruel online comments like this one: “Tia, you should just die.”
And, to be honest, there were days when she felt like giving up.
But she’s still here, sharing her dancing videos online every day.
“With social media, we get so distracted by images,” she says in an interview. “We forget what’s important is not the way our bodies look but what they are doing for us.”
(Tia Stokes) Tia performing before her cancer diagnosis.
The journey begins
Jan. 7, 2020
Aloha. I’m Tia Bee and GRATITUDE IS MY JAM. I’m Hawaiian, Samoan, German and proud of it. Gum chewer (as you can see). I love Jesus & not afraid to scream it! Wifey, mom to 4 BOYS, until I became a GIRL MOM too, 4 Months ago to my little Rosie. … I donated my eggs to my good friend. So 2 little girls that are 1/2 me but aren’t mine, cool right?! Disney dreamer fanatic. I own 2 dance studios with my BFF, one in St. George and recently moved to Orem Utah where I opened our 2nd studio where we “DANCE FOR A CAUSE,” shaking our booties to raise $ for families in need since 2007! YEP! It’s pretty rad. HOTMESS FITNESS is my THANG.
During the nine months that Stokes was pregnant with her youngest child — and only daughter — the mother had a constant cough, nausea and aches but shrugged them off as the price of pregnancy.
After the baby arrived in August 2019, the symptoms stayed and by March had expanded to include a sore throat, night sweats and bruising.
She was treated with antibiotics for pneumonia time after time, but nothing worked. When COVID-19 struck the world in 2020, Stokes and her husband, Andy, along with their doctor, wondered if that could be the culprit.
On April 22, 2020, Stokes got a blood test. She did not have the virus, the doctor reported days later, but something much worse: leukemia — cancer of the blood.
In the hospital, the chemo and cancer left the dancer shaky. Still, she began to document her experience in daily 15-minute videos on Instagram.
(Tia Stokes) Tia began to document her experience with leukemia in daily 15-minute videos on Instagram.
Even during the brutal first week of treatment, with sores and bruises up and down her body, she was able to do at least one short dance. Sometimes she could manage only a slight dangling of her head and lifting her arms up and down.
Eventually, her daily videos attracted some 612,000 followers, many of whom wrote to her, danced with her and prayed with her.
The chemo ‘was killing me’
April 30, 2020
IF I’M GOING TO HAVE CANCER, IT’S GONNA BE DANCING FUN CANCER.
I may not have been able to choose the music my life is playing but you better believe I get to choose how I dance to it!!!
May 12
“True beauty will never be about what’s on the outside, only the inside. That’s what shines through.” Never forget it.
Say it with me.....because I need you too.
“I AM BEAUTIFUL”
“I AM ENOUGH”
“I AM AMAZING”
“I LOVE MY BODY”
“MY BODY IS AMAZING”
After that first monthlong stay in the hospital, the plan was for Stokes to have six high-dose chemotherapy treatments.
So she went home for a week, and then returned for the second round and another weeklong stay.
The next two weeks at home, however, were physically devastating. Chemo left her unable to walk, impaired her speech and fine motor skills.
“My body couldn’t handle the chemo; it was killing me,” she recalls. “The doctors canceled the remaining treatments and said I needed a bone marrow transplant instead.”
They told her to go home and try to get as healthy as possible to prepare for the transplant — without the aid of an immune system.
Alone again, naturally
(Tia Stokes) In September, Stokes went to the hospital for a blood transfusion but had a troubling cough. The nurse wondered whether she might have the coronavirus. She did.
July 8
Today I cried.
For the first time I looked in the mirror and I saw sick.
I saw sunken in dark eyeballs. Discolored skin. Steroid puffiness. Bald fuzzy hair.
And I cried to Andy.
Call me crazy but it’s the first time I saw
Cancer. I saw my disease.
He held my hand and told me I was beautiful and in that moment I realized that yes I am sick I do have cancer
And it’s ok to not be ok.
I’m not ungrateful for this opportunity, but it’s ok to feel it.
Yes I look different than before but I realized that
Now I am as I AM, WITH CANCER.
In September, Stokes went to the hospital for a blood transfusion but had a troubling cough. The nurse wondered whether she might have the dreaded coronavirus.
And, indeed, she did.
“They admitted me back that day,” she says, and she spent yet another month in isolation, battling pneumonia and kidney failure.
Confined to her room. Too weak to walk. No visitors. No chance to see the light or feel fresh air on her face.
Not a magic bullet
Nov 16
When I was younger I was bullied for my mustache...
I was bullied for being brown and ashy.
I was bullied for having a unibrow.
I was called cha cha cha chia pet because of my name and I was hairy.
I remember wishing I was a lighter skin color so I could fit in. I remember hurting and those feelings were very real and sad.
Fast forward — I have grown, learned and today I post 5 pics of myself and I could care less. During my cancer journey I have been stripped down to literally nothing...no hair no pride nothing.
THIS IS ME...cancer is not me.
(Tia Stokes) Tia in the hospital. She had to fend off the coronavirus, pneumonia and kidney failure in order to receive a bone marrow transplant to help treat her leukemia.
The wait for a bone marrow transplant was excruciating.
Her body had so much work to clear itself of all infections to be able to survive the invasion of new immune cells.
“I had to learn so much patience,” she says.
Typically, siblings are the best matched bone marrow donors at about 25%. After the doctors tested Stokes’ brothers and sisters, they found that one brother was a 100% match.
“It was a miracle,” she says.
On Nov. 28, she was readmitted to the hospital for a low dose of chemo to get her ready for the transplant on Dec. 2. She remained in the hospital for three weeks, leaving just in time for Christmas with her husband and children in Orem.
But it was no miraculous cure.
Four months after the transplant, the dancer was hit with “graft versus host disease,” a fairly common side effect of the procedure.
“I wasn’t able to move my shoulders or my legs,” she says. “My skin felt like it was going to rip. I had mouth sores and stomach issues.”
Such effects can be the unfortunate outcome of these transplants, explains Suzanne Milne, a nurse practitioner for Intermountain Healthcare, who worked on the bone marrow unit when Stokes was there.
“When we transplant bone marrow, we obliterate the patient’s immune system,” she says. “The patient grows an entirely new one.
When that donor immune system “wakes up in this foreign body, it freaks out and attacks. It wanted to kill her,” Milne says. “That’s what immune systems are born to do.”
Doctors have to suppress that new immune system until it feels at home in the new body, she says. “It wipes out all their built-up immunity from any vaccine.”
It’s “like a birthday,” Milne says, “like starting over.’
The new bone marrow affected Stokes’ eyes, lungs, skin, everything.
“We put her on steroids to save her life,” the nurse practitioner says. “And it worked.”
But with its success came criticism.
(Tia Stokes) "I'm trying to push through and have a positive attitude, but my condition still is pretty serious."
Body image wars
Sept. 9, 2021
People just keep telling you that ‘you’re bigger,” but you are just happy to have NO CANCER CELLS and love the extra curves.
You are more than a size!!! You are more than a number!! Life is meant to be enjoyed!!
Weight will come and go...bodies change shapes but true beauty shines from within!!! Don’t ever forget it!!
Love your curves, love your no curves JUST LOVE THAT BODY THE LORD BLESSED you with!!!
From the beginning of her cancer journey, Stokes shared photos of her frail self, with a bald head and spots sprinkled over her body, she says, and “people flocked to me.”
The number of likes and positive comments on her account skyrocketed. The ranks of her followers swelled to the hundreds of thousands.
On Oct. 20, 2020, a friend posted the hashtag, #Red for Tia Day, she says, and “people from all over the world were posting with it, wrote skits and songs on TikTok and it reached 111 million people.”
After the transplant and the graft versus host disease six months later, however, the lifesaving steroids she was taking caused her to pile on pounds. She lost thousands of online followers and endured an onslaught of scornful insults. She got lots of direct messages asking her why she had put on so much weight.
“They went from fully supporting me to picking me apart and saying mean things about my thighs,” she says. “It’s hard when your body, your face and everything changes completely.”
But, she insists, “I am still the same person.”
Lexie Kite, a Utah-based body image expert and co-author with her twin sister, Lindsay, of “More Than a Body: Your Body Is an Instrument, Not an Ornament,” is not surprised by the online hecklers.
“When Tia’s body changed and her social engagement went down, it says a lot about what she was valued for in the first place,” Lexie Kite says. “When she stopped conforming to these incredibly narrow beauty ideals, [they thought] she didn’t deserve that validation any more.”
For so many in the culture and especially on social media, “thinness is paramount,” she says. “Somehow we believe that thinness equals health, but that is not true.”
Health is determined “internally,” Kite says, “you can’t tell a woman’s health by looking at her.”
The pressure to be thin, even if it is not healthy, has produced “high rates of eating disorders,” she says, “and a nation full of women who are self-loathing because they cannot attain their goals unless their aesthetic matches the beauty ideal.”
Stokes does have an opportunity to help educate people, Kite says, “to let them know she too is more than a body — she is alive and resilient.”
That is precisely what the l is trying to do.
The new Tia
December 2020
The last 13 years I’ve spent my life dancing and dedicating every move to people with cancer or other illnesses and NEVER in a million years did I think I would be on this end, experiencing what I’ve experienced....I cry thinking of my fight but I also cry thinking of all the love I’ve felt through it all. I cry thinking of the struggles and the hell I’ve been through but to remain positive and keep smiling through it all. I cry thinking of all the dance that’s given me hope and relationship and the will to keep on living.
I cry thinking of all the prayers that I’ve felt from people all over the world that’s built my faith.......
THANK YOU CANCER FOR TEACHING ME THINGS I WOULD HAVE NEVER LEARNED WITHOUT YOU.
Grateful for my body that has fought with and for me not just the last 7 months but 34 years.
Eating disorders.
Mental illness.
5 pregnancies.
1 miscarriage.
Donating my eggs.
Cancer.
Now transplant.
THANK YOU BODY....You’re amazing🤍
HAVE YOU THANKED YOUR BODY TODAY???
(Tia Stokes) Tia with her daughter, Rosie.
When someone gets cancer, others rally around them, Stokes says. “Cancer is such a scary and big thing, it brings people together.”
Once you are on the healing process, living your life and you’re still sharing, she says, “people don’t support as strongly as they did before. They are not as invested in the ongoing struggle.”
Everybody has a “‘cancer’ — whether it be a tumor or mental health or self-image issue — that they deal with,” she says. “I wish we could treat them all as we do cancer patients.”
Stokes knows her body’s journey is far from over.
“I’m still fighting,” she says with a catch in her voice. “I’m trying to push through and have a positive attitude, but my condition still is pretty serious.”
She doesn’t allow her pages to be depressing, but she wants followers to know that “choosing happy is the harder choice to make.”
The plan is to “be alive,” Stokes says, “not to go back to where I was.”
She has grown so much as a person, learned compassion and strengthened her relationship with God, she says. “I might not look better to other people, but I am a better person.”
Maybe that’s what it means to be born again.
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