Jo Crossley Fights Rare Sarcoma

Thank you for considering support for Cecilia "Jo" Crossley’s cancer care and treatment and the efforts of her family to stay by her side until she beats it once and for all! Please help us spread the word about this extremely rare condition to help others.

Cecilia Crossley, known as “Jo” to her many friends and former clients, raised three children as a single mother in Merritt Island while building up a client base as a successful hair stylist and beauty school educator. The Cocoa resident is also known as a second mother to countless other children she hosted in her Space Coast home over the decades. 

Now she and her family need a little help from their many friends as she battles a very rare type of cancer. 

Accompanied by her daughter, Titusville resident Cassie Bacon, Jo has spent the past two years facing down Malignant Stage IV Soft Tissue Giant Cell Tumor Sarcoma with the same strength of character she has tackled every other challenge in her life. 

Raised on her aunt’s farm in North Carolina after spending a year in an orphanage, Jo moved to Merritt Island in the early 1960’s after the death of her first child when a freak lightening strike hit them both. She attended beauty college and went on to become an instructor at Romar Beauty Academy on Merritt Island. She traveled to beauty schools to teach and introduce "clipper cuts.” After a short stint in NY and NC, she and her family returned to Merritt Island in 1981 where she was a full time mother until a divorce sent her back to full-time work. She continued her successful beauty career until retirement in 2012 from Merritt Island’s Amazing Touch Styling Salon, owned by one of her former students.

Having survived so many moments that might break a lesser woman, Jo has often inspired others to live by faith as she exemplifies Winston Churchill’s famous words,

“If you’re going through Hell, keep going!”

Soft Tissue Giant Cell Tumors are incredibly rare tumors that develop when benign (noncancerous) cells group together to form a large mass. The condition is known as the soft tissue tumor equivalent of Giant Cell Tumor of Bone by medical professionals. Though even more uncommon, the concern with giant cell tumors is that they can spread to other areas of the body and become cancerous tumors, as has happened with Jo. 

The exact cause of formation is unknown, there are no known risk factors or preventative measures, and tumors are thought to occur spontaneously.

Aided by her children, Titusville residents Cassie Bacon and Matt Crossley, and Geoff Crossley of New York, Jo has fought this latest battle quietly but ferociously. 

“Her diagnosis is so rare that there are only five oncologists in the United States with experience with this type of Sarcoma,” explains Cassie.

"Most oncologists will go their whole career and never see a case like hers.”


Hearing that, Jo just laughed and in typical fashion said, "Leave it to me to be different!”

But, Jo’s cancer is not simply “different.”

During her years of treatment at the highly respected Moffitt Cancer Center in Tampa Bay, Jo was the only patient with the rare condition. 

It all started when Jo noticed a lump back in 2015 and was sent to an orthopedic surgeon. She opted for Moffitt since it was possibly cancer, but insurance denied her choice. Cassie filed an immediate appeal and got her mother in for the consult that November. By December, she was having her first tumor removed and received a benign biopsy result. 

Over the next year, Jo travelled back and forth to Tampa for follow ups and scans. Lesions were found in both lungs at her first three month checkup and multiplied at each one following.

In September of 2016, she was diagnosed with Stage 4 Giant Cell Tumor of Soft Tissue Sarcoma with metastases to the lungs. 

“Most patients with GCT have GCT of the bone,” explains Cassie. “Even GCT of the bone is rare and only one in a million have it. GCT of Soft Tissue is even more rare and there is only a 1-3% chance that it will ever metastasize and move to the lungs.” 

In December of last year,  scans revealed the primary tumor was growing back in the same spot and lung lesions continued to multiply. Doctors sent Jo’s biopsy results for genomic testing of the cells. When the results came back, the oncologist recommended radical IV chemo but Jo opted for other treatments first. She was given an oral chemotherapy called Ibrance for two- three week cycles in early 2017 but follow up scans in February showed no improvement. 

Always the dutiful daughter and a skilled planner who has worked at United Space Alliance and UCF, Cassie set to the daunting task of researching her mother’s diagnosis. 

“I knew I had to find a specialist with experience in this extremely rare sarcoma,” Cassie explains. “I reached out to people all over the world looking for someone. I talked to specialists in the UK, at UCLA and even in India. I sent her pathology reports to them because they thought there may have been a mistake with the diagnosis since GCT-ST turning malignant is so rare."

"I found out that there are only five Sarcoma Specialists  in the United States for her type of cancer.”

Cassie spent months reaching out to researchers and doctors with expertise, finding names and email addresses listed in published case studies. She contacted everyone she could find. In a miraculous surprise, she found that one of the five specialists was located in Florida: Dr. Jonathan C. Trent, a Medical Oncologist at Sylvester Cancer Center  in Miami.

Jo was able to switch her care to Dr. Trent in February.

Dr. Trent notes that Jo's case is extremely rare, especially with the metastasis to the brain where sarcomas do not generally spread. In addition to taking special care with her treatment, he is also interested in using her treatment as a case study to expand knowledge in the field.  

After months of surgeries, oral chemotherapy, monthly injections and radiation treatments, the painful tumors continued to grow. In August, with the pain increasing and hindering her daily quality of life, Jo agreed to start aggressive chemotherapy IV treatments. 

If left untreated, Jo’s primary tumor will grow so large that it will break her hip as the cancer continues to spread through her body. The many lung nodules are not causing pain issues currently, but there are concerns about new cancer nodules discovered on her brain, in her skull, on her liver and in her abdomen.

Complicating matters further, the doctors at Cape Canaveral Hospital recently found a blood infection and clot while Jo was back in Brevard in between treatments. The exceptional Health First staff at CCH immediately arranged to airlift her back to Miami in consultation with Dr. Trent. Her children managed to beat her to Miami to be there to help her settle in. 

“I have been blessed with great doctors and children taking care of me right now,” says Jo. “I believe strongly in the power of prayer and have been so thankful to have friends and family sending love and prayers through all of this.” 

Having learned how to persevere from their mother, Jo’s children are not giving up nor leaving their mother’s fate only to prayer.

Many of the followers of Cassie’s “Mom’s Prayer Warriors” private Facebook group watched terrified as Jo and her daughter chose to ride out Hurricane Irma from a hospital room in Miami to maintain her treatment schedule. As the staff evacuated and were replaced by an emergency crew, Cassie posted multiple positive messages and Facebook Live videos to allay the fears of friends and family following the journey online. 

“Mom always went without so we could have school clothes or food on the table when times were tough,” says her son, Matt. “She has a huge heart and always taught us to be responsible, work hard and to also be giving to others. She really believes we all must appreciate each day that God gives us.” 

A faithful member of East Coast Christian Center on Merritt Island for many years, Jo has volunteered in the nursery, taught Sunday school and volunteered with  many functions to help the homeless. 

Since retirement in 2012, Jo has also been very active at her home in Westminister Asbury in Cocoa, serving on the board, volunteering to serve lunch, creating and directing plays, playing cards, working at events and even starting a rock painting class.

She has taken that love for life to the hospital in Miami where she has already inspired a social worker to look into starting their own rock painting class!

“She told mom how inspired she is by her,” says Cassie, who with help from her husband Rodney has so far been able to carefully juggle a full time job and finishing up her bachelors degree this spring in addition to being her mother’s primary caretaker. 

Through it all, Jo continues on with characteristic faith and more concern for others than herself. She hopes that by sharing her story, she will inspire more to faith and bring awareness about the rare condition. She believes that God will find a way to help her and her children, who are determined to stay with her as she goes through this health trial. 


Jo’s children are committed to staying by her side for as long as it takes to beat the rare cancer!

“We have met so many wonderful people on this journey but this cancer has worn out its welcome," says Cassie. 

"Sarcomas don't get as much publicity as Breast Cancer and Carcinomas because there are fewer patients, case studies and therefore less funding for research. We would give anything to help bring more light to it to help others down the road.”


Jo’s journey comes with obvious financial strain for her and her children.

Since 2015, she and her daughter have trekked back and forth across the state many times. While all three of Jo's children have chipped in to cover costs, the bills are starting to rack up. Just since transferring to Dr. Trent in February, they have absorbed more than three months of room and board costs related to long hotel stays in an area where rooms start at $140+ per night plus $25 per day for parking. 

"We are so thankful for everyone who has reached out - whether with prayer, love, friendship or now with financial help to make sure we can keep taking care of Mom as long as it takes!”

______________________________________________________
For more information on Malignant Soft Tissue Giant Cell Tumor Sarcoma visit the following links:


https://www.cancer.org/cancer/soft-tissue-sarcoma.html 

https://youtu.be/4BkMUSbEF6U  

http://www.targetedonc.com/case-based-peer-perspectives/soft-tissue-sarcoma/soft-tissue-sarcoma-part1

https://youtu.be/aIdDKl4i6_U



Thank you again for supporting Jo Crossley in her cancer treatment and her family's efforts to stay with her while she beats it once and for all!

Please help us spread the word about the extremely rare Malignant Soft Tissue Giant Cell Tumor Sarcoma
condition to help others seeking support and information.
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Organizer

Cassie Bacon 
Organizer
Titusville, FL
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