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For Patients
Clear Cell Sarcoma Foundation (formerly Sara's Cure) is an organization dedicated to providing a place for CCS patients and caregivers to come together for sharing and support, while taking an integral step toward better treatments and outcomes. We are a family who cares about the well being of each other. You are not alone.
Warrior Stories
Here is just a glimpse of Clear Cell Sarcoma stories. We hope that you can relate with some of these stories, that you may be touched, encouraged, and understand that you are not alone.
Amarah
~In memory of Amarah~
Amarah Niessa Kendall was diagnosed with Clear Cell Sarcoma in May 2018 at 11 years old. Throughout Amarah’s journey, we fought diligently to find a cure. After a series of treatments, we believed that Amarah was on the road to remission. Unfortunately, the cancer returned, spreading throughout her body. We continued to search for anything that could save her.
Under compassionate care, Amarah received CPI-613 in conjunction with chloroquine, as this was the only case study at the time showing true reduction of Clear Cell Sarcoma. Sadly, it was too late, Amarah received only two doses before she passed on May 7, 2019, at 12 years old.
Amarah was a beautiful soul, full of life and ready to take the world by storm. She was brave, compassionate, passionate, empathetic, and highly intelligent. Amarah could light up a room with her perfect smile and contagious laugh. She kept her smile and positive attitude through every step of her cancer journey. Even on the hardest days, she would find the strength to smile and focus on the positive.
Amarah loved roller skating, making slimes, and drawing. When she put her mind to something, she always gave 150%. Her nickname was “Little Business.” Amarah dreamed of becoming a pediatric oncologist to find a cure for childhood cancer, because she believed no child should have to face it. She would have done just that if she were still here today, our beautiful, perfect Amarah, forever 12. - Rachael Kendall (mom)
Amarah Niessa Kendall was diagnosed with Clear Cell Sarcoma in May 2018 at 11 years old. Throughout Amarah’s journey, we fought diligently to find a cure. After a series of treatments, we believed that Amarah was on the road to remission. Unfortunately, the cancer returned, spreading throughout her body. We continued to search for anything that could save her.
Under compassionate care, Amarah received CPI-613 in conjunction with chloroquine, as this was the only case study at the time showing true reduction of Clear Cell Sarcoma. Sadly, it was too late, Amarah received only two doses before she passed on May 7, 2019, at 12 years old.
Amarah was a beautiful soul, full of life and ready to take the world by storm. She was brave, compassionate, passionate, empathetic, and highly intelligent. Amarah could light up a room with her perfect smile and contagious laugh. She kept her smile and positive attitude through every step of her cancer journey. Even on the hardest days, she would find the strength to smile and focus on the positive.
Amarah loved roller skating, making slimes, and drawing. When she put her mind to something, she always gave 150%. Her nickname was “Little Business.” Amarah dreamed of becoming a pediatric oncologist to find a cure for childhood cancer, because she believed no child should have to face it. She would have done just that if she were still here today, our beautiful, perfect Amarah, forever 12. - Rachael Kendall (mom)
Ann
Starting around December 2022, I began experiencing discomfort around my ankle and thought it was due to a bad sleeping position. About a month later, the discomfort turned into pain, so I decided to make an appointment with a local podiatrist. The podiatrist diagnosed me with tendonitis and gave me a brace to wear daily.
By March 2023, I noticed bruising around my ankle and made another appointment. After ordering imaging, the podiatrist found a mass in my ankle. He reassured me that it was nothing to be concerned about because “it’s very rare for a mass in the ankle to be cancerous.” He explained that the pain I felt was due to the mass pressing on a nerve and suggested surgery to remove it.
After my surgery date was set, I began experiencing systemic symptoms such as fever, unexplained weight loss, and weakness , to the point that I fainted while trying to take a shower. By then, I could no longer walk or put weight on my leg due to the pain. I visited the ER multiple times and repeatedly contacted my podiatrist to understand what was happening. Despite seeing many doctors, no one could explain my symptoms, even though my husband and I insisted they were related to what was going on in my ankle. During this time, a visible lump appeared on my ankle.
Eventually, I tested positive for Epstein–Barr virus, and I felt relieved that a cause for my symptoms had finally been found. Because of my illness, my surgery kept getting delayed ,the podiatrist refused to proceed until my symptoms cleared.
When the surgery finally happened and I woke up, the podiatrist told me that what he found was much worse than expected. He sent the mass for biopsy and left my wound open “for staging purposes.”
On April 27, 2023, I received a call from the podiatrist informing me that I had Clear Cell Sarcoma (CCS). All he could say over the phone was that he was very sorry. I was bedridden, in tremendous pain, and now had to process a cancer diagnosis, all while recovering from surgery with an open wound.
When I met with my first oncologist at a hospital in Chicago, he recited a Google definition of Clear Cell Sarcoma to me and my family. He explained that because my cancer had metastasized from my ankle to my calf, knee, inguinal lymph nodes, and lung, he recommended a chemotherapy drug called Cabometyx.
We sought a second opinion at another hospital, where the orthopedic oncologist suggested a radical amputation with lymphadenectomy of my inguinal lymph nodes, as long as the lung nodule turned out to be benign. Thankfully, the nodule was not CCS.
On June 9, 2023, I underwent a hip disarticulation amputation, in which my left leg was removed up to my hip. The surgery was successful, and out of the three inguinal lymph nodes removed, only one tested positive for cancer.
At 43 years old, learning to live as an amputee was no easy task. But as a mom, I knew I had to do everything I could to move forward, to be there for my two children and to show them that it’s possible to overcome even the hardest challenges if we don’t give up.
As of June 2025, I have been NED (No Evidence of Disease)for 2 years. I know nothing is guaranteed when it comes to CCS, but I’m learning to cherish every moment I have with my family.
By March 2023, I noticed bruising around my ankle and made another appointment. After ordering imaging, the podiatrist found a mass in my ankle. He reassured me that it was nothing to be concerned about because “it’s very rare for a mass in the ankle to be cancerous.” He explained that the pain I felt was due to the mass pressing on a nerve and suggested surgery to remove it.
After my surgery date was set, I began experiencing systemic symptoms such as fever, unexplained weight loss, and weakness , to the point that I fainted while trying to take a shower. By then, I could no longer walk or put weight on my leg due to the pain. I visited the ER multiple times and repeatedly contacted my podiatrist to understand what was happening. Despite seeing many doctors, no one could explain my symptoms, even though my husband and I insisted they were related to what was going on in my ankle. During this time, a visible lump appeared on my ankle.
Eventually, I tested positive for Epstein–Barr virus, and I felt relieved that a cause for my symptoms had finally been found. Because of my illness, my surgery kept getting delayed ,the podiatrist refused to proceed until my symptoms cleared.
When the surgery finally happened and I woke up, the podiatrist told me that what he found was much worse than expected. He sent the mass for biopsy and left my wound open “for staging purposes.”
On April 27, 2023, I received a call from the podiatrist informing me that I had Clear Cell Sarcoma (CCS). All he could say over the phone was that he was very sorry. I was bedridden, in tremendous pain, and now had to process a cancer diagnosis, all while recovering from surgery with an open wound.
When I met with my first oncologist at a hospital in Chicago, he recited a Google definition of Clear Cell Sarcoma to me and my family. He explained that because my cancer had metastasized from my ankle to my calf, knee, inguinal lymph nodes, and lung, he recommended a chemotherapy drug called Cabometyx.
We sought a second opinion at another hospital, where the orthopedic oncologist suggested a radical amputation with lymphadenectomy of my inguinal lymph nodes, as long as the lung nodule turned out to be benign. Thankfully, the nodule was not CCS.
On June 9, 2023, I underwent a hip disarticulation amputation, in which my left leg was removed up to my hip. The surgery was successful, and out of the three inguinal lymph nodes removed, only one tested positive for cancer.
At 43 years old, learning to live as an amputee was no easy task. But as a mom, I knew I had to do everything I could to move forward, to be there for my two children and to show them that it’s possible to overcome even the hardest challenges if we don’t give up.
As of June 2025, I have been NED (No Evidence of Disease)for 2 years. I know nothing is guaranteed when it comes to CCS, but I’m learning to cherish every moment I have with my family.
Audrey
In October 2017, the beginning of Audrey’s senior year, she had been complaining about how fatigued she was. We took her into the doctor and he ran a mono test which came back negative. She struggled the rest of her senior year but pushed through and rallied to do the things she loved, Audrey was homeschooled so I allowed her to sleep in but she still was so tired.In January 2018 she began with sinus/cold symptoms she just couldn’t shake and in March began to have sudden stomach pains and strange fevers and occasional one time vomitting. They left as quickly as they came. In April we were buisily shopping for her prom dress and she had her time filled with rehearsing for the upcoming Musical, The Little Mermaid, where she played Ariel. She would rally in rehearsals and come home and crash. Part of it, I was thinking, was senioritis, nerves, etc. One minute she was fine and bubbly and the next something just didnt seem right. In hindsight I look back and can see in pictures her loosing weight but in the midst of it it was so subtle we didn’t catch it.In May of 2018 she was working with her godmother and I at a park we tend and she just doubled over with pain and then it passed again as quickly as it came on. I told her we needed to go to the doctor but in the craziness of life and senior activities and parties it never happened, which in my opinion may have been for the best. The first of June we ventured on a much needed, long overdue vacation. While on vacation we took her into an urgent care where she was treated for a sinus infection and put on probiotics and gas relief as the doctor heard a lot of gassy sounds in her abdomen. We got home on June 11th. She got sick to her stomach on Thursday or Friday that week and then again Saturday night.On Father’s day our church was having an outdoor worship service in the city park and Audrey was leading two songs, one being an orginal she wrote. Even though she felt awful she said she was suppose to be there and sing. It was beautiful and in hindsight again I realized just what a strong, courageous young women she is. We came home from church and had the family over for dinner and games. Audrey ate and then got sick again and curled up on the couch. Her sister, Jena, looked at me and I at her and we knew this had now turned into an emercency. I told my husband she needs to go the ER and he scooped her up and carried her to the car. They examined her and ordered a CT with contrast. I overheard the doctor saying maybe pancreatitis or appendicitis. I texted everyone I knew to begin praying. Her blood work showed she was anemic and the doctor came back and said to her, “I’d like to tell you this is all in your head, but its not. We found a large fatty black mass in your small intestine.” They called our GI surgeon and they scheduled surgery for the next morning. The Lord was with us and the doctors for sure. The doctor opened her up, saw the mass and stopped pathology from leaving and said this had to go with them ASAP. He took 8” of her small intestines, lymphnodes, and the tennis ball size mass. He told us it was probably cancer but he, nor anyone on the surgical team had ever seen anything like this. The pathology report was sent for a second opinion to Dr. Fletcher at Harvard University and the diagnosis came back as clear cell sarcoma like of the GI tract. We were taken back and even more so as no one new what this was and had never heard of it.Audrey was in the hospital for 8 days and came home to recover. We have spent the last 9 months at different hospitals and oncologists with still very little if any explanation of what this was, how to treat it, etc. Researching it on the internet all we found were pathology reports and repeats of studies on the same pathology reports. What we were told is this is the rarest of the rare.In October of 2018 our church had a night of worship as a benefit for our family, and because it was in the paper, Scott Heller, another young man with ccslgt found us and contacted Denny and Lennie Woods from Sara’s Cure.Lennie contacted me and being internet cautious I hesitated in responding but I eventually did respond to Lennie and Praise the Lord every day that I did. What a wonderful connection and HOPE we gained by connecting with them. Since then we have met with Denny and Lenny at cc-TDI in Portland to join in on this much needed research.As a mother I am ever greatful for another mother to talk to about our daughters and gain insight to this horrible disease. We are currently still trying to find the best place for her to receive the best care. The frequency of scans and testing caused Audrey to postponed worship school but continues to work on her art with “The Little Artist That Could” and lead worship at church and other places. We are believing for a miracle for Audrey, Sara, Scott and other’s affected by this and are so excited for research being done at cc-TDI. We are truly blessed to know the Wood’s and be connected with Sara’s Cure.
Bob
~In memory of Bob~
Bob was first diagnosed with CCS in 2002. He noticed a painful lump in his foot and didn’t think much of it but was shocked to learn that it was CCS. Bob underwent a long surgery at University Hospital in Cleveland, Ohio where the doctors fully removed the tumor and reconstructed his foot. Although the recovery was difficult, this procedure allowed Bob to live nearly 20 years cancer free.Then in 2022, Bob noticed he was tired, not hungry and losing weight. Unfortunately the CCS had returned but this time it was much more aggressive and had spread to his lungs. Bob underwent chemo for palliative care but lost his battle with CCS just 5 short months after being diagnosed.Bob was a warrior and a great husband, dad, and friend to many and we miss him dearly. We will be hosting an annual golf scramble in his honor and all proceeds will go to CCSF to help others battling this rare cancer.
Bob was first diagnosed with CCS in 2002. He noticed a painful lump in his foot and didn’t think much of it but was shocked to learn that it was CCS. Bob underwent a long surgery at University Hospital in Cleveland, Ohio where the doctors fully removed the tumor and reconstructed his foot. Although the recovery was difficult, this procedure allowed Bob to live nearly 20 years cancer free.Then in 2022, Bob noticed he was tired, not hungry and losing weight. Unfortunately the CCS had returned but this time it was much more aggressive and had spread to his lungs. Bob underwent chemo for palliative care but lost his battle with CCS just 5 short months after being diagnosed.Bob was a warrior and a great husband, dad, and friend to many and we miss him dearly. We will be hosting an annual golf scramble in his honor and all proceeds will go to CCSF to help others battling this rare cancer.
Cooper
~In memory of Cooper~
Cooper, our son was diagnosed at age 13 with Clear Cell Sarcoma.We soon found out that this was a very rare type of sarcoma making up only 2% of all sarcomas. Our oncologist basically said that Copper has a 50/50 chance for a 5-year survival. We were able to find online a few people, Carolina DeHond and Kristen Seamans who had Clear Cell at that time. We communicated online through email until Carolina established a Facebook page for all with this disease to communicate. We also found a research paper by Mario Capecchi, who had a mouse model of Clear Cell, which lead us to the connection with Dr. Kevin Jones, who himself had a passion for research. When we contacted Dr. Jones, he was such an inspiration to us, we felt there was hope for Cooper. Dr. Jones answered every text, call and email sent to him. Any targeted therapy medications that were recommended, we would ask for his opinion. In July 2014, we lost Cooper, but we tried several targeted therapy drugs, Pazopanib, Crizotinib & Cabozantinib. At that time they were just beginning to hit the market as options. During the 14 months since diagnosis, we were supported by family, friends and our Suwanee community. This led to the formation of Cooper’s Crew, which was first started by his friends at school. T-shirts sales and donations helped us to start a foundation in 2015, and of course we called it Cooper's Crew. Today our mission is for Research, Inspiration, Scholarships and Awareness. Today at 10 years strong, we are still sustainable and continuing to fund research for treatments and hopefully for a CURE. - Donna & Kevin O'Brien (parents)
Cooper, our son was diagnosed at age 13 with Clear Cell Sarcoma.We soon found out that this was a very rare type of sarcoma making up only 2% of all sarcomas. Our oncologist basically said that Copper has a 50/50 chance for a 5-year survival. We were able to find online a few people, Carolina DeHond and Kristen Seamans who had Clear Cell at that time. We communicated online through email until Carolina established a Facebook page for all with this disease to communicate. We also found a research paper by Mario Capecchi, who had a mouse model of Clear Cell, which lead us to the connection with Dr. Kevin Jones, who himself had a passion for research. When we contacted Dr. Jones, he was such an inspiration to us, we felt there was hope for Cooper. Dr. Jones answered every text, call and email sent to him. Any targeted therapy medications that were recommended, we would ask for his opinion. In July 2014, we lost Cooper, but we tried several targeted therapy drugs, Pazopanib, Crizotinib & Cabozantinib. At that time they were just beginning to hit the market as options. During the 14 months since diagnosis, we were supported by family, friends and our Suwanee community. This led to the formation of Cooper’s Crew, which was first started by his friends at school. T-shirts sales and donations helped us to start a foundation in 2015, and of course we called it Cooper's Crew. Today our mission is for Research, Inspiration, Scholarships and Awareness. Today at 10 years strong, we are still sustainable and continuing to fund research for treatments and hopefully for a CURE. - Donna & Kevin O'Brien (parents)
Cortney
In October 2019, I went to the Dr. to have what was believed to be a ganglion cyst removed. Before 2019, I had three physicians look at the bump on my ankle only to be told that it was nothing to be concerned about. It grew larger and was starting to bother my range of motion and was becoming an eye sore. I went in to have it drained in October 2019 and unfortunately, it was a solid mass. Per the Dr, there was still no cause for concern, but they ordered an MRI. The results came back, and it showed as a benign tumor that needed removal. I scheduled surgery and was in and out in a couple of hours. Dr. said everything was great and there was nothing to worry about. That was until I got a call four days later from the Dr. telling me it was cancer and that they were referring me to Levine Cancer Institute for treatment.
My heart stopped, and a ringing in my ears so loud that I couldn't concentrate on anything else. I cannot remember one word the Dr. said after the "C" word. My son was at basketball tryouts and my husband was there to pick him up. I sat alone in my backyard in stunned silence. I immediately called my husband, and the only words I could get out were, "It's cancer." He thought I was kidding. The fear, anxiety, unknowing and fragility all hit you a once. I knew this had been in my body for YEARS! I was expecting the worst. I had scan after scan to determine how far this had spread while we waited to hear what type of cancer it was. On October 31, 2019, we learned that it had stayed local in my right leg, which was as good news as we could have received. My cancer type: Clear Cell Sarcoma.
I had a successful resection surgery in December 2019 and spent the next 2.5 years cancer-free. In May 2022 a small tumor in my right leg appeared on my surveillance PET scan. I had it biopsied in June 2022 and underwent another successful resection surgery in August 2022.
In December 2022, I noticed a small lump in my right leg a little farther up than my other two tumors. My physician's office was able to get me in for a MRI the same day. The results came back that my clear cell sarcoma had returned for a third time.
This time we decided to have the BKA (below knee amputation). I was terrified because I was so active and didn't want to become immobile. I spoke with a couple of individuals who were amputees and after those conversations, I knew I could do this. I would do anything to be able to finish raising my son. I would go through hell and back for him.
My amputation (which I called a pedicure b/c I hate the word amputation) was in February 2023. I decided to no longer keep quiet about my cancer battle and take it public. I started releasing a monthly blog. This way I could inform those who were curious, and maybe give some inspiration along the way.
I decided to have fun with my amputation and make everything themed after the Friends TV Show. My residual limb was named Regina and my prosthesis is Phalange. My walker's name was Estelle. All of my blog posts start with "The One With." I try to face every battle and every obstacle with humor. I set goals for myself after my amputation. I was released the day after my surgery and I was back up on a paddleboard two months after the pedicure!
In May 2024 during my surveillance PET scan, a bright spot showed in my right arm. I was so angry because I had gone through this amputation and it didn't get rid of the cancer. However, I put a smile on my face and gritted my teeth and decided to battle again. I underwent a radio-frequency ablation on my right humerus. On my next set of surveillance scans in August 2024, the cancer in my arm was gone but they found a small tumor in my heart of all places.
In September 2024, I underwent open heart surgery to remove the tumor and patch my heart. This was by far the most difficult surgery I had faced. However, I rocked it and was the quickest patient to be released from the hospital after open heart surgery!
In December 2024 during surveillance scans, we found that the cancer had metastasized to both of my arms and to three spots in my liver. I began immunotherapy (ippi/nivo) in December but unfortunately, I had a severe reaction that landed me hospitalized. The immunotherapy attacked my endocrine system and burned up my adrenal gland. I am now on steroid hormone replacement to keep my body in check. I have undergone five infusions of immunotherapy as well as, started on cabometyx in March 2025.
I am a CCS warrior for my son and husband. I will continue to face this battle with dignity, humor, and grace.
Here is a link to my blog: https://makeitcountforcort.wixsite.com/makeitcountforcort
My heart stopped, and a ringing in my ears so loud that I couldn't concentrate on anything else. I cannot remember one word the Dr. said after the "C" word. My son was at basketball tryouts and my husband was there to pick him up. I sat alone in my backyard in stunned silence. I immediately called my husband, and the only words I could get out were, "It's cancer." He thought I was kidding. The fear, anxiety, unknowing and fragility all hit you a once. I knew this had been in my body for YEARS! I was expecting the worst. I had scan after scan to determine how far this had spread while we waited to hear what type of cancer it was. On October 31, 2019, we learned that it had stayed local in my right leg, which was as good news as we could have received. My cancer type: Clear Cell Sarcoma.
I had a successful resection surgery in December 2019 and spent the next 2.5 years cancer-free. In May 2022 a small tumor in my right leg appeared on my surveillance PET scan. I had it biopsied in June 2022 and underwent another successful resection surgery in August 2022.
In December 2022, I noticed a small lump in my right leg a little farther up than my other two tumors. My physician's office was able to get me in for a MRI the same day. The results came back that my clear cell sarcoma had returned for a third time.
This time we decided to have the BKA (below knee amputation). I was terrified because I was so active and didn't want to become immobile. I spoke with a couple of individuals who were amputees and after those conversations, I knew I could do this. I would do anything to be able to finish raising my son. I would go through hell and back for him.
My amputation (which I called a pedicure b/c I hate the word amputation) was in February 2023. I decided to no longer keep quiet about my cancer battle and take it public. I started releasing a monthly blog. This way I could inform those who were curious, and maybe give some inspiration along the way.
I decided to have fun with my amputation and make everything themed after the Friends TV Show. My residual limb was named Regina and my prosthesis is Phalange. My walker's name was Estelle. All of my blog posts start with "The One With." I try to face every battle and every obstacle with humor. I set goals for myself after my amputation. I was released the day after my surgery and I was back up on a paddleboard two months after the pedicure!
In May 2024 during my surveillance PET scan, a bright spot showed in my right arm. I was so angry because I had gone through this amputation and it didn't get rid of the cancer. However, I put a smile on my face and gritted my teeth and decided to battle again. I underwent a radio-frequency ablation on my right humerus. On my next set of surveillance scans in August 2024, the cancer in my arm was gone but they found a small tumor in my heart of all places.
In September 2024, I underwent open heart surgery to remove the tumor and patch my heart. This was by far the most difficult surgery I had faced. However, I rocked it and was the quickest patient to be released from the hospital after open heart surgery!
In December 2024 during surveillance scans, we found that the cancer had metastasized to both of my arms and to three spots in my liver. I began immunotherapy (ippi/nivo) in December but unfortunately, I had a severe reaction that landed me hospitalized. The immunotherapy attacked my endocrine system and burned up my adrenal gland. I am now on steroid hormone replacement to keep my body in check. I have undergone five infusions of immunotherapy as well as, started on cabometyx in March 2025.
I am a CCS warrior for my son and husband. I will continue to face this battle with dignity, humor, and grace.
Here is a link to my blog: https://makeitcountforcort.wixsite.com/makeitcountforcort
Destini
~In memory of Destini~
Destini Ja’Dai Fuqua was born on June 6, 2004. She came into this world not breathing yet fought her way into life with strength. From the start, Destini was full of light. She was my firstborn daughter, a little diva who loved fashion, accessorizing, dancing, making videos, shopping, and spending time with her family and friends. She cared for her siblings like a second mother, always nurturing and protective.
In August 2020, Destini discovered a painful lump on her back. After testing, doctors confirmed she had Clear Cell Sarcoma, a rare and aggressive cancer with limited treatment options and no clinical trials. By the time it was diagnosed, the disease had already spread to her lungs, hip, neck, and back. Over nine months, Destini bravely endured chemotherapy, immunotherapy, proton radiation, and even Holistic treatments. Despite her strength, the cancer continued to spread. In April 2021, she made the courageous decision to stop treatment and entered hospice care. Destini spent her final days at home, surrounded by love. On the night before her passing, she softly said, “I see the light.” The next day on May 20, 2021, at 5:22 p.m., she transitioned at just 16 years old. In a heartbreaking irony, she left this world the same way she entered it without breath. Destini embodied beauty, resilience, intelligence, and bravery. She will forever be remembered as my Sweet 16 Angel. My hope is that her story inspires greater research and funding for Clear Cell Sarcoma so more families may have hope for tomorrow. - Lakisha Lately (mom)
Destini Ja’Dai Fuqua was born on June 6, 2004. She came into this world not breathing yet fought her way into life with strength. From the start, Destini was full of light. She was my firstborn daughter, a little diva who loved fashion, accessorizing, dancing, making videos, shopping, and spending time with her family and friends. She cared for her siblings like a second mother, always nurturing and protective.
In August 2020, Destini discovered a painful lump on her back. After testing, doctors confirmed she had Clear Cell Sarcoma, a rare and aggressive cancer with limited treatment options and no clinical trials. By the time it was diagnosed, the disease had already spread to her lungs, hip, neck, and back. Over nine months, Destini bravely endured chemotherapy, immunotherapy, proton radiation, and even Holistic treatments. Despite her strength, the cancer continued to spread. In April 2021, she made the courageous decision to stop treatment and entered hospice care. Destini spent her final days at home, surrounded by love. On the night before her passing, she softly said, “I see the light.” The next day on May 20, 2021, at 5:22 p.m., she transitioned at just 16 years old. In a heartbreaking irony, she left this world the same way she entered it without breath. Destini embodied beauty, resilience, intelligence, and bravery. She will forever be remembered as my Sweet 16 Angel. My hope is that her story inspires greater research and funding for Clear Cell Sarcoma so more families may have hope for tomorrow. - Lakisha Lately (mom)
Drake
In April 2024, The Green Family’s world changed when Drake, just 14 years old, was diagnosed with Clear Cell Sarcoma after doctors discovered a 9 cm tumor in his descending colon. At the time, we were told this cancer would be considered terminal if it could not be removed surgically. By grace, the tumor was successfully removed with clear margins.
For the next 10 months, Drake’s scans came back clear. We celebrated every result and held tightly to hope. But then the cancer returned, this time in his liver. The lesions are now widespread. We’ve been told that to remove them all, a full liver resection would be required, but because transplant is not an option for this type of cancer, resection is also not possible.
For the past six months, we have faced constant uncertainty shifting treatment plans, back and forth decisions, and are still searching for the right path forward. There are no easy answers, but what hasn’t changed is Drake’s courage. He continues to fight with determination and grace, showing us all what true strength looks like.
Our journey is far from over, but we will keep holding onto faith, hope, and the power of community as Drake navigates this fight. No child should have to go through this and no parent should have to watch their child struggle. We will continue to fight and advocate for all CCS warriors and stand up for those who can no longer stand up for themselves. - Danielle Green (mom)
For the next 10 months, Drake’s scans came back clear. We celebrated every result and held tightly to hope. But then the cancer returned, this time in his liver. The lesions are now widespread. We’ve been told that to remove them all, a full liver resection would be required, but because transplant is not an option for this type of cancer, resection is also not possible.
For the past six months, we have faced constant uncertainty shifting treatment plans, back and forth decisions, and are still searching for the right path forward. There are no easy answers, but what hasn’t changed is Drake’s courage. He continues to fight with determination and grace, showing us all what true strength looks like.
Our journey is far from over, but we will keep holding onto faith, hope, and the power of community as Drake navigates this fight. No child should have to go through this and no parent should have to watch their child struggle. We will continue to fight and advocate for all CCS warriors and stand up for those who can no longer stand up for themselves. - Danielle Green (mom)
Erica
~In memory of Erica~
Erica was a beacon of light and strength, her life was filled with love, laughter, and the joy of raising her three beautiful children. In mid-2019, when she was just 29 years old, Erica’s world was shaken when she was diagnosed with Clear Cell Sarcoma, a rare and aggressive cancer. Despite the daunting diagnosis, Erica faced her battle with unwavering courage and determination.
In March 2020, she made the incredibly brave decision to have her right hand amputated in an effort to combat the disease. This sacrifice was a testament to her fierce will to live and to fight for more time with her family. Despite the immense challenges, Erica’s spirit never wavered. She continued to be a loving mother, always putting her children first and finding joy in the little moments.
Erica’s fight came to a heartbreaking end on June 26, 2023, but her legacy of love, courage, and resilience lives on in the hearts of her children and everyone who knew her. She taught us all the true meaning of strength and the power of a mother’s love. Her passing left an irreplaceable void in the hearts of her family and friends. She is deeply missed every day and her memory cherished by those who knew and loved her. Erica’s legacy is one of bravery, love, and an unyielding spirit. She would want nothing more than to spare others from the pain of this devastating illness. Her story continues to inspire and remind us of the preciousness of life and the importance of hope. - Brian Gould (dad)
Erica was a beacon of light and strength, her life was filled with love, laughter, and the joy of raising her three beautiful children. In mid-2019, when she was just 29 years old, Erica’s world was shaken when she was diagnosed with Clear Cell Sarcoma, a rare and aggressive cancer. Despite the daunting diagnosis, Erica faced her battle with unwavering courage and determination.
In March 2020, she made the incredibly brave decision to have her right hand amputated in an effort to combat the disease. This sacrifice was a testament to her fierce will to live and to fight for more time with her family. Despite the immense challenges, Erica’s spirit never wavered. She continued to be a loving mother, always putting her children first and finding joy in the little moments.
Erica’s fight came to a heartbreaking end on June 26, 2023, but her legacy of love, courage, and resilience lives on in the hearts of her children and everyone who knew her. She taught us all the true meaning of strength and the power of a mother’s love. Her passing left an irreplaceable void in the hearts of her family and friends. She is deeply missed every day and her memory cherished by those who knew and loved her. Erica’s legacy is one of bravery, love, and an unyielding spirit. She would want nothing more than to spare others from the pain of this devastating illness. Her story continues to inspire and remind us of the preciousness of life and the importance of hope. - Brian Gould (dad)
Ethan
~In memory of Ethan~
Ethan was a young, vibrant, healthy and active boy who loved playing soccer and video games. When he started complaining about the area around his shoulder blade hurting, I thought he slept wrong. Then, his lymph nodes in his armpit were swollen and I
thought, his body was fighting an infection. He had no other symptoms! One night after soccer practice, he was super fidgety on the way home and was complaining of pain in his shoulder area. He was very uncomfortable. The next day, I took him to the pediatrician. We had been there three months before with a situation on the same arm/chest area and were told it was a hematoma after an ultrasound was done. So,
when we came back in with a problem on the same side, the pediatrician wanted to do further testing. She sent us for x-rays as well as orders for an ultrasound and bloodwork. Within forty-five minutes of getting home from the x-ray, she called and told me to take Ethan to the ER.
That is how Ethan’s story began. What seemed like insignificant symptoms turned into a Clear Cell Sarcoma diagnosis. We were in the hospital for weeks being tested for all kinds of infectious diseases and nothing came back positive. They did a biopsy and when the results came in, they told us it was cancer and I was in shock. I couldn’t believe my barely 13-year-old son had cancer (his dad had passed from brain cancer just 7 years earlier). The type of cancer took a bit longer and we got that news right after Christmas 2023. I had never heard of Clear Cell Sarcoma. So, I began researching and wanted second opinions. We talked to various hospitals and wanted his biopsy sent there for confirmation. It wasn’t needed with the gene testing showing he was positive for EWSR1 and ATF1 fusion.
Ethan took everything like a champ. He underwent rounds of chemotherapy and then the largest surgical procedure Phoenix Children’s Hospital had done. In March 2024,
he had a full arm amputation as well as multiple ribs, scapula and brachial plexus area.
The surgery was massive and it took multiple surgeries to complete. He took everything
in stride and never complained! He had a smile that lit up the room and he was filled with the Holy Spirit and people saw it. He recovered from the surgery, went to rehab and came home. Five days later, he was complaining of trouble breathing and his heart rate
was high so we went back to the ER. We got the devastating news that it had spread to his liver, abdomen, spots on his lungs, and what looked like a spot on his other arm as
well as lymph nodes in his neck. He was in a lot of pain, came home on hospice and
passed away in May 2024. Just five months after diagnosis. He was strong and courageous and he loved Jesus! I pray a cure can be found for this horrible disease so no other child must endure the
suffering!
Ethan was a young, vibrant, healthy and active boy who loved playing soccer and video games. When he started complaining about the area around his shoulder blade hurting, I thought he slept wrong. Then, his lymph nodes in his armpit were swollen and I
thought, his body was fighting an infection. He had no other symptoms! One night after soccer practice, he was super fidgety on the way home and was complaining of pain in his shoulder area. He was very uncomfortable. The next day, I took him to the pediatrician. We had been there three months before with a situation on the same arm/chest area and were told it was a hematoma after an ultrasound was done. So,
when we came back in with a problem on the same side, the pediatrician wanted to do further testing. She sent us for x-rays as well as orders for an ultrasound and bloodwork. Within forty-five minutes of getting home from the x-ray, she called and told me to take Ethan to the ER.
That is how Ethan’s story began. What seemed like insignificant symptoms turned into a Clear Cell Sarcoma diagnosis. We were in the hospital for weeks being tested for all kinds of infectious diseases and nothing came back positive. They did a biopsy and when the results came in, they told us it was cancer and I was in shock. I couldn’t believe my barely 13-year-old son had cancer (his dad had passed from brain cancer just 7 years earlier). The type of cancer took a bit longer and we got that news right after Christmas 2023. I had never heard of Clear Cell Sarcoma. So, I began researching and wanted second opinions. We talked to various hospitals and wanted his biopsy sent there for confirmation. It wasn’t needed with the gene testing showing he was positive for EWSR1 and ATF1 fusion.
Ethan took everything like a champ. He underwent rounds of chemotherapy and then the largest surgical procedure Phoenix Children’s Hospital had done. In March 2024,
he had a full arm amputation as well as multiple ribs, scapula and brachial plexus area.
The surgery was massive and it took multiple surgeries to complete. He took everything
in stride and never complained! He had a smile that lit up the room and he was filled with the Holy Spirit and people saw it. He recovered from the surgery, went to rehab and came home. Five days later, he was complaining of trouble breathing and his heart rate
was high so we went back to the ER. We got the devastating news that it had spread to his liver, abdomen, spots on his lungs, and what looked like a spot on his other arm as
well as lymph nodes in his neck. He was in a lot of pain, came home on hospice and
passed away in May 2024. Just five months after diagnosis. He was strong and courageous and he loved Jesus! I pray a cure can be found for this horrible disease so no other child must endure the
suffering!
Henry
~In memory of Henry~
I was 37 when I was first diagnosed with clear cell sarcoma of the foot. Because they caught it to late the tumor was all in my foot and wrapped around my ankle bone so the only choice I had was to do below the knee amputation. I was nervous but knew that was my only option. I was told after surgery that they got all the disease and I was happy for that but I knew I had a long road a head of me. I had to learn to walk again and it was tough but I did it! I was NED for almost 2 years. Then at the end of December 2017 the scans showed reoccurrence. The cancer was behind my knee and it has spread up my lymph nodes to my pelvis area and I have two spots on my lungs. The doctor told me it would a tough fight and it has been but I am doing it! I am giving it my all! I have the best support system ever! I have my beautiful girlfriend, Kerrie, who has been by my side every step of the way. I have my kids, my parents, who have been in my corner from the beginning and my family and friends. I am grateful that Kerrie met Lennie Woods and that Lennie reached out to her. My doctor tells me that clear cell sarcoma is so rare that unfortunately there is not that much research being done on it so we need funds and donations! We need to find people who are willing to donate their time and find a cure. You see, clear cell sarcoma dose not get enough exposure and we need to fix that so please donate! Push that button and help us find a cure for this awful disease.
I was 37 when I was first diagnosed with clear cell sarcoma of the foot. Because they caught it to late the tumor was all in my foot and wrapped around my ankle bone so the only choice I had was to do below the knee amputation. I was nervous but knew that was my only option. I was told after surgery that they got all the disease and I was happy for that but I knew I had a long road a head of me. I had to learn to walk again and it was tough but I did it! I was NED for almost 2 years. Then at the end of December 2017 the scans showed reoccurrence. The cancer was behind my knee and it has spread up my lymph nodes to my pelvis area and I have two spots on my lungs. The doctor told me it would a tough fight and it has been but I am doing it! I am giving it my all! I have the best support system ever! I have my beautiful girlfriend, Kerrie, who has been by my side every step of the way. I have my kids, my parents, who have been in my corner from the beginning and my family and friends. I am grateful that Kerrie met Lennie Woods and that Lennie reached out to her. My doctor tells me that clear cell sarcoma is so rare that unfortunately there is not that much research being done on it so we need funds and donations! We need to find people who are willing to donate their time and find a cure. You see, clear cell sarcoma dose not get enough exposure and we need to fix that so please donate! Push that button and help us find a cure for this awful disease.
Ivy
~In memory of Ivy~
How do you sum up 3 ½ years of fear, heartbreak, and beauty in the life of a little girl who lived so big during such a terrifying battle?
In 2020, after finding a lump on her shoulder, Ivy was first misdiagnosed with Ewing’s Sarcoma before learning it was Clear Cell Sarcoma. At age 9, she endured harsh treatments, lost her hair, underwent major surgery, and even when she could no longer rotate her right arm, she swam her favorite stroke, the Butterfly, with one arm.
Over the years, she bravely entered three clinical trials at St. Jude, fought through toxic side effects, and endured countless setbacks. Despite moments of stability, her cancer spread, and after one final decline, Ivy passed away quietly just after Christmas at age 13.
She was a huge presence in all of our lives, scary, sad, and beautiful all at once, and she is deeply missed. - Lindsay Lovell Foley (mom)
How do you sum up 3 ½ years of fear, heartbreak, and beauty in the life of a little girl who lived so big during such a terrifying battle?
In 2020, after finding a lump on her shoulder, Ivy was first misdiagnosed with Ewing’s Sarcoma before learning it was Clear Cell Sarcoma. At age 9, she endured harsh treatments, lost her hair, underwent major surgery, and even when she could no longer rotate her right arm, she swam her favorite stroke, the Butterfly, with one arm.
Over the years, she bravely entered three clinical trials at St. Jude, fought through toxic side effects, and endured countless setbacks. Despite moments of stability, her cancer spread, and after one final decline, Ivy passed away quietly just after Christmas at age 13.
She was a huge presence in all of our lives, scary, sad, and beautiful all at once, and she is deeply missed. - Lindsay Lovell Foley (mom)
Jaden
My daughter was diagnosed with Clear Cell Sarcoma in November 2020 at the age of 13. Needless to say, the shock and utter despair were overwhelming. The doctors and oncologists were so unfamiliar with it, many had never even heard of this rare form of cancer. Shortly after scouring the internet {never a good thing to do with medical issues}, I found CCSF. I was immediately welcomed into the group with kindness and understanding. My plea for help was met with compassion and guidance, and the team of medical doctors and researchers are the most knowledgeable in the world about this disease.
When my daughter's oncologist planned to do surgery to remove her tumor, something just didn’t feel right. In discussions with the CCSF team, they connected me to oncology surgeon Dr. Kevin Jones {now the CCSF medical advisor}, who is studying CCS. He helped tremendously in creating a better treatment plan for her and even spoke directly with her oncologist to ensure the necessary changes were made.
Jaden’s tumor was found in a lymph node under her arm, and following Dr. Jones’s advice, she underwent 25 rounds of radiation to shrink the tumor before removal. The surgery was successful, and she has been cancer-free since early 2021. We know there have been no studies of CCS starting or stopping in a lymph node, but we pray daily that she will be the anomaly and continue to live life to the fullest for as long as possible!
Jaden just graduated high school, and I was able to take her on her lifelong dream of visiting Norway (that’s her in the picture). - Kim Jamieson Hein (mom)
When my daughter's oncologist planned to do surgery to remove her tumor, something just didn’t feel right. In discussions with the CCSF team, they connected me to oncology surgeon Dr. Kevin Jones {now the CCSF medical advisor}, who is studying CCS. He helped tremendously in creating a better treatment plan for her and even spoke directly with her oncologist to ensure the necessary changes were made.
Jaden’s tumor was found in a lymph node under her arm, and following Dr. Jones’s advice, she underwent 25 rounds of radiation to shrink the tumor before removal. The surgery was successful, and she has been cancer-free since early 2021. We know there have been no studies of CCS starting or stopping in a lymph node, but we pray daily that she will be the anomaly and continue to live life to the fullest for as long as possible!
Jaden just graduated high school, and I was able to take her on her lifelong dream of visiting Norway (that’s her in the picture). - Kim Jamieson Hein (mom)
Jane
In April 2021 started to get a pain in my right palm which I thought came from pushing, my then 5 month old baby, in the buggy. I went for physio and in late August, when the pain was still there, I went to my gp who sent me for an MRI. Never in our wildest dreams did we imagine that it would come back as something serious. There was a very very slight swelling on my palm that you wouldn’t notice unless you looked closely. However there was a 3.9 cm tumour under the palm of my hand, below the tendons and above the bone.
A biopsy was taken and the results came back as Clear Cell Sarcoma which is an incredibly rare, aggressive form of cancer. Unfortunately, Clear Cell Sarcoma doesn’t respond to traditional treatments like chemotherapy. When the Clear Cell diagnosis came back from the biopsy my consultant sent for a second opinion on treatment plan from Stanmore in London given the extremely rare nature of it the diagnosis.
The decision came back on Friday December 10th, the day after my baby’s first birthday, that my right hand would be amputated the following Tuesday. I had done some research so I was mentally prepared for this decision but it came as a shock to many of my friends and family.
Life with one hand is definitely more challenging than before but I consider myself so lucky to be here. Since I was diagnosed it has taught me to live more in the now and enjoy every minute of life.
Unfortunately in October 2023 it was discovered that the cancer had metastasised to my right axilla and my liver. I was on medication since October and received surgery to clear the axilla and liver ablation in May 2024. This kept me cancer free until May 2025 when again there were masses in my liver, axilla and scapula. I have started a new medication in the hopes that it will slow things down and we can see what happens from there. I have a fantastic medical team in Cork and for that I am eternally grateful.
Right now we are focused on enjoying our lives together with our family and friends and we continue to hope for the best. If we have learned anything from the last few years it is to slow down and not to put things off that we wanted to do. We have had a rough few years but also a great few years and made so many beautiful and fun memories which we would not have done if it wasn’t for my diagnosis. Obviously we would prefer not to be in this situation but we are and all we can do is make the best of it, which we definitely do 🥰 Many people with CCS don’t get the chance to do what we have and for that I am very fortunate.
A biopsy was taken and the results came back as Clear Cell Sarcoma which is an incredibly rare, aggressive form of cancer. Unfortunately, Clear Cell Sarcoma doesn’t respond to traditional treatments like chemotherapy. When the Clear Cell diagnosis came back from the biopsy my consultant sent for a second opinion on treatment plan from Stanmore in London given the extremely rare nature of it the diagnosis.
The decision came back on Friday December 10th, the day after my baby’s first birthday, that my right hand would be amputated the following Tuesday. I had done some research so I was mentally prepared for this decision but it came as a shock to many of my friends and family.
Life with one hand is definitely more challenging than before but I consider myself so lucky to be here. Since I was diagnosed it has taught me to live more in the now and enjoy every minute of life.
Unfortunately in October 2023 it was discovered that the cancer had metastasised to my right axilla and my liver. I was on medication since October and received surgery to clear the axilla and liver ablation in May 2024. This kept me cancer free until May 2025 when again there were masses in my liver, axilla and scapula. I have started a new medication in the hopes that it will slow things down and we can see what happens from there. I have a fantastic medical team in Cork and for that I am eternally grateful.
Right now we are focused on enjoying our lives together with our family and friends and we continue to hope for the best. If we have learned anything from the last few years it is to slow down and not to put things off that we wanted to do. We have had a rough few years but also a great few years and made so many beautiful and fun memories which we would not have done if it wasn’t for my diagnosis. Obviously we would prefer not to be in this situation but we are and all we can do is make the best of it, which we definitely do 🥰 Many people with CCS don’t get the chance to do what we have and for that I am very fortunate.
Jeff
My name is Jeff Bridges, a 55 yr old husband and father. I was diagnosed in Aug of 2023 after finding a lump in my groin. I was stage IV at diagnosis with 11 lung nodules and an additional tumor in my left bicep. I began immunotherapy treatment in Dec of 2023 and got an immediate response. The bicep tumor decreased in size as did the lung nodules. Although my lung metastasis continued to respond(only two of the original eleven can be detected on scans today), the bicep tumor returned. I had my left bicep resected in Feb of 2025. Prior to that I had metastasis to the brain. I had no symptoms but had an accident and scans looking for a concussion found the brain tumor early. I underwent a single gamma knife radiation treatment and MRI’s continue to show no growth a year later. The immunotherapy also attacked my pancreas rendering me a type 1 diabetic. That was a tough adjustment at 54 yrs old but I am managing that well.
This diagnosis scared me. CCS is such a rare disease and most published studies give a pretty poor prognosis. I feel fortunate to have found a sarcoma specialist and have learned to enjoy “today”. I took early retirement and my wife and I spend everyday together camping, boating, visiting our adult daughters and just enjoying life. I was told early in my diagnosis by a friend “you can find blessings in this”. I was a little offended when I first heard it but, two years later I can honestly say, it’s the most truthful statement I’ve ever heard. I no longer stress the little stuff. Spending real quality time with family and friends brings me a peace I’m not sure I would have found otherwise. I’m not happy I got cancer but, I’m no longer angry I did either.
This diagnosis scared me. CCS is such a rare disease and most published studies give a pretty poor prognosis. I feel fortunate to have found a sarcoma specialist and have learned to enjoy “today”. I took early retirement and my wife and I spend everyday together camping, boating, visiting our adult daughters and just enjoying life. I was told early in my diagnosis by a friend “you can find blessings in this”. I was a little offended when I first heard it but, two years later I can honestly say, it’s the most truthful statement I’ve ever heard. I no longer stress the little stuff. Spending real quality time with family and friends brings me a peace I’m not sure I would have found otherwise. I’m not happy I got cancer but, I’m no longer angry I did either.
Josh
~In memory of Josh~
Joshua Leon James Milner’s legacy is truly all of us that must remain in this world without him. There never was a light as bright as his and through us it will continue to shine. Throughout his illness, Josh refused to let his diagnosis define him and continued to live his life to absolute fullest; yet another testament to his natural zeal for life.
In 2021, Josh began his journey with clear cell sarcoma (CCS) when he was seen by a dermatologist for a lump on his hand that had been present for years, but he simply considered a cosmetic annoyance. Multiple diagnostic tests were ordered to understand what the growing lesion was and to differentiate it from what was initially thought to be melanoma in origin. This is a common misdiagnosis due to histological similarities, shared immunohistochemical markers, and similar clinical presentations. Only when molecular testing was performed to determine the presence of the specific EWSR1:ATF1 gene fusion, the hallmark biomarker of CCS, was his diagnosis confirmed, and the reality of his condition was realized. His case was transferred to a leading sarcoma oncologist at Winship Cancer Institute in his hometown of Atlanta, GA commencing the fight for his life.
In December 2021, Josh was advised of his treatment options which included simple surgical resection of the mass, partial or total amputation of the fingers or hand, and/or other neoadjuvant and adjuvant options like chemotherapy and radiotherapy, both of which have demonstrated minimal efficacy and impact on patient outcomes. Josh opted for the simplest option, targeted lumpectomy, to ensure that he would continue to have a good quality of life despite what was on the horizon. Josh underwent the procedure complete with skin grafting from his arm to cosmetically repair the tissue loss. In a hilarious turn of events, the skin used from his forearm contained a small tattoo that ended up on his hand and while he was initially angry, he went on to tell the tale to anyone who would listen. With his vibrant personality and passion for bringing joy to others, only he could make cancer funny to quell his friend’s and family’s fears. Lymph nodes were also resected at the time of surgery to determine if the cancer had already spread to the “body’s super-highway”. Fifty percent of the nodes sampled tested positive for the cancer and therefore he was diagnosed as having locally advanced disease, a diagnosis that brings with it high metastatic potential and poorer survival. This was devastating news for those who understood what it all meant, but Josh kept a positive outlook and always stated post-surgery that he was cancer-free. He was not nor would he ever be again.
Throughout 2022, Josh went on with his “cancer-free” life and his radiographic scans showed promise that the cancer was still dormant, being contained to the lymph nodes. In early 2023, however, his cancer came back and true to CCS, it came back with a vengeance traveling to his lungs. His locally advanced Stage III cancer was now confirmed as metastatic Stage IV with multiple lesions and surgical resection of the nodules was the only option offered at the time. Once again, he recovered well and scans demonstrated that the lung lesions were completely removed, however, more were to return in late 2023, triggering yet another invasive surgery. His spirit during this time remained strong, but those who knew him best could see the toll it was taking on his body. More scans, more lesions in early 2024 and Josh knew he had to try something different, something that may stave off the cancer without losing more lung tissue. After consulting with his oncologist in January 2024, he agreed to go on cabozantinib, a life-prolonging drug that had shown great potential in the metastatic CCS setting. Josh responded well for a few months albeit with some side effects that ultimately affected his sense of taste and appetite. His scan continued to look promising as the lesions shrunk, and he went back to his “cancer-free” lifestyle.
In April 2025, Josh began to dramatically lose weight, and a new back pain had emerged, one that would not subside with analgesics or physical/chiropractic therapy. Josh began to withdraw from his social life as his pain grew as he did not want to concern his friends and family. By July 2025, Josh had lost almost 30lbs and he was rushed to the ER to get updated scans. After much diagnostic workup, the scans showed that the cancer had spread…everywhere. His body was ravaged by the disease that had now spread into the abdominal and thoracic connective tissues, spleen, and into his bones which was causing catastrophic fractures. Everyone finally understood why he could not kick the pain, but he remained optimistic that his hero, his oncologist, would find a new solution. He was discharged from the hospital and put on nivolumab, an immunotherapy that was a last-ditch effort to prolong his days. Too little, too late, as Josh’s cancer did not respond, and his body had taken so many hits from which it could not recover.
Throughout July, friends and family provided him round-the-clock home care as his appetite, mind, and body faded. At the age of 48, Josh passed from metastatic CCS on August 10, 2025, surrounded by his loving family. Josh’s memory lives on in those that loved him. His passions were his family and friends, whom he loved fiercely, reading (especially Stephen King, a love he shared with his mother), unbelievably bad dancing, tacos, shed parties, and bourbon. He never missed crashing a girls’ night and somehow mastered the art of hibachi. There was no problem, large or small he wouldn’t help solve. Josh was our champion and our glue – loving, hilarious, and often extremely inappropriate in ways that became some of his most endearing qualities. A celebration of life will take place in Atlanta on October 19, 2025, where all who loved him are welcome to gather, remember, and honor the joy he brought into the world. For ever more, Josh, FSJ!
Joshua Leon James Milner’s legacy is truly all of us that must remain in this world without him. There never was a light as bright as his and through us it will continue to shine. Throughout his illness, Josh refused to let his diagnosis define him and continued to live his life to absolute fullest; yet another testament to his natural zeal for life.
In 2021, Josh began his journey with clear cell sarcoma (CCS) when he was seen by a dermatologist for a lump on his hand that had been present for years, but he simply considered a cosmetic annoyance. Multiple diagnostic tests were ordered to understand what the growing lesion was and to differentiate it from what was initially thought to be melanoma in origin. This is a common misdiagnosis due to histological similarities, shared immunohistochemical markers, and similar clinical presentations. Only when molecular testing was performed to determine the presence of the specific EWSR1:ATF1 gene fusion, the hallmark biomarker of CCS, was his diagnosis confirmed, and the reality of his condition was realized. His case was transferred to a leading sarcoma oncologist at Winship Cancer Institute in his hometown of Atlanta, GA commencing the fight for his life.
In December 2021, Josh was advised of his treatment options which included simple surgical resection of the mass, partial or total amputation of the fingers or hand, and/or other neoadjuvant and adjuvant options like chemotherapy and radiotherapy, both of which have demonstrated minimal efficacy and impact on patient outcomes. Josh opted for the simplest option, targeted lumpectomy, to ensure that he would continue to have a good quality of life despite what was on the horizon. Josh underwent the procedure complete with skin grafting from his arm to cosmetically repair the tissue loss. In a hilarious turn of events, the skin used from his forearm contained a small tattoo that ended up on his hand and while he was initially angry, he went on to tell the tale to anyone who would listen. With his vibrant personality and passion for bringing joy to others, only he could make cancer funny to quell his friend’s and family’s fears. Lymph nodes were also resected at the time of surgery to determine if the cancer had already spread to the “body’s super-highway”. Fifty percent of the nodes sampled tested positive for the cancer and therefore he was diagnosed as having locally advanced disease, a diagnosis that brings with it high metastatic potential and poorer survival. This was devastating news for those who understood what it all meant, but Josh kept a positive outlook and always stated post-surgery that he was cancer-free. He was not nor would he ever be again.
Throughout 2022, Josh went on with his “cancer-free” life and his radiographic scans showed promise that the cancer was still dormant, being contained to the lymph nodes. In early 2023, however, his cancer came back and true to CCS, it came back with a vengeance traveling to his lungs. His locally advanced Stage III cancer was now confirmed as metastatic Stage IV with multiple lesions and surgical resection of the nodules was the only option offered at the time. Once again, he recovered well and scans demonstrated that the lung lesions were completely removed, however, more were to return in late 2023, triggering yet another invasive surgery. His spirit during this time remained strong, but those who knew him best could see the toll it was taking on his body. More scans, more lesions in early 2024 and Josh knew he had to try something different, something that may stave off the cancer without losing more lung tissue. After consulting with his oncologist in January 2024, he agreed to go on cabozantinib, a life-prolonging drug that had shown great potential in the metastatic CCS setting. Josh responded well for a few months albeit with some side effects that ultimately affected his sense of taste and appetite. His scan continued to look promising as the lesions shrunk, and he went back to his “cancer-free” lifestyle.
In April 2025, Josh began to dramatically lose weight, and a new back pain had emerged, one that would not subside with analgesics or physical/chiropractic therapy. Josh began to withdraw from his social life as his pain grew as he did not want to concern his friends and family. By July 2025, Josh had lost almost 30lbs and he was rushed to the ER to get updated scans. After much diagnostic workup, the scans showed that the cancer had spread…everywhere. His body was ravaged by the disease that had now spread into the abdominal and thoracic connective tissues, spleen, and into his bones which was causing catastrophic fractures. Everyone finally understood why he could not kick the pain, but he remained optimistic that his hero, his oncologist, would find a new solution. He was discharged from the hospital and put on nivolumab, an immunotherapy that was a last-ditch effort to prolong his days. Too little, too late, as Josh’s cancer did not respond, and his body had taken so many hits from which it could not recover.
Throughout July, friends and family provided him round-the-clock home care as his appetite, mind, and body faded. At the age of 48, Josh passed from metastatic CCS on August 10, 2025, surrounded by his loving family. Josh’s memory lives on in those that loved him. His passions were his family and friends, whom he loved fiercely, reading (especially Stephen King, a love he shared with his mother), unbelievably bad dancing, tacos, shed parties, and bourbon. He never missed crashing a girls’ night and somehow mastered the art of hibachi. There was no problem, large or small he wouldn’t help solve. Josh was our champion and our glue – loving, hilarious, and often extremely inappropriate in ways that became some of his most endearing qualities. A celebration of life will take place in Atlanta on October 19, 2025, where all who loved him are welcome to gather, remember, and honor the joy he brought into the world. For ever more, Josh, FSJ!
Karen
~In memory of Karen~
I am Karen Shapiro Jenks and I was diagnosed with clear cell sarcoma three times. My first diagnosis was in July 2010. During my pregnancy with my third son the year prior, I noticed a lump between my right ankle and achilles tendon. I had noticed a tiny bump in the same place several years prior but it didn’t hurt so I wrote it off as a bone spur. It grew fast during my pregnancy and my ankle remained swollen and painful. Now that I had given birth, I was able to have scans performed to find out what this was The doctors reviewed the scans but they could not determine what it was. They offered me a biopsy to find out but I declined, explaining that if they didn’t know what it was then I didn’t want a hole poked into it. I opted for surgery to remove the mass.
Before my surgery, I began searching the web for answers. I plugged my symptoms into WebMD and it came back with sarcoma. There was a short list of several different types and I read them all. They all seemed very similar, but clear cell sarcoma stood out because of its primary location being in the extremities. I also took note that, at the time of my research, it was the rarest form of sarcoma.
On the day of surgery, after being given anesthesia, I blurted out to my surgeon that I knew it was clear cell sarcoma. That was the last thing I remember saying before I went completely under.
I received a call from my surgeon about a week after my surgery. His first few words were difficult to hear, but honest and to the point, which I appreciated. He told me he wished he could tell me that I was wrong, but that I was right, it was clear cell sarcoma.
On August 6, 2010 I had a below knee amputation. I did very well as an amputee and was relieved to have gotten rid of the cancer. Several years later, I had a PET scan come back with a suspicious spot that was lighting up. I was told that it could be a lymph node and that they would track it over the next several scans. Each time it lit up hotter and got bigger. They insisted on a biopsy because the area it was in, behind my knee, was too dangerous for it to be completely removed.
The biopsy results came back within a few days. I remember my doctor calling me to tell me that it was a recurrence of clear cell sarcoma. This second diagnosis was sometime in 2015. I asked him what my options were and he said an above knee amputation. The first amputation did not work, so I wasn’t about to have another one. I decided, instead, to focus on my diet, take vitamins, juice and eat as much organic items as possible in order to boost my immune system. I did not tell my family the news. I just wanted to forget about cancer all together. I didn’t have cancer-versaries or other moments to give time and attention to the cancer. As far as I was concerned, cancer could take a seat at the table at MY Birthday celebration, not the other way around. I wanted to be in control of it and not let it control me. I was fighting for my life, fighting to live and I would not allow myself to think of it as a fight against cancer. That would give it too much credit, too much power over me. The only person who knew what was going on was my husband. He supported me in my decisions but wished that I would tell my family, but I couldn’t do that to them again.
In 2018, I was starting to have some numbness down my amputated leg. The same leg that now had a tumor behind the knee. I noticed the back of my knee swelling up a lot. One day I slipped on wet grass at my son’s soccer game and my prosthesis jerked out from under me pulling at my knee joint. When I was getting ready for bed and taking my leg off, my residual limb swelled up to twice its size so fast and became incredibly painful. I was rushed into surgery within days. At that point, there was no hiding the reality from my family. Surgery went as planned, but now I was an above-knee amputee with much more mobility issues.
In 2020, I was in a custody trial and my client was a nurse. During the trial I felt weird but brushed it off as stress. After it was over, I left the courtroom, leaned up against the giant marble wall and slowly started sliding down it. My client took my pulse and felt like I should go the ER. I didn’t want to but I did. They ran a bunch of tests and admitted me because one test showed elevated heart chemicals called troponin. After about a week in the hospital, they still could not find the cause, so they sent me home. Two weeks later, I started feeling really tired and weak, like my limbs were made of cement and everything required so much more effort than usual. I took my son to soccer practice that evening and just felt so exhausted. I also started feeling breathless, which was the way I had felt after court. It felt like I could breathe deep, but that what I was breathing was not oxygen.
I woke up to my son and his coach banging on my car windows. It took a lot of banging for them to wake me up. As my son and I drove home, I just prayed and prayed to make it back safely. Once we got home, I immediately went to bed. At 1:00am, I suddenly woke up feeling like I was suffocating. I didn’t even bother to wake up my husband because I felt like there was not enough time and instead, I called 911 without any hesitation. I knew I had to.
The ambulance arrived and took me to the hospital. I was starting to have really bad chest pains and was given nitroglycerin. It helped so much and I think it saved my life because the pain was so bad and I was not able to breathe.
I stayed in the hospital for almost one month. A special scan called a cardiac MRI was performed at some point. I was on pain medication so I am not clear on the chronology and list of things that were done to me. I do remember clearly that I was personally visited by the radiologist who informed me that I had several large masses around and in my heart. They would need to do a biopsy to confirm what it was but I already knew.
Open heart surgery was performed in early October. The biopsy took at least a week to get back and I was still in the hospital recovering from surgery when they informed me that it was, again, clear cell sarcoma. This was my third diagnosis.
Since then, I have lived an additional two years, which is two years longer that anybody expected. I’ve stuck to my healthy eating habits and juicing. My two oldest boys and I got matching tattoos. After I was fully recovered from surgery, I enrolled in two separate clinical trials at NIH in Maryland. One was atezolizumab, which is an immunotherapy and the next one was Durvalumab and Doxylrubison combined. This was immunotherapy plus chemotherapy. Neither really worked. The combination was able to slow down the growth of the tumors a little bit, which allowed me to still be within the “stable” range, but stable means up to 20% growth and I was running out of room in my chest for any more growth.
I am about to start a targeted therapy called cabozantinib. It shows a lot of promise since I have the overexpressed gene that it targets.
I have to say, as sick as I am, no one has given up on me. I will keep fighting for my life every day. Fighting to stay alive for my kids who are what I live for. When my time here is up, it is not because I lost my battle “TO” cancer. I will not give cancer my life. NEVER. When my time here is up, it is because God wanted me.
Update… Karen passed on September 21, 2022. She never stopped using her experience to make life better for other Clear Cell Sarcoma Warriors.
I am Karen Shapiro Jenks and I was diagnosed with clear cell sarcoma three times. My first diagnosis was in July 2010. During my pregnancy with my third son the year prior, I noticed a lump between my right ankle and achilles tendon. I had noticed a tiny bump in the same place several years prior but it didn’t hurt so I wrote it off as a bone spur. It grew fast during my pregnancy and my ankle remained swollen and painful. Now that I had given birth, I was able to have scans performed to find out what this was The doctors reviewed the scans but they could not determine what it was. They offered me a biopsy to find out but I declined, explaining that if they didn’t know what it was then I didn’t want a hole poked into it. I opted for surgery to remove the mass.
Before my surgery, I began searching the web for answers. I plugged my symptoms into WebMD and it came back with sarcoma. There was a short list of several different types and I read them all. They all seemed very similar, but clear cell sarcoma stood out because of its primary location being in the extremities. I also took note that, at the time of my research, it was the rarest form of sarcoma.
On the day of surgery, after being given anesthesia, I blurted out to my surgeon that I knew it was clear cell sarcoma. That was the last thing I remember saying before I went completely under.
I received a call from my surgeon about a week after my surgery. His first few words were difficult to hear, but honest and to the point, which I appreciated. He told me he wished he could tell me that I was wrong, but that I was right, it was clear cell sarcoma.
On August 6, 2010 I had a below knee amputation. I did very well as an amputee and was relieved to have gotten rid of the cancer. Several years later, I had a PET scan come back with a suspicious spot that was lighting up. I was told that it could be a lymph node and that they would track it over the next several scans. Each time it lit up hotter and got bigger. They insisted on a biopsy because the area it was in, behind my knee, was too dangerous for it to be completely removed.
The biopsy results came back within a few days. I remember my doctor calling me to tell me that it was a recurrence of clear cell sarcoma. This second diagnosis was sometime in 2015. I asked him what my options were and he said an above knee amputation. The first amputation did not work, so I wasn’t about to have another one. I decided, instead, to focus on my diet, take vitamins, juice and eat as much organic items as possible in order to boost my immune system. I did not tell my family the news. I just wanted to forget about cancer all together. I didn’t have cancer-versaries or other moments to give time and attention to the cancer. As far as I was concerned, cancer could take a seat at the table at MY Birthday celebration, not the other way around. I wanted to be in control of it and not let it control me. I was fighting for my life, fighting to live and I would not allow myself to think of it as a fight against cancer. That would give it too much credit, too much power over me. The only person who knew what was going on was my husband. He supported me in my decisions but wished that I would tell my family, but I couldn’t do that to them again.
In 2018, I was starting to have some numbness down my amputated leg. The same leg that now had a tumor behind the knee. I noticed the back of my knee swelling up a lot. One day I slipped on wet grass at my son’s soccer game and my prosthesis jerked out from under me pulling at my knee joint. When I was getting ready for bed and taking my leg off, my residual limb swelled up to twice its size so fast and became incredibly painful. I was rushed into surgery within days. At that point, there was no hiding the reality from my family. Surgery went as planned, but now I was an above-knee amputee with much more mobility issues.
In 2020, I was in a custody trial and my client was a nurse. During the trial I felt weird but brushed it off as stress. After it was over, I left the courtroom, leaned up against the giant marble wall and slowly started sliding down it. My client took my pulse and felt like I should go the ER. I didn’t want to but I did. They ran a bunch of tests and admitted me because one test showed elevated heart chemicals called troponin. After about a week in the hospital, they still could not find the cause, so they sent me home. Two weeks later, I started feeling really tired and weak, like my limbs were made of cement and everything required so much more effort than usual. I took my son to soccer practice that evening and just felt so exhausted. I also started feeling breathless, which was the way I had felt after court. It felt like I could breathe deep, but that what I was breathing was not oxygen.
I woke up to my son and his coach banging on my car windows. It took a lot of banging for them to wake me up. As my son and I drove home, I just prayed and prayed to make it back safely. Once we got home, I immediately went to bed. At 1:00am, I suddenly woke up feeling like I was suffocating. I didn’t even bother to wake up my husband because I felt like there was not enough time and instead, I called 911 without any hesitation. I knew I had to.
The ambulance arrived and took me to the hospital. I was starting to have really bad chest pains and was given nitroglycerin. It helped so much and I think it saved my life because the pain was so bad and I was not able to breathe.
I stayed in the hospital for almost one month. A special scan called a cardiac MRI was performed at some point. I was on pain medication so I am not clear on the chronology and list of things that were done to me. I do remember clearly that I was personally visited by the radiologist who informed me that I had several large masses around and in my heart. They would need to do a biopsy to confirm what it was but I already knew.
Open heart surgery was performed in early October. The biopsy took at least a week to get back and I was still in the hospital recovering from surgery when they informed me that it was, again, clear cell sarcoma. This was my third diagnosis.
Since then, I have lived an additional two years, which is two years longer that anybody expected. I’ve stuck to my healthy eating habits and juicing. My two oldest boys and I got matching tattoos. After I was fully recovered from surgery, I enrolled in two separate clinical trials at NIH in Maryland. One was atezolizumab, which is an immunotherapy and the next one was Durvalumab and Doxylrubison combined. This was immunotherapy plus chemotherapy. Neither really worked. The combination was able to slow down the growth of the tumors a little bit, which allowed me to still be within the “stable” range, but stable means up to 20% growth and I was running out of room in my chest for any more growth.
I am about to start a targeted therapy called cabozantinib. It shows a lot of promise since I have the overexpressed gene that it targets.
I have to say, as sick as I am, no one has given up on me. I will keep fighting for my life every day. Fighting to stay alive for my kids who are what I live for. When my time here is up, it is not because I lost my battle “TO” cancer. I will not give cancer my life. NEVER. When my time here is up, it is because God wanted me.
Update… Karen passed on September 21, 2022. She never stopped using her experience to make life better for other Clear Cell Sarcoma Warriors.
Kinsley
It’s been about a year since my 10-year-old daughter Kinsley was diagnosed with clear cell sarcoma. Our lives turned upside down when a large callous on her foot turned out to be cancer. My warrior princess has been fighting super hard and shown me what true strength and courage look like. She has had her share of obstacles with multiple surgeries, radiation, immunotherapy and treatment induced GBS . We are happy to report that her last PET scan showed no detectable disease. We are blessed to have an amazing support system like this group. September is Childhood Cancer Awareness month and our heart goes out to the many children and their families battling cancer. ~ Kimberly Hall (mom)
Kristen
~In memory of Kristen~
I was diagnosed with CCS in 2009 back when my youngest was a baby. CCS has been in my liver since 2013 and without a lot of luck, treatments for other cancers that have miraculously helped me, and so many dedicated Dr’s I wouldn’t be here today. Although I know my chances aren’t great I continue to fight every day and say yes to any treatment available in hopes that some day there will be THE treatment that will cure me.
I was diagnosed with CCS in 2009 back when my youngest was a baby. CCS has been in my liver since 2013 and without a lot of luck, treatments for other cancers that have miraculously helped me, and so many dedicated Dr’s I wouldn’t be here today. Although I know my chances aren’t great I continue to fight every day and say yes to any treatment available in hopes that some day there will be THE treatment that will cure me.
Kristina
~In memory of Kristina~
"I try not to focus on the things I can’t do, but on the things I can,” Kristina said while we were eating our breakfast together. I’m her Dad—the one who is supposed to share the wisdom of an adult with my 8-year-old daughter who was fighting cancer. Because of her surgery, and it was quite invasive, she was unable to do many of the things she loved: play soccer, gymnastics, karate, among other things. Now, with her right arm immobilized, she had to learn new things. Could there be anything new she could do with one arm? Especially her less dominant arm?
While we were eating our breakfast that morning (I think it was Honey Nut Cheerios), I told her how proud I was of her. Although she couldn’t do many of those things anymore, she did not complain. I think I would have. And her reply astonished me. It astonished the whole family: “I try not to focus on the things I can’t do…” she said. How many times do we focus on the negatives? We tell ourselves that things will be bad—that life will never be as good as it once was or could have been. She continued, “but on the things I can.” Kristina taught us how to focus on the positive. She showed us that there is always some kind of positive no matter how negative life can get. This was, surely, the Holy Spirit at work in her.
About 3 months later, Kristina swam in her first swim meet.
With one arm.
Against 3 other girls her age.
She won.
Kristina Rae Barrett
5/30/2002 – 6/14/2014
(Shared by Chad Barrett, dad)
"I try not to focus on the things I can’t do, but on the things I can,” Kristina said while we were eating our breakfast together. I’m her Dad—the one who is supposed to share the wisdom of an adult with my 8-year-old daughter who was fighting cancer. Because of her surgery, and it was quite invasive, she was unable to do many of the things she loved: play soccer, gymnastics, karate, among other things. Now, with her right arm immobilized, she had to learn new things. Could there be anything new she could do with one arm? Especially her less dominant arm?
While we were eating our breakfast that morning (I think it was Honey Nut Cheerios), I told her how proud I was of her. Although she couldn’t do many of those things anymore, she did not complain. I think I would have. And her reply astonished me. It astonished the whole family: “I try not to focus on the things I can’t do…” she said. How many times do we focus on the negatives? We tell ourselves that things will be bad—that life will never be as good as it once was or could have been. She continued, “but on the things I can.” Kristina taught us how to focus on the positive. She showed us that there is always some kind of positive no matter how negative life can get. This was, surely, the Holy Spirit at work in her.
About 3 months later, Kristina swam in her first swim meet.
With one arm.
Against 3 other girls her age.
She won.
Kristina Rae Barrett
5/30/2002 – 6/14/2014
(Shared by Chad Barrett, dad)
Lisa
’m a 62-year-old wife, mom of 3, grandma of 2, and a nurse. In the summer of 2020, at 57, I was diagnosed with CCS in front of my hip after first being told it was metastatic melanoma. Being a nurse with a background in the ED, critical care and administration for over 40 years gave me enough knowledge to drive my poor oncologist crazy :-) She had to put up with my endless questioning of the inconsistencies with melanoma, which thankfully led her to order genomic testing. That’s how we found CCS.
After a follow-up surgery to get clear margins and check lymph nodes, I went through 25 radiation sessions. Once my head stopped spinning, I dove into researching CCS and haven’t stopped. I LOVE research! I quickly realized the need not only for a treatment and cure for CCS, but for a standard of care, more research and funding, and education for our healthcare team, as well as support for our CCS families. After reaching out to Lennie Woods, Executive Director of the CCS Foundation, I found a way to give back to our CCS family through patient advocacy within the CCS Foundation.
My family and I are incredibly grateful to be NED for the past 5 years, despite a few scares along the way. Like everyone in our CCS “family”, I know the anxiety that comes with every scan. But those scans also remind me how precious this time is, and how important it is to focus on what truly matters: being with family and friends. So, with my husband, Larry, by my side, we frequently travel to see our family, friends and the world.
After a follow-up surgery to get clear margins and check lymph nodes, I went through 25 radiation sessions. Once my head stopped spinning, I dove into researching CCS and haven’t stopped. I LOVE research! I quickly realized the need not only for a treatment and cure for CCS, but for a standard of care, more research and funding, and education for our healthcare team, as well as support for our CCS families. After reaching out to Lennie Woods, Executive Director of the CCS Foundation, I found a way to give back to our CCS family through patient advocacy within the CCS Foundation.
My family and I are incredibly grateful to be NED for the past 5 years, despite a few scares along the way. Like everyone in our CCS “family”, I know the anxiety that comes with every scan. But those scans also remind me how precious this time is, and how important it is to focus on what truly matters: being with family and friends. So, with my husband, Larry, by my side, we frequently travel to see our family, friends and the world.
Luke
~In memory of Luke~
Luke Morse was a bright, driven, and compassionate young man who loved his dog, small children, video games, chess, mathematics, and debate. He had his sights set on becoming an engineer and approached life with eyes wide opened, filled with curiosity, generosity, and a hope for the future.
In 2021, during the first semester of his senior year in high school, Luke was diagnosed with clear cell sarcoma—and suddenly, at the age of 17, he was faced with an unimagined future. Despite surgeries, the grueling treatments, and uncertainty, Luke met each day with resilience and hope; he never complained. Six months before his passing, he created a wooden sign that captures remarkable wisdom from an eighteen year old kid in the face of the ominous pattern of this disease. It reads LIVE LIFE BOLD. As he stepped out of this life, he handed us this simple message for us to carry on with hope, courage, resilience, and tenacity for a future of a life well lived. - Robert and Sheila Morse (parents)
Luke Morse was a bright, driven, and compassionate young man who loved his dog, small children, video games, chess, mathematics, and debate. He had his sights set on becoming an engineer and approached life with eyes wide opened, filled with curiosity, generosity, and a hope for the future.
In 2021, during the first semester of his senior year in high school, Luke was diagnosed with clear cell sarcoma—and suddenly, at the age of 17, he was faced with an unimagined future. Despite surgeries, the grueling treatments, and uncertainty, Luke met each day with resilience and hope; he never complained. Six months before his passing, he created a wooden sign that captures remarkable wisdom from an eighteen year old kid in the face of the ominous pattern of this disease. It reads LIVE LIFE BOLD. As he stepped out of this life, he handed us this simple message for us to carry on with hope, courage, resilience, and tenacity for a future of a life well lived. - Robert and Sheila Morse (parents)
Meghan
My name is Meghan. I’m a wife, mom, and nurse, and I was diagnosed with cancer at 27. I went through standard treatment, which involved radiation and surgical resection, but unfortunately relapsed three years later. After relapsing, we decided that the safest option to prevent future recurrences of the disease was for me to opt for the amputation of my affected limb.
In October 2016, I had my left leg amputated above the knee. There have been obvious ups and downs—and there still are, but I’ve enjoyed getting back to my normal life. Seven months after surgery, I returned to work as an ER nurse and still work as a nurse today. I work out regularly, enjoy traveling with my family both domestically and internationally, and spend part of my summers working as a sleepaway camp nurse.
This decision, though not an easy one, has given me the gift of raising my son and celebrating life.
In October 2016, I had my left leg amputated above the knee. There have been obvious ups and downs—and there still are, but I’ve enjoyed getting back to my normal life. Seven months after surgery, I returned to work as an ER nurse and still work as a nurse today. I work out regularly, enjoy traveling with my family both domestically and internationally, and spend part of my summers working as a sleepaway camp nurse.
This decision, though not an easy one, has given me the gift of raising my son and celebrating life.
Mike
~In memory of Mike~
Our son was such a blessing from above. The pain of watching CCS take his life and the lives of other young adults and kids is indescribable. The wound left behind never heals. It just throbs a little less or more on any given day. As soon as Michael was diagnosed with CCS he began reaching out on social media. His efforts paid off in finding a young mother also infected with the same evil disease. Despite the rarity, the group slowly grew. What developed was the most informative and supportive group there was for people with CCS. We boasted that our group knew more than the medical professionals. Sadly, because CCS is so rare, that statement is true. Its not worth the medical field’s time and money to research and find a cure. Even though some advancements have been made, it’s been too little too late for many.More has to be done to end the nightmares of parents, siblings and wives losing their child, brother, soulmate to CCS. More has to be done so that twin 6 year old girls don’t lose their dad needlessly.On November 23, 2009, prior to having his first surgery for CCS he wrote: “I have prepared all my life for a situation like this. It is game time and I am prepared for battle.” In his blog on July 20, 2015 Michael wrote: “My story may be sad, but I hope everyone can find something positive and appreciate the GOOD things in life.”March 6, 1980 - February 14, 2016
Our son was such a blessing from above. The pain of watching CCS take his life and the lives of other young adults and kids is indescribable. The wound left behind never heals. It just throbs a little less or more on any given day. As soon as Michael was diagnosed with CCS he began reaching out on social media. His efforts paid off in finding a young mother also infected with the same evil disease. Despite the rarity, the group slowly grew. What developed was the most informative and supportive group there was for people with CCS. We boasted that our group knew more than the medical professionals. Sadly, because CCS is so rare, that statement is true. Its not worth the medical field’s time and money to research and find a cure. Even though some advancements have been made, it’s been too little too late for many.More has to be done to end the nightmares of parents, siblings and wives losing their child, brother, soulmate to CCS. More has to be done so that twin 6 year old girls don’t lose their dad needlessly.On November 23, 2009, prior to having his first surgery for CCS he wrote: “I have prepared all my life for a situation like this. It is game time and I am prepared for battle.” In his blog on July 20, 2015 Michael wrote: “My story may be sad, but I hope everyone can find something positive and appreciate the GOOD things in life.”March 6, 1980 - February 14, 2016
Natalie
~In memory of Natalie~
Our daughter Natalie, who was first diagnosed with Clear Cell Sarcoma at 17, died six years ago at the age of 21. As a teenager preparing to start her senior year of high school, being told you have a rare cancer with no treatment plan or cure could make anyone feel hopeless.
Not Natalie. She approached surgeries and treatments with courage and determination, believing she could be the one to beat it. She didn’t let cancer stop her from finishing high school or pursuing college.
It began with fatigue and pain in her lower abdomen. After many tests and scans, doctors discovered a mass in her GI tract and performed surgery. By then, the cancer had already metastasized to her liver. Natalie underwent four different types of treatment, none specific to CCS. She even requested that her tumor tissue be donated to help find a cure, showing her selflessness and dedication to helping others facing this disease.
She touched everyone’s life with her grace, positivity, and love. She taught us the importance of relationships and experiences, showing remarkable strength even in the hardest moments. - Michael & Sandy Staffieri (parents)
Our daughter Natalie, who was first diagnosed with Clear Cell Sarcoma at 17, died six years ago at the age of 21. As a teenager preparing to start her senior year of high school, being told you have a rare cancer with no treatment plan or cure could make anyone feel hopeless.
Not Natalie. She approached surgeries and treatments with courage and determination, believing she could be the one to beat it. She didn’t let cancer stop her from finishing high school or pursuing college.
It began with fatigue and pain in her lower abdomen. After many tests and scans, doctors discovered a mass in her GI tract and performed surgery. By then, the cancer had already metastasized to her liver. Natalie underwent four different types of treatment, none specific to CCS. She even requested that her tumor tissue be donated to help find a cure, showing her selflessness and dedication to helping others facing this disease.
She touched everyone’s life with her grace, positivity, and love. She taught us the importance of relationships and experiences, showing remarkable strength even in the hardest moments. - Michael & Sandy Staffieri (parents)
CCS Patient & Family Resources
Clear cell sarcoma (CCS) is an ultra-rare cancer with no standardized treatment guidelines. To help patients
and families better understand this disease, the Clear Cell Sarcoma Foundation has created a set of patient-focused resources.
These pages explain, in plain language, what is currently known about CCS, how different therapies work, possible side effects, and important topics such as disease spread (metastasis) and surveillance imaging. Resources also include a one-page doctor discussion sheet on liver metastases, summarizing recent international guidance for patients whose disease has spread to the liver. In addition, a detailed white paper provides a comprehensive review of chemotherapy in CCS.
It is important to note that surgery is still the best treatment for clear cell sarcoma whenever possible. Other treatments, such as systemic therapies, may be used when surgery isn't possible, when clear margins are not achieved, or if the cancer has spread, but these options have shown only limited effectiveness.
Disclaimer: The Clear Cell Sarcoma Foundation shares information to help patients and families understand what is currently known from the medical literature and expert opinion. This information is educational only and is not medical advice. It should not be used to diagnose a condition, choose a treatment, or replace guidance from your medical team. Always talk with your oncologist or other qualified healthcare provider about your specific situation and any decisions about care.
For questions about these resources, please contact CCSF's Scientific Director, Kelley Argraves, at kelley@clearcellsarcoma.org.
Expanded Resource
This white paper is an evidence-based review of chemotherapy in CCS that examines available data on outcomes and harms, explains why chemotherapy persists despite limited efficacy, and details the ethics of informed consent. It provides practical information to support decision-making for clinicians and patients while recommending steps toward disease-specific treatment guidelines and expanded access to more appropriate alternatives.
Newly Diagnosed?
If you've recently been diagnosed with Clear Cell Sarcoma, you may be feeling lost, overwhelmed, and uncertain about where to begin. While Clear Cell Sarcoma is an ultra-rare cancer, a quick online search can yield an overwhelming amount of information. Keep in mind that not everything you read is accurate. We’ve compiled a set of trusted resources and support options from reliable sources to help guide you through this journey.
Remember, you are not alone.
Note: Clear Cell Sarcoma is a different cancer than Clear Cell Sarcoma of the Kidney.
Do Your Research
Now that you have this new diagnosis, you are likely to begin researching on your own. What you will find are difficult-to-read publications filled with words that you have never needed to know before. We have included some of those words with definitions below for you. This is certainly not a comprehensive list, but this will get you started. Please remember that it takes time to absorb all of this new information, but you will get it. Don’t hesitate to contact us or others for support. It is good to have a loved one prepared to advocate with you. You are not alone.
The National Comprehensive Cancer Network® (NCCN®) provides patient and physician guidelines for several cancers. Clear Cell Sarcoma (CCS) is a type of soft tissue sarcoma (STS). The NCCN® Soft Tissue Sarcoma Guidelines contain general information for sarcoma patients. The only CCS specific info is that CCS generally doesn't respond to current chemotherapy.
Since CCS typically is diagnosed in adolescents and young adults (AYA), a link to the NCCN Guidelines to AYA is provided.
Find A
Sarcoma
Treatment Center
Clear Cell Sarcoma is an ultra rare cancer that requires the expertise of sarcoma specialists found at Sarcoma Centers.
Second Opinions
It's important when you've been diagnosed with something rare to get a second opinion, sometimes a third"
Dr. Andrea Hayes-Jordan MD
Donate Your Tissue
We have partnered with Pattern.org who is available to assist you in donating at NO cost to you.
It is very difficult to obtain fresh surgical tissue with such a rare disease and so few patients, but you can change that. Pattern.org needs fresh Clear Cell Sarcoma tissue to create a sustainable resource. It is easy and only takes a few minutes of your time to fill in an online consent form at Pattern.org and they will handle all the arrangements, working with your surgical institution.
Due to several regulatory issues involved with transporting living tissue across the border, Pattern.org can only accept tissue from the contiguous U.S. currently.
If you don’t have a surgery date yet you can still sign up on Pattern.org and leave the date blank.
If you have any questions, please reach out to the CCS Foundation or Pattern.org
Tissue is one of the critical issues in any rare disease.
What would be even better, is anyone who can connect with the Clear Cell Sarcoma Foundation (Saras Cure) and be able to make sure their tissue is processed appropriately from the beginning. It's invaluable"
- Dr. Kevin B. Jones, MD
Support Resources
The Sarcoma Alliance has a wealth of resources for sarcoma patients:
Looking for a Clinical Trial?
A clinical trial is testing the safety and effectiveness of a new medical treatment or intervention.
When looking for a clinical trial, understand that many trials that will permit Clear Cell Sarcoma patients are really testing a drug or treatment for a different type of cancer.
Focus on trials testing drugs or treatments specifically for
Clear Cell Sarcoma patients.
Specifically for CCS pts!
Patient Registry
xCures Observational Study - Accelerate Clear Cell Sarcoma Research
The Clear Cell Sarcoma Foundation has partnered with xCures, a pioneer in healthcare data management, to gather medical information from Clear Cell Sarcoma patients into structured, regulatory-grade clinical data. The xCures platform is a powerful tool for collecting and organizing medical data to study the natural history of Clear Cell Sarcoma.
In an observational study, xCures gathers medical records of people with Clear Cell Sarcoma and organizes that information to generate real-world data (RWD) and real-world evidence (RWE) that can be used by scientists and expert clinician scientists.
Clear Cell Sarcoma
Specialist Database
Finding experienced sarcoma specialists can be a challenge due to the exceptionally rare nature of Clear Cell Sarcoma. To support the CCS community, CCSF has created this community-driven comprehensive database.
We deeply appreciate contributions from our community members. However, we encourage you to conduct thorough research and ask important questions before choosing a specialist. CCSF does not endorse or verify the accuracy of these submissions.
Have a CCS specialist you'd like to add? Use the button below to share their information.
This database is best viewed on a computer.
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