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#MeetSomeoneRare
#RareDiseaseDay (Feb. 28th)
Jasmine is 31 yrs old from Hampton, VA. She was diagnosed with a #desmoid tumor in her left brachial plexus in 2016. Desmoid tumors are rare, connective tissue tumors affecting 5-6 per every 1 million people. Jasmine was misdiagnosed 3 times- a common occurrence for desmoid tumor patients. Desmoid tumors are dangerous when not treated as cancer. They may become life threatening when they constrict vital organs such as kidneys, lungs or intestines and compress major arteries and veins causing chronic pain.
With the help of the The Desmoid Tumor Research Foundation- DTRF, significant progress in research has been made, but there is currently no FDA-approved treatment for desmoid tumors. So far, Jasmine has undergone one surgery, radiation and multiple chemotherapy treatments to fight the first tumor. She went into remission in February 2019.
Over the past three months Jasmine began experiencing intermittent pain. Her previous oncologist from VCU/MCV in Richmond, VA reached out to oncology specialists at Emory Cancer Institute in Atlanta, Georgia where Jasmine and I currently reside. Jasmine received a phone call in less than 48 hours and an MRI was scheduled. The MRI became emergent due to Jasmine experiencing excruciating pain that she verbalized felt worse than before along with a sudden decrease with range of motion with her left arm again. Then there was a pause with obtaining the MRI because a special imaging machine was needed because on January 6, 2020 Jasmine was diagnosed with having PFO (Patent Foramen Ovale) a hole in the heart, a birth defect that for Jasmine was undetected from birth and yearly health and sports physicals. But after having fainting episodes, dizziness, shortness of breath, she became difficult to wake from her from sleep during an ER visit and a walking pulse ox of 79% oxygen saturation led to an echocardiogram which discovered the blood leak, the unconnected valve, and a hole in her heart (that needed to be closed together with titanium plates). Thankfully, an MRI machine became available very soon at another Emory hospital.
On February 17, 2021 a radiologist gave the report, a new tumor has started growing aggressively in her left chest wall. Like the previous tumor, it has webbing growing from it that’s like intertwined vines, squeezing muscles, tendons, veins and arteries; therefore making the tumor inoperable and very painful. The oncology team at Emory Cancer Institute has had good success with treating Desmoid sarcoma tumors. The oncology team has been very supportive and informative in calling us after office hours to answer questions and have shed tears along with us.
Unfortunately, her medical insurance is not accepted at this hospital that specializes in treatment of these rare tumors and her medical bills are quickly piling up. Jasmine is set to begin oral chemotherapy toward the end of March 2021, which will require her to have blood work drawn every two weeks to closely monitor her kidney function and other organs while on this chemotherapy drug and pain meds. Jasmine is trying hard to get financial assistance from Emory Cancer Institute and other resources. Jasmine is trying her best to stay afloat as she still has a substantially large amount of medical debt from her first desmoid tumor.
This is why I’m setting up this fund on her behalf. I continue to thank God for being mighty not just in Jasmine’s life but in the lives of all those reading this. We thank you all for your continual prayers, friendship, and support and we are believing God for another miracle.
#RareDiseaseDay (Feb. 28th)
Jasmine is 31 yrs old from Hampton, VA. She was diagnosed with a #desmoid tumor in her left brachial plexus in 2016. Desmoid tumors are rare, connective tissue tumors affecting 5-6 per every 1 million people. Jasmine was misdiagnosed 3 times- a common occurrence for desmoid tumor patients. Desmoid tumors are dangerous when not treated as cancer. They may become life threatening when they constrict vital organs such as kidneys, lungs or intestines and compress major arteries and veins causing chronic pain.
With the help of the The Desmoid Tumor Research Foundation- DTRF, significant progress in research has been made, but there is currently no FDA-approved treatment for desmoid tumors. So far, Jasmine has undergone one surgery, radiation and multiple chemotherapy treatments to fight the first tumor. She went into remission in February 2019.
Over the past three months Jasmine began experiencing intermittent pain. Her previous oncologist from VCU/MCV in Richmond, VA reached out to oncology specialists at Emory Cancer Institute in Atlanta, Georgia where Jasmine and I currently reside. Jasmine received a phone call in less than 48 hours and an MRI was scheduled. The MRI became emergent due to Jasmine experiencing excruciating pain that she verbalized felt worse than before along with a sudden decrease with range of motion with her left arm again. Then there was a pause with obtaining the MRI because a special imaging machine was needed because on January 6, 2020 Jasmine was diagnosed with having PFO (Patent Foramen Ovale) a hole in the heart, a birth defect that for Jasmine was undetected from birth and yearly health and sports physicals. But after having fainting episodes, dizziness, shortness of breath, she became difficult to wake from her from sleep during an ER visit and a walking pulse ox of 79% oxygen saturation led to an echocardiogram which discovered the blood leak, the unconnected valve, and a hole in her heart (that needed to be closed together with titanium plates). Thankfully, an MRI machine became available very soon at another Emory hospital.
On February 17, 2021 a radiologist gave the report, a new tumor has started growing aggressively in her left chest wall. Like the previous tumor, it has webbing growing from it that’s like intertwined vines, squeezing muscles, tendons, veins and arteries; therefore making the tumor inoperable and very painful. The oncology team at Emory Cancer Institute has had good success with treating Desmoid sarcoma tumors. The oncology team has been very supportive and informative in calling us after office hours to answer questions and have shed tears along with us.
Unfortunately, her medical insurance is not accepted at this hospital that specializes in treatment of these rare tumors and her medical bills are quickly piling up. Jasmine is set to begin oral chemotherapy toward the end of March 2021, which will require her to have blood work drawn every two weeks to closely monitor her kidney function and other organs while on this chemotherapy drug and pain meds. Jasmine is trying hard to get financial assistance from Emory Cancer Institute and other resources. Jasmine is trying her best to stay afloat as she still has a substantially large amount of medical debt from her first desmoid tumor.
This is why I’m setting up this fund on her behalf. I continue to thank God for being mighty not just in Jasmine’s life but in the lives of all those reading this. We thank you all for your continual prayers, friendship, and support and we are believing God for another miracle.
Organizer and beneficiary
Jasmine Sutherlin
Beneficiary