Ariana's battle with LeioMyoSarcoma
Donation protected
Ariana Nicole is an absolutely remarkable 5 year old girl who was diagnosed with Leiomyosarcoma (LMS) on May 4th of 2017. LMS is an incurable, aggressive soft tissue cancer derived from smooth muscle cells, and is extremely rare in children, and nearly non-existent in toddlers.
Her journey first began when we found what turned out to be a 5cm tumor in her upper right thigh, just along the crease of her buttock. We took her in to see her primary care physician and they immediately did an ultrasound and a xray of the area, then sent her to the pediatric intensive care unit to be admitted and sedated for an MRI scan that same afternoon. She was then sent to receive further care from the orthopedic specialty team at UW Madison.
In the months following the discovery of her primary tumor, she would have many blood tests done, her eyes checked for retinoblastoma, a CT scan of her chest, a needle biopsy, and an open biopsy. Both biopsies done at UW initially came back as Leiomyoma, so the specialist there removed the tumor (cauterizing it from the ischium portion of her pelvis) with unclear margins, having assumed that the tumor was benign due to the initial results. By the time the tumor was removed it had grown, causing Ariana to become unable to walk unassisted.
A few weeks after the removal we received the shock of a lifetime with the final diagnoses being Leiomyosarcoma, confirmed by Dr. Fletcher in Boston.
At that moment our whole world came crashing down around us. When her journey first began we were given no hope at all. We were told to start preparing ourselves for the worst. We were then given all the hope in the world when we received not one, but two benign results. Followed by a sudden abruption in our celebration with a whole new uncertainty, a cancer that this particular team of doctors had never seen in a patient as young as her.
Upon receiving her diagnoses we immediately had her care transferred to the Mayo Clinic in Rochester where she has gained an astounding new team that consists of a pediatric sarcoma specialist, an second oncologist, a team of oncological orthopedic specialists, a team of plastic surgeons, as well as many other significantly amazing people!
The orthopedic specialist at UW removed the tumor with unclear margins, which we now know left cancerous cells behind. Due to this her new orthopedic specialty team was forced to do a reexcision of the area, where they removed regrowth, the original tumor bed, as well as the ischium portion of her pelvis. The plastic surgery team then had to make an incision on her inner thigh, from her groin all the way down to her knee, remove the muscle, and place it in the primary tumor area where they removed the cancer, to help reconstruct and fill in the crater that these surgeries have caused her. The pathology from her latest surgery shows live cancerous cells, as well as many dead ones caused by the cauterization done during the initial removal.
Her blood cell counts have also been extremely low since her surgery and she is currently anemic as well as neutropenic. Her doctors have yet to find the exact cause of her abnormal blood counts so she is required to attend multiple appointments weekly as well as blood draws and has also received one iron infusion so far and will have to have at least 2 more to get her iron back to where it needs to be. She has been so brave and resilient throughout this entire experience. She doesn't deserve everything she's had to endure over these past 2 years, or what she's going to have to endure in the following months and years to come, and it absolutely breaks my heart..
We have fallen so far behind on all of our bills due to the amount of time we have had to spend out of state in order to provide Ariana with the treatment she needs. Our health insurance also does not cover all the expenses associated with her medical care, so her medical bills are steadily adding up as well and we so desperately need your help.
Every share and donation that we receive will be truly appreciated more than words can express!
Thank you so much for taking time to read my sweet girls story.
With your love and support, she doesn't have to fight this alone.
Her journey first began when we found what turned out to be a 5cm tumor in her upper right thigh, just along the crease of her buttock. We took her in to see her primary care physician and they immediately did an ultrasound and a xray of the area, then sent her to the pediatric intensive care unit to be admitted and sedated for an MRI scan that same afternoon. She was then sent to receive further care from the orthopedic specialty team at UW Madison.
In the months following the discovery of her primary tumor, she would have many blood tests done, her eyes checked for retinoblastoma, a CT scan of her chest, a needle biopsy, and an open biopsy. Both biopsies done at UW initially came back as Leiomyoma, so the specialist there removed the tumor (cauterizing it from the ischium portion of her pelvis) with unclear margins, having assumed that the tumor was benign due to the initial results. By the time the tumor was removed it had grown, causing Ariana to become unable to walk unassisted.
A few weeks after the removal we received the shock of a lifetime with the final diagnoses being Leiomyosarcoma, confirmed by Dr. Fletcher in Boston.
At that moment our whole world came crashing down around us. When her journey first began we were given no hope at all. We were told to start preparing ourselves for the worst. We were then given all the hope in the world when we received not one, but two benign results. Followed by a sudden abruption in our celebration with a whole new uncertainty, a cancer that this particular team of doctors had never seen in a patient as young as her.
Upon receiving her diagnoses we immediately had her care transferred to the Mayo Clinic in Rochester where she has gained an astounding new team that consists of a pediatric sarcoma specialist, an second oncologist, a team of oncological orthopedic specialists, a team of plastic surgeons, as well as many other significantly amazing people!
The orthopedic specialist at UW removed the tumor with unclear margins, which we now know left cancerous cells behind. Due to this her new orthopedic specialty team was forced to do a reexcision of the area, where they removed regrowth, the original tumor bed, as well as the ischium portion of her pelvis. The plastic surgery team then had to make an incision on her inner thigh, from her groin all the way down to her knee, remove the muscle, and place it in the primary tumor area where they removed the cancer, to help reconstruct and fill in the crater that these surgeries have caused her. The pathology from her latest surgery shows live cancerous cells, as well as many dead ones caused by the cauterization done during the initial removal.
Her blood cell counts have also been extremely low since her surgery and she is currently anemic as well as neutropenic. Her doctors have yet to find the exact cause of her abnormal blood counts so she is required to attend multiple appointments weekly as well as blood draws and has also received one iron infusion so far and will have to have at least 2 more to get her iron back to where it needs to be. She has been so brave and resilient throughout this entire experience. She doesn't deserve everything she's had to endure over these past 2 years, or what she's going to have to endure in the following months and years to come, and it absolutely breaks my heart..
We have fallen so far behind on all of our bills due to the amount of time we have had to spend out of state in order to provide Ariana with the treatment she needs. Our health insurance also does not cover all the expenses associated with her medical care, so her medical bills are steadily adding up as well and we so desperately need your help.
Every share and donation that we receive will be truly appreciated more than words can express!
Thank you so much for taking time to read my sweet girls story.
With your love and support, she doesn't have to fight this alone.
Organizer
Mariah Massey
Organizer
Albuquerque, NM
