Nov 14, 2017 Latest post:
Jan 11, 2018
Ariana Nicole is an absolutely remarkable 4 year old girl who was diagnosed with Stage 2b LeioMyoSarcoma (LMS) of the pelvis - on May 4th, 2017. LMS is a very aggressive, incurable soft tissue cancer derived from smooth muscle cells. It 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 on March 1st, 2017, and they immediately did an ultrasound and a x-ray 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 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 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 gained an astounding team that consisted 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 not only left cancerous cells behind, but also potentially spread cancer cells throughout her little body. Due to this her new orthopedic specialty team was forced to do a re-excision of the area, where they removed the original tumor bed and the ischium portion of her pelvis, along with live cancerous cells.
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 one of her thigh muscles, and place it in the area where they removed her tumor, ischium, and surrounding muscles to help reconstruct and fill in the crater that these surgeries have caused her.
LeioMyoSarcoma is chemotherapy, immunotherapy, and radiotherapy resistant. Additional therapies are not typically recommended by any Sarcoma Specialists unless the cancer has reached Stage 4 and the cells have metastasized elsewhere in the body. Surgery is always the best option when it comes to LeioMyoSarcoma, although surgery is not typically an option once the cancer has spread.
Ariana Nicole's cancer treatment plan so far has only involved surgeries, as well as observation but unfortunately her blood cell counts have remained extremely low since her resection surgery and she has been battling anemia as well as neutropenia since June 2017. 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 had to receive multiple iron infusions as well.
She has been so brave and resilient throughout her journey. She definitely does not deserve everything she has had to endure over this past year, or what she will have to endure in the following months and years to come, and it is absolutely devastating.
LeioMyoSarcoma is incurable, and we need your help raising awareness, in the desperate hopes of finding a cure for LMS and Ariana Nicole!