Andrea Brown Emergency Medical Fund

Thursday, April 20, 2017 is the day my life changed forever.  Hi, my name is Jessica.  I am the mother or a 19 year old daughter graduating in a few short weeks on May 20, 2017 from Lowndes High School in Valdosta, GA. My sweet little girl has been diagnosed with Advanced Alveolar soft part sarcoma, a rare cancer only discovered in about 80 cases per year.

ASPS is an extremely rare cancer. While sarcomas comprise about 1% of all newly diagnosed cancers, and 15% of all childhood cancers, ASPS comprises less than 1% of sarcomas

Although ASPS displays a relatively indolent course, the ultimate prognosis is poor and is often characterized by late metastases.

Here is how our nightmare began.  Andrea had fallen down the steps at school and swelling appeared on her thigh shortly afterwards.  On Thursday, April 13, just 7 days before our horrific diagnosis, I took her to Parrott Medical Clinic, a local urgent care clinic here in Valdosta.  They immediately sent us to South GA Medical Center for an ultrasound to rule out a blood clot.  The next morning, Dr. Jonathan Parrott called me to tell me “get your butts over to Dr. Michael Clark’s office at Valdosta Orthopedic.  There we had a consultation and Xrays.  Once he reviewed the xrays, he scheduled an MRI.  The MRI was done on Monday, April 17.  We were supposed to discuss the findings on April 19, instead he called the day after and referred us back to SGMC for a CT scan.  By 6 pm that evening, Dr. Clark called to tell us the tests revealed masses on Andrea’s pelvis and in her lungs, we needed to urgently see Dr. Gibbs, oncologist at Shands/University of Florida in Gainesville, FL.  There, more Xrays and a needle biopsy were conducted.  Later in the afternoon, we were informed a surgical biopsy would need to be done because the needle biopsy did not provide enough information.  Thursday brought the news we never, ever could imagine.  CANCER.  Sarcoma to be more specific, yet the type had yet to be identified.  The next conversation began immediately, port placement and chemotherapy.  My world shook, I asked God WHY and WHY my sweet daughter?!  Was this all a bad dream, would I awake and realize life had not taken this horrible turn, the curve ball had not been thrown?   She had PROM in two days!  Senior Prom.  The loving time we had spent together picking out the perfect red dress was all that came to mind.  She was so excited about sharing the night with her other senior friends.  I begged to delay the chemo.  “Please just let her have this night as a carefree teenager”  I asked to delay starting chemo until Monday.  The doctors at Shands agreed.

Friday, we were released to go home, I drove home, silent with this knowledge, I had not told Andrea yet.  I just needed to get home and talk with her dad.  It was the longest 90 miles I think I have ever driven.  A mother’s primary reason to exist in life is to protect your children; how could I protect Andrea from this?  Telling her father was a painful reliving of the earlier hours of the day.  DENIAL…..the same denial I was feeling too.  

 Wow, Prom, what a whirlwind day.  Hair, makeup, all the prep, the photos….AND the baby sister who just loves to photobomb.  I took extra care in every detail, but dying on the inside with all my fears of the worst.  Here was my beautiful daughter, smiling, unknowing, just a senior waiting to start her journey of life.  She had a blast!  But Sunday came all too soon.  Sunday was the day her dad & I had to tell her the truth about her cancer diagnosis.  We tried to calmly just tell her the facts but keep it as positive as possible.  Many unknowns were outlined, no real answers to give all the while maintaining brave faces for our daughter.

Monday brought a very unexpected specific diagnosis when we returned to Shands.  A rare metastatic cancer,  advanced Alveolar soft part sarcoma, untreatable with chemotherapy.

 There are only two places in the United States for possible treatment she needs. The nearest  is a clinical trial  at the University of Miami in Miami Florida, the name of the trial is Axitinib and Pembrolizumab in Subjects with Advanced Alveolar Soft Part Sarcoma and Other Soft Tissue Sarcomas.

May 4, Andrea will have a brain MRI at Shands to review possible tumors prior to beginning her first oral medicine, Inlyta (Pfizer).  Several days later, on May 10, she will begin infusion treatment, Pembrolizumab (Merck).  Scans every 45 days will be done to monitor progress.

I am reeling without even being able to think about the financial impact this horrible disease has already put upon my family.   I am even worried about my two younger children at home who will need to make do without their mom there as usual, and even if I am there, my thoughts will be so consumed with the fear and worry for my oldest child, Andrea.  Let me be clear, I will do whatever necessary, this fight will be one that I will give 100% of everything I have for HER, including humbly asking my friends, my family and strangers to help us…..help us make sure we are able to get Andrea the treatment she deserves.    We will have travel expenses & medical expenses.   PLEASE, PLEASE DONATE!!!