Anna Rose died on March 26th, 2017 from Adrenal Cortical Carcinoma, a rare NET cancer. She was barely 21 when she got her wings. Her mom, Gil Schaenzle, made a nine-month journey (November 2017 to August 2018) to run/walk/hike/kayak all 50 of the National Parks in the contiguous states to raise awareness of NET cancer. Gil wrote this timeline of Anna's experience with NET cancer.
January, 2016: Anna was unable to feel her legs when she would run. They would turn grey also. Then she started passing out when she would play volleyball or run. We were told to see a vascular surgeon in Grand Junction, where she attended Colorado Mesa University. He started running several tests.
February, 2016 The vascular surgeon determines that Anna has a rare condition called ‘Popliteal Artery Entrapment’, and she has it in both legs. He had only seen 1 case in his whole career. We are advised that hers is very complicated and we must try to find someone who can operate on her or she will lose both of her legs. Totally devastating to a volleyball player who is playing on 2 college travel clubs and practicing with the men’s travel club. He also advises that he thinks Anna has a heart issue and we need to find a cardiologist. She continues to play volleyball. She was a warrior…
March, 2016 We find a cardiologist in Vail, CO that will treat young people and he starts running tests. We also locate a vascular surgeon at Johns Hopkins Hospital in Baltimore who will do the surgeries needed. He is the head of the Vascular Center. We take Anna to Mexico for spring break hoping to nurture her and help her relax before the end of school and her surgeries in Baltimore.
April, 2016 Anna continues to worsen. She is having lots of stomach aches and can’t sleep. There is nothing that helps her sleep. She spends many nights out at The Colorado National Monument sitting on a cliff watching Grand Junction sleep. I was afraid that all the concussions she had sustained were perhaps doing this to her, but it didn’t add up since she was on the Dean’s List for Academics. She was a warrior…
May, 2016 She finishes the school year and we fly to Florida for a quick mini vacation before going to Baltimore for the surgeries. She had a moment in Disney World where she was crying and wouldn’t tell me why. Later at Christmas, she told me she felt very strongly that she would never be coming back to Disney World; that she was going to die soon. She loved Disney World…and she never cried.
June, 2016 Anna and I were at Johns Hopkins Hospital for most of the month. Not only were the arteries in each leg trapped, but the major vein and nerve were also entrapped. It was 1 in a billion chance of it happening. During her first surgery I caressed her face and noticed some stubble, I called an OB/GYN at home and made an appointment for her. We fly home near the end of the month, certain that the worst of this is behind her. We can start PT and she will be back playing volleyball in the fall. Three days later we receive the worst news anyone can receive from the OB/GYN that her blood work is very strange and that he thinks she could have cancer. He sends us to a very good endocrinologist in Denver. She repeats the blood work because the levels we so high, they couldn’t possibly be correct…they were. Anna’s DHEA and Testosterone levels are over 1000. This is about 200 times more than it should be. She is diagnosed as having Neuroendocrine Adrenal Cortical Carcinoma, Stage IV. She was a warrior...
July, 2016 We are referred to Dr. Liu at Rocky Mt. Cancer Center and Anna undergoes more tests and scans to see how bad the tumor is. The tumors are huge. They are on her adrenal gland, spleen, liver and lungs. Dr. Liu was bewildered by the scans on his computer and the perfectly healthy looking athlete in front of him. Her abdominal muscles were so strong that the tumors weren’t showing, but had forced her liver over to the left side of her abdominal cavity.
August, 2016 Anna is admitted to the hospital to undergo and embolization surgery and the following day the surgery to remove the tumors. The embolization is supposed to take 2 hours and it takes 4. The next day Dr. Liu operates on Anna for 9-10 hours to remove the tumors and her spleen. The tumor on her liver is the size of a basketball and her sternum had to be broken to get it out. The tumor on her adrenal gland is like 2 bricks stacked. There were also about 2 dozen golf ball size tumors lying about. She is in ICU for 4 days and in a regular room for 11 days.
September, 2016 Anna keeps bugging Dr. Liu about when she will feel better, she can hardly move. He kids her that she is like the lady in the magic act that gets sawn in half…except she really did get sawn in half. She was a warrior...
October, 2016 We take Anna to Key West for a gentle vacation before starting chemo. It is difficult to travel as she needs pillows all around her to protect her. Then chemo starts…she was a warrior...
November, 2016 Anna is on the worst of the worst chemo cocktails. Her hair falls out immediately. She is vomiting all the time, but requests that her friends be invited to have Thanksgiving with us. She felt like hell, but drank in the love of her friends and mom and dad. She was a warrior...
December, 2016 3rd round of chemo. Christmas…our last one. Anna is so sick she can hardly enjoy Christmas. I try to make it perfect through my tears.
January, 2017 We are informed that chemo isn’t working. We sign up for immunotherapy and clinical trials. It’s looking hopeless.
February, 2017 Anna is getting worse. We continue with immunotherapy and clinical trial drug.
Anna is turning into a zombie.
March 21st I take her into the cancer center. I make the decision to pull her from the clinical trial as it could be causing the zombie state. They run scans to make sure it isn’t the cancer causing it.
March 22nd, Dr. Cohn calls to tell me that Anna probably has only 2 weeks to live. We are devastated! Anna can no longer open her eyes or speak very well.
March 23rd, Anna has a little rally. She makes a valiant effort to sit at the table with her best friend who has brought her a root beer float. She was a warrior…That night her breathing changes and hospice informs us that it will only be a day or two before she leaves us forever. March 24th, I text and call as many of her friends as I can and invite them to come see her one last time. Our house is packed with kids coming to love on their friend one last time.
March 25th, more kids and coaches
March 26th, 12:55 am My baby got her wings. **
She was a warrior…