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1/14/2017 Latest post:
Yesterday (12/21/2016) was the day that it became evident that the creation of this website for Mom is long overdue.
I stepped out of a meeting to answer a phone call I had been waiting on from Dad to find out if there was any "new" news. She had an Oncologist appointment, and I made him promise that he would call me when they got out. I am obsessively checking in to see how she's doing, because, well, she's my mom, and she's awesome. I realized yesterday that many of you care as much about her as we do, would like the same updates but may not have the same access to my parents to get them. With social media, there is not reason why we all shouldn't be equally informed.
Two short weeks ago, I met my parents in the ER at Barnes West. Starting late October, she displayed symptoms that pointed to a liver deficiency. After persisting symptoms, she eventually saw a liver specialist, and 24 hours later, Mom was asked to come to the hospital. Hepatitis was eventually ruled out, so the purpose of the Barnes visit was to unveil the cause of the jaundice, fatigue, appetite & weight loss. The Hepatologist discovered that these symptoms rooted from a blockage in her Bile Ducts, but the cause of the obstruction was unknown.
It broke my heart seeing Mom as sick as she was that day, but I remember thinking to myself, and eventually speaking up, that as bad as this seemed, thank God we were not dealing with something like cancer. Not an hour later, a doctor informed us that the CAT scan showed a large mass surrounding her liver and gall bladder, and this was causing her symptoms. The more tests that were done, the more our biggest fear materialized.
Dad and I went from agreeing that we wouldn't panic or jump to conclusions about Mom's situation to hearing an Oncologist tell us that not only is the mass a malignant tumor, but that it has spread to her lymph nodes and intestines, is Stage IV, inoperable, and happens to be one of the rarest, most insidious forms of the disease there is. There is no cure, and conventional medicine suggests the only treatment options are chemo and radiation.
It is with deep remorse that we have become intimately acquainted with "angiosarcoma."
When you do the Google search, you'll find thousands of different pages that all have the same prognosis: "Angiosarcomas are relatively rare. They comprise 1-2% of sarcomas...Like other sarcomas, the risk of recurrence depends on the stage of disease. For sarcomas that are localized, low grade sarcomas are stage I, and large, high-grade, deep sarcomas are stage III. If a sarcoma does not have all three features (large, high-grade, and deep), it is stage II. Sarcomas that have traveled to lymph nodes or other sites of the body beyond where they started are considered stage IV, or metastatic, disease. Unlike most sarcomas, which travel via the bloodstream to other organs such as lung or liver, angiosarcomas are one form of sarcoma that travel to lymph nodes more often than most other sarcomas."
At Stage IV, orthodox medicine sees Mom as having two options: 1) Remain untreated: 6 - 8 month life expectancy 2) Chemo/Radiation: median 12 month life expectancy--with side effects we all know [Aside: we are open to any and all conventional or unconventional recommendations]
In order to begin the form of chemo Mom is approaching, her Bilirubin levels must be below 10. While at Barnes, she underwent a procedure to implant stents into her Bile Ducts to allow the passage of bile from her liver/gall bladder to her small intestine. As of Monday, 12/19, her Bilirubin was at 17, down significantly from where they were just two short weeks ago, but still too high to begin treatment. Today, 12/22, it is still at 17.
[Until we are able to start her treatment, we have been proactively exploring unconventional options. Any testimonies/experiences/recommendations you may have can help us determine the best course of action to take.]
Despite the sadness of all of this, the outpouring of compassion from family, friends and the neighborhood has been absolutely heartwarming.
If you're reading this, you know Mom. I don't need to rant about the injustice of how a woman serving the medical field for 40 years, retiring 10 months ago; a woman whom I've never seen drink more than two glasses of wine; a truly beautiful soul on every front: mother, grandmother, wife, friend, companion, could be afflicted with such a horrible disease.
With that said, there is absolutely no reason for you, me, or any other family member/friend to give up hope. Mom needs us now more than ever.
For 40 years, Mom's positive attitude allowed her to become one of the most influential pediatric life-savers in the Saint Louis community. If there is any human being who can fight it, you're on her page.