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Latest journal entry

Back to chemo / staying hopeful

Since the last update on June 13th Alexis went through a second and a third TACE procedure on her liver.  It took a very harsh toll and essentially took the entire summer for Alexis to recover and get back on her feet.  An MRI last week revealed progression of disease in the liver – a couple of tumors did not respond to the TACE and grew in size.  One tumor in particular is in a very precarious spot, close in proximity to the vena cava making ablation and surgical options not possible at this time.  This was not the news we were expecting as TACE almost always works.  We are now pivoting back to chemotherapy, this time a different drug called Stroptozocin.  The goal will be to shrink these tumors (or eliminate them completely) and get Alexis to surgery. They say “cut to cure” with ACC -- surgery should always be the first option.

Alexis begins this Stroptozocin regimen today and it continues for 5 consecutive days.  Then two weeks off before receiving it once again the week of 12/31.  Then scans.  Given her remarkable response to the prior chemotherapy in the most difficult of disease sites ( the liver ) we can be somewhat hopeful that a similar response will be possible with this chemo as well.  She still has nodules in her lungs but they are growing slowly and will be addressed after the liver is dealt with.

We fight on.  But we also live on.  The family took a big trip down to the gulf coast of Florida in August (we give the Hyatt Regency Coconut Point in Bonita Springs five stars!).  Alexis also took a trip to Lennox MA with her mom.  We’ve seen a couple of spectacular jazz performances at Birdland and Dizzy’s in NYC and saw Swan Lake at the Metropolitan Opera.  We’ve explored the Crayola Factory and Dutch Wonderland with the kids, attended a beautiful wedding out east, celebrated both kids’ birthdays, celebrated Thanksgiving in "Goldberg style", went to the Hudson Valley hot air balloon festival on the hottest day possible, explored the breathtaking scenery of the Storm King Art Center and sculptures at the Nassau County Museum of Art.  We hope to go some place warm in February (Costa Rica?) and we hope to attend Cancercon in Denver this April.

We are grateful for the team of doctors and nurses at St. Francis oncology associates and NY Presbyterian. Thank you friends, family and the school/community for all of your support!!

Happy holidays.  Here's to a happy and healthy 2019!

Alexis & Dan

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