Remembering Scott

  February 28 is Rare Disease Day. Prior to Scott being diagnosed, I never thought about rare diseases. I thought of cancer patients and families as "those brave people fighting cancer." I never thought I would become one of them, never wanted to become one.   25% of all cancers are rare, as are all pediatric cancers. According to the NIH, nearly 10% of the population have a rare disease ( https://ncats.nih.gov/news/events/rdd ). Of the estimated 10,000 rare diseases, fewer than 5% have an FDA-approved treatment.   Last week a colleague reached out after her father was diagnosed with a metastatic rare cancer. She needed help navigating a bewildering medical system while processing the shock of the diagnosis. Below are some medical lessons I learned when dealing with a rare cancer:   - ***Get a specialist for a rare cancer if at all possible.*** This really is so critical. It may not be at your local hospital, but you can consult with other hospitals on treatment options and t

Last month, I went to Key West to celebrate my sister's birthday. We previously visited Key West with Scott and my whole family for my 40th birthday [REDACTED] years ago, and it was one of my happiest weekends ever. If I could relive one day of my life again, it would be that day. I was looking forward to going back to Key West this year (especially in the dead of winter), but I was also wary of the memories it would bring back. I was back in this sunny paradise and everywhere I looked, there were memories of Scott. I saw him sitting at a table at Latitudes restaurant on Sunset Key, cheerfully sweltering in the sun. We got lobster rolls, stone crab claws, and Key lime pie from Eaton Street Market, which he loved. Each day I walked by the table next to the hotel's swimming pool, where I sat on his lap one morning after breakfast. My sisters and I ate breakfast sitting on the dock near the Southernmost Beach Cafe, where Scott was when he told one of them that he had