Beach House Update
A BIG update about the beach vacation. I found a perfect house which sleeps 12 and has 6 bedrooms. It has a private beach and two big rooms that overlook the ocean. It is FAR more money than I had planned to spend, but…it’s entirely covered thanks to all of the donations that have come in over the last couple of weeks.It’s all booked and paid for, so this is really happening.
The beach house is dog friendly, spacious and right on Point Pleasant Beach in NJ, less than a three hour drive from home. It’s available the week we wanted – 6/25 through 7/2. It’s about an hour and 20 minutes away from Columbia Presbyterian too, which is kind of comforting.
Ana and Emily both stayed home from school today. Ana, because she wasn’t up to going and Emily because I said she could stay home too if she wanted. Ana’s been missing a lot of school and it just seemed fair…Jim took the girls to the Woodbury outlets and they did a little shopping (here’s a picture of them with their shopping faces on) while I stayed home and worked on getting the beach house secured.
Also, a quick medical update: All of Ana’s new medications are approved (after several rejections and appeals). We picked up the Jakafi yesterday so she doesn’t have to take the expired stuff anymore. She had labs drawn today and if her liver enzymes are good, then she will stop her tacrolimus (anti-rejection drug) but stay on Everolimus (combination chemo/anti-rejection) in addition to the Jakafi and Celebrex. This is a pretty heavy duty combination of drugs, and I’m dearly hoping it buys her some more time so that she can have a full summer.