We kicked off the first official weekend of the summer by driving into the city so that we could hang out with Jim while he performed with Grenadilla at the Manhattan Children’s Museum. I knew the museum was probably aimed at younger kids, but it seemed like a good excuse to take a trip into the city that didn’t involve visiting some sort of doctor or other. Turns out, the girls had a blast.
Ana by a larger than life model of a healthy heart.
And…a diseased heart (ew)
Emily is exiting a gigantic model of the small intestines (via the rectum) – fun, fun, fun!
And…a random horse. I don’t know…
This is just a sampling of the day. The girls were happy and got along miraculously well, and we managed to surprise Jim with a large coffee and a sandwich right when he needed it. Ana is now so good at remembering to use hand sanitizer that she was applying it to Emily and I throughout the day, but the museum was pretty empty because the weather was so nice.
This morning Ana got her labs drawn (as usual). I am really hoping that her enzymes stay low again and that they reduce her prednisone again. She’s very self-concious about the weight she’s gained, but has very little control over her appetite on this drug. I actually spoke with Dr. Hochberg (her oncologist) today too because it’s time to (gulp) get an MRI scan of her abdomen. This should’ve been done last month – three months post-op – but the episode of rejection threw us off schedule. Regarding prednisone…Dr. Hochberg said Ana’s symptoms are very common and, although this sucks, it was actually kind of comforting.
The MRI will tell Dr. Hochberg if there’s any recurrence of the tumor which of course is a terrifying thought. Even though Dr. Hochberg originally said it was very rare for this type of tumor to recur after complete removal (in Ana’s case – this required a transplant), the fact that it occurred in the first place was extremely rare…so…logically…sorry, I’ll stop. But I’m worried. We’re going to take Ana to an MRI facility in Kingston and hopefully she will be able to tolerate the scan, which is very long (all abdominal scans take a while – probably about 45 minutes). Ana has had two MRI’s in the last year and she had to get them done under general anesthesia, but this was also before she had the transplant and the tumor was huge. It was very painful for her to lay on her back with the pressure of the cage thing pushing on her stomach, which is one of the reasons she needed anesthesia.
I’ve already spoken with the technician at the place in Kingston and they work with people who have difficulty getting MRI’s elsewhere. He even said he’d allow more time for the test in case Ana needed to come out of the machine and take a break. So, except for time, I figure we don’t have a lot to lose by trying them out and a lot to gain if we can have the test done successfully. I’ll call tomorrow to schedule that (double gulp).
One more summer-worthy thing to mention. I worked until 3 p.m. today and then drove the girls to the Ulster County Pool to purchase a family pass for the season (Ana can’t swim in lakes or rivers, so swimming holes are out this year). It’s 15 miles ONE WAY to get to the pool, but the girls love to swim and last year, well, Ana didn’t really get to swim. We didn’t know she was sick. I kept taking her to the pool or to swimming holes and she couldn’t tolerate more than 5 or 10 minutes in the water before her lips turned blue and she would shiver uncontrollably. I have no idea why. Maybe it was because she was so thin, or maybe it was a circulation issue from the tumor. Whatever it was, it was horrible. Swimming was something Ana had always loved. I used to call her my little fish. And, suddenly, she couldn’t tolerate the water.
So today, after I purchased the season pass, I let them swim for about an hour. The pool was mostly empty (still early in the season), and it wasn’t exactly hot out, but they jumped in and Ana was able to stay in the pool for a good 20 minutes at a time – her lips did not turn blue. She did NOT shiver uncontrollably. She jumped off the diving board three times. She swam under water. She got out, had French fries, then she jumped in AGAIN! I sat and watched with tears in my eyes because it really hit me at that moment what a gift this summer is and, when you think about it like that, 15 miles isn’t really that far of a distance to drive.