Friday, July 22, 2011

Mini Vacations and Celebrations

With everything that we have going on, a calendar of commitments that looks like we're a family of 6, we haven't had much quality do-nothing-else family time. So when my parents went away for their much needed week in the Berkshires, we were glad to see them get away, but a little bit jealous that we couldn't do the same type thing. They suggested us coming out for an overnight if Saoirse's labs were looking good, and she was feeling good, at the beginning of the week. This sounded like the perfect opportunity for a quick getaway. Of course, taking an active pediatric oncology patient out to the Berkshires takes some coordination, some research, and a lot of packing. I think we packed more medications than we did clothing! We also had to look up and see if there was a hospital with a pediatric oncology unit within an hours drive of the condo, just in case she spiked a fever (Springfield has a children's hospital with pedi oncology under 50 miles from Lee). So check, and check, now all we had to do was wait for her labs to come back monday afternoon to make sure that white counts were looking ok, and to make sure that her hemoglobin wasn't so low that she would need a transfusion right away. We got the call at about 4 in the afternoon, and although her hemoglobin was a bit low, she wasn't going to need a transfusion until Friday or so. So we went for it! It was a little nerve wracking to take her on such a long road trip when she had been having trouble with carsickness, but we coordinated it with an early afternoon nap, and she slept for almost the whole ride. The place they were staying was really nice. The condo was a 2 bedroom 2 bath unit, with a kitchen, and in a nice wooded area. It even had a pool so we could take a quick dip to cool off at night. We did some touring around, and ate some really good food. We even got to see the work of two famous artists while we were there - we went to the Norman Rockwell Museum and Studio, which was awesome, and we saw works by Dale Chihuly in a gallery in Stockbridge, which was amazing. Of course, the Norman Rockwell Museum houses his Saturday Evening Post covers, but it was even more amazing to see the original paintings that his published illustrations came from. I didn't realize how big they would be, although I'm not sure why. The detail was amazing in the paintings. The museum even had a little bit about animation and the Ice Age and Rio characters featured to show how the digital animation process works. It was neat to see that they still use so many analogue elements before converting things to digital output. Saoirse liked the short episodes that they were playing on a big screen TV. it was a good way to keep her occupied, as she wasn't very interested in looking at paintings. At least it kept her from screaming and terrorizing the gift shop for a sort period of time. The Chihuly gallery looking was more for us. I have always liked his work, and even though it's been showing at the MFA for three months now, and we're down the street when we're at Children's, we still haven't managed to get over there to see the exhibit. His work is so amazing, and they had a few large and really nice pieces that were very nice to look at. They also had some of his paintings, which I hadn't realized that he did. (On a special note, this gallery has no idea how to frame things. They have mostly glass sculpture, but the few 2 dimensional pieces were in horrible frames.) But even with horrible framing, the paintings were very cool, abstract pieces, with tons of color and movement. So awesome to see. After a refreshing nap for the baby and me (and a nice dip in the pool for everyone else), we packed ourselves up a nice picnic dinner, and went over to Jacob's Pillow for the free performance. It was great to finally see the Pillow for the first time. My sister has danced there, and my parents have been going there for performances for years, but I had never gotten to go along. The campus is amazing, so much to see and so many dance spaces. I can't wait for next summer when we can go and spend some more time there and see some more of the performances, lectures and exhibits. After a great performance, we headed home. The baby slept in the car, and stayed asleep when we put her in bed. The next day we woke up and the vacation was over. With blood work for me in the morning, and a blood transfusion for the baby in the afternoon, we were back to our "normal," crazy doctor's appointments. But at least, for just a couple days, we were able to forget (mostly) about being patients, and focus on being a family. 
This week was my last Chemo treatment! It's very exciting. The only problem with it being the last chemo, is that everyone wants to celebrate and I still have to feel crappy for 3 days. But we will be celebrating soon. Now that my treatment is over, I have some mixed emotions. I have the benefit of having already had a negative PET scan, so most likely nothing has changed, but I do still have to wait over a month to have my new scans done so that the medicines don't show up and give any false readings. So there's a little bit of waiting to get full confirmation, but again, because the last ones were all negative, the doctor is not expecting any surprises. I just can't wait until I can eat sushi! I still have some time to wait on that one, but I will be going out for some awesome raw fish as soon as I can. There's still a lot of follow up, but at least I don't have to have my energy knocked down every 2 weeks, and I can finally have every other weekend back! What ever shall I do with all my time? Maybe I'll finally get to organize the house! 

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