Playing Hard

As summer vacation winds down, we are cramming in more and more activities to make sure that we fit in everything that we wanted to do this summer. These past couple of days have been pretty nice and we put the good weather to good use. We spent one day at Granby Zoo and the following day at the beach. With lots of sun and fun under her belt, Katie finally crashed at the end of the second day. Just minutes after returning from the beach, she fell fast asleep on the couch while waiting for dinner. Eventually, I carried her upstairs to her own bed. She didn't wake up until the next morning.

Next week, we're planning a trip to Boston for the Aquarium, Children's Museum, Duck Boat Tours and more, and then a trip to New Hampshire for The Whale's Tale and finally Santa's Village. We'll post more fun pictures from those trips.

Not So Bad

Katie has finished this round of steroids and this time around it wasn't so bad. Her appetite increased a little bit and she definately became more irritable and difficult to deal with, but she didn't take it to the extremes that she did the last time around. She is still feeling the effects however, and her last dose was two days ago.

I wonder what made her react to last month's treatment so much more strongly than this month...

Bracing for More Steroids

Another month has passed by and next week Katie goes back to Fletcher Allen for another treatment. It feels too soon and at the same time, it feels like the last treatment was ages ago. The problem is that for some reason the Dexamethazone (steroid) really affected her this time and she was dealing with the consequences for many days. She was explosively cranky and prone to emotional swings and outburts on and off for two weeks. On top of that, she was hungry 24-7 and ate more than her mother did at every meal. She packed on plenty of extra padding this month. We are already trying to figure out how to work around her worst steroid days once PreK starts in August. Fortunately, Katie's teacher has agreed to work with us on this. We are hoping that this next batch of steroids won't be so potent.

On a positive note, we have spent a lot of time outside this month despite how rainy the summer has been. We have been swimming and playing in the sand. Josh went to golf camp, and Katie tried out a club herself. We have spent time in our kayaks, and we have shared them with friends. The kids have been riding their bikes. Soccer started Thursday, and BOTH kids played. There is some color in our cheeks, and the kids have nice sturdy limbs. The bags beneath our eyes are slowly disappearing. Swim lessons have ended, so the only item on our agenda this week is the trip to Fletcher Allen on Thursday (followed by soccer). I look forward to working on some web sites. Amy looks forward to time at the beach, the library and the barn, and she has painting plans. The kids are happy just to be kids. We'll try to post some pictures soon.

Relay for Life

This was our first experience of the Relay for Life, but it will not be our last. Katie enjoyed herself thoroughly; we all felt very good about participating. As you can see in the photo at the left, Katie was all decked out. (The hat is hard to read in this photo, but it is a Vermont Children's Hospital hat. It was a gift from the nurses at Fletcher Allen, and Katie loves it!) As we lined up with the Survivors for the Survivors' Lap, I reminded Katie that ALL of the people in purple t-shirts were kicking cancer's butt--our family catchphrase for the sometimes hard work of being brave and getting strong. Katie was thoroughly impressed: "That is so AMAZING, mom!" She was very proud of herself as she walked around the track to meet her dad, and she waved happily to all the bystanders; she was sure they were all cheering for her! It was a very powerful moment, and I happy to be there with her. Given how sick she has been this week, our pediatrician had recommended that we take it easy, but it was hard to do so. Katie wanted to keep walking. She took snack breaks and stopped to mingle, but we are pretty sure that she walked two or three miles. She may be small, but she is powerful, and she just kept on going.

Special thanks to the members of our team. We raised some money, we ate lots of junk food, and we had fun. Some of us were up all night. Many of us walked too many miles. Sincere thanks for your participation. It was fun to do this TOGETHER.

The final snapshot is a picture of our team beginning the walk. Katie, as you can see, is in her element, surrounded by people she knows and loves and looking forward to adventures with people she might get to meet. This is the perfect event for a social butterfly like this one.

It was a relief, for me, to feel like we have started to repay our community for its support. People have been so good to us. It was a pleasure to walk with friends and family. We met new people and spent time with people we don't see very often. We felt like part of our community, and it felt good. There is something compelling about dancing around a track at three o'clock in the morning with people who are uniformly positive. Everyone was in good spirits, and it was a great pleasure to join in. Katie won't object to returning next year. As she said, more than once, "This is a beautiful party."

Good Little Things

Sometimes good things come in small packages. That was the case this morning when our baby chicks arrived at 6:30 AM. Katie and Josh absolutely love them. Just look at the smile on Katie's face. Moments like this make the expense, time, and trouble of raising chickens a worhtwhile endeavor.

Home Again/Relay for Life

We are very happy to be home tonight and headed to bed in our own beds. (Katie will be sleeping with me in our bed, of course, but that's pretty close!)

Katie continues in good spirits. She was very active at the hospital this morning. She cranked out several (thousand) paintings during this short stay, and we logged a lot of miles pushing grocery carts through the hallways at Fletcher Allen. She was eager to mingle and trying to charm. She was very funny. Grandma Kathy brought us lunch, and we packed up. Our stay, this time, was so short that we left on a good note--not desperate to be free but truly appreciative for the help and glad to be on our way. I am sincerely proud of Katie, who took the whole experience in stride this time. She was reasonable and cooperative about the whole thing--pretty grown up, actually.

We stopped at a playground on the way home and let Katie be a kid. It was a beautiful sunny day, and I was content to relax in the shade, breathing deeply and watching Katie zip about, climb and slide. She is not in any pain. She is not struggling to breathe. She is perfectly happy with the new antibiotic, which apparently tastes like gummies.

Life is good.

We will check in with our beloved pediatrician this week, and we return to Burlington for Katie's monthly treatment on Tuesday. Treatment was originally scheduled for Thursday (tomorrow), but we asked for a break so that Katie can participate in the Relay for Life in Newport this weekend. It was starting to look like we might not make it, but we are glad to be home and getting ready for the big day. This will be Katie's first year as a participant in the survivors' walk, and she is really excited about it. (We will be camping out, and the sleeping bag is the big draw, maybe?) Anyway, we have many reasons to count our blessings, and all those laps on the track will give us plenty of time and ample opportunity to celebrate how far we have come. You're welcome to drop in and to share the fun...