Monday, June 22, 2009

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."

Thursday, June 18, 2009

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.

Wednesday, June 17, 2009

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...

Surprise Update

I'm not sure how I feel about this, but the doctors just gave Katie the OK to go home. Her ANC has climbed back to 450 and she is looking and feeling better. It seems a little soon to me to disconnect her from the IVs that have gotten her feeling better and put her on something else to take home, but I'm also glad that she is feeling better again. Amy and I are debating whether or not to stay with her parents in Burlington for a day or so until we are sure that Katie is fine.

Morning Update

Katie recieved her blood transfusion last night at about 9:30pm and is feeling better this morning. The nurses believe that her lungs sound a little better this morning and Katie is telling us that her ears feel a little better too. We are waiting for her blood counts to come back this morning to see if anything other than her red cells have climbed.

Tuesday, June 16, 2009

The Struggle Continues

At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.

Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.

Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.

Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.

More Than a Simple Fever

Katie was transported by ambulance from North Country Hospital yesterday afternoon to Fletcher Allen Hospital where she spent the night last night and will apparently be spending several more. Her fever came and went throughout the day yesterday, but more concerning than that is the fact that she still has pneumonia and a nasty ear infection even after 10 days on antibiotics that she was taking specifically to cure those two problems. In addition, her blood counts have dropped.

The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.

We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.

Monday, June 15, 2009

An Ear Infection That Led to a Fever

Katie has been suffering with an ear infection since Friday and ear infections never bother her. We were unable to get her to her doctors Friday before they closed and we wanted to hold of on another ER visit. We kept her as comfortable as possible over the weekend on rotating doses of Tylenol and Motrin, but as of Monday morning, her temperature has climbed above 101 so we are ER bound.
I'll post more updates later in the day when we know what is going on. For now we are headed to North Country Hospital.

Friday, June 12, 2009

Josh Learned to Ride a Bike

Katie's brother Josh learned how to ride his bike today without training wheels. He really took right off and Amy ran in the house to grab the video camera so that we could share the moment with everyone. Katie is in this video too... Chasing after the bike telling her brother that she is going to catch him.
video

Tuesday, June 9, 2009

Another Round of Pneumonia

Katie had a follow-up doctor's appointment today with her pediatrician to see how she was doing now that she is on an inhaler twice per day. She has been suffering from a cold again for several weeks and to our dismay, the doctor noted at this visit that her lungs no longer sounded clear. Yet again, another cold has settled into her lungs and caused Pneumonia. I think this is the third time in the past 8 months that she has had Pneumonia. To top it off, she also has fluid in both ears. Her ears are not very red and they are not bothering her, but there is a little infection there as well.
Oddly enough, she is feeling better today than she was just a few short days ago when her coughing was so bad that she had a hard time sleeping at nigh again.

Saturday, June 6, 2009

Gone Fishing

It was a beautiful day here today. The temperature hovered in the 70's and the sun was out all day long. After some chores around the house and a trip to the barn, I asked the kids if they wanted to do a little fishing. Their answer was a resounding YES!














We live within walking distance of Crystal Lake and the Barton River so I gave the kids the option of riding their PowerWheels Jeep and ATV to the fishing hole. They jumped at the idea and we quickly strapped the poles and tackle boxes to the vehicles and took off.

While fishing, they also played in quite a bit of dirt. Katie isn't wearing camo face paint, that is dirt mixed with sun screen. Both kids caught fish and I was happy enough just helping them do it. Maybe next time I will catch a fish too.

Tuesday, June 2, 2009

Mouth Sores Again

The steroids are wearing off and Katie was just starting to return to a normal emotional and behavioral level. However, she now has something else to deal with. Yesterday afternoon she began complaining that her teeth hurt and she blamed it on getting bumped in the mouth at day care. When she complained again this morning that her mouth still hurt I asked her to open up and say ahhhh while I looked in with a flash light. What I found was more mouth sores located on the roof of her mouth this time, right behind her teeth. They are small, but white and well defined. We immediately started using the magic mouth wash again, hoping to give her some relief from the pain and minimize the length of time that she has to suffer this time.