Home again, Home again

Katie, Josh and I all traveled to Burlington today for a little chemotherapy. Josh is on vacation for the rest of the week, so he was obliged and willing to travel along. Katie was not as willing but I didn't give her the option.

Chemo was reasonably quick today... just 2.5 hours in the hospital plus the trip down and back. It was actually a nice day for a trip and we rode down with the windows part way down, nibbling on snacks and enjoying the sun.

Katie was good for her doctors and nurses throughout the procedure and Josh was happily occupied with coloring and playing. When everything was said and done, we stopped in to visit Grandpa Art and Grandma Kathy for a quick bite, a drink and a hug. Then we were off and headed home. Katie slept, but Josh stayed awake and kept me company all the way home.

Despite the transfusion Tuesday, Katie's numbers are still low - especially the hemoglobin which is currently only 7.2. The doctors expect that she will need another transfusion by Monday. For right now though, we are all set for a good weekend. Hopefully the warm, sunny weather will hold out so we can get outside a little.

Spring Has Sprung

I know better than to say this out loud, but I am compelled to say that I think Spring may actually be on its way. The front yard is still covered in white, but the sun has melted much of the snow in the backyard, and Katie Grace got her wish: We ventured out to the swing set today so she could swing and slide. While my feet were firmly planted in slushy snow as I pushed her up and into the air, she basked in the warm sun. She had to wear a hat and some mittens with her sweatshirt, but she went out without a coat, and she enjoyed every minute of our adventure. Quote of the day (after each trip down the slide): "Let's do that again." She has been looking out at the swing set for weeks. It was such a blessing to spend some time with her in the backyard. I know this sounds like such a simple thing. And we were only out there for half an hour. But the little things matter these days, and she was so happy. She fell asleep on the way home from a trip to the grocery store, desperately clinging to the bag of chips I was crazy enough to purchase. It was quite a look. It was a treat to have a regular old day with my little family. Best wishes to you and to your families, too.

Heading Home

It's 11:00 p.m. Do you know where your children are? My son is sleeping peacefully in his own bed, tucked under the covers and dreaming of t-ball. My daughter is on her way home, still, after a very long day in Burlington. Rick and I went to work this morning hoping to hear that Katie's blood counts were high enough that we could postpone the inevitable just a bit longer. Those medications caught up with us, however, and Katie's counts bottomed out; it was time for platelets and for red blood cells. Rick left work at lunch and traveled with Katie to Burlington, where she happily returned to her throne in Post Procedure Recovery (the PPR). She ate like a pig, took a good nap, and behaved herself admirably while receiving the transfusions that sustain her through chemo. We heard an interview on NPR recently in which a comedian talked about his experience with cancer. When asked who he wished to thank for his recovery, he thanked the people who agree to participate in clinical trials, who allow doctors to experiment and to make life-saving discoveries. If I had to thank a group of people who make a real difference, I would thank blood donors. Blood is such a strange gift. But it makes such a difference to kids like Katie. I wouldn't understand what a valuable commodity blood is if I hadn't seen it for myself. I get it now.

This was a difficult day for me, to be honest. I am tired. I am angry and frustrated. I am stressed out. But Josh was a wonderful companion this evening--sweet and funny and calm--and Katie continues to inspire me with her strength and her exuberance. I would be remiss if I didn't mention my husband, who continues to slog through this with me despite what a grouch I am. We realized, yesterday, that we have not had an uninterrupted conversation lasting longer than five minutes in a long time. "What is the point of being married?" I asked. "Would you rather do this alone?" he asked. Good point. Thank God for my husband, who always knows how to settle me down and to keep me focused. Maybe we should take lessons from our kids.

I think they're home! My family is home! Good night, all.

Monday Update

Katie spent the day with Grandma Kathy again today while Amy and I went to school. We think that this week will be a short week for Katie and her grandmother because Katie appears to be getting closer and closer to needing another transfusion and may not make it to Thursday. The petechia seem to be taking over her body, her color is becoming more and more pale and even though it doesn't always seem it, her energy levels are dropping and she is getting tired more easily. We will find out tomorrow whether or not we have to take her in to Fletcher Allen a day early.

She had a good day today, even getting a chance to get outside and get some fresh air and she and her grandmother walked around town. She romped and played like most any other day when she is feeling good. She also got a kick out of watching men climbing on scafolding outside the window as they were working on our roof today.

When Amy and I got home from work this afternoon, we took her for a ride to North Country Hospital for a little blood work. She took it well even though the blood was drawn from her arm instead of the usual finger prick so that her liver enzymes could be tested too this time. The only trouble we had was on the way home when she didn't get her way and she cried all the way home - showing us just how tired she was.

I shot the video tonight at bedtime as Amy was reading Katie some of her favorite bedtime stories. She didn't last too much longer after I turned the camera off.

Sunny Sunday

What a beautiful day! Every member of our little family went to Burke today, and three Kelleys went skiing! Burke was closing today, so it ran a special: Anyone from the Kingdom could spend the entire day skiing for just fifteen bucks, and we just couldn't pass up a bargain like that!

Joshua and Rick were skiing by 9:30. Katie and I had a quiet morning and joined them at noon. We figured we could chance the outing, as it was warm and sunny today so we could be outside in the fresh air. Katie was thrilled to leave the house. She basked in the sun on the back steps of the lodge, watching skiers and mingling with anyone who was willing to talk. "This is my Mommy," she would say, introducing me to anyone who looked even remotely friendly. (And there were a lot of friendly people taking in the sun this afternoon. She cheered for Rick and for Josh as they appeared and clapped as they made their way down the hill. "That's my Joshie. He's a good skier," she happily reported.

She's right. Josh is great. He paused long enough to wolf down a peanut butter sandwich, celebrated the arrival of his friend Jack and ventured back out. Rick and Katie took in some more sun while Josh and I took our first run together all winter. We skied with the Kings this afternoon, and everyone had fun. Katie, who was camped out on Rick's shoulders, wearing new goggles to protect her eyes, waved greetings as we approached. She was so happy to get out of the house and to see people. The isolation required by her immune system is bad for all of us--I miss the nearly constant traffic through the house--but it is most difficult for Katie, who really needs people.

Joshua was surrounded by people he loves this afternoon. He skied all day. I thought he might agree to head home after we took a break for snacks, but he was concerned that we had neglected the J bar, so out we went again. We closed the lifts. That bit of exercise should tide him over for a few days! He was happy to play Legos and to visit with Grandma Kathy, who is here to spend a few days with us. (Bless Grandma's heart!)

We don't know what this week has in store for us, but it was wonderful to have a sunny, warm day in which to play. We'll hope to write with continued good news soon. Happy Spring!

Watch Her Dance

Katie is having a pretty good day so far. She is full of energy and ready to play. But don't take my word for it... watch for yourself. I uploaded a short video. I can't actually believe she is so full of energy considering that she didn't fall asleep until after midnight and then she was up again by 7am.