As luck would have it, Katie's day care provider and her family are sick. Katie is healthy for once, and they are all miserable. Poor Jeannie...We hope that she and her family are on the mend.
Katie will go to Grandma Jean's house tomorrow, which brings me to the most important reason for this post: It is Grandma's Jean's birthday tomorrow! Happy birthday, Grandma! I hope that those of you who know Jean will call to wish her well Monday. She and Rick (they are my in laws) have saved our bacon this winter by caring for Katie during the prolonged period of neutropenia, and we look forward to spoiling Grandma a little bit this year. She deserves birthday blessings and a good start to a new year. Happy Birthday, Jeanie Beanie!
Sunday, February 8, 2009
Keeping Up With Katie
As her future soccer coach commented when Katie went sprinting past him on Saturday, she is fast. "You can't keep up with her!" he chortled, no doubt beginning to worry about what she will do on the soccer field. He was right. It isn't easy to keep up with Katie these days. She is something else. She was up before first light both days this weekend, and she almost never stopped moving. (She paused only to yell at one of us when we were unable to keep up with her schedule and with her incessant demands for food--late delay steroid effects?) We took advantage of Katie's good cell counts and had some adventures.
Our adventure at the basketball game was a weekend highlight. The gym was packed, and it was loud. Katie was thrilled to be part of the action. She ate popcorn, a lollipop and a cupcake. She stood on the bleachers and screamed for the boys. "Go, Rangers!" We stayed late so she could mingle with people she hasn't seen in months. She collected hugs and well wishes. Her pretty (and curly) new hair was a hit, and she pranced around, allowing everyone to pet it. She ran up and down the bleachers, showing off her balance. She was hoarse when we left the game, but she was smiling, and she was enthusiastic about a visit to our horses, so we kept on going. When we finally returned after a grocery shopping trip, five hours after we originally left the house, I was tired, but Katie was just getting started.
The highlight of our day today was a visit from my parents, who came up for lunch. Katie was dressed as a ballerina when they arrived, and we had been dancing, but she put them to work immediately. "Line up!" she screeched, and we were off to the races, zipping around the "track" on the first floor. You know that the tail is wagging the dog when three fairly bright and independent adults willingly sprint through the dining room in pursuit of a pint sized ballerina. It would be interesting to attach a pedometer to those ballet slippers...Our adventure continued with lunch at the East Side, where Katie continued the binge fest that characterized our weekend and insisted on celebrating the birthday of a woman at a table across the room. Only Katie...While she napped briefly on the way to Newport, that was it today. When I think about all the energy she burned and then I remember that she never really napped, I wonder where it all comes from. And then the incessant demands for food make sense...
Anyway, it was an absolute joy to leave the house this weekend with Katie in tow and to PLAY. A good time was had by all.
Our adventure at the basketball game was a weekend highlight. The gym was packed, and it was loud. Katie was thrilled to be part of the action. She ate popcorn, a lollipop and a cupcake. She stood on the bleachers and screamed for the boys. "Go, Rangers!" We stayed late so she could mingle with people she hasn't seen in months. She collected hugs and well wishes. Her pretty (and curly) new hair was a hit, and she pranced around, allowing everyone to pet it. She ran up and down the bleachers, showing off her balance. She was hoarse when we left the game, but she was smiling, and she was enthusiastic about a visit to our horses, so we kept on going. When we finally returned after a grocery shopping trip, five hours after we originally left the house, I was tired, but Katie was just getting started.
The highlight of our day today was a visit from my parents, who came up for lunch. Katie was dressed as a ballerina when they arrived, and we had been dancing, but she put them to work immediately. "Line up!" she screeched, and we were off to the races, zipping around the "track" on the first floor. You know that the tail is wagging the dog when three fairly bright and independent adults willingly sprint through the dining room in pursuit of a pint sized ballerina. It would be interesting to attach a pedometer to those ballet slippers...Our adventure continued with lunch at the East Side, where Katie continued the binge fest that characterized our weekend and insisted on celebrating the birthday of a woman at a table across the room. Only Katie...While she napped briefly on the way to Newport, that was it today. When I think about all the energy she burned and then I remember that she never really napped, I wonder where it all comes from. And then the incessant demands for food make sense...
Anyway, it was an absolute joy to leave the house this weekend with Katie in tow and to PLAY. A good time was had by all.
Saturday, February 7, 2009
4210!
I received the phone call yesterday afternoon while still at work. Katie's new ANC number is 4210! We are thrilled. However, that number is higher than the target number set forth by the doctors and they will likely increase the chemotherapy doses after one more blood test next week.
Friday, February 6, 2009
A Smoother End to the Week
Despite the bumpy start to the week, things seemed to have smoothed out nicely. Beginning Wednesday night, Katie starting feeling better and became more willing to interact with others in a pleasant and playful way. Thursday, I (Rick) took her to Fletcher Allen for a follow-up appointment that was nothing more than a blood count. I haven't gotten the numbers yet, but I am expecting that to be good news. When the news is bad, they call right away.
Katie had a great day in Burlington yesterday. She napped all the way there, and by the time we got into the hospital she was full of energy. Normally, she wants to ride in the stroller from the car up to Pediatric Oncology on the fourth floor of Fletcher Allen. Thursday, she walked in like she owned the place. She sang her ABCs in the waiting room and belted them out again as the nurse was taking her blood pressure. She then led the way to the room where her port would be accessed for the blood draw.
We had to wait for a bit before the doctor was available so Katie was allowed to leave the room to visit another 3 year old patient down the hallway. On the way, she decided to show the doctors and nurses what she could do, so she lined up on her own imaginary starting line, counted to 10, yelled "Go!" and took off running down the hall. She proceeded to repeat this process over and over again, running the full length of the hall each time and telling the doctors to cheer and clap for her as she ran by. I lost count of the number of laps that she did, but she ran for more than 10 minutes. Any doctor or nurse who heard this going on and wasn't in the middle of working with a patient, came out to see her run.
From there, I took her to visit her cousins. Because of the nuetropenia, she hasn't seen her cousins since before Christmas. In fact, we still have Christmas presents for them sitting in a closet waiting for both families to get together before opening them.
Hopefully, that good feeling transfered over to day care and she is having a good day there today.
Katie had a great day in Burlington yesterday. She napped all the way there, and by the time we got into the hospital she was full of energy. Normally, she wants to ride in the stroller from the car up to Pediatric Oncology on the fourth floor of Fletcher Allen. Thursday, she walked in like she owned the place. She sang her ABCs in the waiting room and belted them out again as the nurse was taking her blood pressure. She then led the way to the room where her port would be accessed for the blood draw.
We had to wait for a bit before the doctor was available so Katie was allowed to leave the room to visit another 3 year old patient down the hallway. On the way, she decided to show the doctors and nurses what she could do, so she lined up on her own imaginary starting line, counted to 10, yelled "Go!" and took off running down the hall. She proceeded to repeat this process over and over again, running the full length of the hall each time and telling the doctors to cheer and clap for her as she ran by. I lost count of the number of laps that she did, but she ran for more than 10 minutes. Any doctor or nurse who heard this going on and wasn't in the middle of working with a patient, came out to see her run.
From there, I took her to visit her cousins. Because of the nuetropenia, she hasn't seen her cousins since before Christmas. In fact, we still have Christmas presents for them sitting in a closet waiting for both families to get together before opening them.
Hopefully, that good feeling transfered over to day care and she is having a good day there today.
Tuesday, February 3, 2009
A Bubble of Expectations - That Burst
Katie went back to day care for the first time in eight weeks yesterday. She was excited to get back to other kids. We were excited to give her that little bit of normalcy. Her day care provider was excited to get her back, and all of the kids at day care were excited. The only problem was reality.
Katie woke up Monday morning, ready to go. She got dressed, ate breakfast and brushed her teeth with no problems. But as it got closer and closer to the time we had to leave, she started feeling less and less well. She had been awake for about an hour and she had already burned up most of her energy and her breakfast wasn't sitting well. We dropped her off at day care anyway, but you could tell that her excitement had faded. Not long after, we got a call from day care. Everyone's excitement had faded. Katie was not feeling well, and she was grumpy and uncooperative. The kids wanted to play with her, but she didn't want to play. The day care provider was disappointed and worried. We were saddened. We had all hoped that everything would be okay and her return to day care would be this miraculous return to the life she was living before she got sick again. It didn't happen that way, and we should have known better; but it was easy to hope for the best and believe that it would happen.
Today, she went back to day care, but with more realistic expectations. She knew she wasn't feeling her best. The kids knew that she might not play with them. Her day care provider knew that she might not cooperate or be in the best of moods, and we knew that the triumphant return had been a bit of a let down for all of us. However, with that reality check firmly established, we carried on with our plans and hoped that today would at least be a little better than yesterday. It was.
Katie got through her day just fine. She was a little low on energy and wanted to lay around more than she used to at daycare, but she has been laying around for eight weeks. It is going to take some time to get her energy levels and stamina back up. She was less grumpy today and more cooperative as well. All-in-all, it was a good day. The only down side - one of the other kids shows signs of pink eye but he hasn't seen a doctor yet. Ah the joys of day care.
Katie woke up Monday morning, ready to go. She got dressed, ate breakfast and brushed her teeth with no problems. But as it got closer and closer to the time we had to leave, she started feeling less and less well. She had been awake for about an hour and she had already burned up most of her energy and her breakfast wasn't sitting well. We dropped her off at day care anyway, but you could tell that her excitement had faded. Not long after, we got a call from day care. Everyone's excitement had faded. Katie was not feeling well, and she was grumpy and uncooperative. The kids wanted to play with her, but she didn't want to play. The day care provider was disappointed and worried. We were saddened. We had all hoped that everything would be okay and her return to day care would be this miraculous return to the life she was living before she got sick again. It didn't happen that way, and we should have known better; but it was easy to hope for the best and believe that it would happen.
Today, she went back to day care, but with more realistic expectations. She knew she wasn't feeling her best. The kids knew that she might not play with them. Her day care provider knew that she might not cooperate or be in the best of moods, and we knew that the triumphant return had been a bit of a let down for all of us. However, with that reality check firmly established, we carried on with our plans and hoped that today would at least be a little better than yesterday. It was.
Katie got through her day just fine. She was a little low on energy and wanted to lay around more than she used to at daycare, but she has been laying around for eight weeks. It is going to take some time to get her energy levels and stamina back up. She was less grumpy today and more cooperative as well. All-in-all, it was a good day. The only down side - one of the other kids shows signs of pink eye but he hasn't seen a doctor yet. Ah the joys of day care.
Sunday, February 1, 2009
Chemotherapy and a So-So Weekend
With Katie's numbers up, the chemotherapy resumed again starting Thursday. She had a dose of Vincristine (causes nausea) at the hospital, a dose of Zofran to combat the nausea, and a dose of her antibiotic, pentamidine. That night at home she got Methotrexate, Dexamethazone, and Mercaptopurine. All combined, a lot of chemicals went back into her body and that was just on Thursday. Friday, Saturday, and Sunday she continued to get Dexamethazone, Mercaptopurine, and Zofran. She has had a break from some of these drugs for quite some time now and she isn't used to handling them again. She spent most of her weekend just lying around on the couch or in bed. She didn't nap much, she just didn't feel good enough to get up and play. The few times that we tried to get her out, she told us she didn't feel good and just wanted to go back home. Tonight, after climbing into bed, she finally vomited for the first time since the drugs started going back in. Shortly afterward, she felt better.
Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.
Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.
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