Christmas has come and gone and we were able to celebrate it at home. Katie was feeling great. In fact, all of us were healthy. The kids were very excited to open presents Christmas morning, and I captured plenty of video. I won't bore you all to death with all of the video from the day, but if you are interested I have uploaded a couple of short videos of the kids opening presents.
Friday, December 26, 2008
Wednesday, December 24, 2008
Still Healthy but Still Low Too.
We got Katie's latest blood test results yesterday afternoon and discovered that her ANC, while climbing, is still low. She was at 299 as of Monday night. That is going to be enough to keep us home for Christmas and to keep some friends and family away. It seems like a bad thing, but when the alternatives are considered, I am very happy to be home for the holidays. It sure beats spending them in the hospital.
So what's going on? Why are her numbers so low and taking so long to recover? The doctors have shared some theories with us. They are considering the possibility that dosage levels are too high for the chemotherapy that she has been getting at home so they are likely to start adjusting the doses and watching to see how her cell counts react. There is also the possibility that the Bactrim that she has been taking as her anti-biotic to ward off pneumonia could be causing the low ANC. Apparently, that happens in some kids. The Bactrim will be the first thing to go. We were instructed not to giver her the next dose. Instead, they are goig to try a new anti-biotic when we next go back to Fletcher Allen.
Until then, she is free to stay home with us, and take absolutely no medications of any kind. This will be the first time in a long time that her little body will be entirely drug free. That seems like a nice Christmas present.
So what's going on? Why are her numbers so low and taking so long to recover? The doctors have shared some theories with us. They are considering the possibility that dosage levels are too high for the chemotherapy that she has been getting at home so they are likely to start adjusting the doses and watching to see how her cell counts react. There is also the possibility that the Bactrim that she has been taking as her anti-biotic to ward off pneumonia could be causing the low ANC. Apparently, that happens in some kids. The Bactrim will be the first thing to go. We were instructed not to giver her the next dose. Instead, they are goig to try a new anti-biotic when we next go back to Fletcher Allen.
Until then, she is free to stay home with us, and take absolutely no medications of any kind. This will be the first time in a long time that her little body will be entirely drug free. That seems like a nice Christmas present.
Thursday, December 18, 2008
Uninspiring Test Results
Katie was back at the hospital yesterday afternoon for another blood test, again hoping for a rise in her ANC. However, it was not to be. Amy recieved the phone call today at school and learned that Katie's ANC is still low. In fact, it dropped again and is now resting at just 115. However, her overall white blood cell count is climbing and her monocytes (the part of the white blood responsible for making neutrophils) are climbing as well. So the current prediction is that Katie's ANC will be much higher by Friday which is when she goes back in for another finger pick blood test.
I think she has an angel looking over her shoulder right now, doing everything in her power to keep Katie out of the hospital. It was a full 14 days ago today when we discovered that her ANC was dangerously low. 14 days ago, the staff at Fletcher Allen thought we would be coming back for an extended stay very soon. We aren't out of the woods yet, but I already feel very lucky that we didn't have to spend these past 14 days in the hospital waiting for her ANC to rise.
I think she has an angel looking over her shoulder right now, doing everything in her power to keep Katie out of the hospital. It was a full 14 days ago today when we discovered that her ANC was dangerously low. 14 days ago, the staff at Fletcher Allen thought we would be coming back for an extended stay very soon. We aren't out of the woods yet, but I already feel very lucky that we didn't have to spend these past 14 days in the hospital waiting for her ANC to rise.
Saturday, December 13, 2008
Still Neutropenic
We took Katie to North Country Hospital again yesterday afternoon for another blood test to 
count neutrophils. The results came back today. Her counts are up a little, climbing from 120 on Monday to 260 yesterday, but she is not out of the woods yet. She will get tested again on Wednesday and hopefully her counts will be up over 750 by then. Either way, it looks like she will spend another week out of day care. She is taking it well. She is happy to spend her days with her grand parents but she does say that she misses her friends. At least she is still feeling good and doing well aside from the low ANC.
count neutrophils. The results came back today. Her counts are up a little, climbing from 120 on Monday to 260 yesterday, but she is not out of the woods yet. She will get tested again on Wednesday and hopefully her counts will be up over 750 by then. Either way, it looks like she will spend another week out of day care. She is taking it well. She is happy to spend her days with her grand parents but she does say that she misses her friends. At least she is still feeling good and doing well aside from the low ANC.
Wednesday, December 10, 2008
Weathering the Storm
Katie went to North Country Hospital Monday afternoon for a follow-up blood test to see if her ANC had recovered at all yet. Unfortunately, the results showed that she had an ANC of just 120. So she is no closer to getting her immune system back in working order. However, my illness (My means Rick in this instance) has run it's course and I an now feeling better. I even went back to work today and Katie shows no signs of coming down with what I had. The official results are not in yet so I don't yet know for sure if it was the Flu, but it was nasty and unpleasant and I am very glad that she doesn't have it at this time.
My parents in Newport have been taking Katie every day because she can't go to daycare with her numbers so low. They are really going out of their way to help us out. They drive here in the morning to pick her up and they drive back in the evening to drop her off. We are especially thankful for their efforts.
Friday, December 5, 2008
Neutropenic and Exposed to The Flu
Katie took a scheduled trip to Fletcher Allen Thursday for a lumbar puncture and chemotherapy. The only thing that made the trip unusual was that I wasn't feeling well. In fact, I was feeling pretty sick but since I wouldn't be expected to do much but wait for the chemo and the LP, I figured I could handle it.
All went well with the chemo and the LP, but as we were leaving the hospital, one of the nurses caught us and told me that Katie's blood tests had just came back and her ANC was a mere 360. She was neutropenic. I was also running a fever by this point.
Today, I went to see my own doctor because I was still feeling pretty bad. It turns out that I probably have the first case of the flu to be reported in Vermont this year. So far, Katie shows no signs of coming down with the flu herself but we are watching carefully and waiting. If she starts to run a fever, we are headed to Fletcher Allen for an extended stay.
One of the last things the nurse told us before we went home was to pack some bags. We would likely be back. I am hoping to prove her wrong.
All went well with the chemo and the LP, but as we were leaving the hospital, one of the nurses caught us and told me that Katie's blood tests had just came back and her ANC was a mere 360. She was neutropenic. I was also running a fever by this point.
Today, I went to see my own doctor because I was still feeling pretty bad. It turns out that I probably have the first case of the flu to be reported in Vermont this year. So far, Katie shows no signs of coming down with the flu herself but we are watching carefully and waiting. If she starts to run a fever, we are headed to Fletcher Allen for an extended stay.
One of the last things the nurse told us before we went home was to pack some bags. We would likely be back. I am hoping to prove her wrong.
Wednesday, December 3, 2008
Pneumonia
We definitely do not update the blog as often as we should any more, but here is the latest. In our last post, I mentioned that Katie had some fluid in her lungs. Well, it turned into pneumonia. The ear infection she originally had cleared up right away but she did have to go back on a different antibiotic to fight off the pneumonia.
The strange thing about this case of pneumonia was that we couldn't even tell that she had pneumonia other than from the sound of fluid in her lungs. Her cough had almost vanished and she was capable of running and playing as if she was in perfect health. Either way, 5-days later, her pneumonia has also cleared up and her follow-up doctor's appointment today revealed no additional problems. She is perfectly healthy again.
Later this week, she has an appointment for a lumbar puncture and chemotherapy at Fletcher Allen. I don't expect any surprises from that visit, but any day involving an LP is going to be a long day and she isn't going to like it.
The strange thing about this case of pneumonia was that we couldn't even tell that she had pneumonia other than from the sound of fluid in her lungs. Her cough had almost vanished and she was capable of running and playing as if she was in perfect health. Either way, 5-days later, her pneumonia has also cleared up and her follow-up doctor's appointment today revealed no additional problems. She is perfectly healthy again.
Later this week, she has an appointment for a lumbar puncture and chemotherapy at Fletcher Allen. I don't expect any surprises from that visit, but any day involving an LP is going to be a long day and she isn't going to like it.
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