She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.
Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.
Monday, January 5, 2009
Sunday, January 4, 2009
Day 1 Back at Home
We arrived back at home with Katie last night around 7pm. She was tired even after sleeping in the car for most of the trip home. She watched a Dora video and relaxed a bit before going to bed. This latest stay at the hospital was one of the most emotionally traumatic that she has ever had. She was mad at the world for the entire time she was in the hospital. This morning she is starting to act more like her playful, pleasant self. However, she has made it clear that we are never supposed to bring her back to the hospital again.
Her mouth sore is a little better this morning but it still hurts her. She cried at breakfast when some food touched it. One of her medications for the sore contains some Liticain to lessen the pain and that helps tremendously. We have to apply that every hour for now to keep her suffering to a minimum.
Today is our last day of vacation. Tomorrow we go back to work and Josh goes back to school. Katie is scheduled to spend the day with Grandma and Grandpa again. Lucky for us, they are still able to watch her during the day until she can go back to day care again.
Her mouth sore is a little better this morning but it still hurts her. She cried at breakfast when some food touched it. One of her medications for the sore contains some Liticain to lessen the pain and that helps tremendously. We have to apply that every hour for now to keep her suffering to a minimum.
Today is our last day of vacation. Tomorrow we go back to work and Josh goes back to school. Katie is scheduled to spend the day with Grandma and Grandpa again. Lucky for us, they are still able to watch her during the day until she can go back to day care again.
Saturday, January 3, 2009
She's Coming Home
Now that the return of cancer has been ruled out and her infection is responding well to treatment, the doctors are sending Katie home again. We have been told not to expect her ANC to rise for another couple of weeks, but they don't expect any additional problems. It looks like this was all just one big scare and I for one am glad that it is over.
Friday, January 2, 2009
Good News/Bad News/Good Again
What a day of ups and downs today has been. The morning started off well enough. Josh and I slept late and started our day slowly. By 10 am I had my first update from Amy. Katie had slept fitfully last night, not yet used to the nurses coming in to take vital signs every couple of hours. She was feeling pretty good, but was still not happy to be at the hospital. To make matters worse for her, but not us, the doctors were able to move up Katie's bone marrow extraction to this afternoon. That meant that Katie was not allowed to eat this morning and would not be allowed to have food or drink until 3pm. But at least there was a possibility that we would get some answers sooner than expected. That would be nice.
Just an hour later, I received another phone call from Amy. She had talked with the doctors again and been told that the blood sample that was drawn yesterday looked bad. The sample looked like it contained blasts again. It looked like the cancer might be back. The planned bone marrow extraction would now also include a lumbar puncture to test Katie's spinal fluid. Needless to say, I spent the rest of my day very stressed out. The last thing I wanted to hear was that the cancer had come back.
That was the last update that I had until after the bone marrow extraction was complete. At approximately 4pm, Amy and Katie returned to their room and I was able to get an update.
The extraction had gone off without a hitch and their was a little hopeful news. Apparently the marrow came out very easily and that is supposedly a good sign. It must come out harder when it is full of cancer cells. Additionally, the marrow looked healthy when viewed under a microscope. We wouldn't have any further information until the flow cytometry results came back.
Surprisingly, the flow cytometry results came back within the hour. They weren't expected to be read until Monday so our thanks go out to the doctor who put in the extra time to give us some peace of mind this weekend. The results were negative for any sign of cancer. What a relief that news was. Amy, who had been so solid as wave after wave of bad news rolled in, broke down on the phone as she passed along the good news. The relief in her voice was palpable.
However, now that we know that the cancer hasn't come back we are still left wondering what the real problem is. Whatever it is, it can't be as bad as if the cancer had come back.
Just an hour later, I received another phone call from Amy. She had talked with the doctors again and been told that the blood sample that was drawn yesterday looked bad. The sample looked like it contained blasts again. It looked like the cancer might be back. The planned bone marrow extraction would now also include a lumbar puncture to test Katie's spinal fluid. Needless to say, I spent the rest of my day very stressed out. The last thing I wanted to hear was that the cancer had come back.
That was the last update that I had until after the bone marrow extraction was complete. At approximately 4pm, Amy and Katie returned to their room and I was able to get an update.
The extraction had gone off without a hitch and their was a little hopeful news. Apparently the marrow came out very easily and that is supposedly a good sign. It must come out harder when it is full of cancer cells. Additionally, the marrow looked healthy when viewed under a microscope. We wouldn't have any further information until the flow cytometry results came back.
Surprisingly, the flow cytometry results came back within the hour. They weren't expected to be read until Monday so our thanks go out to the doctor who put in the extra time to give us some peace of mind this weekend. The results were negative for any sign of cancer. What a relief that news was. Amy, who had been so solid as wave after wave of bad news rolled in, broke down on the phone as she passed along the good news. The relief in her voice was palpable.
However, now that we know that the cancer hasn't come back we are still left wondering what the real problem is. Whatever it is, it can't be as bad as if the cancer had come back.
Thursday, January 1, 2009
Ushering in The New Year in The Hospital
Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.
Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.
She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.
In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.
However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.
This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.
But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.
Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.
I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.
Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.
She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.
In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.
However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.
But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.
Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.
I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.
Friday, December 26, 2008
Christmas at Home
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.
Subscribe to:
Posts (Atom)