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.
Showing posts with label cytogenetics. Show all posts
Showing posts with label cytogenetics. Show all posts
Friday, January 2, 2009
Thursday, February 14, 2008
Quick Update
Here's the plan, folks:
Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!
Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.
We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!
Happy Valentine's Day to my little family and to yours.
Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!
Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.
We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!
Happy Valentine's Day to my little family and to yours.
Wednesday, February 6, 2008
A Long Night
Katie decided that sleep was not as important as food last night, and she kept us up most of the night asking for and then demanding food every hour on the hour. I hate steroids. The steroids make her hungry around the clock, and now that she is starting to feel better and have more energy more of the time, she wants to act on that hunger more and more. My little girls is plumping up faster than a Butterball turkey. Her latest craving is for mozzarella cheese, and she can't get enough of it. She is capable of eating a pound in one day and asking for more.
Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*
Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.
Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.
As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.
The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.
I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.
Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*
Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.
Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.
As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.
The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.
I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.
Tuesday, January 29, 2008
News from Today's Trip
It is 3:15pm and Amy and Katie are still in Burlington waiting for blood test results to come back. They think that Katie is going to get an unexpected transfusion this afternoon. The last transfusion that she got took 3 hours. If this one takes as long that will leave Amy and Katie in Burlington with freezing rain and terrible road conditions on the way. If that is the case, I will try to talk Amy into just spending the night at her parents house in South Burlington and coming home tomorrow.
As for Katie's medical update, her early cytogenetic tests are back and we were told that she doesn't fit into any of the 5, poor prognosis categories, but that she doesn't quite fit into the 2, good prognosis categories either. Once again, she is going to do things her way. The doctors said that most kids are not so easily categorized this early on, and that this news is not bad news. Just the opposite, they were pleased that they could rule out the worst possible prognosis.
That's all the information that I have for now. I will post an update again later when I have more information.
As for Katie's medical update, her early cytogenetic tests are back and we were told that she doesn't fit into any of the 5, poor prognosis categories, but that she doesn't quite fit into the 2, good prognosis categories either. Once again, she is going to do things her way. The doctors said that most kids are not so easily categorized this early on, and that this news is not bad news. Just the opposite, they were pleased that they could rule out the worst possible prognosis.
That's all the information that I have for now. I will post an update again later when I have more information.
Terrific Tuesday
(We are hoping, at least, to have a terrific Tuesday!)
Katie and I are traveling to Burlington today for her first appointment at the Children's Specialty Clinic at Fletcher Allen--another part of the hospital for us to explore. Katie is meeting with her doctors today for a check up, and we are hoping to learn how to manage some of the side effects that are beginning to affect the quality of her life. Today we start anti-emetics to combat the nausea. It's time, unfortunately. We are also hoping to learn the results of the cytogenetic testing. Basically, doctors have analyzed blood and bone marrow in an effort to figure out just what is going wrong with the cells in Katie's blood. They need to know how the chromosomes are damaged so they can plan the next phase of her treatment. This also determines prognosis to some extent. I caved Saturday night and looked up ALL on the internet. I have been trying to avoid the madness! What I found, though, is a sample cytogenetics report, with prognosis, and now I am eager to learn Katie's results. Oddly enough, I wish I had never ventured online. "I'm an idiot," I said to Rick. He admitted that he had finally wandered online, too, and that it was neither helpful nor reassuring. When my technology geek of a husband won't go online, you know that something is wrong!
We are discovering that the doctors and nurses at Fletcher Allen really are our very best resource. I called Dr. Bradeen's answering service for help when Katie was vomiting last night, and she was on the phone with me herself just two minutes later. The doctors don't talk down to us--a relief--and they explain everything so clearly. They would make good teachers. The nurses are smart, capable and kind. It is such a relief to learn that our child is just like other children with ALL. She is so different. We have trouble recognizing our little beauty in the demon who spends all her time watching Dora and yelling at us. Apparently they all do this! While this doesn't make me feel a lot better about Katie's suffering, I am glad that her behavior is within normal limits for children in this new life we call "the new normal." Just keep telling me that it will be all right.
PS--Many thanks to the Lake Region staff. We aren't quite sure how to begin expressing our gratitude for all that you are doing to keep us afloat. It was such a luxury to be back at work Monday. Special thanks to those of you who are filling our bellies with pasta and cookies. Free range chicken with an apricot glaze? We have never eaten so well! Thanks to Barb for the pizza, too--pizza...
Katie and I are traveling to Burlington today for her first appointment at the Children's Specialty Clinic at Fletcher Allen--another part of the hospital for us to explore. Katie is meeting with her doctors today for a check up, and we are hoping to learn how to manage some of the side effects that are beginning to affect the quality of her life. Today we start anti-emetics to combat the nausea. It's time, unfortunately. We are also hoping to learn the results of the cytogenetic testing. Basically, doctors have analyzed blood and bone marrow in an effort to figure out just what is going wrong with the cells in Katie's blood. They need to know how the chromosomes are damaged so they can plan the next phase of her treatment. This also determines prognosis to some extent. I caved Saturday night and looked up ALL on the internet. I have been trying to avoid the madness! What I found, though, is a sample cytogenetics report, with prognosis, and now I am eager to learn Katie's results. Oddly enough, I wish I had never ventured online. "I'm an idiot," I said to Rick. He admitted that he had finally wandered online, too, and that it was neither helpful nor reassuring. When my technology geek of a husband won't go online, you know that something is wrong!
We are discovering that the doctors and nurses at Fletcher Allen really are our very best resource. I called Dr. Bradeen's answering service for help when Katie was vomiting last night, and she was on the phone with me herself just two minutes later. The doctors don't talk down to us--a relief--and they explain everything so clearly. They would make good teachers. The nurses are smart, capable and kind. It is such a relief to learn that our child is just like other children with ALL. She is so different. We have trouble recognizing our little beauty in the demon who spends all her time watching Dora and yelling at us. Apparently they all do this! While this doesn't make me feel a lot better about Katie's suffering, I am glad that her behavior is within normal limits for children in this new life we call "the new normal." Just keep telling me that it will be all right.
PS--Many thanks to the Lake Region staff. We aren't quite sure how to begin expressing our gratitude for all that you are doing to keep us afloat. It was such a luxury to be back at work Monday. Special thanks to those of you who are filling our bellies with pasta and cookies. Free range chicken with an apricot glaze? We have never eaten so well! Thanks to Barb for the pizza, too--pizza...
Subscribe to:
Posts (Atom)