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 Leukemia. Show all posts
Showing posts with label Leukemia. Show all posts
Friday, January 2, 2009
Friday, April 25, 2008
Changing of The Guard
I'm back online and Amy has relieved me at the hospital. Interestingly enough, I am not online in a traditional setting but from my laptop while sitting in front of a campfire beside a tent in my brother's back yard with my brother Ryan, my son Josh, and his cousins, Kyler and Eric. I was not prepared for this makeshift camping trip, but Josh has a bit of a cold so Amy dropped him off at my brother's house before coming to the hospital. By the time I got there, they had already cooked up this little plan and were busy moving sleeping bags into the tent. So I just traded the hospital bed for the hard ground. Somehow, I don't feel like I'm getting the better end of this deal. I'm going to miss my Thermarest, my sleeping bag, my warm clothes and every other camping item that I would have brought had I been forewarned.
But enough about me - back to Katie. When I left the hospital this evening, Katie had a temperature of 38.4 Celsius. She was in good spirits and has been in good spirits ever since she vomited this afternoon. I'm not sure how much Amy has passed along in my absence (I didn't read the earlier blog postings before starting this one) so I will give a brief synopsis. She has had a fever, off and on, for the past couple of days and has stopped eating anything meaningful. To handle the eating problem, A new IV has been ordered called a TPN which should provide all of the nutrition she needs even if she doesn't eat. The fevers are a bigger problem. The doctors are not fond of this newest rash of fevers so that are starting Katie on a new round of antibiotics, afraid that they may be missing something in the cultures. In addition, Katie developed a small cough today which is really the first localized symptom that we have seen in days. Given the cough, no one wanted to take a chance that something might be wrong with her lungs, so a CT scan was ordered and Katie underwent her first CT scan with flying colors. We had a couple of hours to prepare for the scan so I spent some time telling her what to expect and explaining how the process would work. I even used a small toy dog and some parts from the hospital bed to simulate someone sliding into a CT scanner. Katie admitted that she was scared, and her eyes were as big as saucers going in, but she held still and the technicians were able to get a good picture of her lungs very quickly. It helped the the Child Life people hooked us up with a portable DVD player and a Dora video for Katie to watch while she was getting scanned. I was able to don a lead shielded apron and stand next to Katie, holding the DVD player so that she could look at the screen and watch the video upside down while being scanned.
After the CTscan, Katie happily went back to her room and took a desperately needed nap. Unfortunately, she vomited about 10 minutes into her nap and had to start all over. After I got her all cleaned up, she slept peacefully for the rest of the afternoon. She even got some of her appetite back and ate a little tortellini for dinner. She was very happy to see her mother, and spent lots of time giving her hugs and kisses and telling her she loved her. Josh was just as happy to see me, but Josh, I am unhappy to report, has a cold. He won't be allowed near his sister until his cold clears up, so they won't see each other at all this weekend. Katie asked for Josh too, but she accepted it well when we told her why he wouldn't be allowed to visit.
At this point, we are going to wait and see how Katie handles the new anti-biotic and anti-fungal medications. If things are pretty much the same next week, she will probably have her bone marrow pulled and tested on Wednesday. The bone marrow test will let the doctors know whether her marrow is producing healthy cells like it should be or whether it is producing leukemia cells again which might explain why her cell counts are not coming back up like they are supposed to. Hopefully, she recovers before that time and the tests only show healthy, productive cells that were just repressed for a while by a combination of chemotherapy and a viral infection.
With these happy thoughts in mind, I will now curl up next to my son and go to sleep in this tent with the smell of camp fire smoke in the air. This is our first camping trip of the year, even if it is in the back yard, and I will make the best of it.
But enough about me - back to Katie. When I left the hospital this evening, Katie had a temperature of 38.4 Celsius. She was in good spirits and has been in good spirits ever since she vomited this afternoon. I'm not sure how much Amy has passed along in my absence (I didn't read the earlier blog postings before starting this one) so I will give a brief synopsis. She has had a fever, off and on, for the past couple of days and has stopped eating anything meaningful. To handle the eating problem, A new IV has been ordered called a TPN which should provide all of the nutrition she needs even if she doesn't eat. The fevers are a bigger problem. The doctors are not fond of this newest rash of fevers so that are starting Katie on a new round of antibiotics, afraid that they may be missing something in the cultures. In addition, Katie developed a small cough today which is really the first localized symptom that we have seen in days. Given the cough, no one wanted to take a chance that something might be wrong with her lungs, so a CT scan was ordered and Katie underwent her first CT scan with flying colors. We had a couple of hours to prepare for the scan so I spent some time telling her what to expect and explaining how the process would work. I even used a small toy dog and some parts from the hospital bed to simulate someone sliding into a CT scanner. Katie admitted that she was scared, and her eyes were as big as saucers going in, but she held still and the technicians were able to get a good picture of her lungs very quickly. It helped the the Child Life people hooked us up with a portable DVD player and a Dora video for Katie to watch while she was getting scanned. I was able to don a lead shielded apron and stand next to Katie, holding the DVD player so that she could look at the screen and watch the video upside down while being scanned.
After the CTscan, Katie happily went back to her room and took a desperately needed nap. Unfortunately, she vomited about 10 minutes into her nap and had to start all over. After I got her all cleaned up, she slept peacefully for the rest of the afternoon. She even got some of her appetite back and ate a little tortellini for dinner. She was very happy to see her mother, and spent lots of time giving her hugs and kisses and telling her she loved her. Josh was just as happy to see me, but Josh, I am unhappy to report, has a cold. He won't be allowed near his sister until his cold clears up, so they won't see each other at all this weekend. Katie asked for Josh too, but she accepted it well when we told her why he wouldn't be allowed to visit.
At this point, we are going to wait and see how Katie handles the new anti-biotic and anti-fungal medications. If things are pretty much the same next week, she will probably have her bone marrow pulled and tested on Wednesday. The bone marrow test will let the doctors know whether her marrow is producing healthy cells like it should be or whether it is producing leukemia cells again which might explain why her cell counts are not coming back up like they are supposed to. Hopefully, she recovers before that time and the tests only show healthy, productive cells that were just repressed for a while by a combination of chemotherapy and a viral infection.
With these happy thoughts in mind, I will now curl up next to my son and go to sleep in this tent with the smell of camp fire smoke in the air. This is our first camping trip of the year, even if it is in the back yard, and I will make the best of it.
Thursday, March 6, 2008
A Timely Transfusion
Katie is at Fletcher Allen right now getting her fourth transfusion and she really needed it again. Her hemoglobin numbers have been dropping steadily since starting this latest round of chemotherapy and it finally caught up with her. She was tired this morning--very tired, and she was complaining about a headache yesterday afternoon. She hadn't gotten out of bed by the time I left for school, and when I talked to Amy two hours later she was sleeping in the car. We are also wondering if she may be coming down with something or if she is feeling nauseous due to her chemotherapy despite her anti-nausea medicine. She vomited in the car this morning, and she hasn't had vomiting issues before.
This just in. Amy called while I was writing this post, so I can add some additional information.
Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.
I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.
The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.
This just in. Amy called while I was writing this post, so I can add some additional information.
Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.
I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.
The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.
Monday, February 25, 2008
More from Monday
We are home and the kids are in bed. We got home just shy of 14 hours after we left for the day and the kids are tired. For that matter, so are the parents. Josh went with us today for the first time since coming to visit us in the hospital during our first stay. He got to watch as his sister had her port cleaned and accessed, as she was actually given anesthesia and put to sleep, and as she received her various chemotherapy infusions. He also got to while away the hours with us, just hanging out in the hospital room and the infusion bay. When we asked what his thoughts of the day were, he summed it up with one word - boring. He was sorry that his sister had to go through that, he definatley didn't want to have to go through that, but he also didn't want to have to stick around and wait for it all to happen either. I think he has a new appreciation for why we keep sending him to school even when we have to turn around and head to Burlington after dropping him off.
In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.
As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.
Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.
In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.
As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.
Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.
Oh My! What a Day.
We left our house at 7am this morning, arrived at Fletcher Allen by 9:15 and didn't leave the hospital again until 4:30 this afternoon. We found out all sorts of information today, including the fact that a research facility that has been testing Katie's early marrow and blood samples has found what they believe are monoblasts, a symptom of AMoL, not ALL. This new information has changed how Katie's chemotherapy will be handled in the future. She will now be receiving a combination of drugs and treatments designed to kill off both ALL and AML.
Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".
Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.
I'll give a longer update when we get home.
Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".
Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.
I'll give a longer update when we get home.
Sunday, February 24, 2008
Reality Check
This last four to five days have provided quite a reality check and a view into just how much the chemotherapy is affecting Katie. Since her next round of chemotherapy was postponed until Monday, she has been nine days without any drugs in her body and she is finally acting like the little girl that we knew before she got sick.
It was impossible to tell how much the drugs were affecting her earlier because when we first brought her to the doctor she was feeling lethargic and yucky from having one cold after another, not getting any sleep at night and being anemic. That general feeling has just sort of stayed with her for the entire duration of her treatment so far with little burst of energy here and there to remind us that she was still the same little girl, she was just struggling.
Now that the chemo is gone she is full of energy (we have to force nap time and bed time now), she is playing all day long, running around the house, dancing, jumping, giggling and just being a kid. This is, of course, a brief respite because the chemo will start up again tomorrow and it has to to continue battling the leukemia in her blood and bone marrow. But it has been nice to have our healthy feeling little girl back for a few days.
This morning, her last day without chemo, we are going to do a slightly brave, probably stupid thing and take her out to breakfast at Parson’s Corner. It is a small, family owned restaurant run by our neighbor and the kids just love eating pancakes there. Her blood counts are all good and she is allowed to have visitors and get out of the house, so we are expecting this to be a positive experience with no negative consequences.
Have a nice day. We will be.
It was impossible to tell how much the drugs were affecting her earlier because when we first brought her to the doctor she was feeling lethargic and yucky from having one cold after another, not getting any sleep at night and being anemic. That general feeling has just sort of stayed with her for the entire duration of her treatment so far with little burst of energy here and there to remind us that she was still the same little girl, she was just struggling.
Now that the chemo is gone she is full of energy (we have to force nap time and bed time now), she is playing all day long, running around the house, dancing, jumping, giggling and just being a kid. This is, of course, a brief respite because the chemo will start up again tomorrow and it has to to continue battling the leukemia in her blood and bone marrow. But it has been nice to have our healthy feeling little girl back for a few days.
This morning, her last day without chemo, we are going to do a slightly brave, probably stupid thing and take her out to breakfast at Parson’s Corner. It is a small, family owned restaurant run by our neighbor and the kids just love eating pancakes there. Her blood counts are all good and she is allowed to have visitors and get out of the house, so we are expecting this to be a positive experience with no negative consequences.Have a nice day. We will be.
Friday, February 22, 2008
Why The Delay?
Not that we were anxious to give Katie more drugs and make her feel bad again, but we were really curious about the results of the MRD test and we wanted to know what the hold up was. Well, we found out.
Early on I think I wrote that we had chosen to take part on a study where Katie would get a chemotherapy regiment that was being tested for its effectiveness. The doctors promised us that the tests were very controlled and very safe and that her health and progress would be monitored very closely to make sure that the leukemia was killed off as quickly and completely as possible with as few long-lasting side effects as possible. That part sounded good, but so did the next part.
Because the study is nationwide, and lots of doctors and scientists are trying to find better cures for leukemia, many people would be looking at Katie's test results and sending their data back to Fletcher Allen. Essentially we would be getting a free second, third or even fourth opinion on her test results at times.
Well, it paid off because that is what is holding us up right now. Two research centers currently disagree about Katie's last test results and those results determine her next round of chemotherapy. So her marrow is being tested and retested to make sure that she gets the best treatment possible, using the most accurate information available. I am very happy to be participating in the study.
Early on I think I wrote that we had chosen to take part on a study where Katie would get a chemotherapy regiment that was being tested for its effectiveness. The doctors promised us that the tests were very controlled and very safe and that her health and progress would be monitored very closely to make sure that the leukemia was killed off as quickly and completely as possible with as few long-lasting side effects as possible. That part sounded good, but so did the next part.
Because the study is nationwide, and lots of doctors and scientists are trying to find better cures for leukemia, many people would be looking at Katie's test results and sending their data back to Fletcher Allen. Essentially we would be getting a free second, third or even fourth opinion on her test results at times.
Well, it paid off because that is what is holding us up right now. Two research centers currently disagree about Katie's last test results and those results determine her next round of chemotherapy. So her marrow is being tested and retested to make sure that she gets the best treatment possible, using the most accurate information available. I am very happy to be participating in the study.
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.
Friday, January 18, 2008
The Katherine (Katie) Grace Kelley Blog
What & Why?
This Blog exists because Katie was just diagnosed with Acute Lymphomic Leukemia and we, her parents, want the people who know and love her to be able to follow her daily progress as we battle this disease.Who?
Katie is the daughter of Rick and Amy Kelley of Barton, Vt. She is two years old. She has one brother, Josh, who is five years old. She loves basketball, dogs, cats, and especially horses.When?
Katie was first diagnosed with Leukemia Tuesday, January 15, 2008. She had been sick for a few days at home, coughing all night long and having trouble sleeping. She was pale, weak, and tired. She had also been sick off and for a little more than a month. Amy scheduled a doctors appointment for after work and we picked her up from day care and had her to he doctor's office in time for her 5:20pm appointment. By 6:30 we had been sent to North Country hospital for x-rays and lab test to figure out why she wasn't getting any better. At around 8:30pm, her pediatrician informed us that the blood samples taken in the lab indicated that she might have Leukemia and that she would be transfered to Fletcher Allen for further testing.The next morning, she took her first ambulance ride to Fletcher Allen for testing of her bone marrow.
Where?
Katie is currently a patient at the Vermont Children's Hospital, a part of the Fletcher Allen Hospital.
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