Things can change in an instant. They sure did for all of us when we heard dad had AML. And, they did again today when we heard that the leukemia has again spread to dad's bloodstream. If you remember, his post-chemo bone marrow biopsy showed leukemia cells still in his marrow. Since then, the leukemia has done its dirty work and spread. Dad's blood counts had decreased over the last week, but yesterday was the first time they noticed an indication of leukemia in the blood.
If dad were well enough, the doctors would recommend the next course of treatment - chemo, bone marrow transplant - but he is not. He's still quite ill and they can't seem to fix him. It seems that perhaps parts of his body are done fighting before we expected.
The entire family (sans Jon) gathered in the hospital room with dad to hear the options from the doctor. After hearing the grim reality of the situation - that, given his type of AML a chance of achieving remission from chemo is around 20% and with a transplant is around 40% - and the fact that there is no possibility of such treatment any time in the near future because he's ill, Dad has decided to change the focus of his care to hospice care.
We support and completely understand the decision. Tomorrow they'll start the process of moving him to a hospice facility and in the mean time will change his care to focus on comfort and not treatment.
It's obviously a difficult time for all of us. I'll update when we know where he'll be staying.
Showing posts with label treatment plan. Show all posts
Showing posts with label treatment plan. Show all posts
Tuesday, April 12, 2011
Saturday, April 9, 2011
April 8 Update
I apologize that it's been so long since the last update. In some ways things not much has changed so there hasn't been much to share. Dad remains at the James to tackle his intestinal issues related to Ogilvie Syndrome.
I asked a nurse what would cause such a serious case of Ogilvie Syndrome and if it was a side effect of the chemo or being so ill or what. She said many chemo patients have gut problems, though Dad's case is unusual, and that if he had been well enough to leave the hospital and walk around it would likely be a different scenario. But, it's not a direct result of the chemo, and more likely from being so ill and essentially bedridden.
Dad has returned to dialysis treatments, but not for blood cleansing and only to remove fluid. (Sorry, I forget the particular name of it!)
I promise that I will keep you updated when things change.
Ogilvie syndrome, or acute colonic pseudo-obstruction (ACPO), is a clinical disorder with the signs, symptoms, and radiographic appearance of an acute large bowel obstruction but with no evidence of distal colonic obstruction. The colon may become massively dilated and must be "decompressed."So, the past week or so has been spent trying different methods to decompress Dad's colon and get it back into action again. A procedure on Thursday went well and will likely be repeated on Monday.
I asked a nurse what would cause such a serious case of Ogilvie Syndrome and if it was a side effect of the chemo or being so ill or what. She said many chemo patients have gut problems, though Dad's case is unusual, and that if he had been well enough to leave the hospital and walk around it would likely be a different scenario. But, it's not a direct result of the chemo, and more likely from being so ill and essentially bedridden.
Dad has returned to dialysis treatments, but not for blood cleansing and only to remove fluid. (Sorry, I forget the particular name of it!)
I promise that I will keep you updated when things change.
Monday, March 28, 2011
March 28 Update
Dad seems to be doing his best to check the box on every single chemo - related complication. At the moment he's dealing with a stomach issue that hasn't allowed him to eat in a week. Thankfully, the doctors have decided to go with TPN - Total Parenteral Nutrition.
While this is obviously not the ideal way to receive nutrients, it's necessary and we hope it will help Dad regain some strength and energy. The TPN is temporary until the gastro-intestinal doctors determine his belly and intestines are well enough for food - hopefully in a few days.
Obviously, the GI issues have delayed transfer to Dodd for medical rehab, but that remains the goal on the horizon. Dad remains is decent spirits (despite the Ohio State loss), but he's still pretty wiped out and exhausted.
Thanks for your continued thoughts and prayers.
It provides your body with nutrition such as protein, sugar, vitamins, minerals, and sometimes fat (lipids). TPN is used when you are unable to eat or cannot get enough nutrition from the foods you eat. TPN always goes into your vein (blood vessel) through an intravenous (in-truh-V-nus) (IV) line.
While this is obviously not the ideal way to receive nutrients, it's necessary and we hope it will help Dad regain some strength and energy. The TPN is temporary until the gastro-intestinal doctors determine his belly and intestines are well enough for food - hopefully in a few days.
Obviously, the GI issues have delayed transfer to Dodd for medical rehab, but that remains the goal on the horizon. Dad remains is decent spirits (despite the Ohio State loss), but he's still pretty wiped out and exhausted.
Thanks for your continued thoughts and prayers.
Friday, March 18, 2011
Bone Marrow Results
We were all VERY anxious to hear the results of Dad's first post-chemo bone marrow biopsy. The biopsy shows 6% leukemia cells, which is obviously not the complete remission we were hoping for, but there was some positive news. The bone marrow is functioning because there were also platelets, white blood cells and other "good" things as well.
The plan is to transfer Dad to Dodd Hall for medical rehabilitation. The goal of the rehab is to get Dad as strong as possible so he can go home. The combination of being very ill, intense chemotherapy and his preexisting mobility issues (from foot surgeries) have left him in a condition that he needs therapy to regain some of his independence and mobility. We're excited that he's going to such a great program, even if it is referred to as "boot camp."
In 2 to 3 weeks when Dad is stronger and feeling better, they will perform another Bone Marrow Biopsy to compare and see how / if the leukemia is spreading. Future treatment will depend on that biopsy and how well Dad is recovering.
The best news of the day is that Dad was able to go outside for a bit - for the first time in 6 weeks since being admitted to the hospital. It's a beautiful day today, a far cry from the ice storm at the end of January.
The plan is to transfer Dad to Dodd Hall for medical rehabilitation. The goal of the rehab is to get Dad as strong as possible so he can go home. The combination of being very ill, intense chemotherapy and his preexisting mobility issues (from foot surgeries) have left him in a condition that he needs therapy to regain some of his independence and mobility. We're excited that he's going to such a great program, even if it is referred to as "boot camp."
In 2 to 3 weeks when Dad is stronger and feeling better, they will perform another Bone Marrow Biopsy to compare and see how / if the leukemia is spreading. Future treatment will depend on that biopsy and how well Dad is recovering.
The best news of the day is that Dad was able to go outside for a bit - for the first time in 6 weeks since being admitted to the hospital. It's a beautiful day today, a far cry from the ice storm at the end of January.
Tuesday, March 15, 2011
Big Day!
As I write, the doctors are removing a sample of Dad's bone marrow for a biopsy. We should have results Friday. Fingers crossed for good news. So nerve wracking...
Saturday, March 12, 2011
We Have Counts!
After some pretty depressing updates, I finally have some good news to share! Dad's daily blood tests indicated he is coming out of nadir and his body is creating the normal, necessary blood cells! We have blood counts! Obviously, the numbers are incredibly low, but the great part is that his body created white blood cells, hemoglobin, and platelets on his own without transfusions! And, where there were zeros there are now numbers. Go Dad!
We have been cautioned not to get too excited or ahead of ourselves, but it is nice to have some good news to share after a rough couple weeks.
Dad is returning to dialysis today as he's still in kidney failure. His confusion returned after not having dialysis for several days, but the goofiness was a little less alarming since it was cleared up so quickly after previous dialysis treatments. And, if there's any indication of the fact that Dad is doing much better it's this: he's annoyed at the timing of dialysis because it may interfere with watching the Buckeyes tournament game today. :)
We have been cautioned not to get too excited or ahead of ourselves, but it is nice to have some good news to share after a rough couple weeks.
Dad is returning to dialysis today as he's still in kidney failure. His confusion returned after not having dialysis for several days, but the goofiness was a little less alarming since it was cleared up so quickly after previous dialysis treatments. And, if there's any indication of the fact that Dad is doing much better it's this: he's annoyed at the timing of dialysis because it may interfere with watching the Buckeyes tournament game today. :)
Friday, March 4, 2011
March 4 Update
After some back and forth between Dad's Oncologists and Nephrologists, dialysis was started this afternoon. The hope is obviously that it will improve his kidney function, but that the process will decrease his fluid retention and level of confusion.
I mentioned the other day, it was obvious his hair was falling out so Mike shaved Dad's head yesterday.
Dad is in nadir - the point when his blood cells are their lowest point after chemo. We're told it lasts about a week.
This is a very difficult time in the treatment. Pretty much sucks. A lot. All we can do is hope and pray that it gets better for Dad very soon.
I mentioned the other day, it was obvious his hair was falling out so Mike shaved Dad's head yesterday.
Dad is in nadir - the point when his blood cells are their lowest point after chemo. We're told it lasts about a week.
This is a very difficult time in the treatment. Pretty much sucks. A lot. All we can do is hope and pray that it gets better for Dad very soon.
Wednesday, March 2, 2011
The Good, The Bad & The Ugly
The Good: Dad had an echocardiogram yesterday to compare to an echo he had when first admitted to the hospital. Chemo can be very toxic to the heart so they compared the pre-chemo echo with the test yesterday. Yesterday's echo showed no damage from the chemo and that his heart is functioning in the same ranges as before.
The Bad: Dad's kidney functions continue to deteriorate. (But, as one nurse said yesterday, "Kidney function comes back" so better to have kidney complications than heart complications.) They are adjusting his medications - stopping some, changing and lowering others - because his body isn't metabolizing the drugs as it should. He's acting quite loopy and confused and one theory is that his body isn't breaking down the pain killers he's so that, in effect, he's super drugged up. Add to that the fact that dad finds the lights in the hospital uncomfortable so he's wearing sunglasses. He looks a bit like Charlie Sheen - wearing sunglasses indoors and acting loopy.
The bone marrow biopsy originally planned for today has been postponed. If the biopsy was revealed leukemia they would recommend additional chemo, but he's not well enough for another course now so there's no point in the biopsy at this point.
The Ugly: The water / fluid retention is so bad that dad's feet and legs are horribly swollen. It looks extremely uncomfortable. We really hope they figure out some way to release the fluids so he can regain some mobility and level of comfort.
And, The Anticipated: We're entering the hat phase as dad is very clearly losing his hair.
Monday, February 28, 2011
Rough Couple Days
We knew last week was too good to be true and that, at some point, the effects of chemo would truly get to dad. The past couple days have been a little rough. He's been demoted to "step down" status which means he's under more careful observation and gets his vitals every two hours rather than every four. He was step down when initially admitted, upgraded last week, and returned to step down over the weekend.
Dad is exhausted and has a bit of "chemo brain" (memory loss, confusion), which is obviously to be expected. The primary complication at this point is kidney function. His creatinine levels are very high and if the levels aren't under control in the next couple days they will have to do / consider dialysis. They decided today to stop all fluids via IV to help curb the fluid retention.
His blood counts are all very low so dad's receiving platelet and blood transfusions. He had fevers over the weekend and they can't do transfusions when he has a fever so that was problematic. But, the temp has been under control for the last day or two.
Bone marrow biopsy is scheduled for Wednesday. Please continue to send good thoughts and prayers.
Dad is exhausted and has a bit of "chemo brain" (memory loss, confusion), which is obviously to be expected. The primary complication at this point is kidney function. His creatinine levels are very high and if the levels aren't under control in the next couple days they will have to do / consider dialysis. They decided today to stop all fluids via IV to help curb the fluid retention.
His blood counts are all very low so dad's receiving platelet and blood transfusions. He had fevers over the weekend and they can't do transfusions when he has a fever so that was problematic. But, the temp has been under control for the last day or two.
Bone marrow biopsy is scheduled for Wednesday. Please continue to send good thoughts and prayers.
Wednesday, February 23, 2011
No News is Good News
It's been a few days since I last updated, but that is mainly because there isn't much of anything to report. And that's a good thing! And speaking of good news, the results from Monday's spinal tap have come back and there is NO Leukemia in dad's spinal fluid. Great news!
Dad finished the three days of blast chemotherapy and today is his last day of receiving Cytarabine. His main side effect at this point is exhaustion, which is obviously to be expected. The doctors have warned him it will likely get worse before it gets better, but he can do it!
Amy has been experimenting with her new culinary specialty: Cooking for Chemo. She's prepared a variety of healthy food for dad and he's found a new favorite in quinoa. The nurses on dad's floor agree that he's eating the best food in the hospital.
Thanks for your continued support.
Dad finished the three days of blast chemotherapy and today is his last day of receiving Cytarabine. His main side effect at this point is exhaustion, which is obviously to be expected. The doctors have warned him it will likely get worse before it gets better, but he can do it!
Amy has been experimenting with her new culinary specialty: Cooking for Chemo. She's prepared a variety of healthy food for dad and he's found a new favorite in quinoa. The nurses on dad's floor agree that he's eating the best food in the hospital.
Thanks for your continued support.
Saturday, February 19, 2011
Chemo Day 3
Dad had his third and final "blast" of Daunorubicin this evening. Only four days left of Cytarabine. Please continue to send good thoughts in his direction.
The past couple days have been filled with ups and downs. His fever has spiked at times, but not since Friday. He has been on IV fluids since he entered the hospital and, as a result, has gained some water weight. He was placed on a drug to help flush out some of the excess fluids, but it didn't have the desired effect and, rather, put some strain on his kidneys. After stopping that drug, his kidney function returned to normal so they have decreased his amount of IV fluids.
Dad is getting steroids to combat the nausea which is affecting his blood sugar. It's a known consequence so they aren't surprised by the side effect. The result is that Dad is getting more frequent insulin shots. We've stocked his room with plenty of sugar free candies and diet iced tea, which has tasted good to him so far.
Thanks for all your continued love and support. We all appreciate it!
The past couple days have been filled with ups and downs. His fever has spiked at times, but not since Friday. He has been on IV fluids since he entered the hospital and, as a result, has gained some water weight. He was placed on a drug to help flush out some of the excess fluids, but it didn't have the desired effect and, rather, put some strain on his kidneys. After stopping that drug, his kidney function returned to normal so they have decreased his amount of IV fluids.
Dad is getting steroids to combat the nausea which is affecting his blood sugar. It's a known consequence so they aren't surprised by the side effect. The result is that Dad is getting more frequent insulin shots. We've stocked his room with plenty of sugar free candies and diet iced tea, which has tasted good to him so far.
Thanks for all your continued love and support. We all appreciate it!
Friday, February 18, 2011
We Have Lift Off.
Dad started chemotherapy last night around 6 in the evening. He will receive 30 minutes "blasts" of one drug for 3 days and a constant drip of the other for 7 days.
Let's all send lots of healthy, cancer-killing vibes to Dad.
PS: Thanks for the comments on the last post! Very cool.
Let's all send lots of healthy, cancer-killing vibes to Dad.
PS: Thanks for the comments on the last post! Very cool.
Thursday, February 17, 2011
Thursday Update
After yet another day of waiting on tests (yesterday), today the decision was made to move forward with standard chemotherapy treatment.
The results from the bone marrow biopsy were released yesterday and the doctors had quite the conference to discuss treatment. Dad's version of AML involves / is called Complex Karyotype. I've had a hard time finding material on what this means, exactly, but the doctors made it clear that it's not particularly good and indicates a very aggressive leukemia. There are many subtypes of AML and they are numbered. When I asked for a number the doctor said this didn't fall into one, and that the Complex Karyotype is the important factor in the marrow results. (Some other aspects of the biospy were good - like being FLT3 negative - but the Complex Karyotype is the overriding factor in treatment decisions.)
Yesterday during their conference, the doctors decided that the best course of treatment would be to get dad into the trial, and we knew they wanted to do this since they kept delaying the start of any treatment in the hopes that dad's lab results would improve enough for him to qualify. While his liver function did make the threshold for trial today, some other results actually worsened. So, earlier today the doctor made the call that she doesn't want to wait any longer to start traditional (non-drug trial) AML chemotherapy treatment.
Dad - and some family in the room - got the run down on chemotherapy protocol and they are prepping dad to start chemotherapy today. I will update the chemo schedule on the right after I find out what it is.
And, in case you're wondering, dad does look at the blog so PLEASE leave comments and your words of encouragement. I know he'd love to read them.
The results from the bone marrow biopsy were released yesterday and the doctors had quite the conference to discuss treatment. Dad's version of AML involves / is called Complex Karyotype. I've had a hard time finding material on what this means, exactly, but the doctors made it clear that it's not particularly good and indicates a very aggressive leukemia. There are many subtypes of AML and they are numbered. When I asked for a number the doctor said this didn't fall into one, and that the Complex Karyotype is the important factor in the marrow results. (Some other aspects of the biospy were good - like being FLT3 negative - but the Complex Karyotype is the overriding factor in treatment decisions.)
Yesterday during their conference, the doctors decided that the best course of treatment would be to get dad into the trial, and we knew they wanted to do this since they kept delaying the start of any treatment in the hopes that dad's lab results would improve enough for him to qualify. While his liver function did make the threshold for trial today, some other results actually worsened. So, earlier today the doctor made the call that she doesn't want to wait any longer to start traditional (non-drug trial) AML chemotherapy treatment.
Dad - and some family in the room - got the run down on chemotherapy protocol and they are prepping dad to start chemotherapy today. I will update the chemo schedule on the right after I find out what it is.
And, in case you're wondering, dad does look at the blog so PLEASE leave comments and your words of encouragement. I know he'd love to read them.
Wednesday, February 16, 2011
More Waiting
Yesterday ended up being another day of waiting for test results that delayed the start of chemotherapy. They are trying very hard to include dad in a study that involves an oral chemo drug not yet part of the normal drug protocol for AML. (The chemo schedule on the right is based on being in the trial.) His liver function has been too high to allow him to take part in the study, but they were able to improve the numbers yesterday so they delayed totally rejecting him from the trial and decided to wait until today. They planned to take more tests this morning and, based on his liver function, make the final decision that he will a) be a part of the trial or b) start "regular" AML chemo. Either way, they said he would start chemo today. I think we're all anxious for that to start.
Part of the bone marrow biopsy results came back, but they are still waiting for more typing and testing. But, the diagnosis of AML was confirmed - in the back of my mind I hoped it would be negative and they had all made some sort of mistake... There are several subtypes of AML that don't have an immediate impact on his treatment plan, but are helpful and important to know going forward. We hope to get the final biopsy results today.
To prepare for chemo to begin, dad had a Groshong catheter placed yesterday. A few hours after the surgery to place it, they took an X-Ray to check its placement and noticed dad has pneumonia. The Nurse Practitioner didn't seem too alarmed by the pneumonia and said that, if anything, it's helpful because they know what has been causing dad's fever. They switched his antibiotics to something to specifically fight the pneumonia, but other than that it really has no effect on starting chemo or anything else.
If all goes according to plan, dad will start chemo one way or another today, so please keep him in your thoughts.
Part of the bone marrow biopsy results came back, but they are still waiting for more typing and testing. But, the diagnosis of AML was confirmed - in the back of my mind I hoped it would be negative and they had all made some sort of mistake... There are several subtypes of AML that don't have an immediate impact on his treatment plan, but are helpful and important to know going forward. We hope to get the final biopsy results today.
To prepare for chemo to begin, dad had a Groshong catheter placed yesterday. A few hours after the surgery to place it, they took an X-Ray to check its placement and noticed dad has pneumonia. The Nurse Practitioner didn't seem too alarmed by the pneumonia and said that, if anything, it's helpful because they know what has been causing dad's fever. They switched his antibiotics to something to specifically fight the pneumonia, but other than that it really has no effect on starting chemo or anything else.
If all goes according to plan, dad will start chemo one way or another today, so please keep him in your thoughts.
Monday, February 14, 2011
No Chemo Today
The chemo start date has been pushed back for at least a day. Dad's heart rhythm isn't stable so they are hoping to get that under control today. I think we're all a little disappointed as he's ready to start kicking leukemia's ass.
Dad had a pretty high fever last week that finally returned to normal on Saturday. Unfortunately it returned again yesterday. The fever seems to be causing some delirium or confusion and he had another bout of that last night. Dr. Klisovic (the lead oncologist) thinks the confusion is from the fever and too much activity yesterday that wore him out, but if it continues they may have to check to make sure the leukemia is not in the spinal fluid. The doctor doesn't want to scare us (any more than we already are) with the possibility of it being in the spinal fluid, and we will cross that bridge IF it comes to that.
The plan for today is for dad to be calm, get lots of rest and get the heart rate to "settle down." They also plan to put the chest port in for the intravenous chemo (that will now start Saturday) and get another skin biopsy.
Dad had a pretty high fever last week that finally returned to normal on Saturday. Unfortunately it returned again yesterday. The fever seems to be causing some delirium or confusion and he had another bout of that last night. Dr. Klisovic (the lead oncologist) thinks the confusion is from the fever and too much activity yesterday that wore him out, but if it continues they may have to check to make sure the leukemia is not in the spinal fluid. The doctor doesn't want to scare us (any more than we already are) with the possibility of it being in the spinal fluid, and we will cross that bridge IF it comes to that.
The plan for today is for dad to be calm, get lots of rest and get the heart rate to "settle down." They also plan to put the chest port in for the intravenous chemo (that will now start Saturday) and get another skin biopsy.
Subscribe to:
Posts (Atom)