Day 8 Hospitalized: Cleveland Clinic
CBC: Whites: .57; Hemogloblin: 7.9; Platelets: 47,000; ANCs .48
Liver Function: Total Bilirubin: 8.7! (Normal 1.5); Alkaline Phosphatase: 219 (Normal 45-115); ALT: 52 (Normal: 7-56); AST: 46 (Normal 5-40);
Blood coagulation: PT sec: 11.1 (Normal 9.5-13.8); PT INR: 1.0; APTT: 36.3
Fever continues to stay in the 99 degree area, which technically is not
considered a fever. Headache is persistent, especially after getting
out of bed. Hemoglobin is still low and they had to give him a unit of
blood this morning. His ANCs are also low and he is now neutropenic
making him a higher risk for catching other infections! Bilirubin
numbers the highest yet at 8.7. Dr.Sekeres, the attending physician was upset he took his AG221 this
morning, but we didn't have the results back and there was no note to
wait. Everyone yesterday, was like yes, get back on it! Sometimes, it feels like you can't win.
Dr. Sekeres, feels comfortable with letting Todd be discharged tomorrow since they know he has the Rhinovirus and the fevers are gone. However, this is conditional and if they discharge him, he
will still require rigorous out-patient care, which makes his BMT doctor
and trial nurse a little leery and concerned about discharging him. His BMT doctor has the final say, and she is not going to let him go without multiple appointments for CBCs an visits with the local oncologists to set up transfusions and to keep an eye
on his bilirubin.
When his trial nurse came in before noon, she was not very confident about releasing him so soon. She said a lot would have to happen. First, they would have to make sure there are no complications or other problems between now and then. Second, they may need to give him another unit of blood by the end of the day, to help boost him before discharge, because he hasn't been getting the 1.0 boost with the prescribed 1 unit transfusion in the past several days or in other words, his hemoglobin has not been increasing enough after transfusions like they should. Third, he would need to see his local oncologist as early as Friday, to have a repeat CBC done to check blood counts and bilirubin counts. Multiple appointments would then need to be set up for next week, every couple of days, to check counts again. Treatment appointments for transfusions, would follow if necessary. Fourth, he has to be seen 5 days post-discharge, which means we would likely have to come back up to Cleveland by next Thursday (no weekend days are counted) or he may be evaluated by local oncologist, if Dr. Hamilton, BMT doctor feels comfortable with this. I know it is difficult for them to not be there to make this critical decisions. Repeat x-rays will also be necessary at some point too.
Right now, Todd has a killer headache and still feels poorly, he just got some pain meds and is sleeping. It is hard for me to think about discharging him with low blood counts and him feeling so bad, but I know there is also risks of infections in a hospital too. So glad we made the trip up here, even if it was only for a few days. I feel like they have made better decisions for his care here. No regrets. Wish we had done it sooner. Next time, I might just drive him up to Cleveland myself, right away, as long as he is not critical.
Showing posts with label Neutropenic. Show all posts
Showing posts with label Neutropenic. Show all posts
Wednesday, October 21, 2015
Tuesday, May 26, 2015
Hematological Response: End of Cycle 1 of AG-221
Todd reached a major milestone this past week, where he completed 28 days or the First Cycle of the trial drug study for AG-221. The Research Team kicked-off Day 1, Cycle 2, the following day, Thursday, May 21, 2015 with the standard 10 hours of blood draws, EKG, and another bone marrow biopsy at the Cleveland Clinic's Taussig Cancer Center.
The results at the end of just one cycle on the trial drug have been amazing! His blood counts have come up enough to go 4 weeks without needing a blood transfusion and his immune system has come up to allow him to go off antibiotics, get off the neutropenic diet, and live a little less restrictively for fear of getting an infection that could be deadly. It is also allowed the team to schedule to have his Hickman Central Catheter removed on the next visit. They have been wanting to take it out for fear of it causing an infection, but his immune system has been too low. Now, however, they feel it is strong enough to handle having the Hickman removed and having a port put in on the other side of his chest. His platelets are still under the recommended 50,000 for having this procedure done, but they will give him a unit of platelets during the procedure to help counteract any possible bleeding complications. If you have never seen someone with a port, it is a button-sized device that goes into a central vein, under the skin. So, when they need to draw blood, or give him an injection, the needle will go through the skin. Here is a brief overview of catheters and ports. He will have a catheter removed and an port put in: Port information.
Just to give you a comparison of how his counts have improved here is the 4 week difference:
4/20 4/30 5/7 5/14 5/21/15
Hemoglobin: 7.6 8.5 8.7 8.6 9.0 (low still: normal range 13.0 min.)
White: .47 .83 1.47 2.03 2.92 (low still; normal range 3.7 min.)
ANCs/Neutrophils: 00 .53 1.07 1.66 2.39 (now falls in lower end of normal)
Platelets: (1000s) 34 41 38 36 35 (Low still normal 150,000 min,)
Bilirubin(total): n/a 3.8 3.9 3.0 2.6 (want to drop; normal 0.0-1.5)
This is amazing! In just one cycle, he has seen this much improvement! You can see how he is no longer Neutropenic (when ANCs/neutrophils are .50 or lower) or no longer needs Transfusions (thresholds for Todd was 8.0 or lower). The elevated bilirubin is caused by the drug, however, you can see the numbers are dropping as his body adjusts better to the medication. The Indirect bilirubin numbers are fine and the research team is not worried about the elevated total bilirubin, as it would take his number to be 5x the normal or at 7.5 before they would adjust the dosage or make a change in his trial protocol. The only side effect of the higher bilirubin has been some jaundice, especially in his eyes.
The best news is, that the first bone marrow biopsy from Day 15, cycle 1, showed a normal range of blast cells in the bone marrow itself. There was still signs of diseased cell (ringed blasts), but the drug is helping to block the mutation to allow his blood cells to mature, leaving less blast cells in the marrow. There is also still chromosomal abnormalities found in the cytogenics results, which still show he is having the 5q deletion.
He had a second bone marrow biopsy done on Day 1, Cycle 2, but we have not received any results back from those yet. I asked the doctor if he would be considered to show a "response" or if they could say he was in remission, but she made it clear that Todd still has a way to go to ever say he would be in remission. Under the drug protocol, there are established guidelines for what constitutes a "partial response," a "complete response," or "remission." She stated that Todd would always have the diagnosis of MDS, actually relapsed MDS, that it would never go away. The only "curative" treatment was the transplant, and that failed. So, he cannot be "cured" of the disease at this time, but who is to say that there won't be a new curative treatment in the future. Research and technology are moving so fast in this field, that anything can change in a year. For example, this drug and the trials were not available a year ago!
I guess it would take not seeing any blast cells, any chromosomal deletions, and for his counts to be at a certain level before they can use the word remission. While he is not there yet, it is early in the treatment, and I feel confident that he can at least reach the level of a partial response soon.
I'm not sure if his blood counts will ever be "normal" again, but I think they can be close to it, or maybe on the low side of normal someday. In the meantime, he will still suffer from fatigue, some weakness, with a limited lifestyle or activity level, but he has already been forced to adjust to this.
I honestly feel so relieved that I don't doubt that he is getting better! While most of his counts are still below normal, we have already achieved the two main goals Dr. Stein, from Memorial Sloan Kettering Cancer Center in New York City, had in mind for Todd: to lessen his transfusions (which were 6-12 days apart) or to NOT BE transfusion dependent, and to NOT BE neutropenic. The idea that they now hope to remove his Hickman catheter and put in a port is wonderful! That means I won't have to flush his catheter lumen's every night, change his bandage and line caps once a week! He will only need to have the port flushed monthly. I'm not sure if that is something I will have to do, or whether a nurse will do it at his appointments. He will also be able to shower without covering it, and hopefully swim this summer!
Since he has he not been transfusion dependent, we haven't had to run to the local oncologist's office once or twice a week to have a CBC drawn to check his blood counts. That's a lot less running!
The first cycle of the study was a bit demanding on our schedule, having to go to Cleveland Clinic every week, and sometimes stay for 3 days, but that is behind us now. With the start of the second cycle, we only have to be there on Day 1, which we just did on May 21, and on Day 15 for a short visit! The same goes for Cycle 3. Day 1 will be a long 10-12 hour day (which will be mean a 3 day stay) and then he only has a short visit again on Day 15. After Cycle 3, he only has to go on the first day of each cycle from there on out! These days will be the long 10-12 days again, but we might be able to resume a more "normal" routine when all of these appointments are no longer necessary. All this is assuming that the drug continues to help and Todd responds positively to it, but I feel confident it will!
Todd began seeing a physical therapist finally for his shoulder stiffness and pain. It has helped some, but he still limited in using it. Our chiropractor had seen Todd before the transplant and then after, was in shock seeing how much muscle mass Todd has lost all over, but especially in his arm and shoulder. He felt that without the lack of muscle to help support the shoulder, it was making it harder for Todd to use it. Please continue to pray he will find some relief from this pain. It does inhibit his activity quite a bit and he can only take prescription pain medications, instead of any ibuprofen, and he doesn't like to take them and they don't seem to help as much as he would like. It wouldn't hurt if he could put on some weight or at least stop loosing it.
So, his next visit at the Cleveland Clinic will be June 4, 2015.
Family News
Wow, a lot has happened here too! Hannah Lewis graduates this Saturday! We've had multiple year-end award assemblies, choir concerts, etc. to attend. I have been cleaning like mad, with the help of my many good friends and family (Pam, Vicki, Darsie, Dana, Lynda, Mom)! Two of Todd's friends from work came over and painted one of the garages for him (thanks Chris and Pat).
We were able to put our house on the market for sale this past week. It is all bittersweet. We know it has to go, but we will be sad to leave it as it has been a labor of love building it, finishing it, and living in it these past 12 years. Please pray for a buyer, for financing so we can purchase a smaller home, and for the entire selling/buying/moving process.
Two praises regarding finishing my Master Degree: I was able to find a practicum at the University of Dayton in the Library/Archives department starting this fall. I have to submit a lot of paperwork to Kent State in the new few weeks to get it ready, but hopefully everything will work out so I can begin in the fall. I start my summer class and workshop next month! So, I am hoping I will be able to juggle everything once that starts. Second, I was able to get into the class I needed for the fall semester. I was originally on a wait list, but Kent State contacted me last week, offering me an opening in the class! I needed to take this class to graduate this fall, so now I can apply to graduate in December.
It's been an emotional roller coaster this past year. I crave a "normal" life whatever that is! Change has been the only consistent thing in our lives. It would be nice to be able to settle down into a mundane routine and stay in one place for awhile. With our family having to be split-up last fall, with Todd and I in Cleveland, Abby in Cincinnati, Hannah Lewis and Ellie here with my mom, and now having to move from our house into somewhere new, it is a bit traumatic for all of us. I know it does no good to worry about the timing, and wondering who will buy our house and when, or where we will move and when, but I still feel there is a sense of dread or a cloud that hangs over me. It is hard to convenience myself that it is all somehow punishment for some reason. If it is not the cancer and Todd's health, or the finances, then it is the uncertainty of "home" that seems to hang over us. For me, it is emotionally fatiguing, this roller coaster ride we find ourselves on. I just want the ride to stop, so I can get off, sit down, and rest a while. I'm still suffering from vertigo (literally), and I wonder why? Life and this world keeps spinning, and I am trying to keep upright, without falling, despite all the obstacles.
I gave the entire family this little pep talk last year about how God was going to use Dad's cancer, us going to Cleveland, Abby going to college Cincinnati, and Ellie and Hannah Lewis staying here with grandma, to GROW AND STRETCH US in ways we couldn't imagine! I had forgotten about this until someone reminded me of it recently and gave me my own pep talk in return! I know that God continues to mold us, refine us, strengthen us, give us insight, compassion, empathy, make us lean, teach us that living with less is more, help us focus on what is really important, and that home, wherever it will be, will be us together as family. But growing and stretching usually doesn't come without a bit of pain!
Thanks for your love and support. We appreciate your prayers and generosity, which continues to amaze and bless us!
Reference:
* According to the National CML Society, http://www.nationalcmlsociety.org/living-cml/response
Hematological Response is a normalization of the blood counts, particularly white blood cell counts. This is the first noticeable indicator that treatment is beginning to work, though not necessarily in the bone marrow. The response can be partial HR (reduction in white cells,but not down to normal range) or complete CHR (white blood count at or below approximately 12,000 white cells/microliter).
The results at the end of just one cycle on the trial drug have been amazing! His blood counts have come up enough to go 4 weeks without needing a blood transfusion and his immune system has come up to allow him to go off antibiotics, get off the neutropenic diet, and live a little less restrictively for fear of getting an infection that could be deadly. It is also allowed the team to schedule to have his Hickman Central Catheter removed on the next visit. They have been wanting to take it out for fear of it causing an infection, but his immune system has been too low. Now, however, they feel it is strong enough to handle having the Hickman removed and having a port put in on the other side of his chest. His platelets are still under the recommended 50,000 for having this procedure done, but they will give him a unit of platelets during the procedure to help counteract any possible bleeding complications. If you have never seen someone with a port, it is a button-sized device that goes into a central vein, under the skin. So, when they need to draw blood, or give him an injection, the needle will go through the skin. Here is a brief overview of catheters and ports. He will have a catheter removed and an port put in: Port information.
Just to give you a comparison of how his counts have improved here is the 4 week difference:
4/20 4/30 5/7 5/14 5/21/15
Hemoglobin: 7.6 8.5 8.7 8.6 9.0 (low still: normal range 13.0 min.)
White: .47 .83 1.47 2.03 2.92 (low still; normal range 3.7 min.)
ANCs/Neutrophils: 00 .53 1.07 1.66 2.39 (now falls in lower end of normal)
Platelets: (1000s) 34 41 38 36 35 (Low still normal 150,000 min,)
Bilirubin(total): n/a 3.8 3.9 3.0 2.6 (want to drop; normal 0.0-1.5)
This is amazing! In just one cycle, he has seen this much improvement! You can see how he is no longer Neutropenic (when ANCs/neutrophils are .50 or lower) or no longer needs Transfusions (thresholds for Todd was 8.0 or lower). The elevated bilirubin is caused by the drug, however, you can see the numbers are dropping as his body adjusts better to the medication. The Indirect bilirubin numbers are fine and the research team is not worried about the elevated total bilirubin, as it would take his number to be 5x the normal or at 7.5 before they would adjust the dosage or make a change in his trial protocol. The only side effect of the higher bilirubin has been some jaundice, especially in his eyes.
The best news is, that the first bone marrow biopsy from Day 15, cycle 1, showed a normal range of blast cells in the bone marrow itself. There was still signs of diseased cell (ringed blasts), but the drug is helping to block the mutation to allow his blood cells to mature, leaving less blast cells in the marrow. There is also still chromosomal abnormalities found in the cytogenics results, which still show he is having the 5q deletion.
He had a second bone marrow biopsy done on Day 1, Cycle 2, but we have not received any results back from those yet. I asked the doctor if he would be considered to show a "response" or if they could say he was in remission, but she made it clear that Todd still has a way to go to ever say he would be in remission. Under the drug protocol, there are established guidelines for what constitutes a "partial response," a "complete response," or "remission." She stated that Todd would always have the diagnosis of MDS, actually relapsed MDS, that it would never go away. The only "curative" treatment was the transplant, and that failed. So, he cannot be "cured" of the disease at this time, but who is to say that there won't be a new curative treatment in the future. Research and technology are moving so fast in this field, that anything can change in a year. For example, this drug and the trials were not available a year ago!
I guess it would take not seeing any blast cells, any chromosomal deletions, and for his counts to be at a certain level before they can use the word remission. While he is not there yet, it is early in the treatment, and I feel confident that he can at least reach the level of a partial response soon.
The doctor will not categorize the results as anything but they can see that the drug has produced a "hematological response.*"
I honestly feel so relieved that I don't doubt that he is getting better! While most of his counts are still below normal, we have already achieved the two main goals Dr. Stein, from Memorial Sloan Kettering Cancer Center in New York City, had in mind for Todd: to lessen his transfusions (which were 6-12 days apart) or to NOT BE transfusion dependent, and to NOT BE neutropenic. The idea that they now hope to remove his Hickman catheter and put in a port is wonderful! That means I won't have to flush his catheter lumen's every night, change his bandage and line caps once a week! He will only need to have the port flushed monthly. I'm not sure if that is something I will have to do, or whether a nurse will do it at his appointments. He will also be able to shower without covering it, and hopefully swim this summer!
Since he has he not been transfusion dependent, we haven't had to run to the local oncologist's office once or twice a week to have a CBC drawn to check his blood counts. That's a lot less running!
The first cycle of the study was a bit demanding on our schedule, having to go to Cleveland Clinic every week, and sometimes stay for 3 days, but that is behind us now. With the start of the second cycle, we only have to be there on Day 1, which we just did on May 21, and on Day 15 for a short visit! The same goes for Cycle 3. Day 1 will be a long 10-12 hour day (which will be mean a 3 day stay) and then he only has a short visit again on Day 15. After Cycle 3, he only has to go on the first day of each cycle from there on out! These days will be the long 10-12 days again, but we might be able to resume a more "normal" routine when all of these appointments are no longer necessary. All this is assuming that the drug continues to help and Todd responds positively to it, but I feel confident it will!
Todd began seeing a physical therapist finally for his shoulder stiffness and pain. It has helped some, but he still limited in using it. Our chiropractor had seen Todd before the transplant and then after, was in shock seeing how much muscle mass Todd has lost all over, but especially in his arm and shoulder. He felt that without the lack of muscle to help support the shoulder, it was making it harder for Todd to use it. Please continue to pray he will find some relief from this pain. It does inhibit his activity quite a bit and he can only take prescription pain medications, instead of any ibuprofen, and he doesn't like to take them and they don't seem to help as much as he would like. It wouldn't hurt if he could put on some weight or at least stop loosing it.
So, his next visit at the Cleveland Clinic will be June 4, 2015.
Family News
Wow, a lot has happened here too! Hannah Lewis graduates this Saturday! We've had multiple year-end award assemblies, choir concerts, etc. to attend. I have been cleaning like mad, with the help of my many good friends and family (Pam, Vicki, Darsie, Dana, Lynda, Mom)! Two of Todd's friends from work came over and painted one of the garages for him (thanks Chris and Pat).
We were able to put our house on the market for sale this past week. It is all bittersweet. We know it has to go, but we will be sad to leave it as it has been a labor of love building it, finishing it, and living in it these past 12 years. Please pray for a buyer, for financing so we can purchase a smaller home, and for the entire selling/buying/moving process.
Two praises regarding finishing my Master Degree: I was able to find a practicum at the University of Dayton in the Library/Archives department starting this fall. I have to submit a lot of paperwork to Kent State in the new few weeks to get it ready, but hopefully everything will work out so I can begin in the fall. I start my summer class and workshop next month! So, I am hoping I will be able to juggle everything once that starts. Second, I was able to get into the class I needed for the fall semester. I was originally on a wait list, but Kent State contacted me last week, offering me an opening in the class! I needed to take this class to graduate this fall, so now I can apply to graduate in December.
It's been an emotional roller coaster this past year. I crave a "normal" life whatever that is! Change has been the only consistent thing in our lives. It would be nice to be able to settle down into a mundane routine and stay in one place for awhile. With our family having to be split-up last fall, with Todd and I in Cleveland, Abby in Cincinnati, Hannah Lewis and Ellie here with my mom, and now having to move from our house into somewhere new, it is a bit traumatic for all of us. I know it does no good to worry about the timing, and wondering who will buy our house and when, or where we will move and when, but I still feel there is a sense of dread or a cloud that hangs over me. It is hard to convenience myself that it is all somehow punishment for some reason. If it is not the cancer and Todd's health, or the finances, then it is the uncertainty of "home" that seems to hang over us. For me, it is emotionally fatiguing, this roller coaster ride we find ourselves on. I just want the ride to stop, so I can get off, sit down, and rest a while. I'm still suffering from vertigo (literally), and I wonder why? Life and this world keeps spinning, and I am trying to keep upright, without falling, despite all the obstacles.
I gave the entire family this little pep talk last year about how God was going to use Dad's cancer, us going to Cleveland, Abby going to college Cincinnati, and Ellie and Hannah Lewis staying here with grandma, to GROW AND STRETCH US in ways we couldn't imagine! I had forgotten about this until someone reminded me of it recently and gave me my own pep talk in return! I know that God continues to mold us, refine us, strengthen us, give us insight, compassion, empathy, make us lean, teach us that living with less is more, help us focus on what is really important, and that home, wherever it will be, will be us together as family. But growing and stretching usually doesn't come without a bit of pain!
Thanks for your love and support. We appreciate your prayers and generosity, which continues to amaze and bless us!
Reference:
* According to the National CML Society, http://www.nationalcmlsociety.org/living-cml/response
Hematological Response is a normalization of the blood counts, particularly white blood cell counts. This is the first noticeable indicator that treatment is beginning to work, though not necessarily in the bone marrow. The response can be partial HR (reduction in white cells,but not down to normal range) or complete CHR (white blood count at or below approximately 12,000 white cells/microliter).
Thursday, April 30, 2015
Seeing Early Results within 5 Days of Starting Trial Drug
 |
| Todd holds up the AG-221 Trial Study Drug |
We are so excited that Todd finally got to start the Trial Drug AG-221 on Monday, April 20, 2015, at the Cleveland Clinic. We had to be there from Sunday night April 19, through Thursday morning, April 23. My mom graciously stayed with the kids. Monday was a long day, beginning with testing at 7:15 a.m. He took the first dose of the drug: 200 mg or 2- 100 mg tablets with food around 9:00 a.m. with hourly tests of EKGs and blood draws for 10 hours beginning shortly after. His blood counts were low that day with his hemoglobin at 7.6; whites .47; platelets 34,000; and ANCs/neutrophils too low to count. So, once they checked the protocol to make sure it was alright to give him blood during the testing, they ordered him two units of blood to be transfused while he was there. We finished that day around 7:00 p.m.
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Overall, we are pleased with how everything went at Cleveland Clinic. Todd got to see his bone marrow transplant doctor on Monday and Thursday. I love the research nurses Ashley, Samantha, and Chad. They were very good to us. The Cleveland Clinic was able to fund our hotel stay for this initial visit at a nearby hotel between downtown Cleveland and the Clinic; mainly because we were on the waiting list for the Hope Lodge, but were unable to get in. We were able to submit travel expenses including Todd's meals and gas/mileage for reimbursement. On all other trips, we have to pay for our hotel stay, unless a room becomes available at the Hope Lodge, but we can submit those expenses also. God continues to provide for us!
While we were there, we visited our friend Rick, from the Transplant Floor. He had been admitted to the Leukemia floor trying to fight his relapsed AML since March. The chemo has taken the toll on him. His hands and feet were peeling and yellow from jaundice. He wasn't as responsive like normal. He has a bowel blockage and hasn't been able to eat solid foods; unfortunately, he can't control his bowels at all, they believe that is also a side-effect of the additional chemo. He has to have platelets and blood transfusions every day! They are also giving him potassium for his brain.
As a follow-up, I talked his wife on Wednesday, April 29, and they were in the process of moving him to hospice closer to home. The doctor said he may have 2 weeks to 2 months to live. He has 50% blast cells in his blood stream, and does not have the same gene mutation Todd does, which makes him ineligible for AG221 drug study. Please pray for him in his last days and for his family as they go through this difficult time.
Todd had to have routine blood work done on the following Monday, April 27, 2015. We were afraid he was going to need a transfusion, because he had been feeling fatigued the day before and spent most of the day in the bed resting. To our surprise, his numbers were good! He needed no transfusion since his hemoglobin count was at 8.8. His white count went up to 1.0 which hasn't been that high in weeks or months! His neutrophils were still low at .700, but at least he was above the neutropenia threshold of .500 and his platelets were at 60,000! We were praising God for these very early results. He had only taken 5 doses of the trial drug by this day and we want to believe that the increase was the result of the medication beginning to work.
The weekend we got back home, we started working on the house again, trying to get it ready to sell. We both worked a little too hard and too much, but not without help. That day, I had my good friend Dana come over and she went to work on helping clean out my bedroom closet, so it didn't look cramped or cluttered. We got a lot done! Monday, I spent finishing cleaning the closet and taping up boxes and moving them out to the garage with the help of my good friend Darsie. Tuesday, we were blessed with the help of our great friends Chris and Lynda; the guys worked outside in the yard and Lynda and I cleaned and straightened up the Piano Room and Dining Room. We got so much done!
In addition to working on the house, we have been selling our furniture and other items as we go. I take photos and then we post the items online and usually spend the next day or two taking emails, texts, calls, and arranging pick-up times. This has been a good strategy, since we are getting things removed now before showing the house and before I attempt a garage sale (which is so much work in relation to how little people are willing to pay).
By Wednesday we needed a break! We had to pack for our trip to The Cleveland Clinic, but at least I was able to help Ellie pack up some keepsakes in her room before leaving late that night. Thanks to Todd's mom Ann and our former neighbors Joni and Raymond, for all the boxes and packing materials!
We arrived around in Cleveland around 11 pm last night and hit the bed, since we had to be at the hospital the this morning, Thursday, April 30 before 7:30 a.m. The day's appointments went well. Todd saw his doctor and the research nurses got busy asking their questions, doing the EKG and blood work for the trial study. He was scheduled to have a transfusion today if his hemoglobin was below 8.5, but we learned that it was at exactly 8.5, so everyone was in agreement that since Todd was feeling pretty good, they were going to hold off on transfusing him for today. The rest of his numbers were down slightly, his whites went down to .830; his platelets down to 41,000; and the nurse contacted us later with the other numbers, namely his neutrophils, which have dropped to .530 making his nearly neutropenic again.
What's Next?
He is scheduled for routine blood work every Monday at the local oncologist's office, so we will see how his counts are on Monday, May 4, 2015. If he needs transfused, the local oncologist will make arrangements for him at Miami Valley Hospital before his next appointment at the Cleveland Clinic on Thursday, May 7, 2015. This is going to be another long day of tests, because it is Day 15, or about the half-way point of the Cycle 1 of his drug trial. In addition to hourly blood draws for 10 hours, he will have EKGs, and a bone marrow biopsy (his 15th? I think, he has had so many, I have lost count). They have also scheduled a treatment appointment for transfusion, if he hasn't had one by then and needs one. The protocol of taking the drug with food will also change at this point. Instead, he will have to fast for 2 hours before taking his scheduled dose at 9:00 a.m. and then wait for 1 hour after taking it before he can eat.
The only concern so far is his bilirubin levels, which were elevated, however, even this is expected in the beginning. The research nurse assured me that these levels typically come down as time goes on. They are not concerned about these levels because his liver numbers and the direct bilirubin numbers both looked good. They only thing that I noticed today, was a slight yellowing in the corners of his eyes; the nurse agreed that there was a slight bit of yellowing, but that this is a known side-effect of the drug. If it gets too high, they will interrupt the dose or decrease it, but that his current levels are no where near needing any of those adjustments now.
On a personal note, we will continue to work on getting our house ready to sell. Which means, I will be enlisting another round of volunteers to help me inside get things de-cluttered and cleaned for showing. Todd won't need much more help outdoors, but mainly indoors, with a bit of painting projects, changing light bulbs inside and outside (some days I don't want him on a ladder), and repairing a bit of drywall. Tomorrow, I'm going to help our oldest daughter Abby finish moving things out of her dorm room. I can't believe she is done with her Freshman Year of college already! I need to work on preparing a graduation party for Hannah Lewis, including buying decorations, ordering food, etc. Ellie's last club volleyball tournament is this Saturday: yahoo! And track season should be ending soon too.
Please pray:
- That we can get our house on the market in about two weeks. The market is still hot and we can't really buy or write a contract on anything til we have ours sold.
- That Abby and Hannah Lewis find jobs soon.
- That I can get get the majority of packing and selling done before I start summer classes in June. I also have to turn in my application for a fall practicum by June 6 or so, and I don't have one lined up yet. If I can't do this, I won't be able to graduate by the end of the year.
- Continued improvement of Todd's health and stamina; namely, that the drug will begin to help his counts go up and the need for transfusions go down.
- Family issues and dynamics as we continue to undergo weekly family counseling
- That the transition of moving to go smoothly. That God would open and close doors: find the right buyer for our house and the right house for us to buy. We have been struggling to find a house that isn't too big or too small that will give us enough financial breathing room while Todd is on disability and I finish my degree. The physical demands of moving and the emotions of giving up our home and most of our belongings is traumatic, even though we understand they are just material. This is the only home Ellie has really known and both of her siblings will be gone at college this fall; all this will be a big adjustment for her.
As always, we appreciate your love and outpouring of concern and support. It means so much, to see our friends and family helping us through all of this day by day.
Tuesday, February 3, 2015
Todd takes a Trip to the ER on Super Bowl Sunday
Sunday, February 1, 2015, Todd woke up with a roaring headache. I feared his blood counts were low and I urged him to let me take him in the get a CBC done and any necessary transfusions. He was stubborn and refused to go. He said he was getting a CBC the next morning and he could wait. I shouldn't have listened...
He stayed in the bed or sitting up in a chair the entire day. He took 2 Oxycodone tablets for the headache but he said they really didn't help.
I was busy doing homework after taking out youngest daughter to volleyball photos. I came in with my laptop and sit with him a while, until it was time for my online class meeting. I worked on assignments after that til after 10:30 pm. He was ready for me to flush his catheter lumens a little after 11:00 pm. While flushing his lines I made him take his temperature. I noticed he had a folded up cold washcloth near his bed he was using as a headache compress. I got very concerned then. Sure enough he had a fever of 101.3. We both looked at each other and decided to take it again. This time it was 101.4.
I grabbed my phone and had his local oncologist paged. I rushed around and started packing bags for both of us. I knew the protocol: any fever over 101 means a trip to the ER. After 25 minutes went by with no call back from the doctor, I had him paged a second time. This time the got him on the line while I waited. I explained the situation. He asked me what his counts were last Monday. And then he said to head out to the ER at Miami Valley Hospital and have the Fellow on call, Dr "C" paged so that Todd could be admitted.
The girls helped me finish packing and we drove out. We arrived about 1:00 am and they took us back to a room after getting his vitals.
They started the routine tests looking for infection: urinalysis, blood cultures, and a CBC to get blood counts. They gave him some Tylenol to lower his fever and started him on IV fluids, and an IV drop of antibiotics. They closed off his room and hung signs that anyone entering needed to wear a gown and mask. Even me and my dad, who came out for a few hours, had to wear masks.
When it came time to do the chest X-rays, he didn't do so well. The doctor really wanted him to go have the X-rays done in the lab instead of having a portable X-ray machine brought to his room. Apparently, they can get better X-rays if he stands. So they wheeled him down to X-ray, but he ended up passing out and falling during the X-rays. They got him back onto the bed and back to his room in the ER. They took his blood pressure which was the lowest I had ever seen it: 101/48. He was broke out in a cold sweat, with beads of sweat all over. He was exhausted and started to fall asleep, which would cause his oxygen saturation to drop so they put him on oxygen. The ER doctor had a hard time getting the Fellow on Call, Dr. "C" to come in. So, he had to ask me questions and then call Todd's local oncologist. This was a bit frustrating.
His blood counts were low: Hemoglobin 6.3; whites .7; and platelets around 13,000. His ANCs were about .5 making him neutropenic. This spoke volumes. Needless to say, Todd will be preemptive in the future to not let his counts go too low without having them checked in a timely manor.
They did a type and screen for his transfusion and we made our way to his room on the Bone Marrow Transplant unit on the 5th floor about 4:00 am. I have to pause here and tell you the overwhelming sense of dread that came over me as they wheeled Todd up to his room. Just the smell of the sterile environment and feel of the halls brought back memories of long days and nights at the Cleveland Clinic. The Blood and Marrow unit at Miami Valley is so small in comparison. This unit probably only has 10 rooms or less. They don't do any allogeneic transplants here, just autogolious. However, the same hand washing and sanitation protocols are in place.
They had to change his dressing and caps on his Hickman Catheter. He had sweated through his shirt and even his catheter dressing (bandage) . They started his blood, which came up as O+ instead of his typical B+ They had to use a universal blood type because that was all they had available. The nurse said they throw away B type blood, because they don't use it that much. It took all night to get the 2 units of blood. They had the drip on slow for the first 15 minutes to make sure he didn't have a reaction to it, but they were supposed to turn it up after that. I'm not sure they ever did.
At first they put an alarm on his bed, since he was now classified as a "Fall risk." But, after some time, they turned it off. He couldn't get up to go to the bathroom, so they had to give him a urinal by his to measure to his output. It was the longest night. I tried to fall asleep in the recliner chair next to his bed. They brought me some heated towels which helped, but I don't think I slept more than an hour or so. I had to set my alarm at 6:45, 7:00, and 7:15 to call home and make sure the girls got up for school. I was so tired that I texted Hannah some kind of cryptic Emjois of faces and monkeys and misspelled words! Freaked her out a bit I think. I had the nurse get me a cup of coffee around 8:30 am and tried to rouse myself awake. We had an appointment that day to meet with the Social Security Administrator at the Xenia office at 11:30, which Todd was adamant I keep. The appointment was made months ago and it was to sign me and the girls up to receive benefits as part of Todd's Social Security Disability.
I drove home and cleaned up and made it to the appointment on time. I got everything filed. Even though they don't want to pay Todd the maximum he is due (because someone in Columbus, OH figures these percentage out!), we are signed up and should receive our first benefit payments on April 8, 2015. That's still 2 months away! It is days like this that reminds me how stupid it is for me to look for full-time job. We still are living day-to-day without knowing what the next day, next week, or even next month holds. I was supposed to teach 3 days this week, but had to cancel those days with everything going on. I am also going to be restricted to how much money I can make and still receive Todd's social security benefits. So, this needs to be taken into consideration too.
Let me thank everyone who his still sending us anonymous gas cards and making deposits into the Todd Cade Care Fund. Our church, Hillside Chapel has also stepped up this past month and helped us with some of our expenses. God is good.
I took a nap and then went back to the hospital early in the evening. My parents brought me and the girls some food and then I went back to the hospital early in the evening. Our oldest daughter Abby had to come back into town, so she picked up Hannah and Ellie and brought them out to the hospital. After a good visit, I drove home with Hannah and Ellie and Abby headed back to UC. It was one long continuous day!
At first they put an alarm on his bed, since he was now classified as a "Fall risk." But, after some time, they turned it off. He couldn't get up to go to the bathroom, so they had to give him a urinal by his to measure to his output. It was the longest night. I tried to fall asleep in the recliner chair next to his bed. They brought me some heated towels which helped, but I don't think I slept more than an hour or so. I had to set my alarm at 6:45, 7:00, and 7:15 to call home and make sure the girls got up for school. I was so tired that I texted Hannah some kind of cryptic Emjois of faces and monkeys and misspelled words! Freaked her out a bit I think. I had the nurse get me a cup of coffee around 8:30 am and tried to rouse myself awake. We had an appointment that day to meet with the Social Security Administrator at the Xenia office at 11:30, which Todd was adamant I keep. The appointment was made months ago and it was to sign me and the girls up to receive benefits as part of Todd's Social Security Disability.
I drove home and cleaned up and made it to the appointment on time. I got everything filed. Even though they don't want to pay Todd the maximum he is due (because someone in Columbus, OH figures these percentage out!), we are signed up and should receive our first benefit payments on April 8, 2015. That's still 2 months away! It is days like this that reminds me how stupid it is for me to look for full-time job. We still are living day-to-day without knowing what the next day, next week, or even next month holds. I was supposed to teach 3 days this week, but had to cancel those days with everything going on. I am also going to be restricted to how much money I can make and still receive Todd's social security benefits. So, this needs to be taken into consideration too.
Let me thank everyone who his still sending us anonymous gas cards and making deposits into the Todd Cade Care Fund. Our church, Hillside Chapel has also stepped up this past month and helped us with some of our expenses. God is good.
I took a nap and then went back to the hospital early in the evening. My parents brought me and the girls some food and then I went back to the hospital early in the evening. Our oldest daughter Abby had to come back into town, so she picked up Hannah and Ellie and brought them out to the hospital. After a good visit, I drove home with Hannah and Ellie and Abby headed back to UC. It was one long continuous day!
Wednesday, January 21, 2015
Transfusion and 1-2 more Rounds of Vidaza ordered
Today's appointment, January 21, 2015, at the Cleveland Clinic was a long one! We had a snowy and slick drive up to begin with. Once we arrived, the routine blood work was drawn and we waited for the numbers to come back. Neither of us expected the need for a transfusion since his counts were still up on Monday and he had just had a transfusion last Thursday.
To our surprise his hemoglobin fell from over 9 to 7.9 in just three days. The type and screen took 2 hours and the first unit of blood didn't arrive until almost 2:00 pm. The rest of his counts were low: White counts at .79 or 790; ANCs at .55 which is still considered Neutropenic. His platelets were lower at 36,000 but at least no transfusion of platelets were needed. This is the first time he has had to have another transfusion within 1 week. Usually, he has been able to go about 2 weeks before needing one. The doctor was not too concerned about this. She explained that the low counts and need for transfusions can happen because the bone marrow is still sensitive to changes after a transplant.
We couldn't go upstairs for his doctor's appointment because he was getting his transfusion, so she came down to his treatment room along with our nurse coordinator.
First, we learned that she has NOT received ANY of the blood work results that has been drawn in Dayton. So, it was hard for her to evaluate how well his counts were rebounding a week or two after chemotherapy. (Ugh. Why does this surprise me!).
She could tell he has lost weight and showed some concern about his appetite as a result of feeling nauseated from the Vidaza. She recommended that he take a Zofran every morning before getting chemo.
She also prescribed Cipro (antibiotic) for him to take when he becomes neutropenic the first week after chemo.
All these preventative medications were discussed as she wants to do 1-2 more rounds of Vidaza. So he will be starting round 3 on February 9, 2015. Then, he will return to Cleveland two weeks after that for a follow up visit. If his counts are able to rebound well after 2 weeks, she will likely schedule a 4th round for March 2015. Then a bone marrow biopsy after that. She also said she might do the biopsy after the 3rd round in February just depending on his counts and his chimerism results drawn today.
Since he didn't get a breathing treatment of Pantamidine, which is an antibiotic treatment they have been using instead of Bactrum (which he has an allergy to), she has ordered a blood test to check his CD4 counts to judge how these helper white T-cells are doing. They can be suspecting to going down after chemo and they are needed to help fight off bacterial infections like pneumonia.
We didn't get home until about 9:30 pm. I'm sure I've made some errors in this blog because I'm so tired.
More to follow.
Monday, January 19, 2015
Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic
When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again. His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday. So, he needed a transfusion.
But the nurses and staff can't seem to get the ball rolling. First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn. Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port. The phlebotomists are not allowed to touch it. They can only draw from his arm. So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood. This has taken anywhere from 30 minutes to over an hour.
After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes. He was tired of waiting. So, they got the sample and told him it could take up to an hour to get the results. He was tired and so he told them just to arrange to have the transfusion done the next day. They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon.
He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems). So, he waits an hour for them to get the type and screen. Then they have to order the blood. It always takes about 1 1/2 hours per unit of blood and he always gets 2 units. So, needless to say it was a long day.
Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days. If he needs a transfusion, he can have it done there (supposedly). When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done! So, he has to wait til they call the doctor and get orders. Then, there is no nurse available to take blood from his Hickman again, so he waits. After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample. Then, they say it is going to take another hour to get the results and that is with it labeled "STAT." Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.
Hours later, they call. Instead of giving him his CBC results, they just said he whites were low at .7 and that's all. So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him. He has to leave a message for someone to call him back.
Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again! I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results. At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes. So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it. She said, "He has good veins, they can just stick him." And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck! It could cause him to bleed and bruise!" And she says, "Yes, I guess your right. I hadn't thought of that!" Ugh...
Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting. He doesn't have much energy or patience right now. Who would? No patient should have to go through this much confusion and waiting!
It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements. I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.
He finally got a call back from another nurse with the other results: His Hemoglobin is a 9.3, well above an 8; no transfusion needed. His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed. But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc. These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them. Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too.
It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so. That being said, its not good that they are this low. We all are going to have to be careful in the meantime.
I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics. We are not sure what this visit will entail except for the routine CBC and seeing the doctor. I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant. At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease. He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant.
I will post more after Wednesday. Thanks again for caring enough to read this blog and to pray for Todd.
But the nurses and staff can't seem to get the ball rolling. First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn. Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port. The phlebotomists are not allowed to touch it. They can only draw from his arm. So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood. This has taken anywhere from 30 minutes to over an hour.
After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes. He was tired of waiting. So, they got the sample and told him it could take up to an hour to get the results. He was tired and so he told them just to arrange to have the transfusion done the next day. They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon.
He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems). So, he waits an hour for them to get the type and screen. Then they have to order the blood. It always takes about 1 1/2 hours per unit of blood and he always gets 2 units. So, needless to say it was a long day.
Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days. If he needs a transfusion, he can have it done there (supposedly). When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done! So, he has to wait til they call the doctor and get orders. Then, there is no nurse available to take blood from his Hickman again, so he waits. After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample. Then, they say it is going to take another hour to get the results and that is with it labeled "STAT." Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.
Hours later, they call. Instead of giving him his CBC results, they just said he whites were low at .7 and that's all. So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him. He has to leave a message for someone to call him back.
Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again! I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results. At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes. So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it. She said, "He has good veins, they can just stick him." And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck! It could cause him to bleed and bruise!" And she says, "Yes, I guess your right. I hadn't thought of that!" Ugh...
Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting. He doesn't have much energy or patience right now. Who would? No patient should have to go through this much confusion and waiting!
It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements. I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.
He finally got a call back from another nurse with the other results: His Hemoglobin is a 9.3, well above an 8; no transfusion needed. His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed. But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc. These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them. Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too.
It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so. That being said, its not good that they are this low. We all are going to have to be careful in the meantime.
I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics. We are not sure what this visit will entail except for the routine CBC and seeing the doctor. I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant. At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease. He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant.
I will post more after Wednesday. Thanks again for caring enough to read this blog and to pray for Todd.
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