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| Todd at his mom's for Christmas 2014 |
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| Todd with his mom, Anna Durdines. |
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| Me and Todd. |
Friday, December 26, 2014
Christmas 2014 Family Photos
How to Stay Positive: What we have been reading.
Many of you have been so happy to see Todd in such good spirits. Not only is this because of his faith in God, and his belief in the healing power of prayer, but we both have been doing some reading to keep our minds from wondering off or getting negative!
So, here is a quick annotated bibliography:
1. The Bible: of course! I've been finding comfort in the Psalms. But, its all good!
2. The Power of Now by Eckhart Tolle. This book is great for teaching yourself to control your self-talk and your thoughts. There is great spiritual insight too. While he refers to God and Jesus' teachings among others, you can apply his suggestions and see how much they are in harmony with scripture.
3. The Prayer of Jabez by Bruce Wilkinson. Our church had read and studied this collectively at one point, so I decided to re-read it. It has reinvigorated me in how to pray and expect answers!
4. The Secret by Rhonda Byrne. Teaches to believe that good things will happen and to expect them. The principles here are in harmony with what scripture teaches us, "You have not, because you ask not." Having the Faith of a mustard seed, etc.
5. Miracles by C.S. Lewis. Need I say more? For those of you who didn't know, C.S. Lewis, an avid scholar, was originally an atheist (since the age of 15), but became a Christian in spite of himself-unable to fight his conclusions that there is a God. He explores the existence of miracles in this book.
So, here is a quick annotated bibliography:
1. The Bible: of course! I've been finding comfort in the Psalms. But, its all good!
2. The Power of Now by Eckhart Tolle. This book is great for teaching yourself to control your self-talk and your thoughts. There is great spiritual insight too. While he refers to God and Jesus' teachings among others, you can apply his suggestions and see how much they are in harmony with scripture.
3. The Prayer of Jabez by Bruce Wilkinson. Our church had read and studied this collectively at one point, so I decided to re-read it. It has reinvigorated me in how to pray and expect answers!
4. The Secret by Rhonda Byrne. Teaches to believe that good things will happen and to expect them. The principles here are in harmony with what scripture teaches us, "You have not, because you ask not." Having the Faith of a mustard seed, etc.
5. Miracles by C.S. Lewis. Need I say more? For those of you who didn't know, C.S. Lewis, an avid scholar, was originally an atheist (since the age of 15), but became a Christian in spite of himself-unable to fight his conclusions that there is a God. He explores the existence of miracles in this book.
6. Seeing the Joy in Affliction by Michael Shelley. This professor and Christian cam to speak to our congregation years ago. He was diagnosed with a terminal brain tumor but God had taught him so much that he wrote this book and used every opportunity to share it. I bought the book then even though I couldn't relate to it at the time; but it is a blessing to me now. 
If you have some suggestions, please feel to comment to this post! Thanks!
If you have some suggestions, please feel to comment to this post! Thanks!
Day +101: Platelet transfusion needed
Todd went into his local oncologist's office to have lab work done to check his blood counts. He went in at 11:00 a.m. but didn't get home until after 4:30 p.m.! His counts were down today: Hemoglobin was 8.9; whites 1.9 (1,900) and platelets at 9,000. These were the preliminary results and they wanted to verify them, which took a bit longer, but the count was accurate. Since his platelets were under 10,000, he needed a transfusion of platelets. Sounds straightforward...right?
Well, unfortunately, his local oncologist's office/cancer treatment center does not have a blood bank, so he was going to have to go to a local hospital to get them. Since it was the day after Christmas, the cancer center was short-handed with only one doctor and a handful of nurses available. He waited and waited for a doctor to sign an order for the transfusion and to get an appointment at a hospital that had platelets. By 1:00 p.m. he was still waiting and hadn't had anything to eat, so he finally had to leave to get something to eat and returned with no appointment or orders ready. After waiting until about 4:00 p.m., the doctor had finally signed the order, but there were no open appointments for a transfusion today, so they scheduled it for 7:00 a.m. tomorrow morning at Miami Valley Hospital.
While I expected his numbers to drop some after the Vidaza chemotherapy, I wasn't expecting so much difficulty in arranging the transfusion. So, I called his nurse coordinator, but she too was on vacation. Instead, I got to talk to another nurse who was filling in for her. I was concerned that since his next treatment appointment to draw blood work and get blood products wouldn't be until next Wednesday, December 31, 2014, (5 days) that he was going to need a transfusion before then (especially with his hemoglobin hoovering right above the threshold of 8.5, and because of the fatigue he has been experiencing the last two days). She said that she could secure us an appointment in the Taussig Cancer Center at the Cleveland Clinic on Monday, December 29, but we would have to be there at 8:15 a.m. Todd, although he was tired of the long wait today, he still wasn't ready to go back to Cleveland Monday. We would have to go up the night before or leave that morning around 4:30 a.m. to get there! It was her opinion that if he got platelets today, (well, tomorrow now) he would likely be able to wait until Wednesday, but he would very likely need transfusions then. In the worse case scenario, we would have to be prepared to take him to the emergency room if he becomes symptomatic of falling counts: such as extreme fatigue (where he really doesn't feel like getting out of bed), shortness of breath, and/or confusion. These signs would indicate a severe need for a regular blood transfusion. Of course, if he would start bleeding anywhere, he would have to go to the emergency room for a platelet transfusion.
I hate the idea of taking him to an emergency room which takes so long, and with people who can be contagious and put Todd at risk of catching something. At least at the Cancer Center at the Cleveland Clinic, everyone else there is in the same fragile situation as Todd and the patients and family members are educated about germ control and how important it is.
With the stomach/intestinal virus and the influenza circulating, we are trying to be extra careful to protect Todd from catching these. Please do not visit if you or any member of your household has been sick. We still have to be very vigilant in protecting him from catching something that may seem minor to us, but detrimental for him. Although he is excited to see a few new movies that have been released, I have talked him out of going at this busy time of the year with so many sicknesses circulating.
Todd was quick to point out that his white count had actually gone up slightly from 1.54 on Monday, December 22 to 1.9 today. This is likely from a positive response to the Vidaza chemotherapy. Usually, the counts drop and then get a bounce up for a few weeks. His ANCs (Absolute Neutrophils) of 1.4 were almost within the normal range of 1.5-7.8. I love that he is so positive and looks for things to be grateful for!
This is a good opportunity to shameless plug blood donation and platelet donation. Many may recall our experience with the platelet shortage right after his transplant. This shortage still exists. If you are healthy and able to donate, please contact your local blood donation center or the Red Cross. Your donation can save lives and bring strength and help to Todd and others like him who rely on transfusions. Please note: you CANNOT donate specifically for Todd only; this is too complicated, but it does help keep the blood products in supply.
I hoping to post some Christmas photos and a few other tidbits later this week. Thanks for your support! Please keep praying: that he would develop a mild case of Graft versus Host Disease to fight off his diseased bone marrow; that he would feel well and keep his energy level up; that the transfusion scheduled for tomorrow goes well and that he won't need to go to the emergency room for more transfusions until his next appointment; that our family would have peace and harmony; that if the timing is right, that God would open or close doors for a job opportunity for me. I have an appointment to take a skills test for one job opening in January and I've put in an application at a local university who needs a library information specialist that I'm actually qualified for. I still haven't made a decision whether to return to school or not either.
My mantra today: God can do the impossible!!!
Well, unfortunately, his local oncologist's office/cancer treatment center does not have a blood bank, so he was going to have to go to a local hospital to get them. Since it was the day after Christmas, the cancer center was short-handed with only one doctor and a handful of nurses available. He waited and waited for a doctor to sign an order for the transfusion and to get an appointment at a hospital that had platelets. By 1:00 p.m. he was still waiting and hadn't had anything to eat, so he finally had to leave to get something to eat and returned with no appointment or orders ready. After waiting until about 4:00 p.m., the doctor had finally signed the order, but there were no open appointments for a transfusion today, so they scheduled it for 7:00 a.m. tomorrow morning at Miami Valley Hospital.
While I expected his numbers to drop some after the Vidaza chemotherapy, I wasn't expecting so much difficulty in arranging the transfusion. So, I called his nurse coordinator, but she too was on vacation. Instead, I got to talk to another nurse who was filling in for her. I was concerned that since his next treatment appointment to draw blood work and get blood products wouldn't be until next Wednesday, December 31, 2014, (5 days) that he was going to need a transfusion before then (especially with his hemoglobin hoovering right above the threshold of 8.5, and because of the fatigue he has been experiencing the last two days). She said that she could secure us an appointment in the Taussig Cancer Center at the Cleveland Clinic on Monday, December 29, but we would have to be there at 8:15 a.m. Todd, although he was tired of the long wait today, he still wasn't ready to go back to Cleveland Monday. We would have to go up the night before or leave that morning around 4:30 a.m. to get there! It was her opinion that if he got platelets today, (well, tomorrow now) he would likely be able to wait until Wednesday, but he would very likely need transfusions then. In the worse case scenario, we would have to be prepared to take him to the emergency room if he becomes symptomatic of falling counts: such as extreme fatigue (where he really doesn't feel like getting out of bed), shortness of breath, and/or confusion. These signs would indicate a severe need for a regular blood transfusion. Of course, if he would start bleeding anywhere, he would have to go to the emergency room for a platelet transfusion.
I hate the idea of taking him to an emergency room which takes so long, and with people who can be contagious and put Todd at risk of catching something. At least at the Cancer Center at the Cleveland Clinic, everyone else there is in the same fragile situation as Todd and the patients and family members are educated about germ control and how important it is.
With the stomach/intestinal virus and the influenza circulating, we are trying to be extra careful to protect Todd from catching these. Please do not visit if you or any member of your household has been sick. We still have to be very vigilant in protecting him from catching something that may seem minor to us, but detrimental for him. Although he is excited to see a few new movies that have been released, I have talked him out of going at this busy time of the year with so many sicknesses circulating.
Todd was quick to point out that his white count had actually gone up slightly from 1.54 on Monday, December 22 to 1.9 today. This is likely from a positive response to the Vidaza chemotherapy. Usually, the counts drop and then get a bounce up for a few weeks. His ANCs (Absolute Neutrophils) of 1.4 were almost within the normal range of 1.5-7.8. I love that he is so positive and looks for things to be grateful for!
This is a good opportunity to shameless plug blood donation and platelet donation. Many may recall our experience with the platelet shortage right after his transplant. This shortage still exists. If you are healthy and able to donate, please contact your local blood donation center or the Red Cross. Your donation can save lives and bring strength and help to Todd and others like him who rely on transfusions. Please note: you CANNOT donate specifically for Todd only; this is too complicated, but it does help keep the blood products in supply.
I hoping to post some Christmas photos and a few other tidbits later this week. Thanks for your support! Please keep praying: that he would develop a mild case of Graft versus Host Disease to fight off his diseased bone marrow; that he would feel well and keep his energy level up; that the transfusion scheduled for tomorrow goes well and that he won't need to go to the emergency room for more transfusions until his next appointment; that our family would have peace and harmony; that if the timing is right, that God would open or close doors for a job opportunity for me. I have an appointment to take a skills test for one job opening in January and I've put in an application at a local university who needs a library information specialist that I'm actually qualified for. I still haven't made a decision whether to return to school or not either.
My mantra today: God can do the impossible!!!
Thursday, December 25, 2014
Day +100: Christmas Day!
Merry Christmas! Today is Day +100 post bone marrow transplant. With a successful transplant, the critical period would be over, the disease would be gone, and Todd's counts would be up in the normal range or very close to it. We would only be doing routine follow-up appointments. But this isn't what happened...God has another plan in store for Todd. So, our journey doesn't end here. We will continue fighting MDS longer.
We are thankful to be home with family. We had dinner with Todd's mom on Tiuesday, December 23. On Christmas Eve we went to have dinner and a gift exchange with my family. Today, we were woke up starting at 7:15 a.m. by our teenage daughters! (Some things never change!).
Tomorrow morning Todd will have his blood work drawn here in Dayton to make sure he doesn't need any transfusions. If he does, we will need to go to Miami Valley Hospital or another hospital for whatever transfusion he needs. If nothing is needed, we will return to the Cleveland Clinic on Wednesday, December 31, 2014 for treatment and an appointment with his regular BMT doctor.
May God Bless you! We hope you had a Merry Christmas!
Monday, December 22, 2014
Day +97: Cleveland Clinic Appointment Results December 22, 2014
Todd's treatment appointment started with the routine vitals and blood work. His counts were down a bit more today, but this was expected after the week of chemotherapy. His whites were at 1.54 (1,540); Hemoglobin 9.4; and Platelets down to 20,000. These counts were strong enough to alleviate the need for any transfusions.
We ran into a friend and former transplant patient and her husband in the doctor's waiting area. Today was her last appointment! Her chimerism was struggling a bit, but her counts were much higher than Todd's. Her bone marrow biopsy came back clean; no signs of disease! This was such a praise! I told her how hard to was to see other patients from the transplant floor reaching their 100 day mark and getting to end transplant follow-up treatments, when we are back to where Todd started before chemotherapy and the transplant. She empathized and told me that although it may seem that the marker to ending treatment seems to keep getting pushed backed for us, we just need to concentrate on getting to the same end result: recovery and remission. It might just take Todd longer to get there. I found such wisdom in this! We don't understand why God is taking Todd down a different path, but I'm sure he has a reason (His ways are higher than ours).
We saw a different doctor today, an associate of his regular BMT doctor, since she is on vacation. Todd's nurse coordinator also joined us to give us the latest news from his doctor. He examined Todd as usual looking for any sign of Graft versus Host Disease rash. I asked if there is still a good chance that he can get GvHD and he said absolutely yes; with the mixed chimerism, there is still a chance. This would be ideal! If Todd's body could develop a bit of Graft versus Host Disease it would help attack and kill his diseased bone marrow and give his brother's donated marrow the upper hand.
They took him off his magnesium tablets, which is normal a few weeks after stopping the Tacrolimus. The Tacrolimus causes low magnesium, therefore the added supplements. So, without taking the Tacrolimus for several weeks, he shouldn't need it anymore. He does still need to continue with the rest of his medication until further notice.
Todd's cytogenetic report was back from his bone marrow biopsy. It did show one chromosomal abnormality: a deletion in chromosome 5 [46,xy,del(5)(q13)(17), xy(3)]. He had this same deletion, along with three others earlier in the year in April and May, but they had gone away with the four rounds of Vidaza before his bone marrow transplant. So, this one deletion has come back.
I asked what the next step was going to be, and his nurse coordinator jumped in and said that his doctor would like to get a couple rounds of Vidaza in before doing the second stem cell transplant. So, we know that he will start his next round January 12, 2015. I'm not sure if there will be a third treatment in February or if they will go on to the stem cell transplant. They will be looking for a decrease in his blast counts when they do a follow-up bone marrow biopsy.
I also asked if there was a mistake in his chemotherapy, the trial medications, or the immunosuppression regimen during and after the transplant that allowed him to relapse. I explained that I had heard of other patients having their own marrow suppressed instead of the donor and that his doctor was going to do this for the next stem cell transplant, and he said that this was not standard protocol for an initial BMT. He reassured me that it is standard procedure to always suppress the donor marrow because without immunosuppression there would most definitely be severe GvHD. I also asked if having the chromosomal deletions prior to the transplant contributed to the relapse of his MDS, and he said there is no way to know the answer to that question. He explained that Todd's current doctor is trying to learn the answers to this question with her clinical trial. In his opinion, nothing done during the first transplant contributed to the relapse.
We don't need to go back to Cleveland for treatment on Friday, December 26, as long as we arrange to have his CBC blood work drawn here in Dayton, and follow-up with any needed transfusions at a local hospital. Our next Clinic appointments will be for treatment and seeing his regular physician on Wednesday, December 31, 2014, where we will discuss his latest chimerism results, the plans for future treatment, and to schedule additional appointments.
His 100th day is Christmas Day. Although we won't be celebrating a cure or remission, we will be celebrating life!
We ran into a friend and former transplant patient and her husband in the doctor's waiting area. Today was her last appointment! Her chimerism was struggling a bit, but her counts were much higher than Todd's. Her bone marrow biopsy came back clean; no signs of disease! This was such a praise! I told her how hard to was to see other patients from the transplant floor reaching their 100 day mark and getting to end transplant follow-up treatments, when we are back to where Todd started before chemotherapy and the transplant. She empathized and told me that although it may seem that the marker to ending treatment seems to keep getting pushed backed for us, we just need to concentrate on getting to the same end result: recovery and remission. It might just take Todd longer to get there. I found such wisdom in this! We don't understand why God is taking Todd down a different path, but I'm sure he has a reason (His ways are higher than ours).
We saw a different doctor today, an associate of his regular BMT doctor, since she is on vacation. Todd's nurse coordinator also joined us to give us the latest news from his doctor. He examined Todd as usual looking for any sign of Graft versus Host Disease rash. I asked if there is still a good chance that he can get GvHD and he said absolutely yes; with the mixed chimerism, there is still a chance. This would be ideal! If Todd's body could develop a bit of Graft versus Host Disease it would help attack and kill his diseased bone marrow and give his brother's donated marrow the upper hand.
They took him off his magnesium tablets, which is normal a few weeks after stopping the Tacrolimus. The Tacrolimus causes low magnesium, therefore the added supplements. So, without taking the Tacrolimus for several weeks, he shouldn't need it anymore. He does still need to continue with the rest of his medication until further notice.
Todd's cytogenetic report was back from his bone marrow biopsy. It did show one chromosomal abnormality: a deletion in chromosome 5 [46,xy,del(5)(q13)(17), xy(3)]. He had this same deletion, along with three others earlier in the year in April and May, but they had gone away with the four rounds of Vidaza before his bone marrow transplant. So, this one deletion has come back.
I asked what the next step was going to be, and his nurse coordinator jumped in and said that his doctor would like to get a couple rounds of Vidaza in before doing the second stem cell transplant. So, we know that he will start his next round January 12, 2015. I'm not sure if there will be a third treatment in February or if they will go on to the stem cell transplant. They will be looking for a decrease in his blast counts when they do a follow-up bone marrow biopsy.
I also asked if there was a mistake in his chemotherapy, the trial medications, or the immunosuppression regimen during and after the transplant that allowed him to relapse. I explained that I had heard of other patients having their own marrow suppressed instead of the donor and that his doctor was going to do this for the next stem cell transplant, and he said that this was not standard protocol for an initial BMT. He reassured me that it is standard procedure to always suppress the donor marrow because without immunosuppression there would most definitely be severe GvHD. I also asked if having the chromosomal deletions prior to the transplant contributed to the relapse of his MDS, and he said there is no way to know the answer to that question. He explained that Todd's current doctor is trying to learn the answers to this question with her clinical trial. In his opinion, nothing done during the first transplant contributed to the relapse.
We don't need to go back to Cleveland for treatment on Friday, December 26, as long as we arrange to have his CBC blood work drawn here in Dayton, and follow-up with any needed transfusions at a local hospital. Our next Clinic appointments will be for treatment and seeing his regular physician on Wednesday, December 31, 2014, where we will discuss his latest chimerism results, the plans for future treatment, and to schedule additional appointments.
His 100th day is Christmas Day. Although we won't be celebrating a cure or remission, we will be celebrating life!
The "Todd Cade Care Fund" and the "Praying for Todd Cade" Facebook Page
Last week (Dec. 15-19, 2014), Todd finished up his first weekly treatment of the chemotherapy Vidaza in Dayton since the relapse of his MDS post-bone marrow transplant. He did well, experiencing minor side effects of nausea and fatigue. He had held most of the blood cells from his blood transfusion on Friday, December 12, 2014.
We have received numerous checks, cash, and gift cards from friends and family the past two weeks which has been HUGE blessing to us! However, others have asked how they can help from a distance or anonymously, so on Friday, December 19, I went to PNC Bank with my parents to help set-up a bank account for people who wish to make donations to help us with our finances during this medical crisis.
Right now, anyone can make a donation in person at any PNC Bank Location or mail in their donation to the account:
TODD CADE CARE FUND.
Please be assured that we will be good stewards of any gifts received. Please know that these funds will not only be used for medical expenses, but also for living expenses such as mortgage payments, utilities, groceries, and the like. Since Todd and I have both been unable to work, we have been limited to the modest monthly payment from Todd's private disability policy.
Be assured too that we are doing everything possible to reduce our expenses. Just this week, we sold one of our vehicles to provide funds and to decrease our insurance bill. God be praised!
We have been approached by some of Todd's former classmates about holding a local fundraiser for him in February, 2015, but we are waiting for a date confirmation. Details will follow. A few others have also volunteered to set-up an online donation account such as "Fund My..." or a Paypal account, but this is still in the works and may not be up and running until after the holidays.
We are humbled by your kindness and generosity. It has been harder to be the "receivers" of such blessings than the givers.
To extend the number of people we can reach with Todd's updates and news, our daughter Abby has created a Community FaceBook Page called:
PRAYING FOR TODD CADE
If you are on Facebook, please go to this page and "Like" it if you want to receive regular updates or quick posts via your news feed. So far, he has 177 Likes! Thanks for your interest and support.
For those of you NOT on Facebook, don't despair. I have every intention of maintaining this blog! I'm so happy to hear people tell Todd or I that they follow the blog and are grateful for it. Sometimes, I think it helps me more than just providing information to you, but I'm glad people follow it. This past week, I have learned from many of those who have shared their experiences with battling cancer and this has been so encouraging! Thank you for taking this journey with us.
We have received numerous checks, cash, and gift cards from friends and family the past two weeks which has been HUGE blessing to us! However, others have asked how they can help from a distance or anonymously, so on Friday, December 19, I went to PNC Bank with my parents to help set-up a bank account for people who wish to make donations to help us with our finances during this medical crisis.
Right now, anyone can make a donation in person at any PNC Bank Location or mail in their donation to the account:
TODD CADE CARE FUND.
Please be assured that we will be good stewards of any gifts received. Please know that these funds will not only be used for medical expenses, but also for living expenses such as mortgage payments, utilities, groceries, and the like. Since Todd and I have both been unable to work, we have been limited to the modest monthly payment from Todd's private disability policy.
Be assured too that we are doing everything possible to reduce our expenses. Just this week, we sold one of our vehicles to provide funds and to decrease our insurance bill. God be praised!
We have been approached by some of Todd's former classmates about holding a local fundraiser for him in February, 2015, but we are waiting for a date confirmation. Details will follow. A few others have also volunteered to set-up an online donation account such as "Fund My..." or a Paypal account, but this is still in the works and may not be up and running until after the holidays.
We are humbled by your kindness and generosity. It has been harder to be the "receivers" of such blessings than the givers.
To extend the number of people we can reach with Todd's updates and news, our daughter Abby has created a Community FaceBook Page called:
PRAYING FOR TODD CADE
If you are on Facebook, please go to this page and "Like" it if you want to receive regular updates or quick posts via your news feed. So far, he has 177 Likes! Thanks for your interest and support.
For those of you NOT on Facebook, don't despair. I have every intention of maintaining this blog! I'm so happy to hear people tell Todd or I that they follow the blog and are grateful for it. Sometimes, I think it helps me more than just providing information to you, but I'm glad people follow it. This past week, I have learned from many of those who have shared their experiences with battling cancer and this has been so encouraging! Thank you for taking this journey with us.
Thursday, December 18, 2014
Day +91: Update from the Doctor.
Todd sent a message to his doctor about his appointment for next week and asked what about the plan after She is going to be out on vacation next week, so his appointment is with another transplant doctor on staff at the Cleveland Clinic. She wants him to come in for treatment and to see this doctor even though she won't be there.
She wants to run tests to see if he needs any transfusions, check his chimerism again, and check for any Graft versus Host Disease or Leukemia Effect. So this tells me that there may still be hope that Todd can see a reverse in his chimerism and/or that he can still develop some Graft versus Host to help battle his original bone marrow.
She also needs these test results to help her determine the next step in treatment. She is still leaning towards doing a second bone marrow transplant using Todd's brother"s stem cells or just his T- cells.
Overall, Todd has been feeling pretty well. He has been tired, resuming naps and has suffering some nausea even with the Aloxi they gave him the first day before chemo. He remains in good spirits despite the relapse, additional treatments, and our dwindling finances. We continue to trust God to supply all of our needs and he has been blessing us through friends and family and other charitable programs.
We recently received an anonymous Christmas card with a $100 gas card and a $100 Meijer gift card from a good friend which will go towards groceries. My parents came over and made us dinner. They have been offering to help us in any way possible on a daily basis. Todd's mom also had our family over for dinner too! Todd's brother and his wife sent us restaurant gift cards which makes it nice to go out to eat! We were also treated to lunch and good company by long-time friends who were happy to pay for lunch, recalling the time we had treated them to dinner after he had just lost his job! We had forgotten all about it!
The Cleveland Clinic has been good to us helping with COBRA premiums and providing us with a resourceful social worker. We learned that we are eligible for parking assistance with outpatient care. We are expecting assistance from the Leukemia & Lymphoma Society with medication co-pay reimbursements. Our social worker has also suggested a few other programs we may be eligible for since Todd is disabled.
Please continue to pray for us. First that Todd will be healed. Pray for the doctors as they make critical decisions in how to continue treating Todd. Please pray that I can eventually go back to work or find a job when Todd's condition has stabilized. We are trying to sell what we can and cutting monthly expenses where possible. I'm also trying to decide whether to continue graduate school, which would help me get a better paying job, but at a great cost. I only qualify for an unsubsidized loan at this point. I only have five classes left, with one being a practicum.
We are taking life one day at a time. It's really hard to plan much further than a week in advance. But God is with us and we are still positive expecting the best!
Tuesday, December 16, 2014
Days +90: Chemo going well
The first day, December 15, 2013,of chemotherapy (Vidaza) went off uneventful. Todd received treatment at our local cancer center in The Dayton area. Todd was even assigned his former nurse Dinah to resume his treatments. To show you how Todd has retained his sense of humor, he couldn't wait to tell Dinah that he has a Hickman catheter, because she often struggled to get the needle through his "thick skin."
They ran a CBC before starting treatment and the results were encouraging. The showed a good bounce from the transfusion he received last Friday. We were glad to see he was able to hold the good stuff from the transfusion. His whites went from 1.28 to 2.0; hemoglobin from 8.1 to 10.5; and platelets from 22,000 to 27,000. Sometimes patients receive transfusion, but have a hard time keeping the cells from them for various reasons. Todd had this problem in the hospital with his platelets. So, this is good news.
I think the local oncologist draws a CBC every 3 or 5 days. It is common for counts to drop the first few days of chemo, but as the treatment begins to work, suppressing the growth of blast cells, counts go up.
Friday, December 12, 2014
Day +87: Chemo scheduled in Dayton
We learned today that Todd will be able to do his outpatient chemotherapy with the local oncologist in Dayton starting Monday, December 15, 2014 for five days. This is great news. The only downside is that if his blood counts are low, he will have to go to a local hospital for transfusions. But, this is still better than spending the whole week in Cleveland.
At today's treatment, Todd ended up needing a blood transfusion as his hemoglobin had dropped to 8.1. He has been very tired, so I hope this will help with his energy level.
The other counts were down also. Whites were at 1.28 or 1,280. Low white counts can make him more Susceptible to infections. His platelets were high enough not need a transfusion, but they too continue to drop: 22,000.
We are so grateful that we can be home next week. Driving up and back to Cleveland two times per week is getting tiresome. We have to get up at 5:00 am to get to his appointment on time. But still, this is better than staying in Cleveland all week.
We have thought about what went wrong with the transplant: Why it didn't wor.k. Todd thinks they didn't give him enough chemotherapy to wipe out his bone marrow, but I think the problem lies in the use and application of the immunosuppressants. They chose to suppress his brother's donor marrow so he wouldn't get a bad case of Graft versus Host Disease, but I wonder why they didn't suppress Todd's bone marrow and let his donor marrow grow and engraft unsuppressed. I guess this was the professional decision of the doctor who is the specialist in this area.
Whatever contributed to the failure of the transplant (we may never know), our eldest daughter in her wisdom told us: Don't regret the decision to do the transplant. It was the only curative treatment and we had to try it. The odds were in our favor. I have taken comfort in this truth. We can't change the past or second guess the decision to transplant. We can only move forward taking life day by day and make the best decisions based on where we are that day.
Thanks for your support and prayers. We still believe God can perform a miracle in Todd.
Thursday, December 11, 2014
Day + 86: MDS is back after Transplant
We received the sad news today from Todd's doctor that the preliminary bone marrow biopsy showed that Todd's MDS has relapsed, finding 6% blast cells. The doctor has recommended that he start Chemotherapy on Monday, December 15. 2014.
They will be giving him Vidaza, the same chemotherapy he had before going into the hospital for the transplant. He had good results with it then. Those four rounds were able to get him into remission before the transplant. So this is encouraging.
It is easy to be frustrated when his condition is right back where it was in March 2014, except at that time he had about 8% blast counts. It's disappointing to go through the entire transplant process, only to relapse before the crucial 100 days post-transplant period.
We are trying to arrange to have the chemotherapy administered locally like before, but if they can't get him on the schedule on such short notice, we will have to do it at the Cleveland Clinic all of next week.
What happens beyond this first round of chemotherapy is not known. The doctor is still planning a strategy. It is likely that he may still need a second transplant from his brother's stem cells if all goes well.
Meanwhile, we are back at the Cleveland Clinic tomorrow for blood work and possible treatment. His blood counts dropped this past week close to the threshold of requiring transfusions. His white count went as low as 1.45 or 1,450. His hemoglobin was as low as 8.7 and his platelets dropped to 23,000. Transfusion thresholds: Blood is given at <8 Hemoglobin and platelets given at < 10,000.
The last few days he has felt achy and nauseated. This could be because of his low blood counts and being off the immunosuppressants. His hip seems to be more sore and achy than any of the past twelve times he has had them done.
We are trying to stay positive in light of this unfavorable news. Please continue to pray for healing and guidance for us and the doctor. While we still have confidence in her and the transplant team, we are not ruling out a second opinion. There are several treatment options that the doctor can recommend, so we pray that God will guide her choices.
Tuesday, December 9, 2014
Day +84: Biopsy scheduled Today Dec. 9, 2014
On Sunday afternoon, December 7, 2014 Todd received a message from his online "My Chart" that the BMT Team finally scheduled his bone marrow biopsy for Tuesday, December 9. That meant we were going to have to be at the Cleveland four days this week! This was too much since we have been trying to drive home in between appointments on Mondays and Fridays. This week, however they had scheduled his doctor's appointment on a Wednesday instead of a Monday with 3 treatment appointments Monday, Wednesday, and Friday. I think the schedule was changed due to his doctor's schedule. He hasn't needed a Wednesday appointment since the first week he was out of the hospital.
Todd decided he wasn't going to go up for his Monday treatment appointment, so I called the doctor's office to rearrange this week's schedule. We decided to drive up on Tuesday for the biopsy and spend the night so we could be there early for his Wednesday treatment and doctor's appointment.
We won't get the results of the bone marrow biopsy for about 4-7 days and then the cytogenetics will take a few more days longer. They are looking for a few specific things.
First, that there is bone marrow from the engraftment. If there is no significant amount of engrafted marrow this would likely indicate a failure in the BMT.
Second, they will look at the chimerism of the cells present: how many are from his own original bone marrow and how many are from his brother's donated marrow that has engrafted.
Third, they will look to see if there is any disease present (MDS). They can determine this by looking for blast cells and/or the type of blast cells, and how many there are.
It looks like they are going to do a CBC today and/or tomorrow to check his counts.
We are expecting good news. We have been praying that God would bless us, and Todd's body specifically. We are praising God in advance for his wondrous mercy. Please continue to pray on his behalf.
Friday, December 5, 2014
Day +80 Good end of a discouraging week
Monday's doctor appointment (December 1, 2014) and blood work left me discouraged. His white counts dropped to 2,440; hemoglobin dropped to 9.9; and platelets to 32,000. This news combined with last weeks' chimerism results left the doctor concerned too. She said they were going to schedule a bone biopsy, but as of this posting we have not heard from the scheduler. The doctor also discussed using a dose of steroids if his chimerism continues to show increased cells from the original bone marrow and dropping counts. She said this treatment is "somewhat controversial" but didn't say why.
While the latest chimerism results were not back that day, Todd received a call on Tuesday from his nurse coordinator that his cells from his original bone marrow had increased to 60% which means his brother's donated cells were only at 40%. On Monday, the doctor told Todd to cut back on his Tacrolimus/immunosuppressant to every other day starting Wednesday. However, after the chimerism results were back the nurse instructed him to terminate the medication starting that day. It is the doctor's hope that removing the immunosuppressant will stop suppressing Todd's new bone marrow and allow it to take over and increase.
Tuesday night I had hit an all time low. I was so concerned that these results were indicating a bone marrow transplant failure or a relapse in his disease within the 100 day critical period. But after pleading with God to turn things around I began to believe it would happen. By morning, Todd and I were both on the same page. We were going to expect the best to happen!! We decided to ASK God for healing and a change in his numbers, we agreed to BELIEVE it, even visualizing Tom's donated marrow engrafting in Todd and seeing it make healthy cells. Then we both decided to have FAITH that Todd was going to be healthy again; that God was going to answer our prayers.
Every day since I have been enjoying living life with Todd to the fullest. I decided that I would do whatever it takes to get Todd the best care and treatment even if it meant going to another Hospital for a second opinion (if it comes to that).
We drove up to the Cleveland Clinic for treatment on Friday (December 5) praying for good news with his blood work. We were not disappointed! Not only were his blood counts stable but we saw a slight increase in all three cells. White counts were 2,700. Hemoglobin at 10.0 and platelets at 33,000. No transfusions were needed.
We are going to stay positive and expect the best! We continue to pray.
This week the same word keeps coming up from the scripture:
Be of good courage. And he shall strengthen your heart, All you who hope in the Lord. Psalm 31:24
Friday, November 28, 2014
Day +73: Mixed Chimerism Still an Issue
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| Todd with his Great Nephew Jeffrey at Thanksgiving, November 27, 2014 |
It was difficult for her to hide her concern. She recommended that Todd drop down another Tacrolimus pill, from 3 per day to 2 per day immediately. I asked her to give us some indication of her level of confidence that reducing the immunosuppressant would be effective. She really hated to put a number on it, but I got her to say about 50%. She tried to encourage us that she was really stepping up the process of removing the immunosuppressant (starting Day+62), because normally, they don't start tapering patients off this drug until they have reached Day +100 and even then they taper it slowly for months.
I confirmed that Todd did have a full intensity, myeloblative allogeneic bone marrow transplant and not Reduced intensity chemotherapy (RIC) which is more common with bone marrow transplant failures. Additionally, she confirmed that even the timing and the type of medications used in the trial regime wouldn't have necessarily had anything to do with the mixed chimerism that Todd is experiencing.
She also reiterated that she wants to move the date for a bone marrow biopsy. Normally, this is done around Day +100, but she wants to do it around Day + 80, which would be around December 5. She said then they could look to see how many cells are actually in the bone marrow, what their chimerism would be, if there was any presence of the disease (meaning his MDS or blast cells), and if so, at what percentage.
I also implored her to talk about what would happen if removing the immunosuppressant didn't work, and she did somewhat reluctantly. The most likely scenario would be to harvest stem cells from Todd's brother again, but this time it would be done peripherally,which means they would remove the stem cells from his brother's blood instead of from actual marrow in the hip. This process would require Todd's brother to receive medication injections prior to the harvest to boost the number of stem cells they could obtain. However, the process would be much easier on his brother Tom than before. This 45 second video shows the process: https://www.youtube.com/watch?v=2bTCSslVmKs or this 4 minute video: https://www.youtube.com/watch?v=pZgee5RWccs. She did not say whether or not he would need additional chemotherapy prior to this transplant, but that they would use a different kind of immunosuppression therapy that would work to suppress Todd's bone marrow right away and not the donor's stem cells like normal.
I asked if Todd would be required to be admitted and stay again under close monitoring at the hospital for 30 or more days like before, but she just stated that the process wouldn't be quite as "strict." She then responded that I didn't need to worry about it; that it was her job to worry about it. I agreed that it was out of my hands and that she was the professional, but that I would like to have an idea of what might in store just in case, especially since I was planning on going back to work, or finding a job. If all of this happens, I may not be able to work at all for some time.
After his appointment, we headed home to spend an entire week there! We were allowed to cancel his Friday appointment (since it would be the day after Thanksgiving) and return on Monday. Todd did receive a call from the doctor though late Wednesday night, November 26, 2014, asking him to take away another immunosuppressant/Tacrolimus pill starting that day (cutting them down to 1 tablet/day). She was able to review the levels found in his blood from Monday's results and described the amount found in his system, as "therapeutic" and that this was still too high for him. I imagine she will likely take the last pill away sometime next week.
Todd's chimerism results showed up on his MYCHART app today: 57% of the cells being from Todd's original bone marrow and only 43% of his brother's donated cells. This was likely what she saw when she called on Wednesday. Chimerism results from this week may not be in until Saturday or Monday since much of the staff was off for the Thanksgiving Holiday on Thursday.
Despite this discouraging news, we were so Thankful for Life, Love, Friends, and Family this Thanksgiving Holiday. We spent Tuesday afternoon with our dear friends Chris and Lynda, with my family on Thursday, and we are planning a dinner tomorrow with Todd's mother.
We are still praying that the removal of the immunosuppressant will be effective. We go back on Monday, December 3, 2014 for: blood work, an appointment with the bone marrow transplant doctor, and a physical therapy appointment for his frozen shoulder late in the afternoon.
Friday, November 21, 2014
Day +66: New Bone Marrow Not Engrafting; risk of Transplant failure
Todd's treatment appointment today, Friday, November 21, 2014 started out a bit disappointing. His blood counts have not been going up like they should. As a matter of fact, they have dropped. His whites went down to 3,080; his hemoglobin to 10.6, and platelets down to 37,000 (a few weeks ago they were up to 58,000).
Then the doctor called us about 5:00 p.m., while we were driving home from Cleveland with the results of Todd's latest chimerism numbers from the blood tests they drew on Monday. More bad news. Instead of his original bone marrow going down to the 0-5% they need to be, they went up! To refresh every one's memory: The day he left the hospital (October 8) his original bone marrow was at 49% and his newly donated bone marrow was at 51%. The next set of results at Day+49: Todd's original marrow had dropped to 28% and his new marrow increased to 72%. These results were slow, but good. At least they were headed in the right direction. This week's results: Todd's original marrow went up to 50% and his new marrow decreased to 50%. This is not what the doctor had expected. This is a serious indicator that his newly donated bone marrow is not engrafting. Instead, his original marrow is growing back and taking over. This may lead to a bone marrow transplant failure. In this words of his doctor, this is not a rare occurrence, but it is not the common result, which should be full engraftment (New marrow at 95-100%).
So, what does this mean? That's what we are unsure of. Unless they can get his original bone marrow to go back down and his newly donated marrow from his brother to engraft, Todd will likely relapse and have to have further treatment.
While this development can be fatal if it happens earlier after transplant, this isn't the case at this point. In that situation the body thinks the new marrow is a foreign invader and tries to kill it not knowing that the chemotherapy would have likely wiped-out all the original marrow, leaving the patient with no marrow and therefore no way to make blood cells.
What's likely happening now in Todd's case is that for some reason Todd's body may have developed some kind of anti-bodies or resistance against the new marrow and is attacking it and taking over (or many other possible reasons that are too technical to understand and explain here). At least Todd's original marrow is producing some blood cells and the new marrow is producing the other half the blood cells. The whole purpose of the intensive chemotherapy was to kill Todd's marrow which is not healthy, cancerous, and can't produce enough mature healthy cells. The purpose of the transplant was to replace the bone marrow that would produce new healthy blood cells with normal blood counts. If this doesn't occur it is considered a Bone Marrow Transplant failure and can result in a relapse of his disease: MDS.
There are several things that can be done for Todd, but at this juncture, the doctor is opting for the simplest solution: to ween him off the rest of his immunosuppressant medication (Tacrolimus). Last week his doctor changed his medication from 4 capsules per day to 3, because his numbers had dipped some. Tonight, she told him to cut it down from 3 capsules per day to just 2 per day. She will likely drop them down again next week when we go back. She said there is still hope that this will allow Todd's body to develop some Graft versus Host Disease to suppress the existing original bone marrow and allow the new to engraft. (See posts on Graft versus Cancer/Leukemia Effect). So far, Todd has been doing great, maybe too great. He has had little side effects, little to no symptoms of Graft versus Host Disease, no rashes, no digestion issues, no severe eye dryness, no infections, etc. He needs some for the Graft versus Cancer Leukemia Effect to work.
This is where God comes in and how you can help! We desperately need your prayers, that this simple reduction in medication will be the answer to this problem. This is a critical time. This needs to work in the next few weeks or it may be back to the drawing board for other, more difficult solutions.
To gauge how the re-development of the former marrow is effecting his counts, his doctor has also suggested moving up the post-transplant bone marrow biopsy from the +100 check-up point to about Day +80. She wants to see if the re-growth of his original bone marrow has developed any cancerous blast cells.
To think about the possibility of further re-treatments after everything he has been through is just too much for us to wrap our heads around. The possibilities could include: another transplant of his brother's stem cells with another new 100 day period of watching and treatments; a new round of different chemotherapy and another transplant from his brother's cells; or another round of chemo and/or transplant with an unrelated donor's cells with the same 100 day follow-up. I'm trying not to worry about these possibilities and neither is his doctor.
While it has only been +66 days since the initial transplant, we were in Cleveland for 8 days before that. Todd spent 31 days in the hospital, endured intense chemotherapy, isolation, nausea, diarrhea, fatigue, lack of appetite, and lack of friends of family. I have spent around 68 days living in an hotel room/suite, driving to the hospital for 12-14 hour visits or some days overnight visits, away from our home, our three daughters, friends, family, and yes my dog! Our children have had to be away from their parents and worry about their dad, my poor mother had to be away from her home and my dad while trying to fill my shoes all that time (a job well done, but not for the faint of heart). Todd and I have had no ability to work or earn an income but instead have had multiple households and expenses to pay for. The thought of doing this again would be too difficult to put into words here.
I guess we will learn more on Monday when we go back to see the doctor. They will draw blood for another chimerism study in addition to checking his regular CBC counts. We are blessed that the dropping counts have not yet resulted in the need for any transfusions.
In the meantime, will you pray? This journey has been full of ups and downs and twists and turns. I feel like God is asking us to let go of everything else and trust him completely. I have been applying for jobs, with no response. The one job interview I had scheduled (for seasonal work) was canceled tonight because they had just finished filling all their openings. I want to cry out to God: "Why we can't we catch a break! Why are you allowing things to go wrong? Why are we suffering such financial losses and the loss of things that make us feel secure?" I want to tell God that "No, I really can't handle anything else!" But, I know he is trying to teach us through these trials to solely rely on him.
Next week is Thanksgiving. I want to give Thanks for the lives of those I love and the good health that he has blessed us with. I understand that every good gift surely does come from above. Thank you Lord.
So, what does this mean? That's what we are unsure of. Unless they can get his original bone marrow to go back down and his newly donated marrow from his brother to engraft, Todd will likely relapse and have to have further treatment.
While this development can be fatal if it happens earlier after transplant, this isn't the case at this point. In that situation the body thinks the new marrow is a foreign invader and tries to kill it not knowing that the chemotherapy would have likely wiped-out all the original marrow, leaving the patient with no marrow and therefore no way to make blood cells.
What's likely happening now in Todd's case is that for some reason Todd's body may have developed some kind of anti-bodies or resistance against the new marrow and is attacking it and taking over (or many other possible reasons that are too technical to understand and explain here). At least Todd's original marrow is producing some blood cells and the new marrow is producing the other half the blood cells. The whole purpose of the intensive chemotherapy was to kill Todd's marrow which is not healthy, cancerous, and can't produce enough mature healthy cells. The purpose of the transplant was to replace the bone marrow that would produce new healthy blood cells with normal blood counts. If this doesn't occur it is considered a Bone Marrow Transplant failure and can result in a relapse of his disease: MDS.
There are several things that can be done for Todd, but at this juncture, the doctor is opting for the simplest solution: to ween him off the rest of his immunosuppressant medication (Tacrolimus). Last week his doctor changed his medication from 4 capsules per day to 3, because his numbers had dipped some. Tonight, she told him to cut it down from 3 capsules per day to just 2 per day. She will likely drop them down again next week when we go back. She said there is still hope that this will allow Todd's body to develop some Graft versus Host Disease to suppress the existing original bone marrow and allow the new to engraft. (See posts on Graft versus Cancer/Leukemia Effect). So far, Todd has been doing great, maybe too great. He has had little side effects, little to no symptoms of Graft versus Host Disease, no rashes, no digestion issues, no severe eye dryness, no infections, etc. He needs some for the Graft versus Cancer Leukemia Effect to work.
This is where God comes in and how you can help! We desperately need your prayers, that this simple reduction in medication will be the answer to this problem. This is a critical time. This needs to work in the next few weeks or it may be back to the drawing board for other, more difficult solutions.
To gauge how the re-development of the former marrow is effecting his counts, his doctor has also suggested moving up the post-transplant bone marrow biopsy from the +100 check-up point to about Day +80. She wants to see if the re-growth of his original bone marrow has developed any cancerous blast cells.
To think about the possibility of further re-treatments after everything he has been through is just too much for us to wrap our heads around. The possibilities could include: another transplant of his brother's stem cells with another new 100 day period of watching and treatments; a new round of different chemotherapy and another transplant from his brother's cells; or another round of chemo and/or transplant with an unrelated donor's cells with the same 100 day follow-up. I'm trying not to worry about these possibilities and neither is his doctor.
While it has only been +66 days since the initial transplant, we were in Cleveland for 8 days before that. Todd spent 31 days in the hospital, endured intense chemotherapy, isolation, nausea, diarrhea, fatigue, lack of appetite, and lack of friends of family. I have spent around 68 days living in an hotel room/suite, driving to the hospital for 12-14 hour visits or some days overnight visits, away from our home, our three daughters, friends, family, and yes my dog! Our children have had to be away from their parents and worry about their dad, my poor mother had to be away from her home and my dad while trying to fill my shoes all that time (a job well done, but not for the faint of heart). Todd and I have had no ability to work or earn an income but instead have had multiple households and expenses to pay for. The thought of doing this again would be too difficult to put into words here.
I guess we will learn more on Monday when we go back to see the doctor. They will draw blood for another chimerism study in addition to checking his regular CBC counts. We are blessed that the dropping counts have not yet resulted in the need for any transfusions.
In the meantime, will you pray? This journey has been full of ups and downs and twists and turns. I feel like God is asking us to let go of everything else and trust him completely. I have been applying for jobs, with no response. The one job interview I had scheduled (for seasonal work) was canceled tonight because they had just finished filling all their openings. I want to cry out to God: "Why we can't we catch a break! Why are you allowing things to go wrong? Why are we suffering such financial losses and the loss of things that make us feel secure?" I want to tell God that "No, I really can't handle anything else!" But, I know he is trying to teach us through these trials to solely rely on him.
Next week is Thanksgiving. I want to give Thanks for the lives of those I love and the good health that he has blessed us with. I understand that every good gift surely does come from above. Thank you Lord.
Tuesday, November 18, 2014
Change of Mailing Address:
Now that we've been coming home on the weekends, it would be easier from now on to receive all cards and mail at our home address. Even though Todd will continue to have two appointments per week at The Cleveland Clinic we are anticipating coming home through some weekdays and/or holidays as we enter the final stretch.
Thanks for your support!
Todd Cade
2984 Kings Gate Blvd
Beavercreek OH. 45431
Thursday, November 13, 2014
Financial downturn: Major side effect of Cancer
One in five American adults will struggle to pay medical bills this year. A sudden accident or frightening diagnosis can touch virtually anyone, unleashing mountains of bills even on the insured. In fact, medical bills are the leading cause of personal bankruptcy, a last resort after millions of families have drained their savings, maxed their credit cards and even refinanced their homes. - Christina LaMontagne. 2014Someone recently told me that "Cancer can financially suck the life out of you." I never thought that would be us, but I'm finding it to be true. If you are like us, we are not used to being on the asking or the receiving end of the situation. Seeking assistance can have an unfortunate stigma attached to it, but that is why there are programs, organizations, and people who are able to help in a time of crisis.
Loss of Income
First, you have to deal with lack of income. When Todd began out-patient chemotherapy every 21 days back in April 23, 2014, he left work and went on disability. This disability was a private insurance policy that he had paid for years while employed. At first his private disability insurer deemed this as temporary, short-term disability, with a monthly payment at a minimal rate. During this time, we had the assurances from his employer that we could maintain our family health insurance policy at his normal employee rate. After 12 weeks, Todd's private insurance policy moved him to a long-term disability status, which meant his disability payment went up by about $500 per month. I worked as a substitute teacher until almost the end of the school year, the third week of May, 2014. Of course, there was no work for me during the summer since school was out. I haven't been able to work during this school year yet because I left to go to Cleveland with Todd on September 7 and I'll be here through the 100+ days his transplant requires. We have had to rely on the private disability payments and savings to get us through.
Social Security Disability
I have to admit, I was pretty ignorant about applying for social security disability. Todd paid the maximum amount into Social Security for years while he worked, but the first time he applied for benefits, he was denied. We appealed the decision and the request was finally approved, but not retroactive to the original filing date (April 2014), but as of the date he entered the hospital for the transplant (September 2014). The private disability insurance company was insistent that if the Social Security Disability was approved retroactively, we would have to pay back every penny of benefits he received from them, because there is a rule about not receiving both at the same time. (We didn't have to do this after all since Social Security did not make it retroactive). Regardless of when you get approved, you have to wait a mandatory five months before you can get your first monthly payment. So, that means we will have to wait until March 2015 before we can receive any help. As frustrating and embarrassing as this may seem, if you have paid into the system and are qualified for benefits, it is a benefit you cannot do without. Just be prepared for the five month waiting period with no payments!
Medical Expenses and Insurance Premiums
Second, you have to cope with increased medical expenses. Although we had the assurance of his employer that our health insurance premium would stay the same, things changed unknowingly. Without any notice, we were "accidentally" cancelled from all of our health insurance on July 31, 2014, unbeknownst to us. Todd went in for a daily chemotherapy treatment and was turned away because of no insurance. (See blog post http://toddsmds.blogspot.com/2014/08/treatment-halted-due-to-insurance.html) He did not get to finish that 7-day round of chemotherapy at all.
After sorting it out with his employer, we had to sign a Right to Elect COBRA Continuation Coverage Form asking us to say that Todd had voluntarily terminated his employment and that he now had to go on a COBRA policy (Note: He did sign it, but he wrote that he left due to going onto disability). Apparently, his employer justified this action saying that Todd was taking leave under the The Family Medical Care Act and not because he was disabled, which doesn't make any sense because No Family Medical Leave was requested by Todd, nor did any of the appropriate paperwork get filed). See: https://www.tasconline.com/biz-resource-center/plans/family-medical-leave-act/
We signed and agreed that our insurance premium would only go up from $585.86 to $597.82 which equates his normal employee rate plus a 2% processing fee. We were surprised by this amount, and asked his employer to verify this, because we were under the impression that COBRA payments should be higher. But they confirmed it.
After making two months of payments at this rate, we noticed that our third monthly payment did not cover the new balance of $1,195.64 per month Once again, we were not told or notified by his employer that our rate had doubled because we were supposed to pay both the employee premium and the employer's share. When making inquiries, we learned that his employer had a made a mistake and didn't charge us enough those two months. Instead, they had to "eat" those two months of their half, because they incorrectly charged us. By law, apparently, they are not allowed to over-bill us to recoup their payments. At this point, we had no choice to continue our health insurance policy. Todd was post-transplant and still needed to be in the hospital for several more weeks needing the post-care treatment. Our children still needed coverage back at home.
After discussing financial issues with other transplant patients in the hospital, we learned of some grants and programs that may be available to us by several leukemia and cancer organizations. So, we contacted our social worker at the Cleveland Clinic to start the paperwork. I'll share these organizations later in the blog, but back to the insurance premium story for now. By October, 2014, while Todd was still in the hospital, we had learned through the another source that our premiums had now been raised to $1,480.66! We later received a letter from my husband's employer stating that due to the open enrollment period premiums had been raised for the upcoming year to $656.43 per month per employee, and since we were on COBRA, we would have to pay both the employee and employer portion which made the amount $1,312.86 effective November 1, 2014. This explained some of the increase, but not the $167.80 difference. After talking to the COBRA administrator, we asked if the employer had raised it to try to re-coup their lost portions from the prior months, and he said they were not allowed to do this, but he would call the employer to confirm the amount. In the meantime, we called the insurance agent for the employer and learned that since his employer's policy offered the Health Savings account option, which allows for out-of-pocket deductible reimbursement, our policy total was now $1,510.27 per month ($1,480.66 plus 2% processing fee). In essence, our health insurance premiums had almost tripled in three months!
So, we experienced the 1-2 punch! First, lack of income, then triple insurance premiums. Thank God that the insurance we had was great insurance. We had already met our deductible by the time the chemotherapy and the transplant procedure began, so we fortunately did not have huge hospital bills like some of the other patients we met. We did have some co-pays on some of the more expensive drugs/medications Todd needed post-transplant, but they are manageable since we've met our deductible for the year. Next year, may be a different story. Starting January, our deductible ($6,000 per person/$8,000 per family) will start over and that is on top of the $1,510.27 monthly premiums.
And we are fortunate. Most families end up in bankruptcy with medical bills after such procedures. After talking with some of the other patients we met in the hospital, some received bills of $700,000. just for the transplant day alone! Total bills for the entire procedure were near $1,500,000.00.
Now the good news and agencies that you can check into:
What help is available: Grants, reimbursements, organizations:
"Be The Match" Patient Services offers various grants depending on the patient's specific circumstances: whether the donor is related or unrelated, whether the transplant is autologous or allogeneic, and whether the transplant takes place at an approved transplant center or not. Autologous transplants are not eligible. Unrelated donor transplants are eligible if the donor was found through the National Marrow Donor Program. Related donor transplants are eligible. There is a criteria that has to be met including a statement of income and expenses. We contacted our assigned social worker at the Cleveland Clinic who gave us an application for the Hendrick Marrow Program Grant for transplants using related donors. Contact a social worker at the hospital in which your transplant will take place at for assistance in getting the grant application processed. For more information visit their website: www.bethematch.org/patient. This grant is usually a one-time payment/award.
A second source of assistance is through the Leukemia & Lymphoma Society and their co-pay assistance program. This program can provide assistance to qualified applicants in paying their treatment co-payments, insurance premiums, and medication co-payments. Go online to www.LLS.org/copay or call 1-877-557-2672. I will warn you that most of the application process for this program is online. There will be some verification that will need to be processed, like proof of diagnosis from your doctor, but they handle this directly. You do have to provide a copy of your insurance card, citizenship/residency proof, and proof of income. This nice thing about this program is that the award given is usually available for your co-payment claims for a year from treatment.
Another source, believe it or not is the hospital! First of all, many large hospitals or cancer treatment centers have their own charitable foundations that can assist those in need of financial assistance. Second, these same hospitals may be able to assist you with your insurance premiums during chemotherapy, transplants, and post-transplant treatments because it is beneficial to them for you to maintain your health insurance. They can collect more money from an insurance company for these large ticket item procedures than from a person with no health insurance. And, as a last resort, many people fail to realize that you can negotiate with the billing department of the hospital on final bills. Many times they are willing to settle for an amount they can collect, than for collecting nothing at all. Options include establishing monthly payment plans and/or negotiating a lump-sum settlement amount.
Don't forget to exhaust all available national and local sources. A social worker is your best advocate in this situation. Even the American Cancer Society can be of some help. For example, discounted hotel rooms for caregivers and cancer patients are free for a few days and thereafter rates can be reduced to $12 per day. While I have heard some negative stories about some of the facilities, it may not be the case everywhere. In the Cleveland area, The American Cancer Society has agreements with some of the Extended Stay Hotels with this type of arrangements. The Marriott Towne Suites we are staying in is subsidized with significantly reduced rates and offer extras such as free shuttle service to the hospital and/or free parking passes for the Cleveland Clinic parking garages which can save up to $100 per month.
I have talked about the Hope Lodge in prior posts, and would like to mention it here. It too is an excellent resource for transplant and cancer patients and families going through treatment. The Hope Lodge here in Cleveland provides FREE lodging for the patient and an adult caregiver going through treatment at the Cleveland Clinic. There is often a waiting list, so you need to have your social worker help get you on the list. They provide a private room, freezer and refrigerator space, community space with TVs and computers, and a community kitchen for all the patients and caregivers to use. In addition, various groups (church, fraternities and sororities from Case Western Reserve) come in at least once a week and cook meals for those staying there.
While we were tempted to seek out a second opinion and have the transplant procedure at the Ohio State Center so we could be closer to home, we are glad we stayed with the Cleveland Clinic. Not only for their great doctors, nurses, staff, and awesome social workers, but for their facilities that allow for visitation from friends and family due to the state-of-the art filtration system and because they are an approved transplant center that has the financial ability to help with subsidies.
Local sources include Cancer Support groups, your church family, friends, and neighbors. A fellow transplant patient was fortunate enough to have meals brought in from church families, and their neighborhood even organized a golf scramble with all the proceeds benefiting the family! Don't forget to contact your local chapter of the American Cancer Society or American way to see what help they can provide.
Here in Cleveland they have an organization called Touched by Cancer that provides two locations called The Gathering Place, where cancer patients and families can go for counseling, exercise programs, art classes, nutrition classes, music therapy, meditation and relaxation therapy, and other activities at no cost. http://www.touchedbycancer.org/
I'm sure there are more organizations you can find online or just by making connections with other cancer patients.
"How are we doing now?"
Well, without going into personal details, we are making serious changes. We are cutting our monthly expenses. I am looking for a full-time job with benefits so we can get rid of the high cost insurance we have after Todd's treatment period is over. We are looking into The Affordable Care Act (Obamacare) which is something I never thought we would have to do. Unfortunately, we are finding that the policy we would qualify for or need would still cost us about $1,000. per month! I will go back to substitute teaching until I can find something better. Todd's ability to go back to work at this point is not known. Sometimes it can take up to 18 months for a transplant patients to get their energy level back to normal. Beginning in March 2015, Todd will finally get his first Social Security Disability payment which will be a huge help. We've talked about selling our home and downsizing in the Spring to something smaller or renting a home or apartment in Beavercreek so our youngest daughter can continue to go to school there. Whatever happens, or however discouraging things may seem, we don't want to lose sight of the precious gifts of life and love we are blessed with. We are trusting in our Great God!
References:
LaMontagne, Christina. March 26, 2014. Web. Retrieved from: http://www.nerdwallet.com/blog/health/2014/03/26/medical-bankruptcy/
Day +55: Half way through and a Weekend trip home.
At Todd's Day +55 treatment and doctor's appointment, on Monday, November 11, 2014, everything was on schedule and there were no problems. His counts overall were good and on the rise, but there was a slight drop in his Platelets. Two out of four of his CBC counts are now in the normal range. Here are the results:
White Counts: 4.43 or 4,430. Normal range is 3.70-11.0
Hemoglobin: 11.5 Normal range is 13.0-17.0
Platelets: 47,000 Normal range is 150,000-400,000
Absolute Neut (ANCs) 3.44 or 3,440 Normal range is 1.45-7.50
We were a little concerned in the drop in his Platelets (went from 58,000 to 47,000), but after talking with his BMT nurse coordinator, she said that they typically see a slight drop in the Platelets from day 50-60 (Not sure why).
That day, we ran into another former patient that Todd was in the hospital with. He said he experienced the same drop in his numbers and even had to have a transfusion of blood due to lower hemoglobin at the 50-60 day point. When asking him about his chimerism or percentage of donor vs. self bone marrow left, he said he had gradual drops in his own bone marrow and that he was now at 100% of his donor's bone marrow cells and 0% of his own. He had his transplant about a week before Todd.
We also had breakfast with another former patient and friend we meet in the hospital. She was at a similar chimerism as Todd, but her CBC counts were a bit stronger. They started reducing her other immunosupporessant, Tacrolimus, just that week.
When Todd saw his BMT doctor later that morning, she said that they would probably begin reducing his Tacrolimus next week. They also drew blood work for another chimerism report, but it will likely take 1-2 weeks to get the results as usual.
The best news has been that Todd has not seen an obvious signs of Graft v. Host Disease since he was taken off his first immonosuppressant, Cellcept, last week. Todd's magnesium results were also steady after reducing his magnesium supplements from 6 to 4 tablets per day.
I still take his vitals twice per day, and there has been no sign of fever or high/low blood pressure. Todd is doing so well! We have no complaints! Well...except to go home.
Speaking of home, we had the doctor's permission to go home for a weekend visit the first time in two months! We arrived in Cleveland on Sunday, September 7 and got to go home for our first visit on November 7, 2014! It was so wonderful. I was able to cook using my gas range and oven! We were able to stretch out in our king size bed and sleep with our favorite pillows. The greatest thing was getting to see our daughters and parents. And of course, my dog! I'm sorry to say I didn't take one photo the whole weekend! We were living in the moment, every moment of everyday! We didn't get to go to church, because that is frowned on by the doctor (too many people, shaking hands, hugging, etc.), but we hope to go soon.
55 days down, 45 more to go!
White Counts: 4.43 or 4,430. Normal range is 3.70-11.0
Hemoglobin: 11.5 Normal range is 13.0-17.0
Platelets: 47,000 Normal range is 150,000-400,000
Absolute Neut (ANCs) 3.44 or 3,440 Normal range is 1.45-7.50
We were a little concerned in the drop in his Platelets (went from 58,000 to 47,000), but after talking with his BMT nurse coordinator, she said that they typically see a slight drop in the Platelets from day 50-60 (Not sure why).
That day, we ran into another former patient that Todd was in the hospital with. He said he experienced the same drop in his numbers and even had to have a transfusion of blood due to lower hemoglobin at the 50-60 day point. When asking him about his chimerism or percentage of donor vs. self bone marrow left, he said he had gradual drops in his own bone marrow and that he was now at 100% of his donor's bone marrow cells and 0% of his own. He had his transplant about a week before Todd.
We also had breakfast with another former patient and friend we meet in the hospital. She was at a similar chimerism as Todd, but her CBC counts were a bit stronger. They started reducing her other immunosupporessant, Tacrolimus, just that week.
When Todd saw his BMT doctor later that morning, she said that they would probably begin reducing his Tacrolimus next week. They also drew blood work for another chimerism report, but it will likely take 1-2 weeks to get the results as usual.
The best news has been that Todd has not seen an obvious signs of Graft v. Host Disease since he was taken off his first immonosuppressant, Cellcept, last week. Todd's magnesium results were also steady after reducing his magnesium supplements from 6 to 4 tablets per day.
I still take his vitals twice per day, and there has been no sign of fever or high/low blood pressure. Todd is doing so well! We have no complaints! Well...except to go home.
Speaking of home, we had the doctor's permission to go home for a weekend visit the first time in two months! We arrived in Cleveland on Sunday, September 7 and got to go home for our first visit on November 7, 2014! It was so wonderful. I was able to cook using my gas range and oven! We were able to stretch out in our king size bed and sleep with our favorite pillows. The greatest thing was getting to see our daughters and parents. And of course, my dog! I'm sorry to say I didn't take one photo the whole weekend! We were living in the moment, every moment of everyday! We didn't get to go to church, because that is frowned on by the doctor (too many people, shaking hands, hugging, etc.), but we hope to go soon.
55 days down, 45 more to go!
Thursday, November 6, 2014
Day +49: Doctor stops Cellcept immunosuppressant
Todd got a call the next day after his appointment, Tuesday, November4,2014, from his bone marrow transplant doctor with the results from his chimerism study. The cells from Todd's own bone marrow is at 28% which is down from the 58% result from October 8, 2014 but still not to the 0-4% they need to be.
So, to help the new bone marrow from Todd's brother to engraft better, the doctor instructed Todd to stop his immunosuppressant Cellcept that day. She hopes this will help by allowing a little Graft versus leukemia effect to happen. Unless Todd's old marrow dies out there will be a risk of relapse in Todd's MDS.
That same day I received a phone call from another BMT patient we got to know while Todd was in the hospital. She had a related-perfect-match donor
I'm transplant a few days after Todd's. She too received a call from the doctor (we use the same one) to discontinue her Cellcept too. Her original bone marrow cells were at 30% which isn't too different from Todd's.
Although the doctor is pleased with both recoveries, she is concerned about that percentage being a bit higher than she would like to see. Both Todd and this other patient/friend were part of the clinical trial where they received the reduced amount/experimental regime of pre-transplant chemotherapy. This is a little concerning. We hope that the trial regimen was strong enough to kill off the patients own bone marrow to allow full engraftment of the donor's marrow.
At this point, there is no reason for alarm. We still have to be on the lookout for any signs of severe Graft versus Host disease and hope that the Graft versus Leukemia Effect will take care of wiping out Todd's original bone marrow which still has MDS.
I'm sure the chimerism test will be repeated in a few weeks
Monday, November 3, 2014
Day +48: Numbers Increase and Medication decreases
At today's doctor's appointment, Monday, November 3, 2014, Todd's doctor did not have his latest chimerism study results back yet. It could be as late as Friday before they come back. So, we won't know the results until next's week's Monday appointment.
The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday. Under normal conditions, this medication is stopped between days +50 and +60. So, this Friday, will be Day +52. The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface. A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow. However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.
We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
Hemoglobin White ANC Platelets
October 27 10.9 3,110 2,190 50,000
October 31 11.3 3,840 2,740 57,000
November 3 11.6 4,610 u/k 58,000
His potassium and magnesium results have also been high enough not to need infusions. As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.
While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon. I'm ready!
I'm getting so tired of hotel living. The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am! Not to mention that I am terribly missing my family and my dog Charlie! I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier! My poor mom is ready for some relief too! (God, please help her to hang in there!).
We praise God for Todd's good health. We ask that you remember us in your prayers. This week specifically: That Todd's body will respond positively to the withdrawal of the medication. That God will give us all patience and forbearance to endure our living situations a few more weeks. That God will give us direction in our finances, job opportunities, and affordable health care in the months to come. Thanks.
The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday. Under normal conditions, this medication is stopped between days +50 and +60. So, this Friday, will be Day +52. The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface. A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow. However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.
We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
Hemoglobin White ANC Platelets
October 27 10.9 3,110 2,190 50,000
October 31 11.3 3,840 2,740 57,000
November 3 11.6 4,610 u/k 58,000
His potassium and magnesium results have also been high enough not to need infusions. As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.
While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon. I'm ready!
I'm getting so tired of hotel living. The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am! Not to mention that I am terribly missing my family and my dog Charlie! I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier! My poor mom is ready for some relief too! (God, please help her to hang in there!).
We praise God for Todd's good health. We ask that you remember us in your prayers. This week specifically: That Todd's body will respond positively to the withdrawal of the medication. That God will give us all patience and forbearance to endure our living situations a few more weeks. That God will give us direction in our finances, job opportunities, and affordable health care in the months to come. Thanks.
Wednesday, October 29, 2014
Day +42: Frozen Shoulder update
Todd has his appointment with a Orthopedic doctor at the Cleveland Clinic on October 27, 2014. He reviewed Todd's MRI results and concluded that there was a tear in the Glenoid Labrum tendon in the rotator cuff and an area of his shoulder joint was dented from a prior dislocation (at age 16 when Todd was sliding into home base!) which is called a Hill-Sachs deformity. He described the injury like the humeral head (pictured above) is like ping pong ball and when the dislocation happened it puts a dent in it. Todd's is not serious enough for surgery and it is likely he has been living with this with no serious problems since that time. Neither of these two discoveries are responsible for Todd's frozen shoulder in his opinion. He is not sure what caused this to happen. He said it is common in people with diabetes; one day they can wake-up and have a frozen shoulder for no reason. I think it is from the Neupogen. He said it was possible.
The frozen shoulder has loosened up considerably on its own with messaging, hot showers, heat, and doing some exercises we found on YouTube. To get his range of motion back to normal, the doctor recommended physical therapy. He will have an evaluation done by a physical therapist at a nearby Cleveland Clinic location in Avon Lake on November 11, 2014, who will recommend further treatment at that time. He will follow-up with the orthopedic doctor on November 24, 2014, at the Main Campus of the Cleveland Clinic. He also recommended heat and/or ice, whichever works best.
Meanwhile, I can't say enough about these exercises we found on YouTube. They are the same ones recommended to us by the Orthopedic doctor in a brochure he gave us. So, if you ever have a frozen shoulder, I highly recommend you check out this video:
http://www.youtube.com/watch?v=TE3AF_NOw4s
But, I'm no doctor! So, as in all medical disclaimers-check with your doctor!
More information:
Hill-Sachs:
http://orthopedics.about.com/od/instabilitydislocations/qt/Hill-Sachs-Defect.htm
Tuesday, October 28, 2014
Intimate relations post-bone marrow transplant
Oftentimes, I begin writing a blog with an idea of what I want to say, when instead I start typing and something totally different comes out. Today is one of those days! I wanted to only give an update on how Todd was doing, but then the issue of intimacy came to mind.
At yesterday's treatment appointment (Day +41), Todd's blood work showed that his platelets went up to 50,000 which is a milestone than many patients and spouses look forward to reaching. No intimate sexual relations are allowed with platelet counts under 50,000, so this is a positive step in returning back to a normal life. Cancer can put a real crimp in married life or with any intimate relationship. Chemotherapy drugs and side effects can be transmitted through intercourse. Many patients have had months of chemotherapy prior to transplant, making this a concern for a long period of time. I can't speak from a female with cancer's point of view, but according to the Cleveland Clinic's handout on sexuality post-transplant, many women experience vaginal dryness and/or changes in hormones. (Cleveland Clinic Foundation, 1995-2012). According to a Danish Study reported by the MDS Beacon, there is also research that suggests that some transplant patients suffer from some type of sexual dysfunction, including increased erectile dysfunction in men. (MDS Beacon, 2011).
While this is a personal subject, it is an issue that must be addressed. Regardless of any prior birth control measures, condom use is recommended post-bone marrow transplant to prevent transmission of dangerous medication side effects to the spouse, and to prevent even the slightest possibility of a yeast infection. (BMT patients are highly susceptible to any kind of yeast infection anywhere in the body). To make light of the situation, it was funny to be 45 years old, married 23 years, with Todd having had a vasectomy 10 years ago, but still having to buy condoms!
Both the BMT patient and the spouse can have a mixture of fears and feelings when it comes to their intimate relationship. After recently speaking with another wife of a transplant patient, the lack of sexual intimacy for months can bring feelings of sadness and loneliness. Being the caretaker, the spouse often feels more like a nurse of a fragile child instead of an intimate spouse. Kissing alone can be scary for the spouse, for fear of spreading the simplest of germs. For the transplant patient, stamina, fatigue, and overall energy levels are low to begin with; thoughts of intercourse can be more challenging. Some experience sexual dysfunction or for women, vaginal dryness which can add frustration to the situation. (MDS Beacon, 2011). Then, there are self-image issues to deal with. The loss of hair and/or weight/muscle, can leave the patient feeling less sexually attractive.
The good news: For most patients and spouses, "This too shall pass." As blood counts comes up, energy levels come up too. Once platelets reach 50,000 or greater, sexual intercourse can resume when the patient feels ready for it. Hair re-growth and weight gain will eventually return to normal adding self-esteem along the way. There are many medications that doctors can prescribe for dysfunction or hormonal issues. Patience is key!
For more information:
Cleveland Clinic Foundation (1995-2012). Resuming Sexual Activity after Bone Marrow Transplant.
https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Bone_Marrow_and_Transplantation/hic-resuming-sexual-activity-after-bone-marrow-transplant
MDS Beacon (2011). High Rates of Sexual Dysfunction. Retrieved from: http://www.mdsbeacon.com/news/2011/09/15/high-rates-of-sexual-dysfunction-reported-after-stem-cell-transplantation/
At yesterday's treatment appointment (Day +41), Todd's blood work showed that his platelets went up to 50,000 which is a milestone than many patients and spouses look forward to reaching. No intimate sexual relations are allowed with platelet counts under 50,000, so this is a positive step in returning back to a normal life. Cancer can put a real crimp in married life or with any intimate relationship. Chemotherapy drugs and side effects can be transmitted through intercourse. Many patients have had months of chemotherapy prior to transplant, making this a concern for a long period of time. I can't speak from a female with cancer's point of view, but according to the Cleveland Clinic's handout on sexuality post-transplant, many women experience vaginal dryness and/or changes in hormones. (Cleveland Clinic Foundation, 1995-2012). According to a Danish Study reported by the MDS Beacon, there is also research that suggests that some transplant patients suffer from some type of sexual dysfunction, including increased erectile dysfunction in men. (MDS Beacon, 2011).
While this is a personal subject, it is an issue that must be addressed. Regardless of any prior birth control measures, condom use is recommended post-bone marrow transplant to prevent transmission of dangerous medication side effects to the spouse, and to prevent even the slightest possibility of a yeast infection. (BMT patients are highly susceptible to any kind of yeast infection anywhere in the body). To make light of the situation, it was funny to be 45 years old, married 23 years, with Todd having had a vasectomy 10 years ago, but still having to buy condoms!
Both the BMT patient and the spouse can have a mixture of fears and feelings when it comes to their intimate relationship. After recently speaking with another wife of a transplant patient, the lack of sexual intimacy for months can bring feelings of sadness and loneliness. Being the caretaker, the spouse often feels more like a nurse of a fragile child instead of an intimate spouse. Kissing alone can be scary for the spouse, for fear of spreading the simplest of germs. For the transplant patient, stamina, fatigue, and overall energy levels are low to begin with; thoughts of intercourse can be more challenging. Some experience sexual dysfunction or for women, vaginal dryness which can add frustration to the situation. (MDS Beacon, 2011). Then, there are self-image issues to deal with. The loss of hair and/or weight/muscle, can leave the patient feeling less sexually attractive.
The good news: For most patients and spouses, "This too shall pass." As blood counts comes up, energy levels come up too. Once platelets reach 50,000 or greater, sexual intercourse can resume when the patient feels ready for it. Hair re-growth and weight gain will eventually return to normal adding self-esteem along the way. There are many medications that doctors can prescribe for dysfunction or hormonal issues. Patience is key!
For more information:
Cleveland Clinic Foundation (1995-2012). Resuming Sexual Activity after Bone Marrow Transplant.
https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Bone_Marrow_and_Transplantation/hic-resuming-sexual-activity-after-bone-marrow-transplant
MDS Beacon (2011). High Rates of Sexual Dysfunction. Retrieved from: http://www.mdsbeacon.com/news/2011/09/15/high-rates-of-sexual-dysfunction-reported-after-stem-cell-transplantation/
Monday, October 20, 2014
Chimerism study: first set of results
At today's treatment appointment, all of his blood counts levels and magnesium and potassium levels were good enough that no transfusions or infusions were needed. His counts continue to climb which is a good sign that Todd's new bone marrow from his brother (the donor) is engrafting and producing healthy cells.
Two issues at the doctor's appointment were discussed today. First, Todd's blood work from a chimerism study and the rash on Todd's face.
First, the chimerism study. It is a study of the DNA and HLA typed blood cells in Todd that determines how many cells are present from his own bone marrow versus his newly donated bone marrow. These results "lag behind" according to the doctor, so they may not be reflective of the present (they may be older than what is currently happening). This initial report showed that 49% of the cells were from Todd's original bone marrow. (This makes his chimerism mixed.) That means that 51% of his cells are from his newly donated bone marrow from the transplant. The doctor is thinking about repeating this test on Friday to check for more current results. We would all hope to see Todd's cell numbers from his old bone marrow to greatly decrease and the new cells from his newly donated bone marrow would greatly increase. The best result would be that there would be little to none left of Todd's old bone marrow cells.
What is the implication of these results? The chemotherapy that Todd underwent prior to transplant was to kill his own bone marrow since it was not producing healthy cells. There is a possibility that a relapse of Todd's MDS could occur if left unmonitored. The goal of the transplantation process is that the donor's bone marrow will engraft and take over healthy blood cell production. A mixed chimerism of both cells could prevent this from happening. This is where the Graft versus Cancer/Leukemia/tumor (GvL) effect comes in.
This is why monitoring is so important post-transplant. The doctor can manipulate the GvL by altering the amount and type of medications Todd is on now. The doctor is talking about removing Cellcept from Todd's cocktail of medications. The Cellcept is a type of immunosuppressant that keeps the body from developing Graft versus Host disease. The idea here: to allow a little Graft versus Host in the form of Graft versus Cancer/leukemia effect to kill out Todd's old bone marrow to allow more engrafting of his new donated marrow.
I will post updates on this issue as it develops.
Second issue:
The rash that started on Todd's face and neck has spread a bit to his chest and abdomen. It has not changed in intensity at all, so the doctor is still just keeping an eye on it. He will continue to use hydrocortisone on it for now.
Post Script: Date of Chimerism study: Day of release from hospital: October 8, 2014.
More information on chimerism studies:
http://omicsonline.org/2155-9864/2155-9864-S1-006.php?aid=4311
Sunday, October 19, 2014
Day +33. One third way through recovery
Blood counts on Friday, October 17, 2014: Hemoglobin 10.3, white 2,900, ANCs 2,150 and Platelets at 28,000. He still has a way to go until all of these numbers make it into the normal range. Right now, only his ANCs are officially in the normal range; all others still considered low.
Update on Todd's frozen shoulder: It has improved with hot showers, messaging, and the heating pad. His range of motion has increased but it is not back to 100%. He has a MRI scheduled on Tuesday, October 21, 2014.
He developed a light rash on his face and neck on Tuesday, which is a sign of Graft versus Host disease. The nurse coordinator is not concerned about it at all. We were told to treat it with hydrocortisone cream for now and to be sure that Todd wears sunscreen everyday. Sun exposure can bring out GvH of the skin even on cloudy days. So we have added sunscreen to the morning regimen.
We had visitors from home this weekend. This was such an encouragement and blessing. Jeff, the associate Pastor of our Church, Hillside Chapel, treated us to lunch on Friday afternoon. It was so nice to talk about everyday things and to have prayer with him.
Then, our three daughters came up for the weekend. We went to Little Italy for dinner and dessert on Friday night.
On Saturday, we slept in and I made pancakes and bacon for breakfast. Then we went to the Cleveland Art Museum for the afternoon. It was amazing. We have all been to great museums like the Louvre in Paris and The British Museum in London; We didn't get to see everything, so we definitely would love to go back. We finished the day with dinner at the Cheesecake Factory and the girls had Menchies frozen yogurt for dessert.
On Sunday, we enjoyed pan chocolat and then drove down to Bay Village to get a look at Lake Erie. After that, we did some eating, walking, and shopping at the Beachwood Mall. It was a great weekend. Being around our daughters was so much fun!
Todd has a treatment and a doctor's appointment tomorrow morning and afternoon.
Monday, October 13, 2014
Day +27: Blood transfusion needed
I Today, October 13, 2014, Todd had to go to his treatment appointment right after his doctor's visit. (It's usually the other way around).
Today, his orthostatic blood pressure and pulse were fine; no IV fluids were needed, but he did need a blood transfusion because his Hemogloblin at 8.5, below the 9.0 outpatient threshold level.
The rest of his counts were steady but still below normal. Whites: 2,610; ANCs (neutrophils) 2,050; and his platlets are at 19,000.
It took about half of the day to get through this appointment. Blood work, and blood typing and matching alone took hours. This is an important step, because the blood he receives for transfusion has to be screened so that it doesn't interfere with any of Todd's antibodies.
He received two units of blood and someone from pulmonary came down and gave him his breathing treatment of Panti.
Before we left for the day, the bone marrow transplant scheduling department had scheduled his X-Ray immediately following his transfusions today and the MRI for October 21, 2014.
Day + 27: Frozen Shoulder side effect
But it hasn't. Instead, it has only gotten worse in the last few days. He has very limited mobility of his left arm. He can't raise it up at all and when he tries he is in excruciating pain. So, we brought it up to the doctor again today, and she said it is likely "Frozen Shoulder" and that it was likely caused from the Neupogen. I had never heard of it before so I looked it up online.
http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/multimedia/frozen-shoulder/img-20007530
It can occur after a serious medical condition. I also looked at the side effects of Neupogen and it said that muscular problems have occurred about 22% of the time in studies and it occurs in the left shoulder (exactly the shoulder and arm that hurts Todd). Todd thought it was his rotator cuff, but we ruled that out too because it was his left arm, not his dominant pitching/throwing
right arm.
So, what happens now? They are setting up appointments for an X-ray, Orthopedist, and physical therapy to confirm the diagnosis and to receive treatment to loosen up the joint and thereby relieve his pain. However, I'm afraid this is going to take weeks or months or possibly longer to resolve.
We will keep everyone posted. Please pray that he can see a specialist soon and for pain relief.
More information http://www.drugs.com/sfx/neupogen-side-effects.html
Friday, October 10, 2014
Day +24. First Outpatient Treatment post BMT
Our nurse introduced us to the treatment center and the treatment procedure when he comes in for a visit. First they took his vitals. No fever! This is always a praise.
Then, they had to take his blood pressure sitting and then standing. If his blood pressure drops more than 20 points or if his pulse drops from sitting to standing they consider him dehydrated and they have to give him IV fluids. This was the case today. His blood pressure was 110/65 sitting but dropped to 90/50 when he stood up.
She told him that the new requirement for liquid consumption is now 2- 2liters of water per day. This does not include any decaf coffee or tea either. He can count Gatorade and some juice in that total.
They drew bloodwork and we were so happy to hear the results about 30 minutes later. Outpatient requirements or thresholds for counts are a bit more tough. Hemogloblin has to be over 9.0 instead of 8.0 to avoid a blood transfusion. Todd was at 9.5 today!
His white count was 2,610; ANCs were at 1,680; and platelets were at 15,000. (So happy his marrow seems to be making enough!).
It took about 2 hours to get his IV of fluids. By then his magnesium and potassium levels were back; both levels were within the acceptable ranges. Potassium was at 4.4 Infusions are given if levels are at 3.3 or less (normal is 3.5-5.0 mmol/L). His magnesium was at 1.6. Infusion is given only if it is 1.3 or less. (Normal range 1.7-2.6 mg/dL).
Todd's next appointment will be Monday. He will go through treatment screening again and receive anything he needs. He will also be getting a breathing treatment of Pentamidine to help prevent infections. The last one he had was done shortly after admission. He has to have this treatment as an extra precaution along with Amoxicillin since he can't take Bactrum (a suspected drug allergy). He will also have his weekly appointment with his bone marrow transplant doctor.
He has three appointments scheduled each week through the end of November. He will go down to two appointments per week in December.
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