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.
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