Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Keir is now two weeks away from his "100 days" post transplant. So far he has been fortunate in that he has not had any infections or real difficulties other than some difficulty sleeping and some occasional stomach trouble.
His counts are okay - not normal but apparently not unusual for this stage of a transplant. His last wbc was 3.8 and his anc is 2.5. His platetets were 105, I believe. HCT and HGB was low but high enough so so that has not needed any transfusions since starting clinic post transplant.
He feels well. He exercises a fair bit- walks or exercycles four miles a day, walks stairs, lifts light hand weights. He is careful with the low bacteria diet and has been good about following the rules about staying away from people and germs and what not.
His chimerism tests have all been good. Now we are approaching the bone marrow biopsy and I would ask for all your prayers and good thoughts that it be fine and that Keir can begin to regain parts of a normal life. He has been isolated for so long he really feels depressed. I am having a lot of PTSD and anxiety issues, ongoing ones, and am not sure how to cope with those. As Lou said once, the worst parts o this illness can be mental; and the anxiety just overwhelms me at times in waves. He still goes to clinic twice a week - Mondays and Thursdays - and I still feel rather intense fear every singe time they draw his blood. It is hard for me to relax. And Keir seems so quiet much of the time, as though he is withdrawing further into himself. So the fall out from this illness is so far reaching, though I'm not telling anyone here anything they don't already know. We have been blessed with some very good results and I am aware of that every minute of the day and I thank God for it. But none of us can shake the sense that our lives were blown up by a terror attack on August 26, 2013, and the dust has yet to settle, let alone the rebuilding begun.
For the people who feel they can only thank God for today, I understand and admire that attitude. As a mom, though, I can only say that we want a future for our children and would die for it and while I want the best quality of life for my children today, I want a future for Keir, like all moms. And AML has threatened that and has caused enormous stress. I need to deal with this in some way and have not yet found quite how to do so.
We would ask for your prayers that his counts remain stable or improve and that his upcoming bone marrow biopsy is clean, of course. And that God remain by our side and guide us as we try to pick our way through waters that still feel uncharted and treacherous.
There are lines from my favorite poem I was thinking about today. Easter 1916.by Yeats...two parts:
"Too long a sacrifice
Can make a stone of the heart."
(and)
"Are changed, changed utterly:
A terrible beauty is born"
Speaking as a mother and caregiver, I do feel that this sacrifice my son has made has gone on too long; he needs to reclaim parts of his life before his heart will indeed "turn to stone". And our lives truly do feel "changed utterly." I don[t really think I know just how profoundly yet because it's too early. But I thank all of you on this board for your support and help and caring and patience and prayers.
His counts are okay - not normal but apparently not unusual for this stage of a transplant. His last wbc was 3.8 and his anc is 2.5. His platetets were 105, I believe. HCT and HGB was low but high enough so so that has not needed any transfusions since starting clinic post transplant.
He feels well. He exercises a fair bit- walks or exercycles four miles a day, walks stairs, lifts light hand weights. He is careful with the low bacteria diet and has been good about following the rules about staying away from people and germs and what not.
His chimerism tests have all been good. Now we are approaching the bone marrow biopsy and I would ask for all your prayers and good thoughts that it be fine and that Keir can begin to regain parts of a normal life. He has been isolated for so long he really feels depressed. I am having a lot of PTSD and anxiety issues, ongoing ones, and am not sure how to cope with those. As Lou said once, the worst parts o this illness can be mental; and the anxiety just overwhelms me at times in waves. He still goes to clinic twice a week - Mondays and Thursdays - and I still feel rather intense fear every singe time they draw his blood. It is hard for me to relax. And Keir seems so quiet much of the time, as though he is withdrawing further into himself. So the fall out from this illness is so far reaching, though I'm not telling anyone here anything they don't already know. We have been blessed with some very good results and I am aware of that every minute of the day and I thank God for it. But none of us can shake the sense that our lives were blown up by a terror attack on August 26, 2013, and the dust has yet to settle, let alone the rebuilding begun.
For the people who feel they can only thank God for today, I understand and admire that attitude. As a mom, though, I can only say that we want a future for our children and would die for it and while I want the best quality of life for my children today, I want a future for Keir, like all moms. And AML has threatened that and has caused enormous stress. I need to deal with this in some way and have not yet found quite how to do so.
We would ask for your prayers that his counts remain stable or improve and that his upcoming bone marrow biopsy is clean, of course. And that God remain by our side and guide us as we try to pick our way through waters that still feel uncharted and treacherous.
There are lines from my favorite poem I was thinking about today. Easter 1916.by Yeats...two parts:
"Too long a sacrifice
Can make a stone of the heart."
(and)
"Are changed, changed utterly:
A terrible beauty is born"
Speaking as a mother and caregiver, I do feel that this sacrifice my son has made has gone on too long; he needs to reclaim parts of his life before his heart will indeed "turn to stone". And our lives truly do feel "changed utterly." I don[t really think I know just how profoundly yet because it's too early. But I thank all of you on this board for your support and help and caring and patience and prayers.
He is so strong and has done everything right and all appears to be great :)
Positive thoughts he has done so well :)
xxx