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AMLMomma 08-28-2015 06:29 AM

Bone Marrow Transplan ... caregiver support
 
I am the caregiver for my 18yr old who has Acute Myeloid Leukemia and has to have a bone marrow transplant to survive. I'm already on the Leukemia board, but what I'm looking for is support for me. Emotionally, he is doing better then I am. At least on the surface. He says he's fine. Heck, most of the time I say I'm fine too. But I feel like I'm dying inside. My heart is breaking. I am absolutely terrified of losing my son. I'm still working f/t and that has honestly been my only support. It is the one place I can break down. Thank goodness for understanding coworkers and an even better boss!! But I honestly feel alone in this battle. My son is content with not knowing much information and my husband is the same way. I'm not. I'm not comfortable blindly following the doctors and just showing up when they tell us. I need to know the ins and outs. And that has it's pro's and con's. Because I can't talk to anybody about it at home. Nobody knows and nobody wants to know but me. So I carry the heavy burden of knowing what kind of battle we are about to go through. He may get lucky and sail right through, and I hope to God he does. But I also know that it is unrealistic to think it is a walk in the park! Yesterday, we got the tentative transplant dates and it just made it all real that this is really going to happen. It has been nothing but a wave of emotions ever since and I'm just struggling right now. All I want to do is go home and crawl back in to bed. I know I need to be strong for my son. But dang it, who is going to keep me going?!

phoffland 01-07-2016 09:49 PM

Re: Bone Marrow Transplant....caregiver support
 
My husband is 45 with AML. At first we were told it was favorable and then it came back in his skin about 2 weeks after discharge. Then he was told he would need re-induction and a transplant. Most recent biopsy done on 12/4 showed 7% blasts. They won't do a transplant until less than 5% blasts so he started decitabine last Wed. Major problem is his brother is not a match, his parents are too old, our son is too young, there are no exact matches in the registry and the three possible 7/8 donors are in unavailable. I am like you and can't help but worry about what tomorrow brings. Everyone tells bmme to live in the now, but how can I do that when we keep getting more and more bad news? Did your son get his transplant? How is he doing?

[QUOTE=AMLMomma;5380454]I am the caregiver for my 18yr old who has Acute Myeloid Leukemia and has to have a bone marrow transplant to survive. I'm already on the Leukemia board, but what I'm looking for is support for me. Emotionally, he is doing better then I am. At least on the surface. He says he's fine. Heck, most of the time I say I'm fine too. But I feel like I'm dying inside. My heart is breaking. I am absolutely terrified of losing my son. I'm still working f/t and that has honestly been my only support. It is the one place I can break down. Thank goodness for understanding coworkers and an even better boss!! But I honestly feel alone in this battle. My son is content with not knowing much information and my husband is the same way. I'm not. I'm not comfortable blindly following the doctors and just showing up when they tell us. I need to know the ins and outs. And that has it's pro's and con's. Because I can't talk to anybody about it at home. Nobody knows and nobody wants to know but me. So I carry the heavy burden of knowing what kind of battle we are about to go through. He may get lucky and sail right through, and I hope to God he does. But I also know that it is unrealistic to think it is a walk in the park! Yesterday, we got the tentative transplant dates and it just made it all real that this is really going to happen. It has been nothing but a wave of emotions ever since and I'm just struggling right now. All I want to do is go home and crawl back in to bed. I know I need to be strong for my son. But dang it, who is going to keep me going?![/QUOTE]

AMLMomma 01-08-2016 06:11 AM

Re: Bone Marrow Transplant....caregiver support
 
He did, on 9/28. We have passed the 100 day mark, but due to GVHD, we are still required live near the hospital. That has been a blessing and a curse.

Due to his genetic markers, they are doing low dose chemo post transplant for 4 cycles in an attempt to prevent relapse. We are in the 2nd cycle now.

He has some liver damage from the chemo, but steroids seem to be helping. May be GVHD too, but they haven't done a liver biopsy. And right now, I think he is trying to develop a kidney infection. They are watching his numbers. We are ready to go home. But he is on so many steroids (100mg), and with his GVHD still flaring, they don't want us to leave. :(

Hope you are able to find a match for your husband. They never did for our son. We had to go with a haplo using his Dad as the donor. His Dad is above the age limit they normally allow for donors, but we didn't have a choice. His recovery was rough, as they used actual bone marrow. But he did get through it.

Nancylyoussef 07-14-2016 05:13 AM

Re: Bone Marrow Transplan ... caregiver support
 
I am sick to my stomach for you. It's got to be just horrible watching your child be sick. You mentioned you were still at the hospital. How far away did you live that you had to stay at the hospital? I will be getting my transplant date on Friday and we have to An extended stay facility in Cleveland Ohio. I can't even imagine what that must feel like not being able to be home. Prayers to your family. Nancy

AMLMomma 07-21-2016 10:52 AM

Re: Bone Marrow Transplan ... caregiver support
 
[QUOTE=Nancylyoussef;5425323]I am sick to my stomach for you. It's got to be just horrible watching your child be sick. You mentioned you were still at the hospital. How far away did you live that you had to stay at the hospital? I will be getting my transplant date on Friday and we have to An extended stay facility in Cleveland Ohio. I can't even imagine what that must feel like not being able to be home. Prayers to your family. Nancy[/QUOTE]

Thank you. We were 3 hours from home. We did finally get to go home at day 130, and that is only because I insisted.

He is now day 297. I'd love to say that everything is great, but his battle still continues. Not with Leukemia, as he is still in remission, but with the effects. He has GVHD that doesn't like to respond to treatment. He's had CMV 4x. Currently in the 4th now, levels still low. But they are restarting his CellCept to hopefully help with the GVHD....but on the flip side, it can make his CMV worse. SO, he has to be monitored 2x a week. He still goes to the city (3 hours away) every other week for ECP/Photopheresis to try and get his GVHD under control, but so far, only a partial response and it is still spreading. Right now, his skin is the most affected with 100% of his skin being affected, and I do mean that literally. Not an inch of his body has been spared. His liver is mildly affected and praying it stays that way.

Don't get me wrong, we are grateful he is alive. We are grateful for every day we have with him. But, he is not living life. He is simply living and it is starting to take a toll on him emotionally.


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