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Bone Marrow Transplant (BMT)

JaysonandKristinJaysonandKristin member
in Special Needs

I have a family member with an infant who has nearly no autoimmune system.  The baby has been determined to be in a position to rehabilitate her autoimmune system through treatments she's already undergone AND a BMT.  

The baby is on MY side of the family, but not part of my immediate family.  I will be tested to see if I am an eligible donor.  DH refuses, and he also refuses to allow us to test our two boys to see if they are matches.  

It's a very delicate subject, I understand.  But, is there a way to compassionately discuss this with him?  I wouldn't dream of convincing him that it's his responsibility to get tested for compatibility.  But, I also believe that as family, we should see if the boys are matches and offer to be a donor if I  they are matches.   

Or, am I wrong?  Should I not offer up the boys as donors?  And, do I just let it rest, as in DH doesn't want to, so leave it at that? 

Prudence
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Re: Bone Marrow Transplant (BMT)

  • ToastieSimonsToastieSimons member

    In regards to offering up your boys, both you and your DH are their parents.  You both need to be on the same page.  Have you asked him why he doesn't want the parents tested?  Is it because if they are a match then you have to make the difficult decision of whether to donate and have your child undergo a pretty painful procedure?  Is it a religious reason where he doesn't believe in the practice of transferring blood products (such as Jehovah's witnesses refuse all blood products even in the event of emergencies)?

    I think that the initial reaction to finding out a family member needs a BMT is "GREAT!!! Let's test everyone!".  However, being a match isn't just having a needle stick and you're done.  A bone marrow donation is a painful and traumatic experience.  It's a big decision to make to put your LO's through it, especially when they don't get a say in the matter.  Are you emotionally prepared to help your LO through the process after the face?  When they ask why?  Or when they tell you how badly it hurts?

    I'm not trying to sway you one way or the other, but that you really need to discuss with your DH WHY he feels the way he feels before you're going to ever be able to persuade him. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • XCrissCrossXXCrissCrossX member

    At your children's ages, I'm wondering if they are even eligible to donate? They seem very young for that procedure.

    Donating bone marrow is not like blood donation, as PP said. It is a painful surgery.

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  • JaysonandKristinJaysonandKristin member

    I haven't asked DH why.  It seemed like SUCH a sensitive matter I didn't really know how to pursue the Why? without sounding like I was attacking him or making him feel like he wasn't willing to help/being selfish.  We have absolutely no religious affiliations.

    The testing for compatibility is a cheek swab.  It's not just blood-type compatibility, although I know both of the boys have different blood types than both my DH and myself.

    The actual procedure itself is a total WIPE OUT.  I've heard some god-awful stuff, but all of the websites that talk about it say that it's under general anesthesia if desired.  I'm supposing that the pain afterward is pretty excruciating, although the descriptions I've read say that it's managed with Tylenol.  Perhaps the procedure is better nowadays?  

    Risks include all of the usuals associated with surgery as well as low back pain, fatigue, stiffness and bleeding at the site.  

    I hate to bring up my DS1's issues as a "If our family could've helped, wouldn't you have wanted ALL of them to rally behind us?"  At the same time it feels like a reasonable argument. 

    I am assuming that because it's a donation with a specific recipient in mind (and that it's an intrafamily transfer), it wouldn't matter how young the donor.  I could absolutely be wrong. 

     

    Prudence
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  • april262011april262011

    Harvesting bone marrow for a transplant now is almost exactly like giving blood.  The donor receives an injected medication that causes his bone marrow cells to circulate in the blood.  His blood is then collected and the marrow is filtered out.  It is now very much like giving blood.

    I know several people who have recently donated as my son is being treated at a cancer hospital.  I think many PP are confusing donation with a bone marrow biopsy, which the cancer patient frequently undergoes.

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  • april262011april262011

    I forgot to add that it may not be legal to donate your son's bone marrow if they were a match.  

    Could you talk to the family's doctor to describe the testing/donation process?  Perhaps knowing exactly what the process involves may change your husband's mind as far as being tested himself. 

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  • S-TunaS-Tuna member

    I would probably get as much information as I could about the process and then bring it up with DH again. I am not sure if I would allow my son to be a donor. Right now, that is because I don't have enough information. Maybe your DH just needs some time to really think it over?

    I hope they find a match soon.

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  • Ginlyn0Ginlyn0 member
    imageapril262011:

    Harvesting bone marrow for a transplant now is almost exactly like giving blood.  The donor receives an injected medication that causes his bone marrow cells to circulate in the blood.  His blood is then collected and the marrow is filtered out.  It is now very much like giving blood.

    I know several people who have recently donated as my son is being treated at a cancer hospital.  I think many PP are confusing donation with a bone marrow biopsy, which the cancer patient frequently undergoes.

    This exactly. I have a coworker whose 17 yo old DS has ALL. Her 10yo DD was the bone marrow donor. Her DD had the procedure done on Friday and was back in school on Monday. It is nothing like it used to be. We got to see pics of the kids before the transplant while her son was recieving the transplanted bone marrow and a pic of the kids smiling after laying around together afterward in the same hospital bed. If it weren't for privacy I would show you the pics, since I have them.

    Here is the exact email I recieved from their mom/my coworker with names changed:

    "I know I said I would send some pictures out?..sorry it took me so long.  I included a picture of DD?s Bone Marrow as they were getting ready to start the Transplant.  There is also one of DD and DS ?Chillin? after the transplant.  DD is doing good.  She went back to school on Monday.  She is feeling good?.just hates taking the iron meds.  DS is doing pretty good.  He is getting over a Bacterial infection, but beginning to eat again.  They have already warned him that Friday or Saturday he will probably begin running a fever and not feeling well.  It is ?normal? for where he is at during the transplant. "

     

    DD(14),SD(13),SS(11),SS(9),DS(3)

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  • JaysonandKristinJaysonandKristin member
    imagegin9874:
    imageapril262011:

    Harvesting bone marrow for a transplant now is almost exactly like giving blood.  The donor receives an injected medication that causes his bone marrow cells to circulate in the blood.  His blood is then collected and the marrow is filtered out.  It is now very much like giving blood.

    I know several people who have recently donated as my son is being treated at a cancer hospital.  I think many PP are confusing donation with a bone marrow biopsy, which the cancer patient frequently undergoes.

    This exactly. I have a coworker whose 17 yo old DS has ALL. Her 10yo DD was the bone marrow donor. Her DD had the procedure done on Friday and was back in school on Monday. It is nothing like it used to be. We got to see pics of the kids before the transplant while her son was recieving the transplanted bone marrow and a pic of the kids smiling after laying around together afterward in the same hospital bed. If it weren't for privacy I would show you the pics, since I have them.

    Here is the exact email I recieved from their mom/my coworker with names changed:

    "I know I said I would send some pictures out?..sorry it took me so long.  I included a picture of DD?s Bone Marrow as they were getting ready to start the Transplant.  There is also one of DD and DS ?Chillin? after the transplant.  DD is doing good.  She went back to school on Monday.  She is feeling good?.just hates taking the iron meds.  DS is doing pretty good.  He is getting over a Bacterial infection, but beginning to eat again.  They have already warned him that Friday or Saturday he will probably begin running a fever and not feeling well.  It is ?normal? for where he is at during the transplant. "

     

     

    Thank you both for offering your perspectives.  Apparently, it's time for us to both discuss this issue with our Pedi so that DH can ask anything and everything he has concerns with. 

    Prudence
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  • april262011april262011
    imageJaysonandKristin:
    imagegin9874:
    imageapril262011:

    Harvesting bone marrow for a transplant now is almost exactly like giving blood.  The donor receives an injected medication that causes his bone marrow cells to circulate in the blood.  His blood is then collected and the marrow is filtered out.  It is now very much like giving blood.

    I know several people who have recently donated as my son is being treated at a cancer hospital.  I think many PP are confusing donation with a bone marrow biopsy, which the cancer patient frequently undergoes.

    This exactly. I have a coworker whose 17 yo old DS has ALL. Her 10yo DD was the bone marrow donor. Her DD had the procedure done on Friday and was back in school on Monday. It is nothing like it used to be. We got to see pics of the kids before the transplant while her son was recieving the transplanted bone marrow and a pic of the kids smiling after laying around together afterward in the same hospital bed. If it weren't for privacy I would show you the pics, since I have them.

    Here is the exact email I recieved from their mom/my coworker with names changed:

    "I know I said I would send some pictures out?..sorry it took me so long.  I included a picture of DD?s Bone Marrow as they were getting ready to start the Transplant.  There is also one of DD and DS ?Chillin? after the transplant.  DD is doing good.  She went back to school on Monday.  She is feeling good?.just hates taking the iron meds.  DS is doing pretty good.  He is getting over a Bacterial infection, but beginning to eat again.  They have already warned him that Friday or Saturday he will probably begin running a fever and not feeling well.  It is ?normal? for where he is at during the transplant. "

     

     

    Thank you both for offering your perspectives.  Apparently, it's time for us to both discuss this issue with our Pedi so that DH can ask anything and everything he has concerns with. 

    I just wanted to add that you should have the child in need's specialist describe the donation  procedure to you.  Let your family member know you are considering testing but would like more information from their doctor.  Someone from their office should contact you to discuss and answer questions. 

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