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Bone marrow search update


Forum: Recurrent Miscarriage and Pregnancy Loss

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  #1  
August 19th, 2010, 09:43 AM
docsmomma's Avatar Platinum Supermommy
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I just spoke with CoH. I call every Thursday for updates. Todays update was positive, scary, exciting, and a relief.

First, we are not yet ready to move forward to transplant. We are still looking for our perfect donor BUT we are making baby steps. Ideally we want a living donor who is willing to do marrow donation, not periferal stem cells.

At this time we are waiting on testing from 2 living potential donors. One was tested this week and one will be tested next week. 8 have already been tested. So far no living donor matches but these 2 look promising.

However, if necessary we do have a cord blood match we can use. Transplant will happen... its just a matter of when.

I am thrilled to know there is something that we can use, regardless of if it is a living donor or cord blood. Cells are cells... and we need some healthy cells to make our boy healthy.

But I am also terrified, knowing what we are looking at. Let's face it... this kid has never had a bone marrow biopsy done, and he will soon. I can't help but look at the what if's... what if his bone marrow shows something else on top of LCH that makes him unable to be transplanted? I know that happens... the histio community has seen it recently.

Then theres the what if of going to transplant. I refuse to speak those words. I push it out of my mind everytime that nagging voice says what if.... followed by those horrible words.

I can deal with the what if theres long term complications as long as he comes through this a survivor.
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  #2  
August 19th, 2010, 10:30 AM
esparando para bebé's Avatar Proud Car Seat Technician
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*hugs* Traci. You know you can call me any time. I know with Haley's diagnosis and passing recently it's that much scarier. I am thinking the same thing. Just remind yourself, as you said Haley's lesions LOOKED like JXG, but no one recognized it because of it's rarity. YOU know what JXG looks like. You know how to recognize that. Yet, you haven't seen that. And if, God forbid, the find HLH, (which again there don't appear to be symptoms of in Joey) then you're already going to trasnplant. Cure both at once!

Joey's angel siblings, along with my angel babies (Jillian especially) are going to be there with him, helping him pull through this. Joey is at war and defeat is not an option.
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  #3  
August 19th, 2010, 10:38 AM
ambee's Avatar Platinum Supermommy
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Traci, I don't have any brilliant words for you, as I can't even imagine how you must be feeling right now. I will say that you are one of the most amazing, strong women I know and Joey is lucky to have you as his Mom. And in turn, you are lucky to have such a fighter as a son.

I am glad that there is at least a glimmer of hope right now for you. I'm sure you've learned to let the good news propel you into some hope for the new day. Just remember to try (and I can't imagine how hard this must be) to take it one day at a time. The what ifs will drive you insane. Keep your chin up, we are all praying hardcore for you!

Big hugs!
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  #4  
August 20th, 2010, 06:18 PM
MommytoaMiracle's Avatar Platinum Supermommy
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Huge hugs!
Keep us posted!
You guys are in my prayers every night!
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