Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

It wasn't leukemia, but....

Posted by on Jan. 8, 2014 at 8:28 PM
  • 28 Replies

I know I said I probably wasn’t going to update for a good while because last week we were under the assumption that while they dipped, his blood work would start coming back up on a slow but steady climb. Well, now we know that won’t happen without medical intervention. You see they finally have an official diagnosis for him. My oldest son was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH from here on out (I’ll provide links at the end)) officially on Monday. The way his blood work drops it is assumed he will need a transfusion every other week until a bone marrow match is found. His case isn’t the extreme, but it isn’t good either. They generally only talk bone marrow transplants (BMT from here on out) when you develop and can’t get out of aplastic anemia, which is what he is currently in and showing no signs of his body recovering from it. 


Friday they are going to test my youngest son for a possible bone marrow match, even though they are siblings there is only a 30% chance he is a match. They would have to be identical twins for that match to be any higher. If my youngest isn’t a match he will be placed on the registry until one is found and he will go on immune suppressant drugs (basically it is his immune system causing this) and weekly checks to make sure he doesn’t need another transfusion. We are worried of course, but we also know in this state he is in the best hands possible over at Providence so a lot of that worry is abated by that fact. We have ever hope that this BMT will cure the PNH and this will be a blip on his radar not something that will follow him through life. 


As we get more information about his particular case I will update more, and start a blog of sorts I think. But first I need to roll up my sleeves and call my insurance and start making sure they are covering all of this, regardless of their answer we are still going ahead full steam. My son’s health is more important than some jackass in a suit and tie that probably thinks his cold he is suffering from will kill him. 


One thing I would like you all to think about though, and pass on to your friends and family, while I am sure the lot of you donate blood every chance you can, have you thought about being a bone marrow donor? I have such a diverse group on my face book I would like you all to give it a thought, not for just fo my son but for many unnamed people out there that don’t have family that is a match (again, links will be provided on how to be a Blood/Platelet/Bone Marrow donor). I think it is something everyone one should do, it has been years since I’ve thought about donating more than blood, and once upon a time I was also on the marrow list. I think it is time I got back on it and update all my information. 
Links:
http://pnhsource.com/
http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria
http://www.hopkinsmedicine.org/kimmel_cancer_center/types_cancer/paroxysmal_nocturnal_hemoglobinuria_PNH.html
http://bethematch.org/
http://www.redcrossblood.org/donating-blood/types-donations/platelet-donation
 

by on Jan. 8, 2014 at 8:28 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-10):
Pixers
by Gold Member on Jan. 8, 2014 at 8:32 PM

BUMP!

Pixers
by Gold Member on Jan. 8, 2014 at 8:34 PM

BUMP!

SexyBurlapSack
by on Jan. 8, 2014 at 8:36 PM

I'm so sorry. Where do you live? 

Pixers
by Gold Member on Jan. 8, 2014 at 8:37 PM

Alaska right now

Quoting SexyBurlapSack:

I'm so sorry. Where do you live? 


Pixers
by Gold Member on Jan. 8, 2014 at 8:40 PM

BUMP!

Pixers
by Gold Member on Jan. 8, 2014 at 8:42 PM

BUMP!

proudmommy690
by Ruby Member on Jan. 8, 2014 at 8:46 PM
I'm sorry this is happening. Good luck to your family and I hope a donor comes about very soon.
kidkrazyinAK
by Bronze Member on Jan. 8, 2014 at 8:54 PM

I am in Alaska, and I am sure he is getting the best treatment at Providence. I have experience with both the childrens hospital and the cancer care there...they are AWESOME!!!

Good luck, I hope you find a donor soon.

SexyBurlapSack
by on Jan. 8, 2014 at 8:57 PM

Damn, I'm nowhere near you. I'm on the Be The Match registry.

My prayers go out to your son. 

Quoting Pixers:

Alaska right now

Quoting SexyBurlapSack:

I'm so sorry. Where do you live? 



Lennox28
by Bronze Member on Jan. 8, 2014 at 8:59 PM
I'm sorry. I'm on the bone marrow registry. I hope your son finds a match quickly!
Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)