It only occurred to me about an hour ago that, even with 5 siblings being tested, it's possible that no one will match. I hadn't considered that thought before, and I've decided not to consider it right now either. We should know today, or possibly tomorrow, if Scott or any of their other brothers or sisters can donate their marrow, and I'm choosing just to believe that one of them will.
The waiting and anticipation is so hard, I can't imagine what Randy and his wife must be feeling right now. Please God let this be one of those times that the Doctors have the results when they said they would, and NOT make them wait any longer. And please please, let someone be a perfect match!
Hey E, a thought just occurred to me... what about cord blood? Isn't that used to treat diseases like Luekemia? Aren't you just about ready to pop? It's a shot in the dark, but I know that even if you can't use your own cord blood, there are cord blood banks out there.
ReplyDeleteWishing your family the best of luck, and lots of strenght.
http://www.wndu.com/news/mommo/122004/mommo_39206.php
ReplyDeleteI've done a little bit of preliminary research on this since we found out about the transplant. I'm not sure how it all works, to be honest, or whether there's much chance that the baby's cord blood would match. I'm going to have them ask their Dr, mostly because all the information I've found is either so vague it's useless, or so intensely full of medical terminology that I have no idea what it means.
ReplyDeleteTrust me, if there's any chance of a match, it's his! But for now, we're hoping for good news from the siblings, since the one thing I HAVE found out is that cord blood is OUTRAGEOUSLY expensive to harvest and store. Something like $2000, plus the ob/gyn fee, plus a storage fee. . .
Amazing how much these damn doctors will charge anymore to save a life.
Yeah, it's disgusting, the fees for any sort of medical treatment. You'd think that they'd be interested in saving lives since, if all the patients die, then there's no one left to treat.
ReplyDeleteI know the cord blood is expensive, but I can't imagine that a bone marrow transplant is much less. I know that if I had chosen to have Jonas's blood stored it would have come to something like $200 or $300 a year, plus the collection fee. I don't remember there being any other fees associated. I mean, otherwise, it's just treated as medical waste. And you can donate it to a bank for free. If you donate it it goes to whoever needs it, and is not saved for your family/child, but it's free, and if enough people start doing it, you'd have to imagine that there would be a match available for just about anyone. Cord blood doesn't have to be as perfect a match as bone marrow.
Believe me, with lots of siblins, he's got a better chance than anyone of finding a match, but I'm ever the pessimist, or maybe just the realist, or the nervous ninny. Either way, I like to explore all of my options. Maybe even if you can't afford to donate your cord blood, there's a match somewhere out there in the bank.
Hugs.
yeah, (for personal/family use) private collection fee is around $2k, the storage fee is $150-$250 a year, plus the ob/gyn charges to 'harvest' the cord/blood, which is something like $150 - all of which is free if you're donating to a bank.
ReplyDeleteWith it being free to donate, I can't imagine why everyone doesn't donate it, but then I'm a firm believer in organ donation too, and tried to donate Alexis' organs (they weren't viable, but I tried) and don't really understand why anyone wouldn't do that either.
Anyway, I haven't approached her about the cord blood yet because I didn't want to remind her that we may not find a match in the siblings' blood tests. But if there isn't one. I'll talk to her about it tonight.
I just wish they'd call and tell us what's up with the results.
Erin,
ReplyDeleteNow is the time to practice positive thinking. Write yourself some cues and review them several times during the day. One such cue is: WE WILL FIND A MATCH!
Definitely follow up on that cord blood lead. We didn't do it with Bella because we didn't even know it existed in time to make arrangements, but the company we were quoted wasn't quite as high as you mention. It's a good thought, anyway. It's a morbid question, and I'm sorry, but--how much time would he have with no transplant?
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