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Post by maryland on Oct 12, 2015 2:45:27 GMT
Are your friends looking at universities in the area? University of Maryland may have a good number of Asian students. I wasn't sure if this was done at universities.
I hope you area able to find a match for your daughter. You are in my prayers!
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Post by DinCA on Oct 12, 2015 3:08:15 GMT
shescrafty I know virtually nothing about the ins and outs of finding a bone marrow match but I wonder if a Facebook page for Phoebe would help. The flyer could be uploaded to the page and then we could all share it. Maybe if enough eyes see it, her chance of finding a match might increase. I don't think a lot of personal information would be necessary - just her story and information about the lack of Asian donors.
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Post by cindytred on Oct 12, 2015 3:22:06 GMT
Please send me the flyer too.
Cindy
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Post by marie on Oct 12, 2015 4:18:14 GMT
I participated in a bone marrow drive several years ago. The process was very easy to do.
Continued prayers for you and Phoebe.
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Post by LavenderLayoutLady on Oct 12, 2015 9:04:14 GMT
Continued (((hugs))) and good thoughts.
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Deleted
Posts: 0
May 17, 2024 2:52:50 GMT
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Post by Deleted on Oct 12, 2015 10:00:57 GMT
I'm so very sorry. I think of you a lot. I'm on the registry, but in Europe... and caucasian. But, a tiny chance is still a chance, right? Wishing you lots of strength.
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Post by ktdoesntscrap on Oct 12, 2015 10:50:02 GMT
Thinking of you and sweet Phoebe. I would share a flyer or a Facebook page too.
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Post by monklady123 on Oct 12, 2015 11:32:00 GMT
The Facebook page is a great idea because then we'd be able to share it far and wide. But also, I'd like the flyer. I'm in Northern Virginia like someone else is (Elaine, I think was the one who replied), but in a different county. We have a large Vietnamese population here, although I don't know if "Asian" is the key or if you actually want Korean. I could also share one at my seminary, which has a good number of Korean students.
I'll pm you.
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Post by shescrafty on Oct 12, 2015 16:23:21 GMT
We are working on a Facebook page now. Will share she it is done. Thank you peas!
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Post by shescrafty on Oct 12, 2015 18:41:32 GMT
www.facebook.com/fightforphoebeHere is the page so far. Thank you for all of your support. Please feel free to cope and SHARE our page on Facebook or anywhere else you think could help. The more people we reach who can become donors, the more Phoebe and others like her have a chance at survival!
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The Birdhouse Lady
Drama Llama
Moose. It's what's for dinner.
Posts: 7,174
Location: Alaska -The Last Frontier
Jun 30, 2014 17:15:19 GMT
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Post by The Birdhouse Lady on Oct 12, 2015 19:30:12 GMT
Still thinking and praying for Phoebe and your family everyday.
I don't have facebook but, I will have my sister post it on hers.
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Post by krcrafts on Oct 12, 2015 22:42:32 GMT
I shared it on my page and several of my friends have already shared it. Hoping a match is found soon!!
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Post by laurasw on Oct 12, 2015 23:02:39 GMT
I'm already on the registry but I just inquired about doing a drive. I'm so sorry for what sweet Phoebe and you guys are going through. You're in my prayers!
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Deleted
Posts: 0
May 17, 2024 2:52:50 GMT
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Post by Deleted on Oct 12, 2015 23:04:56 GMT
I have shared on my facebook page. I asked my friends to pass it along to as many people as possible so we have a better chance to find Phoebe a match.
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Post by KikiPea on Oct 12, 2015 23:06:12 GMT
Shared!
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Post by shescrafty on Oct 12, 2015 23:14:30 GMT
I'm already on the registry but I just inquired about doing a drive. I'm so sorry for what sweet Phoebe and you guys are going through. You're in my prayers! Wow thank you so much. Even if it does not help phoebe I hope it can help others like her
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Post by CarolT on Oct 19, 2015 3:09:14 GMT
Thinking of Phoebe and wondering how you are all doing.
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Post by SweetieBugs on Oct 19, 2015 19:47:17 GMT
I've been thinking of you and Phoebe as well and hoping there is some better news.
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River
Pearl Clutcher
Posts: 3,514
Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Oct 19, 2015 19:54:49 GMT
Still praying for you and sweet Phoebe! I hope the bone marrow drives are going well and results in a match for her.
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Post by Karmady on Oct 19, 2015 20:07:44 GMT
My thoughts continue to be with you and your family. I saw the FB page and Phoebe is such a pretty little girl.
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Post by shescrafty on Oct 19, 2015 20:21:08 GMT
Thank you all for checking in. Last week we got bad news-the levels we were seeing decrease all started increasing rapidly and then her spinal fluid showed active HLH cells-something we had not seen before. That means the HLH is active even with high dose steroids and chemotherapy.
We had another lumbar puncture today and the pressure was 37-which is high. Last week it was 36 and our doctor moved us to the PICU for 3 days so I am hoping we can stay here and not have to go back down.
If we see more active HLH cells in this week's tap we have to change treatment courses. As our doctor said we don't have a lot of options and time is not on our side.
I wish I had better news, but I don't. I wake up each day with a feeling of dread wondering what bad news I will get that day. Our social worker has been amazing, but no matter what I don't think I cam shake the bad feelings I have right now. I just want my girl to get better.
Thank you to so many of you for sharing our Facebook team. It is appreciated.
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wellway
Prolific Pea
Posts: 8,768
Jun 25, 2014 20:50:09 GMT
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Post by wellway on Oct 19, 2015 20:27:29 GMT
I'm so sorry that the news is not better. Sending you a ton of hugs and postive thoughts.
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,763
Jun 25, 2014 23:21:30 GMT
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Post by scrapngranny on Oct 19, 2015 20:28:23 GMT
Continued prayers for Phoebe.
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Post by grammy2emmasophia on Oct 19, 2015 21:11:57 GMT
Your little Phoebe and all who love her are in my thoughts.
Kathy
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scrappinmama
Pearl Clutcher
Posts: 4,880
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Oct 19, 2015 21:47:44 GMT
I'm so Rory to hear that she hasn't improved with the current course of treatment. Continued prayers for your dad.
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Sue
Pearl Clutcher
Posts: 3,234
Location: SE of Portland, Oregon
Jun 26, 2014 18:42:33 GMT
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Post by Sue on Oct 19, 2015 22:08:13 GMT
Praying for Phoebe.
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Post by scrapmaven on Oct 19, 2015 22:13:27 GMT
Thank you for letting us know about your sweet Phoebe. Prayers for all of you.
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Deleted
Posts: 0
May 17, 2024 2:52:50 GMT
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Post by Deleted on Oct 19, 2015 22:18:10 GMT
Britta, I am sorry this aren't looking better right now. I will continue to pray the Dr.'s are aggressive and continue different ways to attack the HLH cells. Phoebe said herself she is a winner! Please also take care of yourself, make sure you get some rest. Hugs.
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Post by littlemama on Oct 19, 2015 22:39:49 GMT
Continued prayers for Phoebe and all of those who love her.
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valleyview
Pearl Clutcher
Posts: 2,816
Jun 27, 2014 18:41:26 GMT
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Post by valleyview on Oct 20, 2015 0:10:47 GMT
I'm so sorry to see this update, but I felt like things might not be going well because you've not updated.
Still praying for Phoebe and hoping for a turn around. Hugs.
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