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Post by supersoda on Sept 15, 2015 2:42:23 GMT
I am so, so sorry.
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Post by holly on Sept 15, 2015 2:47:11 GMT
I'm so sorry to hear this about your sweet Phoebe. Many prayers going up tonight.
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Post by anniefb on Sept 15, 2015 2:47:01 GMT
So so sorry to read your update. Sending hugs and praying for you and Phoebe.
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happymomma
Pearl Clutcher
Posts: 4,078
Aug 6, 2014 23:57:56 GMT
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Post by happymomma on Sept 15, 2015 2:51:22 GMT
You, sweet Phoebe and your family are in my prayers. I will be praying hard for you all and for her medical team, for the wisdom they need to help your baby. Sending you big momma hugs. I have been in a similar scary situation and I can identify with at least some of what you are feeling. Please, please continue to lean on the Peas for support. I can't even begin to tell you how much that will help you get through the uncertain days ahead. Again, hugs and prayers.
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Post by Karmady on Sept 15, 2015 2:51:37 GMT
My thoughts are with you and your sweet girl. Sending healthy, healing vibes with hopes that Phoebe responds really well to treatment.
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Post by monicad on Sept 15, 2015 2:51:46 GMT
Praying for Phoebe and sending lots of love your way.
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Post by mom on Sept 15, 2015 2:53:03 GMT
oh Mama. My heart is breaking for you and your family. Do not lose hope! We will be praying for your daughter, strength for all of you and her doctors. If you get a chance, message your address to me. I would love to bless your daughter with happy mail and things to keep her busy while she is hospital bound!
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Post by jemmls4 on Sept 15, 2015 2:55:17 GMT
My prayers for Phoebe. My friend and co-worker has made the journey through HLH with both her boys. Her oldest had a bone marrow transplant and I am happy to say is a year out and now a freshman in college. Her daughter is a carrier and her youngest son received a bone marrow transplant a year ago. Sadly, he passed away a few weeks ago from a severe case of graft vs. host disease. I don't wish to bring you down and I know you are overwhelmed. However, you might want to look at the blog created by my friend's family through COTA (children's organ transplant association). They are a wonderful non-profit that helps families raise money for extra costs. Also, my friend and her family have recounted treatments, issues they encountered, and where they sought treatment. Perhaps you can glean some information that can help you help Phoebe. COTA for team SpencerOn on an even more personal note, I can tell you that you are your daughter's best resource and advocate. I was close to Phoebe's age when I faced an illness that no one could diagnose. My mom did not give up and took me all over, sent my records to anyone who'd look at them until she found someone that could diagnose me and not just dismiss my illness. Because of her tenacity and refusal to be brushed off as an overly concerned mother, she saved my life. So let yourself grieve, cry, scream whatever it takes to get it out and then fight for Phoebe.
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huskergal
Pearl Clutcher
Posts: 2,986
Jun 25, 2014 20:22:13 GMT
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Post by huskergal on Sept 15, 2015 2:58:49 GMT
So very sorry, Prayers being sent.
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Post by penguin on Sept 15, 2015 3:03:27 GMT
Praying for you and your sweet Phoebe.
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julieb
Pearl Clutcher
Posts: 2,845
Jul 3, 2014 16:02:54 GMT
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Post by julieb on Sept 15, 2015 3:04:57 GMT
Lots of prayers and positive thoughts for your Phoebe.
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Post by worrywart on Sept 15, 2015 3:08:13 GMT
Praying for strength and healing for your dd as she undergoes treatment.
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MaryMary
Pearl Clutcher
Lazy
Posts: 2,975
Jun 25, 2014 21:56:13 GMT
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Post by MaryMary on Sept 15, 2015 3:33:21 GMT
I'm so sorry. Prayers.
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luckyexwife
Pearl Clutcher
Posts: 3,067
Jun 25, 2014 21:21:08 GMT
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Post by luckyexwife on Sept 15, 2015 3:34:57 GMT
I'm so sorry. Prayers for you and your sweet Phoebe.
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Post by Memo on Sept 15, 2015 3:35:42 GMT
I'm so sorry for the diagnosis. I am sending hugs, prayers and love to Phoebe and the rest of your family.
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Rhondito
Pearl Clutcher
MississipPea
Posts: 4,661
Jun 25, 2014 19:33:19 GMT
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Post by Rhondito on Sept 15, 2015 3:36:10 GMT
I am praying with all my heart for your sweet girl.
Please reach out to us if there is anything we can do to help you.
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Post by ro on Sept 15, 2015 3:38:29 GMT
I am praying fiercely for dear Phoebe and your family. Hugs.
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Peamac
Pearl Clutcher
Refupea # 418
Posts: 4,218
Jun 26, 2014 0:09:18 GMT
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Post by Peamac on Sept 15, 2015 3:39:58 GMT
Oh dear! I'm so sorry for the awful news! Keeping you all in my prayers.
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~Lauren~
Pearl Clutcher
Posts: 3,876
Jun 26, 2014 3:33:18 GMT
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Post by ~Lauren~ on Sept 15, 2015 3:44:35 GMT
Hugs to you and your sweet little girl. Saying a prayer for a full recovery.
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Post by Legacy Girl on Sept 15, 2015 3:44:48 GMT
Asking God to carry you through this difficult time until Phoebe is restored to good health and these challenges are but a memory. <3
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Post by nurseypants on Sept 15, 2015 3:51:27 GMT
I'm so sorry to hear this news. You and your family are in my thoughts. Please trust her medical team and know they are working hard for her; together you will guide Phoebe through this storm.
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Post by chaosisapony on Sept 15, 2015 3:59:14 GMT
Hoping for an easy recovery for Phoebe. Hang in there, mama.
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scrappinghappy
Pearl Clutcher
“I’m late, I’m late for a very important date. No time to say “Hello.” Goodbye. I’m late...."
Posts: 4,306
Jun 26, 2014 19:30:06 GMT
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Post by scrappinghappy on Sept 15, 2015 4:01:12 GMT
Hugs! Will keep you and your family in my prayers for the strength you need to deal with this diagnosis and the fight ahead.
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Post by brynn on Sept 15, 2015 4:02:56 GMT
Your DD and your family are in my prayers.
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mochi
Full Member
Posts: 449
Jun 26, 2014 1:45:16 GMT
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Post by mochi on Sept 15, 2015 4:05:40 GMT
I'm so sorry to read this news. I will keep dear Phoebe and your family in my prayers. (((hugs)))
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tanya2
Pearl Clutcher
Refupea #1604
Posts: 4,422
Jun 27, 2014 2:27:09 GMT
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Post by tanya2 on Sept 15, 2015 4:11:08 GMT
I'm so sorry. Sending lots of good thoughts your way
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samantha25
Pearl Clutcher
Posts: 2,894
Jun 27, 2014 19:06:19 GMT
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Post by samantha25 on Sept 15, 2015 4:16:24 GMT
So sorry. Praying..... not fair..
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Post by kels99 on Sept 15, 2015 4:22:44 GMT
I am sorry! Lots of hugs to you all!!
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Post by penny on Sept 15, 2015 4:25:56 GMT
Sending you love...
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vanessa
Full Member
Posts: 142
Sept 15, 2015 4:25:10 GMT
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Post by vanessa on Sept 15, 2015 4:34:51 GMT
So this brought me out of lurkdom. My 16 year old son Jack was recently diagnosed with a similar autoimmune disorder. His immune system is, essentially, trying to kill him. We were stationed on Okinawa Japan and they medically evacuated he and I after he lost 30 pounds and a cat scan showed advanced sinus disease (as in his sinuses look like he is a 60 year old man). His diagnosis is wegener's granulomatosis and he has involvement with his lungs, ears, throat, sinuses, and kidneys. We were evacuated to Hawaii where he received four rounds of chemo to kill his immune system and we are now in California where he is on a new immunosuporessive drug and tapering off of steroids. His diagnosis is extremely rare in children and by the time they usually get diagnosed they are already on the list for a kidney transplant. All of that being said... I have very recently been in your shoes (and still am, he had a kidney biopsy Thursday) and I would be happy to help or issue rate or just lend an ear to a fellow mom going through a pretty rough diagnosis. Prayers going up. Vanessa
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