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Post by femalebusiness on Sept 15, 2015 0:44:03 GMT
You must be terrified. I hope all the prayers and good thoughts from everyone will have a positive affect for your sweet Phoebe.
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Post by ~KellyAnn~ on Sept 15, 2015 0:44:24 GMT
I'm so sorry. Will keep Phoebe, your family and her medical team in my thoughts and prayers.
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Post by bearmom on Sept 15, 2015 0:47:06 GMT
Prayers for you and your family. I can't imagine your fears.
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Judy26
Pearl Clutcher
MOTFY Bitchy Nursemaid
Posts: 2,834 
Location: NW PA
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Post by Judy26 on Sept 15, 2015 0:47:41 GMT
Prayers and healing thoughts to you and your sweet daughter. And prayers to the wonderful doctors who will help your daughter beat this disease.
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chendra
Pearl Clutcher
Posts: 2,860
Location: The 33rd State
Jun 27, 2014 16:58:50 GMT
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Post by chendra on Sept 15, 2015 0:47:40 GMT
I'm so sorry. I wish you both strength as you navigate through this unfamiliar territory. Lots of hugs to you and your family.
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Post by AussieMeg on Sept 15, 2015 0:48:06 GMT
I'm sorry that Phoebe is going through this, and the rest of your family of course. I hope that she responds well to treatment. Thank you Melissa for your insight once again.
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Post by scrapnatya on Sept 15, 2015 0:48:53 GMT
Sending continued prayers for healing and strength.
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Post by jesq on Sept 15, 2015 0:49:04 GMT
I'm so sorry. Wishing all the best for Phoebe. Making sure she is in the right place to get the treatment she needs is so important and is probably the best thing you can do for her right now.
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Post by Woobster on Sept 15, 2015 0:50:17 GMT
I feel like whatever I say will be completely inadequate, but please know that my thoughts are with you, Phoebe, and the rest of your family. I hop you have more information very soon.
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Post by gritzi on Sept 15, 2015 0:50:17 GMT
Praying for all of you & that your dear Phoebe will be much better soon.
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Post by littlemama on Sept 15, 2015 0:50:41 GMT
THIS! It doesn't have to be Cincinnati, but she must be at a children's hospital that has sufficient experience with this illness. It is, as you know, quite rare, but survival rates are higher than you have been told in the right hands. While you may feel very comfortable with and trust the wonderful folks taking care of your dd at the moment, it does not mean this is the right facility. I have no idea where you actually are, but this is something that needs to be looked into ASAP to be sure she gets the top of the line treatment. I know you do not have all the results in yet as the genetic testing will take some time, depending on when it was sent, and that may buy you a little time to learn what the best place is for your dd... and it may very well be where she is now, but you need to confirm that. Hugs to you and yours as you begin this difficult journey! For those that don't know, HLH is not cancer. It is essentially over activity of part of the immune system. However, it is treated in the same way as some cancers. We are at children's hospital in DC. They said they have treated children with HLH but tomorrow we are asking if we need to look at moving her. So many things in the air right now. Just because they have treated children with histiocytosis doesn't mean they are the best place, and it doesn't mean that they will recommend moving her. Definitely do some research to find the top doctors for this condition so you are well informed. This is not the diagnosis anyone was hoping for, continued prayers for your baby. |
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Post by monklady123 on Sept 15, 2015 0:54:36 GMT
Oh no! I'm so sorry to hear this update. I know you were hoping for something "better", as were we all.
Prayers for her and you as you begin this journey through the children's medical world. One that no one ever expects, and one that no one can believe they are actually in. Do know that once you decide where you'll be going there will be SO many people waiting there to help you. In any children's facility there are counselors and social workers and volunteers and Child Life specialists and meals brought in by various organizations and places to stay for the family, etc. I'm sure you've experience some of that in DC.
Prayers and more prayers.
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Post by leannec on Sept 15, 2015 0:58:48 GMT
I'm so sorry ... hugs to you!!
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Post by SallyPA on Sept 15, 2015 0:58:51 GMT
Oh no! I am so so sorry. Hugs and prayers!
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Post by mymindseyedpea on Sept 15, 2015 1:01:06 GMT
I'm sorry you are having to deal with this.
If you are open to it I will send her some healing and look into the emotional side of her symptoms.
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msliz
Drama Llama
The Procrastinator
Posts: 6,419
Jun 26, 2014 21:32:34 GMT
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Post by msliz on Sept 15, 2015 1:02:48 GMT
More hugs and more prayers!
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Post by txdancermom on Sept 15, 2015 1:03:41 GMT
prayers and hugs
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Deleted
Posts: 0
May 1, 2024 23:14:28 GMT
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Post by Deleted on Sept 15, 2015 1:05:55 GMT
I'm so sorry to hear this news! Hugs for you and Phoebe.
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Post by scraphappy0501 on Sept 15, 2015 1:10:03 GMT
Oh no! I know we were all hoping for better news! I will continue to keep Phoebe and your family in my prayers and also for all of Phoebe's medical team to be guided in the right direction. |
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Post by pierkiss on Sept 15, 2015 1:11:59 GMT
I am so sorry to read this update. Many hugs and many prayers for you, your daughter, and the rest of your family.
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Jili
Pearl Clutcher
SLPea
Posts: 4,363
Jun 26, 2014 1:26:48 GMT
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Post by Jili on Sept 15, 2015 1:13:44 GMT
My friend's dd has been fighting a rare form of leukemia for about a year and a half now. She had a bone marrow transplant just over a year ago and is doing pretty well. This was done at Seattle Children's Hospital (we're in the Chicago area). Her mom speaks highly of the care she received there.
My cousin's son w/histiocytosis was treated at Cleveland Clinic (they live in Cleveland and I have no idea if they considered other locations, but I thought I'd put it out there).
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scorpeao
Pearl Clutcher
Posts: 4,521
Location: NorCal USA
Jun 25, 2014 21:04:54 GMT
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Post by scorpeao on Sept 15, 2015 1:15:08 GMT
I'm so very sorry.
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Post by SabrinaM on Sept 15, 2015 1:16:31 GMT
I'm so sorry... Praying for Phoebe. I hate that you're going through this.
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Post by anonrefugee on Sept 15, 2015 1:16:56 GMT
Oh no, praying hard for your family and Phoebe !
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Mystie
Pearl Clutcher
Posts: 4,299
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Post by Mystie on Sept 15, 2015 1:16:55 GMT
I will continue to pray for Phoebe and for you and your family. Hugs, hugs, hugs.
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Post by cindyupnorth on Sept 15, 2015 1:17:39 GMT
Thoughts and prayers to dear Phoebe, your family, and all her caregivers and Dr's.
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Deleted
Posts: 0
May 1, 2024 23:14:28 GMT
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Post by Deleted on Sept 15, 2015 1:18:46 GMT
Hugs and prayers for sweet Phoebe and the whole family.
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gramma
Pearl Clutcher
Posts: 2,896
Location: Sacramento, Ca
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Post by gramma on Sept 15, 2015 1:19:21 GMT
Well darn -that's not what a mom wants to hear. Keeping you and her in my thoughts.
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Post by iamkristinl16 on Sept 15, 2015 1:19:41 GMT
I'm so sorry you didn't get better news. That must be so scary. Sending hugs your way.
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Post by angiet on Sept 15, 2015 1:20:06 GMT
I am so sorry. Prayers for Phoebe and your family.
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