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Post by bc2ca on Sept 15, 2015 0:07:46 GMT
I'm sure you are terrified right now. Sending best wishes for great treatment and a full recovery for Phoebe.
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RosieKat
Drama Llama
PeaJect #12
Posts: 5,377
Jun 25, 2014 19:28:04 GMT
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Post by RosieKat on Sept 15, 2015 0:08:02 GMT
I'm sure you're beyond scared and confused and ready to fight once you have a direction...prayers for Phoebe, of course, but prayers for you and all your family, for her medical caregivers, and for everyone who crosses her path. You never know where answers may come from. (((hugs)))
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Post by pattipea on Sept 15, 2015 0:08:36 GMT
When the future seems overwhelming, remember that it comes just one moment at a time.
I am so sorry to read your post. Phoebe, and all affected by her diagnosis, are in my thoughts and prayers.
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scrappinmama
Pearl Clutcher
Posts: 4,864
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Sept 15, 2015 0:11:04 GMT
Praying for you all!
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Post by lostwithout2peas on Sept 15, 2015 0:12:09 GMT
Oh no, I am so very sorry your little sweetheart is going thru this. It's a nightmare. I will be praying for Phoebe and your family.
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Post by jemali on Sept 15, 2015 0:13:22 GMT
Oh my goodness, that had to be the hardest thing in the world for you to hear. Praying for Phoebe and the rest of your film. ((Hugs))
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Post by elaine on Sept 15, 2015 0:14:07 GMT
I'm so sorry! Prayers and positive thoughts for Phoebe and your family.
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blue tulip
Pearl Clutcher
Posts: 2,984
Jun 25, 2014 20:53:57 GMT
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Post by blue tulip on Sept 15, 2015 0:18:06 GMT
oh wow, i'm so sorry! prayers said for you guys!
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Post by lindah on Sept 15, 2015 0:19:44 GMT
I'm so sorry you and your daughter are having to go through this. My thoughts and prayers are with your family while you fight this.
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Post by Minnesota*Mom on Sept 15, 2015 0:19:33 GMT
So sorry to hear the news about Pheobe. Sending healing thoughts your way .
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Deleted
Posts: 0
May 2, 2024 12:21:38 GMT
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Post by Deleted on Sept 15, 2015 0:20:40 GMT
I can't imagine the agony you are experiencing right now {{{{ hugs }}}}}
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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 Sept 15, 2015 0:20:47 GMT
I'm so sorry you got such awful news. Prayers for Phoebe and the medical team caring for her.
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freebird
Drama Llama
'cause I'm free as a bird now
Posts: 6,927
Jun 25, 2014 20:06:48 GMT
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Post by freebird on Sept 15, 2015 0:22:00 GMT
I'm so sorry. I am saying a prayer for her again.
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Post by shescrafty on Sept 15, 2015 0:23:03 GMT
I'm sorry you did not receive the good news we all hoped for. I work with a good number of kids with histiocytosis--both HLH and LCH. They generally do very well. It is Histiocytosis Awareness Month and histiocure.org is a great resource. I am very optimistic about your Phoebe. Sending healing thoughts. Everything seems so bleak right now. Thank you for a little positive note. I have been looking up hospitals and it seems like Cincinnati is the place to be. Do you know anything about advantages to that hospital? Thank you to all the peas for your support. It means a lot to me
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akathy
What's For Dinner?
Still peaing from Podunk!
Posts: 4,546
Location: North Dakota
Jun 25, 2014 22:56:55 GMT
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Post by akathy on Sept 15, 2015 0:25:30 GMT
My thoughts and prayers are with Phoebe and all of you that love her.
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caro
Drama Llama
Refupea 1130
Posts: 5,222
Jun 26, 2014 14:10:36 GMT
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Post by caro on Sept 15, 2015 0:26:35 GMT
I am numb right now and cannot talk to my family yet. We just got done speaking with doctors and she has something called HLH. I do not even know what it means right now. She either has a 60-70% rate of survival or 30-40% depending on what type she has (genetic or acquired) and that will take 4 weeks to determine. We are so terrified for her. I am so scared my baby is going to die. None of her path to diagnosis has been easy and I am afraid that her treatment will go the same way. I just can't lose my baby-I just want her well and happy again. Please pray that she responds well to treatment and can make it through this. I know we are in the hospital for at least a month. She needs to fight this with all she has. I am just so scared. I am so very sorry. I will to ask God for healing.
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melissa
Pearl Clutcher
Posts: 3,912
Jun 25, 2014 20:45:00 GMT
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Post by melissa on Sept 15, 2015 0:27:32 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.
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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 Sept 15, 2015 0:28:57 GMT
I am so, so sorry to hear this. My heart goes out to you and to your sweet Phoebe. Sending many prayers and positive thoughts your way that all will be well. Hugs.
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purplebee
Drama Llama
Posts: 6,726
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Sept 15, 2015 0:29:08 GMT
Prayers and more prayers for Phoebe....keeping you in my thoughts and prayers for a positive outcome. Hugs.....
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melissa
Pearl Clutcher
Posts: 3,912
Jun 25, 2014 20:45:00 GMT
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Post by melissa on Sept 15, 2015 0:32:16 GMT
Blog entry from parent of 2 children with HLHHLH organization They have a Facebook group as well. Between these two resources, you will be able to determine where Phoebe really needs to be to have the best odds. Please let me know if you need assistance with this. I am a great Google searcher and have the medical background to understand it. What's odd is I have read these stories before which means I have looked this up for someone in the past. I wish I could remember who and why
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Post by hockeyfan06 on Sept 15, 2015 0:33:14 GMT
Sending hugs and prayers!
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Post by mirabelleswalker on Sept 15, 2015 0:35:19 GMT
Ken McClain at Texas Children's is the go-to guy for histiocytosis. That is who our doctors consult with. By reputation he is very accessible. I would try contacting him and ask where the best care in your area would be.
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Post by bdhudak on Sept 15, 2015 0:36:12 GMT
Prayers for your family and medical team as you go forward
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Post by shescrafty on Sept 15, 2015 0:38:41 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.
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Post by shamrock on Sept 15, 2015 0:39:16 GMT
Prayers for your sweetie, your family and the medical team working with you.
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Post by seikashaven on Sept 15, 2015 0:40:01 GMT
Prayers for sweet Pheobe and your whole family. May you have peace and strength for the days ahead.
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Post by FrozenPea on Sept 15, 2015 0:40:57 GMT
We will keep Phoebe in our prayers.
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Post by brina on Sept 15, 2015 0:41:38 GMT
My gosh, I cannot imagine - I know I would be terrified. I am praying for your family.
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Post by cadoodlebug on Sept 15, 2015 0:41:57 GMT
I am so sorry. Sending prayers and hugs.
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Post by bothmykidsrbrats on Sept 15, 2015 0:43:54 GMT
I can only imagine how terrified you must be. {{{HUGS}}} You are all in my prayers.
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