yellerpup
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Mon May-09-11 08:38 AM
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To all of you who have been keeping Eliza Mae |
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in your highest thoughts, thank you! Here is an update from her mommy's blog from last Friday: "can i tell you how awesome eliza mae did today? might be a little TMI for some of you, but we normally have to restrain her a little when they access her port. she knows it’s coming and she fights it a little. we hold her hands down and get it done. after she’s accessed, she’s not happy but she’s okay and distracted. today, she told us that she didn’t want to ‘hold hands with us.’ she wanted to sit on the table, hold her own hands and be brave. she basically did this today and she basically broke my heart, simultaneously. i am always in awe of her strength, but i still expect her to act like a 2 year old. today, she acted like a child who had been through so much and wanted to prove something. it made erik and i proud but broke our hearts. broke ‘em!"
I can't tell you how much we appreciate your support. :grouphug:
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BlueIris
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Mon May-09-11 01:29 PM
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1. Sounds like I missed this one. Here's to Eliza Mae. nt |
yellerpup
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Mon May-09-11 01:54 PM
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Kind of Blue
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Sun May-15-11 01:46 PM
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3. Continued light and many blessings |
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to Eliza Mae, that her health continues to rival her feisty spirit and WIN when it comes to what she will and will not accept. What a champ! :hug: :hug: :hug:
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yellerpup
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Mon May-16-11 08:22 AM
Response to Reply #3 |
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From my niece's blog:
we got the news we pleaded for: NOT ONLY NO TUMOR GROWTH- DISAPPEARANCE! eek! the tumors were pretty much undetectable with this MRI and we couldn’t be more elated. we were hoping for chemotherapy to move to an every 3 week schedule and this is what we were led to believe, but the plans changed. AGAIN. like i said in a previous post, we are following dr. mcclain’s protocol {the LCH IV protocol}. i didn’t read the nitty gritty because i gave a copy of the pdf to our oncologist. well, i guess he didn’t read the nitty gritty until today because he let us know that the new protocol for CNS risk LCH patients is 12 weeks of chemotherapy every week and then we go to chemotherapy every 3 weeks. so if you are keeping track: we have 5 more weeks of chemotherapy every friday. we were a little bummed to hear this news today, but it is what it is and we have to continue. IT’S WORKING!!
Thanks so much for your support! :hug:
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Mnemosyne
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Mon May-16-11 08:46 AM
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7. Sometimes the news is good! |
yellerpup
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Mon May-16-11 08:49 AM
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8. This is the first good news! |
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We are excited but we know it's still going to be a long haul for her. Thanks for your good thoughts! :hug:
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Mnemosyne
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Mon May-16-11 10:36 AM
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9. I will keep you there, yellerpup, every little bit helps. |
yellerpup
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Mon May-16-11 11:38 AM
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11. Thank you for remembering. |
Mnemosyne
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Mon May-16-11 06:18 PM
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13. I hate it when kids suffer and understand how helpless one feels when their child is so ill. |
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Edited on Mon May-16-11 06:18 PM by Mnemosyne
They thought my daughter had leukemia, then toxoplasmosis, it went on and on for a year. They finally did biopsies and her swollen lymph nodes were benign, but the waiting almost drove me mad. It ended up being Epstein-Barr and Chronic Fatigue Syndrome, before it was considered an actual illness. We were so fortunate.
I'll be here. :loveya::hug:
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yellerpup
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Mon May-16-11 07:47 PM
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14. Eliza is lucky to have two wonderful parents |
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as your daughter was lucky to have you. I know it didn't feel anything like lucky at the time, but I am so happy that your daughter is well and happy now. I'm lucky to meet some really terrific people on this board. :hug: :grouphug:
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Kind of Blue
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Mon May-16-11 11:36 AM
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10. I've got serious angel-bumps. |
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Wonderful. Wonderful news, Yellerpup! "IT'S WORKING" - that will be my mantra for Eliza Mae. Thanks so much for this update. It's made my hectic morning really calm :hug: :hug: :hug:
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yellerpup
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Mon May-16-11 11:41 AM
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12. It's working is a good mantra! |
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I know I've been saying it over and over since I first read it in Erin's blog. Your sweet response has boosted my morning, too! :loveya:
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Flying Dream Blues
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Sun May-15-11 05:54 PM
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4. I think I missed this, too...but please |
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let me jump in with love and blessings to Eliza Mae, and am sending loving light for healing and strength. Bless her and her family; watching your child so ill must be a terrible hell to endure. I hope she is well soon!
:grouphug:
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yellerpup
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Mon May-16-11 08:28 AM
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6. Thank you, thank you, thank you! |
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Having a child so ill truly is hell. My niece wrote in a previous post that they usually have to 'hold her hands' while the nurse accesses her port. Last week, she told her mom and dad that she would hold her own hands and she did. Amazing courage from such a little peanut. Your support is much appreciated. :hug:
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Tue May 07th 2024, 02:36 AM
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