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5 year old niece with DIPG/DMG Brain Tumor
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Anonymous
| Does anyone have experience with this? The doctor's/hospitals here are in the area have given her 0% chance of survival. The radiation is not working, chemo does not work, and surgery is just not an option. St. Jude will not accept her nor will Sloan Memorial Kettering in NY. She can't walk or speak very well at the moment - 8 months past diagnosis currently. We are happy that she's still eating and drinking. I'm just trying to see if anyone has experience with a case similar to this? Thank you! |
Anonymous
| No experience, but just wanted to say that I’m so so sorry. |
Anonymous
| There is a local mom whose son died of DIPG a number of years ago. She has a foundation now and has been a big support to other local DIPG families. I would reach out to her. Jenny Mosier is he name. I think foundation is Michael Mosier-Chad Tough Foundation. https://www.chadtough.org/michael/ |
Anonymous
| This is so horrifyingly sad OP. I am so sorry for your family. |
Anonymous
| I’m so sorry for your family. |
Anonymous
+1 to this resource. I am keeping your niece in my thoughts. Stay hopeful and follow your sibling's cues as you support them through this disease and the aftermath. |
Anonymous
| I’m so sorry. My understanding is this is terminal. Sending peace and courage. |
Anonymous
|
I'm so sorry, it's a terrible diagnosis. At this point there aren't effective treatments for it. There are some stories here about kids with DIPG:
https://www.alexslemonade.org/childhood-cancer/type/dipg/heroes |
Anonymous
|
OP: We appreciate everyone's kind words. Thank you!
The parent's at this point are raising money for treatments that will be paid out of pocket (not the traditional medicine route). They just want to feel they are doing something to help their daughter. Thanks for the great advice on reaching out to Jenny Mosier. It's possible she may have guidance on a local doctor/hospital that can help or maybe provide a 2nd opinion. We understand the chances are slim but we don't want to sit around doing nothing. Thank you again! |
Anonymous
| I am so sorry, OP. |
Anonymous
She is a friend of a friend, and we have been donating to this charity for many years. DIPG is one of the cruelest diagnoses a child can receive. |
Anonymous
| I am so sorry OP |
Anonymous
| I'm sorry OP, there is no cure and just comfort. |
Anonymous
+2 Jenny Mosier is wonderful, and will have all the latest information. |
Anonymous
See the support page here: https://www.chadtough.org/my-dipg-navigator/ |