Can you help me GLP?? DIPG diagnosis in 8 yr old daughter. | |
Spc__ User ID: 77416949 United States 03/12/2019 12:27 AM Report Abusive Post Report Copyright Violation | |
Anonymous Coward User ID: 77301361 United States 03/12/2019 12:30 AM Report Abusive Post Report Copyright Violation | |
Spc__ User ID: 77416949 United States 03/12/2019 12:32 AM Report Abusive Post Report Copyright Violation | Not sure if you have Facebook or have set up a page for her, but this page is amazing and may help connect you to more information about trials and things, and get the GoFundMe circulating. [link to m.facebook.com (secure)] "Rather than love, than money, than fame, give me truth." |
Anonymous Coward User ID: 10485453 United States 03/12/2019 12:37 AM Report Abusive Post Report Copyright Violation | |
nutmeg User ID: 76388104 United States 03/12/2019 12:39 AM Report Abusive Post Report Copyright Violation | [link to www.mayoclinic.org (secure)] Best: Rochester, Minnesota Mayo Clinic 200 First St. SW Rochester, MN 55905 General number 507-284-2511 |
Spc__ User ID: 77416949 United States 03/12/2019 12:42 AM Report Abusive Post Report Copyright Violation | Hello friends. I have been lurking here for ages, not much of a poster but due to circumstance I find myself in survival mode willing to try anything. I don't facebook or any of that, so really this is one of my only social outlets to try. Quoting: Serowin My 8 year old daughter Emma, has been diagnosed with Diffuse Intrinsic pontine glioma. Its a rare brain cancer which grows on the brain stem and it is inoperable. This struck her out of nowhere, we had recently been told by an optometrist and audiologist that her symptoms where due to hearing and vision loss, nothing to worry about. Glasses and hearing aids. Never trust free health care!! Emma has been in the hospital for 2 weeks and has begun her 33 radiation treatments, which is the only treatment available due to the tumors location. She was very close to dying, but has regained some of her motor skills, and is now eating soft foods. This in itself is miraculous!! I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it. I will also be preparing foods at home using honey, pineapple, carrot and other known super foods to give her every possible fighting chance. I have not given up hope despite the prognosis, how could I? There are several clinical trials coming up which she may qualify for as well, it truely seems alot of cancer cures may be on the horizon, if they can get past the corporate interests and all that. ONC201 and ONC206 look very promising for this H3 K27M cancer in particular. Im reaching out here on a gofundme, knowing how greedy I sound. Knowing I have seen this sort of thing before and ignored it, so please if you ignore it, do not feel bad, perhaps thats how karma works... If anyone reading this has any information, or leads, or knowledge which may help, anything please share. I will be monitoring this thread, but probably not for a day or so as I've been up for a very long time. Regardless of the outcome I want to thank you for reading our story. [link to www.gofundme.com (secure)] Really? GoFundMe? Really? It is a sad story and many children suffer cancer and then their parents make them suffer more with chemo and radiation. It is horrible and you should feel like shit for it. DIPG is no joke... It's what killed Neil Armstrong's daughter and the protocols haven't been updated for treatment in forty years. It receives less than 4 percent of research funding for cancer. It's awful. "Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis." [link to www.defeatdipg.org (secure)] "Rather than love, than money, than fame, give me truth." |
Rabbit In The Hat User ID: 77047002 United States 03/12/2019 12:42 AM Report Abusive Post Report Copyright Violation | |
Anonymous Coward User ID: 76130010 United States 03/12/2019 12:44 AM Report Abusive Post Report Copyright Violation | May all manner of healing come you way... This site has some really important natural interventions you can incorporate along side many treatments. It is very possible to eradicate this disease. [link to www.cancertutor.com (secure)] |
Anonymous Coward User ID: 76640758 Canada 03/12/2019 12:49 AM Report Abusive Post Report Copyright Violation | |
Serowin (OP) User ID: 76670987 Canada 03/12/2019 12:50 AM Report Abusive Post Report Copyright Violation | DIPG stands for diffuse intrinsic pontine glioma. It grows on and in the brain stem. It is a tumor which spreads out like threads into the nerves. It is very smart, the more I learn about it the more it seems to be engineered. Its like a virus in the glia cells, hacking them so they mutate into cancer cells. They also grow their own blood vessels. It's only been labeled for a dozen or more years. Here are some leads I am pursuing ... [link to oncoceutics.com (secure)] [link to www.ncbi.nlm.nih.gov (secure)] There is also a kid near us that made the news because he has the measles [link to www.ncbi.nlm.nih.gov (secure)] desperate times call for desperate measures. |
Dame User ID: 77047309 United States 03/12/2019 12:50 AM Report Abusive Post Report Copyright Violation | optometrist?.....sorry but I don't think you know what your talking about. Quoting: Anonymous Coward 10485453 the sad ass OP? Prolly not. I am saying horrible things and nothing so far but its little back up poster offering prayers. GoFundMe link on glp? really? Why is that allowed? Because it is, now go away |
rewind Militant Bitch User ID: 77432918 United States 03/12/2019 12:56 AM Report Abusive Post Report Copyright Violation | Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways. [link to www.ridgeviewmedical.org (secure)] Last Edited by rewind on 03/12/2019 12:57 AM |
Serowin (OP) User ID: 76670987 Canada 03/12/2019 12:59 AM Report Abusive Post Report Copyright Violation | As I stated I've been lurking here for ages, there isn't much a troll can say at this point I haven't seen before here. I don't expect sympathy from everyone, but I can promise you the looking glass is much different on this side. I hope anyone that reads this takes it to heart, non of us are promised tomorrow and tragedy can strike faster than you can imagine. Please, Please take care of your loved ones while they are here. We have 9 kids, Emma is the second youngest. We are a very strong connected family. I am proud of that more than anything in this world. Win lose or draw we will get through this together. |
Flippy User ID: 61461711 United States 03/12/2019 01:01 AM Report Abusive Post Report Copyright Violation | OP I mean this with all my heart so please dont be offended. Dont trust anything said on this forum. Trust in the doctors and not the insane anti vaxxers and that kind of stuff. Try to keep both your spirits up and stay positive. I'm not a Christian but I will be thinking of you and your family. |
Pooka User ID: 36721404 United States 03/12/2019 01:02 AM Report Abusive Post Report Copyright Violation | Hello friends. I have been lurking here for ages, not much of a poster but due to circumstance I find myself in survival mode willing to try anything. I don't facebook or any of that, so really this is one of my only social outlets to try. Quoting: Serowin My 8 year old daughter Emma, has been diagnosed with Diffuse Intrinsic pontine glioma. Its a rare brain cancer which grows on the brain stem and it is inoperable. This struck her out of nowhere, we had recently been told by an optometrist and audiologist that her symptoms where due to hearing and vision loss, nothing to worry about. Glasses and hearing aids. Never trust free health care!! Emma has been in the hospital for 2 weeks and has begun her 33 radiation treatments, which is the only treatment available due to the tumors location. She was very close to dying, but has regained some of her motor skills, and is now eating soft foods. This in itself is miraculous!! I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it. I will also be preparing foods at home using honey, pineapple, carrot and other known super foods to give her every possible fighting chance. I have not given up hope despite the prognosis, how could I? There are several clinical trials coming up which she may qualify for as well, it truely seems alot of cancer cures may be on the horizon, if they can get past the corporate interests and all that. ONC201 and ONC206 look very promising for this H3 K27M cancer in particular. Im reaching out here on a gofundme, knowing how greedy I sound. Knowing I have seen this sort of thing before and ignored it, so please if you ignore it, do not feel bad, perhaps thats how karma works... If anyone reading this has any information, or leads, or knowledge which may help, anything please share. I will be monitoring this thread, but probably not for a day or so as I've been up for a very long time. Regardless of the outcome I want to thank you for reading our story. [link to www.gofundme.com (secure)] Go to this website or her facebook page and read from her first post. The diagnosis changed after the beginning so keep readin all of it. You can ask her questions, as well. God bless and keep you and your daughter. [link to www.juliaadamscancerfund.org (secure)] Prayer is the most powerful force on earth. “I care not for a man's religion whose dog and cat are not the better for it.” Abraham Lincoln I sign all karma given. Would that those giving it to me followed suit. |
Sungaze_At_Dawn User ID: 77427246 Canada 03/12/2019 01:03 AM Report Abusive Post Report Copyright Violation | Curcumin. CBD and you have your conscience for the rest on that. You need to search cancer protocols and brain cancer protocols. Not to mention she could be allergic to curcumin or dandelion root or some of the good anti cancer supplements. But you need to some serious searches. And also after radiation or chemo if its a part of that, she needs things that restore her health and immune system. Curcumin in high doses. 6 grams a day, and you can actually take 50 grams if you're not allergic. Shrinks and helps cancer. Vit C. Vit D. Gerson Institute. I would never do one thing, would do them all. Sometimes some protocols have to take place at a different time. But still don't give up. Dandelion root good for immune and many types of cancer. The Devil tries to convince everyone he doesn't exist. The state tries to convince everyone they cannot resist. Do not go quietly into the good night. Rage Rage against the dying light! |
Dame User ID: 77047309 United States 03/12/2019 01:04 AM Report Abusive Post Report Copyright Violation | I too have been on that floor of a hospital with my daughter at 7 years old. My heart goes out to you and your daughter. You, can't explain what it is like at night walking the floors of that wing in a Children's hosp. The look on the few parents that stay by their child's bedside during the night. The zombie shuffle of the one parent making their way to find coffee. Mostly the children crying during the night. I wish I could give you something you might be able to try. I can't and I'm sorry. What I can share with you is maybe a tiny bit of hope. My daughter is now applying for medical school. I believe we got a miracle, and I pray you and your daughter will tool. Keep hoping and I'll be praying. . |
Pooka User ID: 36721404 United States 03/12/2019 01:04 AM Report Abusive Post Report Copyright Violation | optometrist?.....sorry but I don't think you know what your talking about. Quoting: Anonymous Coward 10485453 Of course she does! The optometrist checked the girl's eyesight. Read much? Prayer is the most powerful force on earth. “I care not for a man's religion whose dog and cat are not the better for it.” Abraham Lincoln I sign all karma given. Would that those giving it to me followed suit. |
panther0621 User ID: 27944307 United States 03/12/2019 01:06 AM Report Abusive Post Report Copyright Violation | |
Sungaze_At_Dawn User ID: 77427246 Canada 03/12/2019 01:13 AM Report Abusive Post Report Copyright Violation | Glioma's growth halted by absence of protein. This in mice, but lack of this protein caused the cancer to not grow: neuroligin-3 [link to academic.oup.com (secure)] Curcumin and I think they're talking about chemo helped in viro. You need to research the studies and anti cancer supplements. The Devil tries to convince everyone he doesn't exist. The state tries to convince everyone they cannot resist. Do not go quietly into the good night. Rage Rage against the dying light! |
Pooka User ID: 36721404 United States 03/12/2019 01:13 AM Report Abusive Post Report Copyright Violation | optometrist?.....sorry but I don't think you know what your talking about. Quoting: Anonymous Coward 10485453 the sad ass OP? Prolly not. I am saying horrible things and nothing so far but its little back up poster offering prayers. GoFundMe link on glp? really? Why is that allowed? That's up to the site owner, not to you, fortunately! Prayer is the most powerful force on earth. “I care not for a man's religion whose dog and cat are not the better for it.” Abraham Lincoln I sign all karma given. Would that those giving it to me followed suit. |
Anonymous Coward User ID: 10485453 United States 03/12/2019 01:15 AM Report Abusive Post Report Copyright Violation | optometrist?.....sorry but I don't think you know what your talking about. Quoting: Anonymous Coward 10485453 Of course she does! The optometrist checked the girl's eyesight. Read much? my god are you back in the dark ages or what? I have multiple eye problems and for him to just mention optometrist doesn't quite add up. but I'll let you carry on with this. |
Serowin (OP) User ID: 76670987 Canada 03/12/2019 01:20 AM Report Abusive Post Report Copyright Violation | I too have been on that floor of a hospital with my daughter at 7 years old. My heart goes out to you and your daughter. Quoting: Dame You, can't explain what it is like at night walking the floors of that wing in a Children's hosp. The look on the few parents that stay by their child's bedside during the night. The zombie shuffle of the one parent making their way to find coffee. Mostly the children crying during the night. I wish I could give you something you might be able to try. I can't and I'm sorry. What I can share with you is maybe a tiny bit of hope. My daughter is now applying for medical school. I believe we got a miracle, and I pray you and your daughter will tool. Keep hoping and I'll be praying. . This is touching in so many ways. Thank you. My wife is at the hospital tonight, along with our 12 year old son. He won't leave her side even though he should be camping with his friends this march break. He is a rock solid kid as they all are. It breaks my heart not to be able to be there, but I have a 4 yr old here that needs 1 parent at all times. Tomorrow after radiation treatment, I'm taking a few kids to the hospital for a visit then sending my wife home and I'll stay the night. Thanks everyone for the support and link, keep them coming. My brain is mush after these last 2 weeks. To be honest reading GLP has helped keep me sane !!! |
Sungaze_At_Dawn User ID: 77427246 Canada 03/12/2019 01:21 AM Report Abusive Post Report Copyright Violation | Pepper Extract, bioperine and freshly ground black pepper organic, helps supplements cross the blood brain barrier. Pretty sure cancer protocols require larger doses than regular doses and you need to research. I'm so sorry this is happening to your child. Was reading up on it and it would be a parents nightmare. [link to thereiscory.com] This mentions garlic, curcumin 8-12 grams take with pepper or with bioperine so it circulates. And these things, in a sick child. And there can be allergies, and you can only safely try one thing for a while in small amount and increase if tolerated. There is no rules against having a medical doctor and medical procedures and good sound medical advice, and also seeing an alternative health doctor and doing as much as possible. But prayers for her health to improve so more things can be tried. You can only do what you can do, and how much health and stamina she has. Last Edited by Sungaze_At_Dawn on 03/12/2019 01:29 AM The Devil tries to convince everyone he doesn't exist. The state tries to convince everyone they cannot resist. Do not go quietly into the good night. Rage Rage against the dying light! |
TriggaDre User ID: 74760167 United States 03/12/2019 01:23 AM Report Abusive Post Report Copyright Violation | Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways. Quoting: rewind [link to www.ridgeviewmedical.org (secure)] did you guys not just catch this? III |
Serowin (OP) User ID: 76670987 Canada 03/12/2019 01:26 AM Report Abusive Post Report Copyright Violation | Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways. Quoting: rewind [link to www.ridgeviewmedical.org (secure)] did you guys not just catch this? Well I did read that when I began my research and my heart dropped when I saw her name was also Emma. If your implying something else, well that is quite understandable considering what website we are on. |
Anonymous Coward User ID: 75054451 United States 03/12/2019 01:26 AM Report Abusive Post Report Copyright Violation | |
Anonymous Coward User ID: 77363287 United States 03/12/2019 01:26 AM Report Abusive Post Report Copyright Violation | |
Anonymous Coward User ID: 74632481 United States 03/12/2019 01:30 AM Report Abusive Post Report Copyright Violation | I cannot begin to even imagine what Emma & your family are going through. Sending up positive vibes & prayers for your family. The only suggestion that I have is to keep giving her the CBD oil. I think that’s a very good idea. Quoting: Rabbit In The Hat Agree with this CBD oil suggestion. Prayers for a miraculous CURE and for strength for the whole family. |
Spc__ User ID: 47851104 United States 03/12/2019 01:32 AM Report Abusive Post Report Copyright Violation | optometrist?.....sorry but I don't think you know what your talking about. Quoting: Anonymous Coward 10485453 Of course she does! The optometrist checked the girl's eyesight. Read much? my god are you back in the dark ages or what? I have multiple eye problems and for him to just mention optometrist doesn't quite add up. but I'll let you carry on with this. He mentions the optometrist because DIPG causes the eyes to have abnormal movements. A lot of DIPG kids are referred for the MRI that finds the tumor....by their optometrist. "Rather than love, than money, than fame, give me truth." |