tag:blogger.com,1999:blog-5847488566805525031.comments2022-06-18T02:09:01.531-05:00DIPG Discussion -- brought to you by Just One More Day for Love, Hope & a CureChristinehttp://www.blogger.com/profile/18348381365493843154noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-5847488566805525031.post-61113274782451109262013-05-18T00:55:14.439-05:002013-05-18T00:55:14.439-05:00This is a beautiful and very informative website. ...This is a beautiful and very informative website. Thank you for doing it. I am so sorry for your loss. I lost my daughter to this horrible disease too. <br />Brain stem biopsies have been taboo - and yet without them all the medical teams can do is throw all of the old treatments (rad & chemo) at them - while a cure remains only a hope. <br />Thanks again!<br />Marcia Jacobs - Anjuli's mommy Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-91307069700161894372013-04-25T17:50:45.155-05:002013-04-25T17:50:45.155-05:00To Annonymous of march 30th 2013, please give us m...To Annonymous of march 30th 2013, please give us more details like who helped you in medical field and where you live in general. We need hope! we just recived same diagnosis and want to do any and everything so our 5 year old has a fighting chance.<br /><br /><br /> thank you. And i hope your little one is doing well.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-41588925399153685522013-04-20T15:58:10.462-05:002013-04-20T15:58:10.462-05:00The petition is here (english version)
http://www....The petition is here (english version)<br />http://www.evapourlavie.com/13-petition.html<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-18615341074235171952013-03-30T08:31:58.355-05:002013-03-30T08:31:58.355-05:00I was given 2-3 months for my son...and we were to...I was given 2-3 months for my son...and we were told 9 out 10 children pass from this disease......this actually gave me hope because prior to hearing this we thought that was it. I looked into complementary treatments for my son...essiac tincture,wholefood multi vitamins,kinesiology,prayers etc etc. Not only did he get through 6 weeks radiotherapy,but he had 13 months chemo as well...with no infections,illness or hair loss. He has never missed a days school through all of this and he is nearly 3 years post diagnosis. I hope more people come to realize that there are MANY natural remedies to curing cancer....more emphasis needs to be given to looking holistically at why the cancer is present,not just treat it with chemicals. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-18722094682026279722013-03-25T15:45:51.935-05:002013-03-25T15:45:51.935-05:00I read all three sections of Stella's story to...I read all three sections of Stella's story today and am so grateful. My beautiful 3 year old granddaughter was diagnosed with DIPG on Feb 21. Her parents have chosen not to treat with radiation and I am so glad to read about Stella as it validates the choice made. Thank youAVhttps://www.blogger.com/profile/12688302081898624421noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-69064627056816154822013-03-20T22:43:55.131-05:002013-03-20T22:43:55.131-05:00You are right that atypicals and typicals are diff...You are right that atypicals and typicals are different. Here are two other posts that might be helpful-<br />http://dipg.blogspot.com/2013/03/typical-versus-atypical-what-does-that.html<br /><br />http://dipg.blogspot.com/2013/03/biopsy-consensus-statements-on-dipgs.html<br /><br />I believe 1 of those listed is typical. Hopefully we will have a better understanding of DIPGs with significant participation in the DIPG Registry. There is a specific research project looking at prolonged survival.LAShttps://www.blogger.com/profile/10542398672724609734noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-56330316595799639372013-03-20T22:39:56.835-05:002013-03-20T22:39:56.835-05:00Since a DIPG diagnosis is currently based on imagi...Since a DIPG diagnosis is currently based on imaging- that it is diffuse, intrinsic and pontine then it is hard to call it a misdiagnosis. Perhaps it is better to say DIPG is a misnomer and should be called a DIPT- diffuse intrinsic pontine tumor. It looks like there a potential movement toward this given a recent publication out of Denver-<br />http://www.ncbi.nlm.nih.gov/pubmed/22747092<br /><br />It is true that one can only diagnosis a glioma by biopsy but that is the way these tumors are classified currently medically- even though some might be PNETs. I'm not convinced for survival that this makes a difference as pontine PNETs are considered fatal as well. So far it seems likely that it is the low grade gliomas that fare better- but these are still gliomas so would still be DIPGs- perhaps eventually being known as low grade DIPGs.<br /><br />I don't know a difference between DPG and DIPG unless one is considering DPGs to be a synonym for atypical DIPGs (such as having focal or exophytic components). There is truly a crisis regarding terminology that has to be worked out so everyone is using the same words to refer to the same things.LAShttps://www.blogger.com/profile/10542398672724609734noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-39436966210011334962013-03-20T22:32:32.091-05:002013-03-20T22:32:32.091-05:00This list was accurate in 2010 when it was first p...This list was accurate in 2010 when it was first placed. One needs to understand that prolonged survival does not mean cure- it is those that have beaten the odds. Links from the following post might be helpful-<br />http://dipg.blogspot.com/2013/03/french-dipg-site-tumeur-du-tronc.htmlLAShttps://www.blogger.com/profile/10542398672724609734noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-49922711758138127822013-03-20T22:29:28.505-05:002013-03-20T22:29:28.505-05:00Check out this post which has a link to a site wit...Check out this post which has a link to a site with a more updated list.<br />http://dipg.blogspot.com/2013/03/french-dipg-site-tumeur-du-tronc.htmlLAShttps://www.blogger.com/profile/10542398672724609734noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-2775842283876486192013-01-22T23:58:42.008-06:002013-01-22T23:58:42.008-06:00Nice blog, thanks for sharing the information. I w...Nice blog, thanks for sharing the information. I will come to look for update. Keep up the good work.<br /><br /><b><a href="http://www.brainsciencefoundation.org/bUnderstandbPrimaryBrainTumors/Glioma/tabid/322/Default.aspx" rel="nofollow">glioma</a></b>Anonymoushttps://www.blogger.com/profile/03068871291649512674noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-46597538014423100382013-01-15T22:41:52.260-06:002013-01-15T22:41:52.260-06:00This makes me feel so much better! You can do this...This makes me feel so much better! You can do this too Henry!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-10148065482399584322013-01-14T20:55:03.005-06:002013-01-14T20:55:03.005-06:00This list isn't accurate.
I've just read t...This list isn't accurate.<br />I've just read through most of the stories and, sadly there are quite a few children on this list who have passed away :(Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-30365317948936785142012-12-13T08:58:01.581-06:002012-12-13T08:58:01.581-06:00You may wish to update this list. 5 of the childre...You may wish to update this list. 5 of the children who are listed as survivors have subsequently passed away.<br /><br />Benny<br />Bridget<br />Clay<br />Erica<br />and the second Kayla<br /><br />Depressingly I read the following quote from a recent article:<br /><br />It kills 90 per cent of its patients within two years, most within 12 months. The other 10 per cent, doctors think, were likely misdiagnosed.<br /><br />http://www.thestar.com/news/gta/article/1298845--given-3-months-to-live-stella-delights-in-the-moment<br /><br />I wish we had been told that truth, living with a faint hope is a form of hell.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-86112172360429080142012-12-08T08:29:51.981-06:002012-12-08T08:29:51.981-06:00This page needs to be updated.This page needs to be updated.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-90221193270736972112012-04-30T08:21:16.167-05:002012-04-30T08:21:16.167-05:00Not trying to squash hope by any means but can you...Not trying to squash hope by any means but can you please update this list? Many of these kids are healed...in Heaven.Lindsi Bhttps://www.blogger.com/profile/10046872248361668798noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-75720126073553344712012-04-29T08:59:09.579-05:002012-04-29T08:59:09.579-05:00Can you please update this...as many of the childr...Can you please update this...as many of the children listed have been healed in heaven.Lindsi Bhttps://www.blogger.com/profile/10046872248361668798noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-88230192297651212222012-04-24T09:49:39.324-05:002012-04-24T09:49:39.324-05:00Here is a new Clinical Trial that has been recentl...Here is a new Clinical Trial that has been recently approved.<br /><br />http://www.cornellneurosurgery.org/pedneuro/dipg-news.htmlMartin Nelsonhttps://www.blogger.com/profile/01419924840015643969noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-26729126320215544762012-03-01T20:20:18.627-06:002012-03-01T20:20:18.627-06:00it's too late for us to save our Franco, but I...it's too late for us to save our Franco, but I hope they do find a cure for this terrible disease. No child deserves to suffer like they do with DIPG. May God Bless all of them!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-15324588612796844442012-01-19T05:00:20.696-06:002012-01-19T05:00:20.696-06:00I don't want to dash anyones hopes-but there i...I don't want to dash anyones hopes-but there is a marked survival difference between typical DIPG vs atypical DIPG patients.<br /><br />The latter have a marked improved survival rate.<br /><br />Is it possible to know how many of these were typical vs atypical DIPG pts?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-69075888824272556302011-12-19T10:48:19.903-06:002011-12-19T10:48:19.903-06:00This Gives gives hope !!!This Gives gives hope !!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-49594958579119567372011-11-16T12:15:59.365-06:002011-11-16T12:15:59.365-06:00Thank you for this useful info, which I will be sh...Thank you for this useful info, which I will be sharing with the Facebook group, "Diffuse Intrinsic Pontine Glioma: DIPG/Brain tumor/Cancer Families" https://www.facebook.com/groups/DIPGfamilies/Theresa M. Collinshttps://www.blogger.com/profile/12157062505391306740noreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-81411708995384585342011-06-18T23:57:38.559-05:002011-06-18T23:57:38.559-05:00We were all told that DPG has survivors, DIPG does...We were all told that DPG has survivors, DIPG does not, and for those who have survived, were misdiagnosed. DIPG can ONLY be diagnosed through a biopsy of the tumor.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-7359749166267956982011-04-11T23:11:25.431-05:002011-04-11T23:11:25.431-05:00Sandy, it is with a heavy heart that I read your f...Sandy, it is with a heavy heart that I read your family's journey. I have been following a beautiful child for months who passed away March 13, 2011 just 13 short days of her 4th birthday from this horrible disease. My prayers are with you and your beautiful child who battles this monster! I don't know if it will help you at all, but if you are on facebook, please go to the Prayers for Delaney page. Her parents, Jason and Brenna Wadsworth are 2 of the strongest people I have ever known in my life and they continue to fight for a cure... I would love to be able to follow your journey, if only for love and support for you, your precious child and your family. Please email me if you just need to talk, vent, cry, laugh, whatever it is that you need... May God bless you both today, tomorrow and always... <br /><br />Sherry Crockett <br />Wytheville, VA<br />pweandme@yahoo.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-48062686562493132282010-10-08T15:56:18.926-05:002010-10-08T15:56:18.926-05:00I find this a really interesting yet sometimes dif...I find this a really interesting yet sometimes difficult to understand subject.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5847488566805525031.post-29104668669969909792010-02-17T13:49:10.653-06:002010-02-17T13:49:10.653-06:00So awesome to see this! I know it probably gives ...So awesome to see this! I know it probably gives much needed hope to many families!pinksarahhhttps://www.blogger.com/profile/02890605433522789252noreply@blogger.com