Shattered

Does anyone here have a child suffering from DIPG? My nephew was just diagnosed and it is horrible. We are currently at CHOP Philadelphia and are to begin radiation on Monday. There are so many trials out there. If anyone has any info, please let me know.
Thank you,
Also, I was directed here to get a book A Guide to DPIG and I can't find it. I wil keep searching.

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I will cross post your request to the Making Headway Foundation Facebook Page to see if we have any other families willing to talk to you about it.
Our thoughts are with you. If you want to, you can send me your contact information in case our patient families are not signed up for this forum.
Catherine Lepone catherine@makingheadway.org.

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Hello.

I am sorry to hear about your nephew.

I wanted to follow up and make sure you were able to find ACCO's DIPG book. In case you still haven't been able to find it, It is available for FREE and can be ordered on our request form at : http://www.acco.org/Information/Resources/FreeResourceOrderForm.aspx (it's at the bottom of the form)

If you have questions about any of our other free materials, please contact our Fulfillment Manager, Liz Dicus, at LDicus@acco.org or at 855-858-2226 ext. 102

Amber Masso
ACCO Program Director

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I am so sorry to hear about your nephew. My thoughts and prayers go out to him and your family. My daughter was diagnosed with DIPG at the age of 6 in November of 2010 and fought it for 7 months. She took part in a clinical trial at the National Institutes of Health which involved a new chemo. She also was seen back home in Southern California at Children's Hospital of Orange County. I have recieved the DIPG book offered by ACCO, and it is amazing! Please let me know if there is anyway I can help you and your family, I will be thinking of you often!
All my best,
Kelly

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I am so sorry you, too, had to endure this pain. I did receive the book. I read it first because I didn't want my sister to read it yet. It is so sad. I cried through the entire thing. I don't know how parents can be so strong throughout this. My son, Danny is the same age as Rocco and they have been together since they were babies. I can't even watch my son wim or practice football without the tears streaming down my face. Rocco would be playing with him. My only hope is we get him to hang on to try one of the two new promising treatments out there. Vaccine or CED delivery? If you have any information regarding trials or treatment, I would appreciate your input. I know it is thanks to all the parents out there who suffered the loss that new things are being tried.

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Hi, ConcernedAunt, ADnea

I am very sorry to read both your Posts and god bless to you both and your families. I have a simliar story, my nephew has DPIG. We have recently had the devasting news that Radation treatment did not work. The tumour has moved. The hospital have given a month to 3 months to prepare for the worst..totally devasting and im sure you both understand. I have been frantically researching alternative treatments and was wondering if you both have any recommendations or research channels. Its seems DPIG is the Devil of 'C's and the most feared in the medically profession. To date I havent found any positive leads with DPIG alternative treatments, however my research has lead me to PAW PAW twigs exacts and the 25 years of research done by Jim McLaughlin. Majority of the research can be found on PAWPAWRESEARCH.COM. I'm praying this may help my nephew.

I'd would extremely grateful if you have any details you can pass on!

God bless x

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It is very difficult to find any postive stories or answers. When I find one there is something different. Low grade or atypical. It is living a nightmare that we can't wake up from. I have not heard of Paw paw twigs and will look it up. We did order the ruta 6 and calc. phos for Rocco. He is on the 5th week of radiation. That is so scary that it didn't work for your nephew. So if the tumor moved the radiation wasn't hitting the tumor??? I am guessing. Did you look into any of the clinical trials out there. There is a vaccine trial in Pitt we are looking at and a CED delivery of radiation at Sload Kettering. Also if you join DIPG.net there is alot of information there. I ordered the book Understanding the Journey of DIPG and read it for my sister. I do not want her to read it yet though. I cried the entire time... I am trying to keep the sad stories from her for now. She has to deal with his daily care as you know it is extremely difficult. There are days I am drowning in sadness from this. Let me know if you need any info. I am not sure if I can leave personal contact information on here.
Praying...
Dawn
vanvladricken@verizon.net

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Hi keithfay.

I am sorry to hear about your nephew.

If you have not ordered our book "Understanding the Journey," I recommend doing so, even if it's just for the resources listed at the back.

It is available for FREE and can be ordered on our request form at : http://www.acco.org/Information/Resources/FreeResourceOrderForm.aspx (it's at the bottom of the form)

Kind Regards,

Amber Masso
ACCO Program Director

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Hi Amber,

Thanks for the response - unfortunately im not based in the US or my nephew so I couldnt complete my delivery address etc. Is it perhaps located on the web somewhere I can download?

Cheers,

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We don't have it for download, but we can ship it to you internationally.
Please send an email request with your name and address to orders@acco.org
Be sure to mention that you would like to order the DIPG book. I will let our Fulfillment Manager know to expect your message.

Best,
Amber

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Thank you Amber!! Really appreciate it..I'll send through my request :)

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