Hello All

I'm Erin, my son Ben was diagnosed with a Diffuse Pontine Glioma on November 13, 2008. He has done 31 days radiation, and 1 round of chemo. We are scheduled for our 1st post radiation MRI on Feb 18, 2009. Ben has responded really well to the treatment, he's been back at school since day 17 radiation - he REALLY loves his school and his friends. He just turned 5 in December and is an awesome kid.

My husband, Ben Sr (or Big Ben) and I have been married for almost 7 years. We have another son Shaun, he is two. I work for the Audubon Zoo and my husband is a chef.

Ben is recieving treatment at Children's Hospitalin New Orleans, but I am looking into Phase II trials all over the US.

To learn more about Ben you can visit his blog: http://www.pirateben.blogspot.com

Praying for a miracle

Erin

Hi Erin,

Let me say welcome to the team. I am sorry that you have a need to belong, but am glad that you found us.

I am sorry to hear of Ben's journey with a DIPG. I know all too well this journey you are on, in October of 2005 my 7 1/2 year old son Matthew was dx with a DIPG.

I am glad to read that Ben is responding to treatment and is enjoying school. I know how much kids at his age enjoy school and hanging with their friends and teachers.

I invite you to check out the following DIPG groups.

DIPG Google Group - http://groups.google.com/group/dipg2

DIPG Yahoo Group - http://health.groups.yahoo.com/group/DIPG/join

PAC2 DIPG Group - http://curechildhoodcancer.ning.com/group/dipggroup
note: Please know that Team Unite also has a group on PAC2 (http://curechildhoodcancer.ning.com/group/TeamUnite)

I also invite you to visit I Could Be Your Child website (http://www.icouldbeyourchild.org), this is a site that lists other DIPG children and their websites. If it would be ok with you, I know the people who run the site would love to post Ben's photo and a link to his site. The site also has some wonderful links for "Other Resources", "Helpful Links" and other "Foundations".

Please know I will join you in praying for Ben's miracle, I will pray for Ben to be healed a little more each day until he is completely healed. I will forever share HOPE that Ben is healed.

If I can help in any way, please don't hesitate to ask.

God Bless.
Rich ~Angel Matthew's Dad~
DIPG Parent
http://www.caringbridge.org/visit/matthewmcgowan

Hi Erin,
Our 7yr old daughter Georgia was diagnosed in June 2008. We are using the stage III trial of antineoplastin treatment rom Berzynski clinic, Texas. We have had positive results this far. Its worth a look.
Georgia's web is www.caringbridge.org/visit/georgiamarshall

Maggie