Latest News
Northwestern University’s Dr. Chen Shen Studies How ATRX Mutation Affects DIPGOctober 31, 2019 - 3:45 pm
Immunotherapy Experts Gather to Tackle DIPGJuly 31, 2019 - 11:16 am
Celebrating Vivian’s 5th BirthdayJuly 8, 2019 - 5:45 pm
Harvard’s Dr. Anastas: Applying Epigenetics to Unlock the Mystery of DIPG GrowthJune 28, 2019 - 9:18 am
Announcing New Kansas Chapter: Carson Hall Defeat DIPG FoundationApril 12, 2019 - 6:00 am
Update 5.8.2018
This is the Voyager in action. The pediatric version apparently looks a little bit less like a halo. Simon told Vivian before she went to school today, if anyone asks about it tell them it’s a halo and if they ask what that is say it’s space age. Vivian started wearing it Sunday morning. Has […]
Update 5.6.2018
Viv has a great time on our Make-A-Wish trip to Orlando. We stayed at Give Kids The World Village, a special place only Wish kids get to stay. They serve ice cream all day long! Viv got the extra special princess treatment as a Wish kid. Anna and Elsa spent 5 minutes hanging out with just her where normally […]
Update 5.2.2018
Great news today. We FINALLY got approval for the Voyager by a company named Nativis. God sent my brother David to a potential investors meeting the week after Viv was diagnosed. What they were talking about trying to cure sounded a lot like what was going on with Vivian. He let us know about the […]
Update 4.20.18
Many people have asked how Viv is doing. This photo is from a play date today with her entire class. If we could keep her this way forever, that would be the miracle we have been praying for. Her MRI Wednesday. showed the tumor has shrunk somewhat. This is fairly normal at this point. 99.99% […]
Update 4.17.18
It’s been a while since Katie and I have updated all of you who are supporting Vivian. This morning I was texting information to my extended family and realized we needed to update everyone. So, here is where we stand today: Vivian has completed the only standard therapy for Diffuse Intrinsic Pontine Glioma, which was […]
Update 4.11.18
A very big thank you to all of the people who have been so very generous and thoughtful during this time. We’ve had many meals delivered and there has been an abundance of toys, activities, stuffed animals, cards, blankets, offers to help, and love and prayers poured out on us. Thank you!!! Vivian was back […]
Update 3.30.18
We had a little celebration last night for the end of radiation for Viv. 2 car loads of cousins from Yakima and a few local friends! Viv is seemingly immediately happier, sturdier, and more energetic than at any time during her treatment. An answer to many prayers and a sense of relief on her part […]