Whole Lotta Catching up
DGP Family Meeting in Las Vegas
Melinda and I had an amazing trip to Vegas to meet with several other families who’ve lost a child to diffuse pontine glioma. We were both concerned that the trip would turn into a non-stop cry fest and that we would come home feeling worse than ever. Thankfully we were wrong.
We were greeted with cries of “there’s Pineapple” as we walked into the opening evening of the event. Melinda and I both felt instantly at ease and loved meeting the families that we’ve followed through their blog’s and Caring Bridge sites. We cried, we laughed and we shared our experiences with people who are walking our same path.
Our guest speaker, Tom Zuba, pointed out how poor our society is at allowing people to mourn and that we all need to tell and retell our stories in order to process them. He’s made me take another look at how I’ve been mourning Ben and treating my own health lately. His site is a great resource for anyone grieving and I’m curious to see what direction his book will take.
We spent a good deal of time discussing non-profit foundations and got a peek into three of the projects underway at JTHF.org:
- The Family Link Network has just gone live and allows family’s to add their website as a resource for other families.
- Tumor Tracker is under development still and will allow parents to input their child’s age, basic medical history, type of tumor, treatment plans and overall condition. The goal is to create a on-line database giving visibility to all of the treatment options for each type of tumor.
- Their third project will allow families to connect on-line with doctors for second opinions and allow doctors to collaborate on diagnosis.
The entire event was truly amazing and we can’t wait for next year.
How’s that new job going?
Not too good to be honest. I’ve been there for three weeks without being able to tell anyone why I was hired or what my job is. Not the best way to meet people and begin earning the trust of a new team. We’ll see how things shape up over the next few weeks. Or something.
Madie Started Kindergarten
And she couldn’t more excited
I am so glad that the trip to Vegas was good. I hope it brought that light a little closer so that you don’t feel so in the dark. I am sorry that the job is not as good as it could be. I will keep my fingers crossed that it will get good real soon. We love you very much, and are looking forward to see you this weekend!!!!
Shan
What a great picture of Madie!!! Too bad we aren’t all as excited about life as she appears to be.
Glad your trip was so rewarding. It demonstrates how many people hold you dear.
Keep us posted on Madie and Pineapple.
Sending much love,
Rich & Dot