Long Overdue
Boy, it’s been a while and a ton has happened. Let’s just jump in with a smorgasbord of updates…
Update on Alex Kasnoff
I wrote about Alexander Kasnoff’s brain tumor in July of last year. It’s been a very difficult year for the Kasnoffs and Alex has not responded to the treatments for his tumor. He’s a wonderful little boy with amazing parents and it breaks my heart to think of them facing the reality of Alex’s cancer.
Gwen and Steve are working to build a play area for Alex and his little sister Zoe and they need some help - both financial and in labor. Please sign-up to lend a hand in bringing a smile to Alex’s face.
DPG Family Gathering
Melinda, Madie, Lily, Grandma Pat and I all had a wonderful time at the 2nd DPG Family Gathering. It really does help to surround yourself with people who’ve experienced the loss of a child to diffuse pontine glioma. Dr. McKnight was the highlight of this years gathering leading us in a discussion about the fine inter-workings of clinical trails. The pessimistic short version is that it takes at least 10 years to get anything done.
The optimistic version is that we’re all fired up to do something different. We’ll be focusing our efforts toward supporting families with information from another parent’s point of view. We’re not doctors and we’re not counselors - we’re just parents who have faced this challenge and are committed to sharing our knowledge to help others. The folks at JTHF.org are taking the lead on creating a new site and materials to distribute via the major pediatric brain cancer hospitals.
Conquer Childhood Cancer Act of 2007 - Again
Hearing that it’s 10 years to get anything new to patients and that there really isn’t anything hopeful out there for patients with diffuse pontine glioma has lead me back to The Conquer Childhood Cancer Act of 2007. I’m not expecting to congress to solve all of the worlds problems and I highly doubt that the NIH can move faster than 10 years. The fact is that we’re in the dark about the occurrence of childhood cancer. Hospitals and independent researchers compile all of the statistics and tracking we have and much of this data is watered-down to protect patient identity. We cannot fight a disease that we don’t understand. It’s time to begin gathering data.
Please urge your congress critter to support this bill. It’s got re-elect ability written all over (who doesn’t want to say “I voted to end pediatric cancer”). It’s the best half a billion you’ll ever spend.
Me.duim Map Widget
You might have noticed the uber cool Me.dium Map Widget in the upper left corner and wondered what the heck it is (go ahead, scroll up - I know that this is a long post). Me.dium shows you the activity of people doing similar activities online. The widget gives you a little peak into the people and websites relevant to this one by showing people moving around it. It’s free to join and is a great way to expand the visibility around a blog.
Lily is walking!
Baby Pineapple, aka Lily, started walking about three weeks ago. She’s the cutest little terror you’ve ever seen.
And Madie, is just Madie
