It's Andy. I thought I'd post a quick update on my weekend trip to Vermont. The purpose was to get together parents - Neil (Sam's dad), myself, Pat (Will's dad), Terrill (Paul's dad), Ranan (cancer dad from NYC), and of course Meryl (Andrew's mom) - together with some researchers and clinical oncs - the incredible Dr. Giselle Sholler and Nick Heinz, PhD from UVM, Laurent Brard, MD/PhD from Brown, Jim Jameson, PhD from Kent State, Dr. Dan Durden from Aflac/Atlanta Children's Hospital and Dr. Sholler's lab staff including the wonderful Genevieve Johnson who always gets us our nifurtimox pills the next day after we ask for them :)

The purpose was to put together a MagicWater Project roadmap for 2008. Here are the outcomes (I'm sorry its so brief but I'm tired, I'm now in NYC and I have lots more work to do tonight and meetings bright and early):

1. Agree to meet every 3 months (may be obvious but not so when you consider work, treatment, etc)!

2. Begin to test 4 different "oxidative stress" compounds in mice that would 'turbocharge' chemotherapy (like Nifurtimox does) as well as be used in a maintenance treatment once the child got to NED, in order to see if there are additional agents that we could add to or substitute in case our current treatments stop working or a child relapses again. Those agents are:
- Vit C/K3
- Rapamyacin
- Artemisinin
- Omega-3's (yeah, fish oil)
- We may also try tetrathiomobylate

3. We also want to investigate the timing or chronotherapy component of administering agents. Some studies show that up to a 40% improvement can be made just by optimizing the time of day when an agent is administered.

4. Lastly, we agreed on a Phase II Nifurtimox trial, as well as a Phase II Nifurtimox trial for NED kids, so that we can see if giving Nifurtimox will help kids stay NED.

Obviously all of this is going to cost money. The Phase II Nifurtimox trial alone will probably cost at least $400,000. But, its worth it, and I'd dare say the readers of this blog would agree.

The best, I've saved for last. Please check out these two websites. Both of these amazing kids Neil and I met this weekend.

The first, Eden Brunskow, lives in Tustin Hills, CA but for most of the last two years has been at MSKCC. She is the second to last child to go on the nifurtimox trial. Neil and I, after taking the red-eye to Vermont Saturday night, dropped by the RMH in Burlington to meet Eden and her dad Paul. Neil knows Paul already but neither of us have met Eden, nor where we prepared to fall in love so quickly with her. She is absolutely darling and one of the cutest kids we've ever seen. She was so talkative and smart, entertaining us with stories of gophers and halloween (her fav holiday).

The second child we visited right before leaving the campus of UVM on Monday. Dustin Cobb is the last child to get on the nifurtimox study (15th). He's had a tough time as of late and was in-patient with an infection when we stopped by to see him. Dustin's a cool dude that loves to play shoot-em-up video games. He also seems to enjoy getting tickled by the nurses and Dr. Sholler. Neil asked if the nurses and Dr. Sholler would tickle him but they declined.

Please visit both of these children's sites and let them know you're pulling for them both. I'm sure they'd love to know you've read their story.

More on Vermont later later (like maybe this weekend).


rhonda said...

Keep up the good work guys!!! Wish we could've been there to meet you!! We just missed you!! I just loved the pictures of the boys skateboarding and with Tony Hawk!!!

rhonda dudley

Randee said...

Andy, Just to let you know I so admire your strength, your heart and your fight in taking on this NB monster. The Magic Water Project parent team are the truest of heroes--only out shined by your little NB warriors. My prayers and God's blessing for you all--Randee

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