2/16/2009

Max's Ring of Fire

Like our lives these days, this post recaps a rambling, seemingly disconnected series of events which, in the end, ultimately ends up making sense... I hope.

Today - another update on what we've been up to, and announcing the work we're doing to help fight neuroblastoma - and what you can do if you want to help!

First, the update.



We exited January and entered February with a little family celebration on January 31st (5 months for those keeping score). We ate, played and watched the sun set while sitting on the grass at Powerhouse Park - all things Max enjoyed to do, all the better since it was January! As I wrote in my previous post, we use Max's stuffed "Bruce" shark from Finding Nemo as his stand-in for pictures now.

We also have started visiting the new Children's Museum in downtown San Diego, which is a gorgeous building - mainly glass and steel - and a wonderful place to spend a few hours together as a family.






Everywhere we go these days, we leave behind little signs of Max.

We have also rediscovered the "bluff park" - I don't know the actual name of it. It's right at the end of our street and overlooks the San Dieguito river valley - to the east is Rancho Santa Fe and to the west is the Del Mar racetrack where the ponies race from July - September. But the real treat is hopping the fence and exploring on the ground.






Little Nic is growing up fast. He's at the age when Max was first diagnosed, and it merely reemphasizes the toll that neuroblastoma, and even frontline treatment (ie, from Oct 04-July 05) took on Max. We strive to keep a balance between keeping Max alive in Nic's memory and his heart, while allowing him to grow into hi own person. It's a hard balance to keep up.






Melissa and I are ready to announce our continuing effort to help defeat the beast neuroblastoma. We have formed a new 501(c)3 non-profit organization called Max's Ring of Fire, which directly supports the neuroblastoma program of Dr. Giselle Sholler at University of Vermont College of Medicine/Vermont Cancer Center. We chose to take this path after Max died in order to have a route through which his story could be told, and money raised through methods not available to us as part of the MagicWater Foundation (which Neil of Team Sam is continuing with).

And so we have submitted the paperwork for our 501(c)3 status (thank you Mike Garrett of Pillsbury for your help and advisory services in this regard!), launched the website MaxsRingOfFire.org, and have started planning our signature fundraiser, Maxapalooza, slated for this Fall. More details to come - sign up to be notified via e-mail when we have more information available!

In addition to raising money for Dr. Sholler's program, I have become actively involved in helping her to build a 5-year plan for her program. That plan is taking shape and will be posted here and on MaxsRingOfFire.org when it is ready. Friends of ours, Kristy and Steve Myers who hail from the planning and production disciplines in biotech, have been helping to process flow Giselle's lab so that we can generate a picture of where Giselle wants to be in 5-years, where she is now, and therefore the "gap" that needs to be filled. Max's Ring of Fire is raising funds to help close that gap (it will be significant, to be sure). We have been extremely fortunate to have the support of many additional friends other that Steve and Kristy, in this part of our lifelong journey that continues to be focused on Max. As we shift away from saving Max's life to joining the larger battle of finding a cure for neuroblastoma, it does not mean in any way that we have lost touch with what matters most to parents whose children are actively fighting this disease: Better, less toxic therapies now.

4 comments:

Amber said...

We are fighting neuroblastoma too. I don't have money to donate, but I have time. Please let me know if there is anything that I can do to help.

The Lee Family said...

Our home is full of thoughts and memories of Max...

Danielle: "I'll always remember Max in my heart....his smile."

Dylan: "He was fun to play with...I miss playing with him."

Debbie: "He was so affectionate with Dylan..I have two pictures...one he is hugging Dylan, the other, of Hannah, Danielle, Dylan,and Max...pulling Dylan's arm around his shoulder...and that smile...so much life,...he taught Dylan to receive love...from a true friend he will never forget."

Our hearts are with you. All our love.

Anonymous said...

You guys are amazing. I am not surprised that you continue and intensify the fight against childhood cancer, and we are behind you... Love, Holly

Sam and Steph said...

Even though some of that is in Korean on this computer, I want you guys to know I support whatever you support 100%!! I would give my right arm to be at Maxapalooza. But count me in for next year! Looking forward to learning more about Max's Ring of Fire.
Yours from Korea, Steph and Sam

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