2/17/2010

Dream beneath the desert sky

We took a last-minute trip to Joshua Tree National Park this valentine's day weekend. Partly it was to escape San Diego in general. Partly it was to attempt to recapture some of the structureless living that we did while Max was in treatment. Partly it was just to make sure we keep doing things that generally we didn't do while Max was sick, simply because it too difficult with everything else going on.





Attaining cruising altitude





Soaking it all in


An amazing natural amphitheater


That'd be a Joshua Tree


Buy Keen's if you want traction on rock. Hannah was like a mountain goat sticking to the sides of rocks at impossible angles.

Nicky and Hannah had a good time. We probably found "it" for Hannah, meaning an outdoor activity she really, really, really can get into. She's so tactile, so physical in her exploring. She was climbing arches, entering caves, touching everything. Running from boulder formation to boulder formation while we generally stayed on-trail. Nicky had a lot of fun too but was nursing a cold/fever at times so had to be carried at times. He's also our careful guy and so not necessarily jumping from boulder to boulder without help.

We of course took Max with us. Melissa and I discussed on the drive up to Joshua that it was OK if Max's urn got the markings of use from these trips, that if it got scuffed, scratched, dented and banged-up, it was just memories of Max being with us on these adventures. Though I also need to get a specific backpack for carrying Max, as the urn is about 25lbs and fairly long and narrow. Anyone who saw me pull it out of the backpack probably thought I had a miniature nuclear weapon, and I'm just waiting for the time when I have to explain what it really is and who's inside.



Can anyone can spot the carnivore in the background?


5,000 ft at Keyes Point. To Hannah's right is the Salton Sea and to her left is Palm Springs


Max on a rock


Nicky and Melis working on Nicky's Jr. Ranger booklet


Monday morning it was perfect - chilly but not too cold and not too warm. Kids had long leggings on to protect their skin from the rock. This is Nic re-enacting an alien after having a light sabre plunged into him by Anakin Skywalker. Yes, our preschooler watches The Clone Wars on Cartoon Network...





Arch Rock. About 35ft down either way.



All in all, it was good to get away for a couple of days. We have a lot going on in cancer world, and haven't been putting all that is going on in one place. Here's what we were temporarily escaping from this past weekend...

Touch A Truck
The effort to secure raffle items for the Touch A Truck tiered raffle is rapidly coming to an end. Thank you so much to everyone who has helped us out (Carrie, Rich, Alessandra... I'm missing people but you know who you are), we still need a few items so please review below and contact us if you can help ("help" can also mean just buying the item we are attempting to have donated, such as what we did for the two iPods we are giving away in the raffle).
  • Kids Bike $50-100 range
  • Weekend stay at a local hotel
  • Kids toys in the $20-25 range (building sets, construction trucks, scooter, boy/girl generic)
We will be selling raffle tickets online as well as attempting to sell them locally at select sites (a la Girl Scout cookies). We will be using iPhones credit card terminals to allow people to use their plastic to buy raffle tickets (in addition to checks and cash). Anyone with an iPhone and a desire to help by setting up your own raffle ticket stand please contact us. We'll supply you with everything (except the iPhone!) you need.

As part of this effort to seamlessly blend online and mobile commerce with a raffle, I'm re-building (for the 4th time) the Max's Ring of Fire website on a more friendly commerce platform. This will allow us to sell tickets, collect donations, both online and via iPhones, with very little overhead. We're learning as we go along how best to leverage the resources we have to do the most we can.

Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC)
This is the research and clinical trial consortium that Dr. Sholler leads, which has many researchers and hospitals collaborating on research and clinical trials (including Rady Children's San Diego). Less than six-months old, already the NMTRC has 3 trials open and 1 pending opening. This is where the money raised by Max's Ring Of Fire goes - to help drive the research and the clinical trials that kid's can get access to now! Anyone interested in seeing the direct result of the money they've contributed to MROF can come with me on a tour of Rady Children's and see kid's getting the therapies available through the NMTRC.

Please keep in your thoughts Erik's family, Sam and his family, Eden's family who just experienced the 2nd anniversary of her passing, and the thousands of other kids and families fighting for their lives, or for the parents living in the aftermath of losing their child.

And so as to not end on a down note, let me just direct your attention to Steve Dolling, Spencer's dad, who with family is on an extended sail cruise in Mexico. His writing was always amazing and it continues. Living Life to the Max never sounded so good...

2/15/2010

2/09/2010

Erik

Erik's in heaven. His and his family's grace are... inspiring.