When a final resting place becomes a work of art

Don Bartletti, Los Angeles Times / January 17, 2010
Melissa Mikulak and her son Nicky play in the living room of their San Diego home where a custom made urn holds the ashes of her son Max who died of cancer in 2008 at age 7. Max was a Star Wars fan so the Mikulaks commissioned artist Chris Rizzo to make the machined aluminum container that looks something like a Star Wars X-Wing fighter. As cremation becomes more accepted, a growing number of consumers want artful urns that capture the personality of the person they memorialize.
http://www.latimes.com/features/home/la-hm-urn23-2010jan23,0,6471884.story

The Conductor

The sublime beauty of our world is sometimes most evident in situations which most people consider uncomfortable and difficult to witness.



Erik Ludwinski, who has been mentioned here many times before, is a young man of 24 years but much, much, much fuller of mature wisdom and perspective than anyone I know. Erik has a difficult path ahead of him. Imagine being told how you might die... soon. Imagine hoping for the relatively calm but still potentially painful path to death through liver failure due to tumor burden. This, versus the stressful, chaotic and scary path to death through brain tumors and the non-stop seizures that accompany them. As Erik's mom Donna puts it so bluntly, "How would you orchestrate a death?" Much less your son's death.

Erik has much to say about this whole ordeal, and loves that some people want to hear how God is supplying tangible strength to endure this wicked challenge. It blesses him tremendously to share what he has learned, and for those he is close to--also the fear and pain of facing death, and cry together. How many of us can tell someone how to die, or how to trust God in the process? We have to hear from Erik not preach to him.

Thankfully, Erik's pastor has captured some of what Erik has said and I know I am not the only one hoping to hear and learn more from him. Erik's in charge and he's conducting the orchestra. Our job is to listen to and appreciate the beauty of the music he's creating.

Can you help?

Our Touch A Truck fundraiser this year will also include a raffle. We have a team garnering raffle items now but I thought I'd post some of our "wish list" items in case anybody reading this can help get us them (or similar equivalents). The raffle is tiered, so for Tier 1 below, the raffle tickets will be $100/ea with only 300 tickets available, thus the chances of winning one of the packages are pretty high. Tier 2 tickets will be $50 and 350 will be sold, and so on for Tiers 3 and 4. Please send us an email if you (or someone you know) can be of any help!

TIER 1 - $2000 value

Home Entertainment Pkg
* Flat Screen TV
* Blue Ray DVD Player
* Bose Surround Sound

SD Getaway Package
* Four Seasons Aviara OR
* La Costa Resort OR
* L'Auberge Del Mar OR
* The Grand Del Mar

Get out of Town Package
* Mammoth lift tix
* Mammoth hotel

PacClub Membership

TIER 2 - $500-1000 value

Apple Laptop Computer

I Love Del Mar
* Americana Cafe
* En Fuego
* Il Fornaio
* Jakes Restaurant
* Kitchen 1540
* Sbicca
* Stratford Court Cafe
* Bully's
* Jimmy O's
* Pacifica
* Seaside Yogurt
* Board & Brew
* Secret Café
* Giorgio's (osteria)
* Poseidon
* Rendezvous
* Shimbashi Izakaya
* Dinner for 10 at ???

TIER 3 - $200-400 value

Netbook (Acer)

iPod Touch + Speaker Dock

Legoland Weekend at Sheraton

SD Family Fun
* Balboa Park - Aerospace Museum
* Balboa Park - Carousel
* Balboa Park - Hall of Champions
* Balboa Park - Japanese Garden
* Balboa Park - Mini Railroad Ride
* Balboa Park - Museum of Man
* Balboa Park - Museum of Photographic Arts
* Balboa Park - Natural History
* Balboa Park - Model Railroad Museum
* Balboa Park - Automotive Museum
* Balboa Park - Museum of Art
* Balboa Park - Space Theatre
* Balboa Park - Zoo/Wild Animal Park
* Birch Aquarium
* Childrens Museum
* Maritime Museums
* Midway Aircraft Carrier
* Museum of Contemporary Art
* Museum of Making Music
* Quail Botanical Gardens
* SD Harbor Excursion
* Sea World

Theater/Music Lovers
* La Jolla Playhouse
* North Coastal Rep
* Old Globe
* House of Blues
* Anthology
* Belly Up
* Humphrey's
* Copley Symphony Hall

Restaurant Round Up
* Pamplemousse
* The Fish Market
* Arterra
* Zinc Café
* Brent's BBQ
* Brigantine
* Bruggers Bagels
* Cupcake Love
* Market
* Milton's
* Chuao Chocolatier
* Paradise Grill
* Pizza Port
* Roy's
* Ruth Chris
* Sammy's
* Taste of Thai
* Enoteca Zins (Carlsbad)

TIER 4 - $50-100 value

Let's Eat Out Tonight, Mom
* Rubio's
* Souplantation
* Pat & Oscar's
* Oggi's

Thoughts

Some kids that we are very close to (either virtually or physically, but always emotionally) are having a tough time right now. Would you please take a moment and think a good thought, say a prayer, say thanks to someone or no one in particular, in their name? You can also visit their sites and let them know that a lot of people are thinking of them.

Sam Hutchinson (www.teamsam.com)

Sam and Max got to meet some pretty good sports heroes together. Below: Trevor Hoffman. Bottom: Sean White, Bob Burnquist, Bucky Lasek and Tony Hawk with some sort of weird lens flare on his face, hanging at Tony's warehouse in 2007.





Sam has had off-and-on pain problems for more than a month. He needs pain relief and a therapy that works. We hope he and his super-human parents find both, fast.

SYDNEY DUDLEY (https://www.carepages.com/carepages/Sydneymarie/)

Sydney has been treated for years by Dr. Sholler. Her mom Rhonda is a rock and always finds a way to be cheerful despite sometimes dire circumstances. They just found out today, after a relatively calm 2 years after Sydney beat back relapse, that she has cancer in her pancreas and possibly liver. Some other areas are stable or improved. So some good new but mostly bad.

ERIK LUDWINSKI (http://www.caringbridge.org/visit/erikludwinski)

We almost got the chance to meet Erik in person (he was going to come out to Maxapalooza and stay with us - how fun would that have been?!), but got the privilege of meeting Donna and the rest of the Ludwinski crew this past summer. Erik has had a lot of pain issues - a lot seemingly caused by spinal cord compression from a tumor wrapped around his spinal cord - and just went through surgery to have it removed (it was successful!). Erik has a difficult road ahead of him and his tireless mom is smart and tireless as she investigates possible treatments. Erik has been fighting this disease since he was six and he's now 24. Time for the guy to get a break (and his mom too).

Please pray for Erik and Sydney, Will (who had improved scans today!) and Sam, Riley, Nathan and Aidan, and all the other precious kids fighting pediatric cancer.

I was struck by this today. From Will Lacey's blog ...

• Will has completed 57 cycles of chemo and the last 20 cycles have been under
  the guidance of Dr. Sholler in Vermont.


• The last 20 cycles have given Will an incredible quality of life.


• The last 20 cycles have allowed Will to live life as a normal kid.


• The last 20 cycles were not available anywhere else.


• Think about that.Over 1/3 of the cycles of chemo we have given to our son - the last 18+ incredible months of his life - are a result of treatment he has received that he would not have gotten, could not have gotten, anywhere else.I'm forever grateful that Will has had this opportunity to try this therapy, to have these options, because I know that we are incredibly fortunate to not only have these options available but to be so close to the care team that is providing them.

57 cycles of chemo starting when Will was 9 months old! Lance Armstrong wouldn't even be able to comprehend that amount chemo... particularly in the body of small child.

Sharing this information is another reason we are trying so hard to fund the NMTRC. You can help us on this front by making a donation, donating your time, hosting a fundraiser. Every little bit helps. It's all on our website: http://www.maxsringoffire.org/

Internet Friends

In my mind it always seems so weird to me to hear about people who meet through the internet, and yet Andy & I have had the opportunity to meet strangers via the internet ourselves.

Take Pat Lacey, instance. Or the Brunskows. Wonderful people who shared a strong bond with us even before we met: neuroblastoma.

Today we had the honor of meeting in person the incomparable Vicki Buenger of Texas, mom to the Great Erin. We shared kid stories and talked NB shop for four hours.

As I try to write about our meeting I'm on the verge of tears, because honestly: I know her. Yes, this is the first time I've laid eyes on her. No - I've never even spoken to her on the phone before today. But there is an unseen, unexplained bond that I feel with her, with Pat (Dina one day soon!), with Paul & Nina - that we've been in battle together and will meet there again and again.

It's hard to explain the comfort I feel with these people. I think they know. I don't think I'm weird on this front. There is just a comfort, a knowing, an understanding that reaches well beyond needing to know someone for years. We've traveled the same parallel road for years. It doesn't seem to matter that our roads never actually intersected.

I know you.

Thank You!

Max's Garage Sale raised over $2,500 in the month of December for pediatric cancer research. Truly, a win-win-win! Thank you to everyone who participated. I wish it could have been 10x or 100x that amount but we will get there, not soon enough, but soon. If you are interested in where the money goes, the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) web site is now live.