9/29/2012

The Why

This


would not have happened, if


had not happened.

And while it goes without saying that in an instant we would switch this


for


we are happy that


has made so many kids


and raised so much money for


and raised awareness of childhood cancer with


As always Max, Touch A Truck is all because and for you. You are why we do this.



8/31/2012

The asterisk* in the room

Four years ago today, our family's life light dimmed forever. But though the shadows became deeper and darker, our eyes became finer tuned at looking into those dark places and finding new ways to light them up. Max's death tore a hole in our hearts that will never be fully closed or repaired. But in attempting to mend that hole, great things have happened. Of course, we would trade all those great things in a second to have Max back in our arms. Still, his legacy lives on in many ways and it's what keeps us going, every day.

Last Lego



Even though this picture is technically very poor, it's one of my favorites. On one of our last nights of a not-so-perfect August trip to Disneyland before Max died, Melis took Hannah and Nicky to a show that evening in the park. Max was not up for much so he and I hung back at the hotel. Max's legs were hurting and he used the wheelchair frequently. It was hot and fairly humid that week in Anaheim, but Max wore a sweatshirt most of the time anyway. Max wanted to go to the Lego store in Downtown Disney so I said sure, and we walked there by his choice. The walking was tough, you could tell every step was intentional. But he did it with a few rest stops. When we got to the Lego store, he was in his preferred mode and quite happy. He picked out a spider droid since he had just seen The Clone Wars movie. On the walk back to our hotel, Max proclaimed, "this is the happiest day in my life!" in the super-squeaky high voice that he had. His statement tore me up quick - I knew there might not be many more opportunities, if any, to hear him say something like that. While at the same time, I was in my own reality-distortion-field trying to avoid acknowledging the inevitable, I didn't think at the time he'd be gone in less than a month.

Touch A Truck and MaxRun


Max inspired Melissa to create Touch A Truck. Since 2009, it has become one of the biggest events of its kind in the country - over 8,000 are expected this Sept. 29 at Qualcomm Stadium. In the course of producing, promoting and holding the event, tens of thousands of people have been exposed to the message that childhood cancer kills, and that its up to us parents - not the government, not academia, not the press -  to keep driving towards a cure. Awareness > funding > research > cure. It's that simple.

Melissa has really pulled an amazing thing off this year (with a lot of help from amazing people such as a cast of neighbors, friends, supporters and good 'ol-fashioned volunteers that just want to help). Here's just some of the cool stuff happening at Touch A Truck - it's gonna definitely be bigger and better (and clearly louder) than last year!
  • Robosaurus will be doing 2-3 LIVE shows. Max would love this (is loving this).
  • 15+ food trucks will be serving a ton of food.
  • 2 stages featuring live music.
  • Car-themed activities (slot cars, pinewood derby races, etc)
And of course, we've integrated MaxRun into Touch A Truck, so if you run MaxRun, you get into Touch A Truck free afterwards with your race bib. It's a great way to combine our two events and make for a full day of awareness-building during Childhood Cancer Awareness month.


We always and continually need your support, here's how you can help!

Picture Your Life After Cancer


A New York Times/American Cancer Society book "Picture Your Life After Cancer" is coming out October. Check out the photo on the top row, third from the right. That's Hannah and Nicky, during our first photo shoot without Max. Building awareness and making sure that the story gets told that "kids get cancer; kids die from cancer." It's not just bald smiling kids...

Good*


I should be so happy with this photo, but I'm not. It's a kick in the face every time we get a beautiful sunset shot from our beautiful bluff a stone's throw away from our front door, with our three two beautiful kids.... oh, did I say three kids? Oh, wait, that's the problem now isn't it?

Why can't this picture be perfect? Why instead of seeing two happy, awesome kids that get along with each other overlooking the beautiful Pacific Ocean sunset, do I instead see what's missing?

To the unknowing eye, we're quite possibly living the dream. To us and other parents out there who've lost a child to cancer, we know that every memory*, everything good* since 8/31/08 has an asterisk next to it. 

We love you Max. We miss you everyday. We have faith that we will see you again.

7/13/2012

Eleven

June 30 2012 would have been Max's eleventh birthday.

Andy suggested throwing a party - a kids birthday party with Max's friends - and without hesitation I signed right up. Max's birthday has been a hard day for me to handle over the years, and the wonderful distraction of a celebration turned out to be perfect.
Max's buddies dropping off fifty party favor bags (that they assembled) to the oncology unit.

Food was never a great surprise for Max, but who can say no to In N Out?

Every kids' dream - shooting stuff - at Dave & Busters 
(the adult version of Chuck E Cheese)

More shootin'

Tickets for prizes

Air Hockey!

The Buds
Six amazing boys plus our Hannah & Nicky who remember Max and have dropped us notes over the years, raised money for MROF, and are genuinely great kids. 


 We released 11 balloons this day in Max's honor.


I'm not sure where I am in my heart and in my mind four years after Max has gone to heaven. The hole in my heart will always be there, but the edges are slowly getting less jagged... more bearable. It's taken this long for me to come to terms with being broken and whole at the same time. I wonder where Hannah and Nicky are in their hearts and minds? We all have our own places and our own ways of processing grief. And don't kid yourself; the grieving for a child never ends, the journey goes on, it's a part of your life, and there's no "getting over it." 

I lost my dad, age 85, and my brother, age 60 over the past eight months. The grief experienced through these losses is so different than that of Max. His life was so short and incomplete. I try not to wonder what he'd look like now (his friends are so big!). I try not to wonder what his voice would sound like. I try not to wonder how different the relationships in our home would be if the bridge had not left us. I try not to think about these things, because there is nothing that can be done. 

Max was a gift to us - a blessing of immeasurable value. His coming and going changed us forever for the bad and the good. And there is good. Lots of good. 

Happy Birthday, my darling boy. 
I love you forever

1/02/2012

KidsGames

Brian is one of my best friends since childhood, and lives in Reno, NV. We usually see Brian and his family during our annual Lake Tahoe trip over Christmas, but schedules didn't work out this year and we missed seeing them while up in the (snow-less) North. Brian's daughters - Jillian and Sabrina - know of Max but never met him. They requested to hear a story about Max, and I thought rather than email, I'd post the story here.

Hannah and Max went to KidsGames: a week-long vacation bible school-like day camp held at our church where Hannah, Max and then Nicky went to pre-school. KidsGames ended at noon every day. One day during the summer in 2007, after I got home from work, Hannah and Max were in the backyard still in their camp tees and being very, very silly. We played a game where I would try to take a picture of Hannah on a play structure. Max would then yell "aaaaaaaaaaaaaarrrrrrrrgggggggggghhhhhhhhhhh" and attempt to run in front of the camera right at the moment when I snapped the picture.

The first photo attempt caught Hannah and the photographer by surprise.

Pretty soon we caught on to Max's game.

Still, Hannah and I thought we'd get a photo in before Max could make another pass...

But it was impossible to snap a photo just of Hannah on the play structure. Max continued to run screaming through each photo frame.



Eventually Hannah wanted to give it a shot, so she and Max switched places.

Then they both started making crazy screaming noises, and running in front of my camera.




Even though Max was on oral chemo drugs at the time, it still made him tired. We never knew if he would be wiped-out after KidsGames, and have to take a nap.

This afternoon, August 1, 2007, was one of those all-too-rare "normal" days in the middle many abnormal days.

Max wasn't a kid fighting cancer this afternoon. He was Hannah's little brother, Nicky's big brother, a son, a cousin, a crazy 6-yr old screaming and running around the backyard with his sister in the early-evening summer light. 








8/31/2011

Tangible evidence

Our last family photo, taken by Deb Schwedhelm
The dreaded angelversary post @ +3 years. 

Here's a quick rundown of things going on. 

Andy
I left my VP Marketing post at RealAge in May of this year. I've been doing some project-based consulting and talking to start-ups and other companies as I decide what to do next. This also gave me time to help Melissa on Touch A Truck (which was a raging success as you might have read, so much so that we're moving to a much bigger venue for next year), as well as help out with the Neuroblastoma Symposium (photos | videos) hosted by the NMTRC, which is headed by Giselle Sholler, a familiar name to long-time readers of this blog. The NMTRC - along with Sholler's lab and Dr. Sholler herself - recently moved from the University of Vermont to the Van Andel Research Institute in Grand Rapids Michigan. Will's dad gave a great inspirational speech at the Symposium which you should watch here.

Summer
We spent some quality time together as a family in the beautiful Sierra Nevada mountain range. The ethereal benefit of time spent outdoors in nature is something our entire family enjoys and values. A collection of waaaaaaay too many pictures is on our Shutterfly site, but this one captures the essence of summer vacation spent in the Sierras.

On Tioga Pass Road, West of Tuolumne Meadows in Yosemite National Park. The road climbs to over 10,000 feet with jaw-dropping vistas at every curve in the road.


Hannah
Started 7th grade yesterday at Earl Warren Middle School in Solana Beach. She tested for 8th grade honors algebra (at the end of summer no less) but just missed the score cutoff and is glad for it, so she'll be doing regular ol' honors pre-algebra instead. She also got her elective choices: digital arts and surf PE. Yep, she gets to leave at 12:15 every Wednesday and Friday and go to Del Mar for 2+ hours in the water. The flip side of this is that unless it's raining, you're in the water, no matter the temperature (or thickness of your wetsuit)! Should be fun.

Hannah also spent two fun filled weeks at two separate sleep-away camps. Since 2008 when she was in 4th grade, Hannah's been attending Sibling Camp at Camp Reach For The Sky, which is in part underwritten by the American Cancer Society. CR4TS Sibling Camp is just for sibs of cancer patients. She also went to Forest Home for a week with our church. Hannah's a "camp kid" for sure and loves how she can be just "a kid" at camps such as these.

Nicky
Started 1st grade on Monday. Last year he grew in so many ways. He's a really goofy, really sweet, really smart kid. Thanks to older sis Hannah tutoring him, and his very precise, no-hurry manner of doing things, he scores totally high in math and reading. That same cautiousness spills over though into sports where he's pretty slow to try new things, but once comfortable goes for it. Nicky is the torchbearer for the spirit of Max and does amazing things such as explaining to kids he knows who Max is, and what happened to him. It's truly amazing to watch him tell a 6 year old that Max is his older brother, that he died from cancer, and yet his spirit still lives in our hearts. 

Melissa 
from Melis: Summer has been filled with touch-a-truck follow-up as well as getting a bigger venue and date for 2012. We've also teamed up with Alex's Lemonade Stand Foundation for this year's Max Run and I've been working diligently on promoting and planning with my peer at Alex's. I've decided it's time to get back into the workforce and am actively pursuing employment. Summer was indeed a great time taking the kids to the beach with friends and family, play date trade-offs with Nicky's friends, and watching Hannah turn into a pre-teen. Today, Max's Angelversary, has been a day of steady reflection for me. We've been gearing up for it for a week (I can't explain that any better), and this morning without thinking I donned my "Max" shirt. About an hour later I looked in the mirror and was pleasantly surprised. When I dropped Nicky at school, his new teacher gave me a hug and two mom's stopped me and let me know that they were thinking about our family today. Lisa emailed us to let us know that the Sturt's were wearing orange today. Nice surprises like these visited me all day. In honor of Max we baked cookies and took them to the hospital, where we received a warm welcome and a tour of the whole new childrens oncology center. I had only tried visiting one other time since Max's passing and I nearly had a panic attack. I miss those nurses - you guys know who all are. You were very good people to be with when my boy was sick. You were caregivers to me, too. The new facility at Rady's is beautiful and much deserved for all our warriors. Tonight I'm going to open our box of Deb photos and look at each one. Reflect. Smile. Probably cry. 

September
Is going to be a very busy month. For those that didn't know or forgot, it's not breast cancer awareness month despite the amount of pink being promoted already. It's Childhood Cancer Awareness Month - the President even said so. Since it's back to school season, think about the 46 children diagnosed with cancer every school day. 4,000 kids will die this year from cancer. We talk a lot about the number of lives lost in war and terrorist attacks. We are less comfortable talking about a comparable number of kids who die every year from childhood cancer. I'm just sayin'...
  • From Sept 21-23, Washington DC is the hub for childhood cancer advocacy and awareness efforts. You can see everything that's happening on the PAC2 website or by going to www.ChildhoodCancerWeek.com
  • I (Andy) will be in DC for these three days, mostly focused on the Fall PAC2 Workshop which is an invitation-only opportunity for collaboratively-minded childhood cancer foundations and individuals around the country to come together and network, discuss projects that are currently being worked on, and decide which projects should be worked on next. It is really the beginning of the entire childhood cancer community - of which there are thousands of organizations and individuals - working together under the banner of common cause and purpose.
  • Returning from DC, we will join hundreds of San Diegans running and walking in the Max's Ring of Fire Lemon Run, which raises money and awareness for childhood cancer. This is the second year we've held a run in September. Last year's Max Run was a success, but we wanted to use the run as a platform to reach more people and also to begin collaborating with other childhood cancer foundations. So we teamed up with Alex's Lemonade Stand and launched the MROF Lemon Run. You can read more about ALSF and MROF joining forces on this blog post I wrote for the Lemon Blog, and you can register here for the MROF Lemon Run and join us as we honor and celebrate Max, Alex, and the thousands of other kids and families affected by cancer every year.


Feel Good Story of the Month - Our Kids Can Teach Us More Than We Think Edition
Earlier this summer we were contacted by someone who lived in our neighborhood and whose kids attend the same school that Hannah, Max, and Nicky all went to or go to now in the case of Nicky. The kids wanted to sell their old children's books that were no longer appropriate and donate the proceeds to Max's Ring of Fire. The other day a checked showed up at the PO Box for $100. Accompanying the check was this note. Pretty cool. Thank you Max and Ally - you guys rock!


Feel Good Story of the Month - Back to School Edition
A friend called Melissa on Monday - the first day of school in our elementary district. Her son Ethan had attended preschool with Max, but not together since they went to separate elementary schools in the same district. After 4th grade, the district then feeds our two elementary schools into a standalone school solely for 5th/6th graders. Max would have been in 5th grade this year, and thus Ethan and Max would have been reunited. When dropping Ethan off for the first day of 5th grade, he was looking a bit uneasy. When asked by his mom about how he felt, he replied, "a little bit happy, a little bit sad." His mom asked why. "I'm happy that I'm starting 5th grade. I'm sad because I was supposed to meet Max here."

Why is this a feel-good story instead of a feel-bad story? I suppose its how you look at things. It's based on a psychological phenomenon universal to anybody who's lost a loved one, but amplified for a parent: we want people to know about and remember Max. About the only thing an angel parent fears, beyond losing another child, is that their child who has died has been forgotten. Ethan provided tangible evidence to two parents who needed to know he has not been forgotten.