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. 

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.

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.

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.

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. 

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. 

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.


Max's visit

No, not literally of course. But a good sign. A very good sign.

Many may remember Mashed Potatoes For Breakfast - the blog Deb Schwedhelm wrote that chronicled Max's battle with neuroblastoma from April 2008 until August 2008.

One of Deb's first posts was from her initial Mikulak family photo session in April 2008 at Marion Bear park.

After the session, Deb captured what has since been titled The Angel Print.

Two weeks ago, when we were in Mammoth at the tail of our summer vacation, I looked up from our motorboat that we were putzing around Lake Mary on, to see this cloud looking amazingly like The Angel Print that Deb had captured 3 1/2 years earlier. I immediately grabbed my 'Crapberry' and was able to capture most of the cloud formation before it dissapated (windy that day in the Sierra's).



Bittersweet is one of those words whose meaning is painfully clear to angel parents.

Summer can be rough. Max's 10th birthday was on June 30. Hannah's 12th birthday was yesterday, July 13. Bittersweet. Sam's 11th birthday was also July 13. Today is Paul Saxon's Angelversary. A dad that I know celebrated his 50th birthday yesterday, and today the fourth anniversary of his son Andrew becoming an angel. Bittersweet.

Today, we meet, for the first time, a family visiting relatives in San Diego, but who live in  Istanbul. I remember seeing lovely, caring comments on this blog from someone in Istanbul all throughout Max's battle. They reached out to us a month ago in the kindest way, letting us know that they were coming to San Diego and if we could perhaps get together. I love the people we've met on this journey. I hate the price. Bittersweet.

And then, you read something like this (thanks to Nancy Levin for uncovering it)

Octavio Paz

After chopping off all the arms that reached out to me;
after boarding up all the windows and doors;

after filling all the pits with poisoned water;
after building my house on the rock of a No
inaccessible to flattery and fear;

after cutting off my tongue and eating it;
after hurling handfuls of silence and monosyllables of scorn at my

after forgetting my name
and the name of my birthplace
and the name of my race;

after judging and sentencing myself
to perpetual waiting
and perpetual loneliness, I heard
against the stones of my dungeon of syllogisms

the humid, tender, insistent
onset of spring.


Ten years old

From Daddy...

Dear Max,

10 years ago today you amazed us with your easy and (mostly?) painless entrance into this world. You almost came out of mommy before the doc had a chance to get to our labor & delivery room. I remember the nurse asking mommy, in a serious manner, if she could "slow down a bit" because the doc couldn't get to our room in time! It all worked out in the end, and you were born without a hitch :)

a little about Max’s favorite things….

  • ANIMAL: A lot were favorites, these were probably the most frequently mentioned/read about/worn on shirts (and thus "favoritest" status): Kimodo dragon, praying mantis, sharks
  • TV SHOW: Dogfights (now-defunct air warfare re-enactment show on History Channel)
  • CARTOON: Kim Possible (he loved Ron's naked mole rat)
  • MOVIE: Wall-E, tho we didn't take him in time to see it... :(
  • DRINK: Daddy juice (Trader Joe's Heart of Darkness mango juice)
  • FOOD: "Food is not a surprise!" but from time to time enjoyed dungeness crab
  • BREAKFAST: Plain bagel, chocolate milk and a walk down to the park-by-the-beach
  • COLOR: Orange, Black, Red, Blue
  • SONG: Ring of Fire/Social Distortion, Blitzkrieg Bob/Ramones
  • THING TO DO: Legos, Wii/PS2 (Lego Star Wars/Lego Indiana Jones), PC/computer (Snowy Bear, Feeding Frenzy), drawing pictures, fishing
  • LOCAL ACTIVITIES: Lagoon hikes, park by the beach
  • SPORT: Soccer, T-ball, and loved watching big kids skateboard
  • VIDEO GAME: Lego Star Wars
  • TOY: Lego's
  • VACATION: Disneyland
  • HOLIDAY: Christmas
  • SEASON: Summer (beach)
  • WEATHER: Sunny and warm
  • RESTAURANT: Fish Market (until they stopped making their fish-shaped cheese pizza for kids)
From Mommy...
Today has been creeping up on me. I've tried to ignore it, but this morning I had a hard time sleeping but I just didn't want to get out of bed. I took my coffee in a mug that was given to Max on his birthday by two of his friends on his 6th birthday.

This day - Max's Birthday - has become so significant to me. This is a day that should BE the material birthday of a boy who should be 10, who should be going into 5th grade, who should be here with our family. What it has become, is a remembrance of the things he loved to do, and probably would love to do on this day.

I can say that all four of us had a great day today. And we did remember our son and brother with every step we took. We picked up bagels and walked to the beach for the morning. While at lunch, at the Fish Market, of course, Hannah asked if Max would’ve been a rollercoaster kid like her. I said definitely, because he did everything she did. I think she was wondering if Max would have gone on all the crazy rides with her at the fair. Yes, he would have. And he would have gone on all the little kids rides with Nicky to keep him company. Hannah filled in for him at the Fair this afternoon. On our way home Nicky reminded us to pick up balloons for Max. We made a paper airplane with birthday greetings from each of us, attached it to the balloons and sent them all off to him in heaven. We closed the day with one of Max’s favorite TV shows: Dogfights – P51 Mustang.

There is much happiness in our lives. How could that be? Well, I think we’re better equipped to take the good as “amazing” on each given day, and live it to the Max. And still there is an underlying sadness that can’t be ignored fully, nor do I wish to ignore it. With every happy memory of Max there is a tinge of sadness no matter how I pretend to play it off. It may not occur to me right away, but it will catch up later.

I’ve got nothing profound to say today. This day has exhausted me both mentally and physically. I wish my kid were here.

Yeah… I wish Max were here to have a ridiculous party with too many kids, like we used to.

Happy Birthday in heaven, Max.


Touch A Truck = 4,637 Guests!

In only it's third year, Touch A Truck attendance has grown tremendously, and this year we welcomed 4,637* guests to climb on, climb in, and honk the horns of hot rods, construction vehicles, public safety, military, and many other cool and special vehicles. In addition, three bands played, five food trucks fed, and three lemonade & one coffee stand quenched the masses.
For more pictures go here.
Also this year, we stepped out into new territory and invited a few friends to join us: Alex's Lemonade Stand, a national childhood cancer foundation that raises millions each year, and Erin's Dream Lanyards. The reason to invite other childhood cancer foundations and fundraising efforts is simple: we (meaning the childhood cancer community) need to start working together. Touch A Truck is quickly becoming a festival of sorts, and there is plenty of room at Max's table for other childhood cancer organizations to join us at this event. Next year, we're going to try to bring even more childhood cancer organizations to Touch A Truck - in order to maximize awareness and giving... this should be exciting so stay tuned!

In all, we brought in $46,000* - all of which will go to childhood cancer research and treatments at the NMTRC.

An event like Touch A Truck happens in two ways: the first (and easiest) way is to hire an event production company and pay them to do everything. Who knows how much money would go to childhood cancer research - maybe less, maybe more - than what we raised this year with the aforementioned approach; the second (and way more difficult) way is to do it with unpaid volunteers and dedicated sponsors, and grind this sucker out - which is what we did in 2011. We have some of the most amazing volunteer leaders. Folks who hold high-paying, time-consuming jobs - that still, out of the goodness in their hearts - decided to commit 10/20/30 hours a week to making this 3rd annual Touch A Truck so successful.

Our expenses this year came in slightly under budget - that's good event management (ie, Melis!). We couldn't promise that 100% of the money raised at Touch A Truck went to childhood cancer research and clinical treatments if it weren't for our fabulous sponsors, whose time and money are the "fuel" which makes Touch A Truck happen! Thanks again to:
Mauzy Air
Aspire IRB
Building Industry Association (BIA Cares)
Semantic Research
Schoolhouse Realty
Athena Capital
Dixon & Thurston Orthodontics & Dentistry
Pfizer Oncology
Encinitas Sign-A-Rama
Merch Lackey (tee-shirts)
YMI (sound and video)
Anna Watts Photography
Johnson & Associates (who kept our money/CFO and venue safe - thanks Aaron!)

Finally, this event would be irrelevant if it weren't for the 4,637 guests we had the honor to welcome and entertain for 5+ hours last Saturday. Max taught us to serve others with smiles on our faces and in our hearts, and without your generosity and attendance, we would not be providing hope to kids fighting some of the most aggressive cancers with new and innovative therapies.

Thank you everyone and stay tuned for more news on Touch A Truck 2012 (moving to a new venue 'cause we have definitely outgrown this one!). We'll be publishing a survey soon in order to better understand what works and doesn't work at Touch A Truck, so that we can make some changes, makes some tweaks, and try some new ideas too. When the online survey is released, we'll publish the link here, send it out via email, and on Facebook, etc. - but please also pass it along to anyone you know who came to Touch A Truck (as guest, volunteer or exhibitor), since we don't necessarily have email addresses for everyone who attended.

Also, mark your calendars September 25, 2011 for Max Run II, now named Max's Ring of Fire Lemon Run because we've teamed up with Alex's Lemonade Stand! We are so excited to be working together, collaboratively, to make a huge impact in September, which is childhood cancer awareness month (part of the problem if we're having to remind you - the readers of this blog - when childhood cancer awareness month falls). Stay tuned for more information shortly forthcoming about MROF Lemon Run!

*46 (and it's variants) is a special number in the childhood cancer community. 46 children are diagnosed with cancer every weekday (every school day) - this is the inspiration for the 46 Mommas Shave for the Brave movement, which is one of the most inspirational and powerful singular statements by a group of individuals you will ever know.


Touch A Truck tomorrow

It's all for you Max. All because of you Max. All through you Max, that Touch A Truck happens. You have inspired tens of thousands of people to sit up, take notice, and take action - out of goodness in their hearts that was unlocked by you. You are missed, boy. We love you.


Max's story featured on New York Times website

We know we owe a long-overdue update. This isn't that update :)

I had a loooooong update almost ready to be set free on the Internet, when the blog company that Max's Cancer is hosted by - Blogger (owned by Google) - had some difficulties. I (along with tens of millions of others) lost a total redesign of the blog plus the latest update that I was working on. Needless to say, I'm taking a break and am waiting for Blogger to stabilize, as well as see if restore the work that I had saved last week.

Things are good for our family - we're very busy with Touch A Truck. In the middle of all the work that she does for Touch A Truck, Melissa found some time to tell Max's story for a Patient Voices feature on childhood cancer. Max's cute mug was up on the home page of the NYTimes and their health section for most of the day yesterday. Hopefully, the six powerful stories in this series will help the person unaware of the unique challenges and needs of childhood cancer become more aware, and ultimately, care.

We got the opportunity to participate in the Patient Voices feature from earlier involvement with the NYT on their Life After Cancer photo series, which featured a photo of Hannah and Nic along with one of our two "stand ins" for Max in family photos: Max's stuffed Bruce the Shark. The photo (below) was used in a British magazine in March, and is going to be used in an American Cancer Society photo book to be published later this year. This is all part of our continuing effort to keep Max's story out in the public as we have done so since he was diagnosed. It's a tradeoff - you and your kid's privacy versus awareness. I'm not sure which path Max would have chosen if he were in charge, but it continues to feel like the right thing to do. Until if feels otherwise, we'll continue.


Send some good thoughts the Axson's way.

From Nathan Axson's CaringBridge site this week. Nathan is NED. He has, however, been in the hospital for almost two weeks having some terrible difficulties with gall bladder blockage. While the docs don't think he has relapsed with NB, it is in the back - maybe front - of his mom's mind.

Uncertainty is so scary. But I guess not as scary as a confirmed relapse. I believe that it is something else. But I can't lie, I have to prepare for the worst.
I guess this is my new normal. Bouts of happiness interrupted by times of helpless, numbing fear.
I know that sounds depressing..but I am in a cold and dark hospital room, too far from my family. The love of my life sleeps next to me..blissfully ignorant, while I drive myself insane in front of this computer, searching for answers...wishing I hadn't learned so much.


Sam and Sydney

Two amazing, beautiful children from two amazing, beautiful families share a powerful connection on this March 12. One year ago, Sam Hutchison became the fastest angel in heaven. The photo below is from a collection of photos I never saw before, posted on a blog by another angel amongst us, photographer Deb Schwedhelm.

Sydney Marie Dudley is well-known to readers of Will Lacey's blog. Sydney's mom Rhonda posted the sweetest stories of Sydney during her fight against neuroblastoma. That Sydney and Sam should die on the same day is some sort of cosmic symmetry I'll likely never understand but in this crazy, mixed up (I had another word in mind that starts with an f but y'all know that about me already) world of childhood cancer, it's comforting to know that Sydney and Sam got to heaven within hours of one another.

Please lift these families up in your thoughts and prayers today. The first angelversary is bittersweet, at least from my experience. Relief comes knowing there are no more "firsts" to endure: First birthday without. First family photo without. First _________ without. Sorrow comes from realizing that this is the way the rest of your life will be... without.

We love you Sam and Sydney! Say hi to Max for us!



We saw Deb on Thursday. She hasn't graced our family with her talents (love + skill = magic) since April 2009. Nothing really I have to say, the pictures speak for themselves. Life is beautiful, yet we should be 5.


Sarah Jane Photography + So Childish = $2254

Thank you, thank you, thank you!

When Sarah called me a few weeks ago about this cute Valentine fundraiser, I had no idea how really and truly great it would become. Not that it mattered really - Andy & I were so grateful that someone offered to host a fundraiser for MROF. (I think that's the dream of anyone with a non-profit!)

I drove to my old 'hood on Thursday to meet Leyla, as she had offered us a place to promote Touch-A-Truck and sell tickets during the event. (I spent my teenage years in what is now referred to as "South Park" and let me tell you how it's grown into a very nice neighborhood.) Her shop, So Childish, is the cutest thing you could imagine. If you need baby clothes or a baby gift, you must shop here. The selection is unique and the prices are just right! And, of course, Leyla is a very sweet woman with a huge heart.
Saturday morning I arrived at the shop to find everyone setting up. Some of the offerings at the fundraiser were baby hand prints on ceramic, yummy cupcakes by Harina Dulce (see top photo), mommy jewelry by Starfish, a raffle featuring gifts from all of the guest vendors, So Childish and Sarah Jayne Photography, a craft table to keep the little ones occupied while they waited their turn for...
a super cute photo session with Sarah. (This is a photo I took with my phone and does not reflect the super cute shots Sarah captured.) Sarah took photos of 54 different children/families in less than four hours. She did more leg squats yesterday than I've done in the past five years. I'm pretty sure she may not be able to stand today! Sarah's photo sessions were definitely the real reason everyone was there with their babies and toddlers decked out in Valentine finery.

I know this was long-winded, but I feel so grateful and thankful to everyone who participated in this fundraiser, and I want everyone to know who you are! It was truly heart-warming to speak to each of you, hear your thoughts, and know that your heart was in this event... and it did turn out to be an event.

Thank you all and Happy Valentine's Day!


Prayers needed for a tiny baby - Maxwell Bulman

Please take a moment to stop and say a prayer for the Bulman family of Minnesota.


Max is not yet 4 months old and is battling neuroblastoma. He was diagnosed at 1 month old. The NB is not responding to treatment and this family could use a lift from all of us. Visit their web page, let them know you were there and that you care. It means more than you may ever know.