Max Mikulak - neuroblastoma angel

Thirteen

noreply@blogger.com (Andy (Dad to Max)) — Mon, 30 Jun 2014 23:39:00 +0000

Max playing a game while getting platelets in 2008. Love that spirit!

6/30/14 - this would have been Max's 13th birthday and to celebrate we're going on a family hike and will eat crab - Max's fav - for dinner.

Max's urn accompanied us on his 13th birthday hike.

As usual, we allow ourselves to be smitten and torn up at the same time, remembering good times while imagining what Max would be like as a teen. We see his friends, and wonder who he would be taller than, or hanging out with more often. Would he be playing a musical instrument? Still playing with Legos? As the only one of our three kids to have ever picked up a baseball bat and glove for an organized league, would he have played more small-ball?

This birthday as in years past, we organized a weekend party with some of Max's friends, first stopping at Rady Children's Hospital to drop off some gift bags at the HemOnc unit, then to In-N-Out and then Dave & Busters. It's good to see these boys - some of whom we see throughout the year and some only once a year at this gathering. Its funny... some of the boys are now taller than Hannah (age diff ~2 years). I wonder if Max would have been taller than his older sister by now? Questions...

We hope this gathering of Max's friends continues for many years as it keeps us connected to that age and those happy times that Max had with every one of them.

Matt, Jayden, Nic, Dylan, Jack, Hannah, Chris - their "album cover" photo in remembrance of Max.

We've received so many blessings inspired by Max this month. From Touch A Truck on June 7th to our church's KidsGames this past week, where Max's Ring of Fire was the compassion project and over 500 kids heard Melissa tell the story of Max and all the good that has been done because of him and for kids fighting cancer. And in the course of those activities which raise money and awareness for childhood cancer, we've received many amazing notes from kids, parents, and even one of the actors in The Fault in our Stars who wrote to let us know that our blog helped him understand what it was like to be a parent to a child with cancer.

Live Life to the Max.

The Why

noreply@blogger.com (Andy (Dad to Max)) — Sat, 29 Sep 2012 12:36:00 +0000

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.

The asterisk* in the room

noreply@blogger.com (Andy (Dad to Max)) — Fri, 31 Aug 2012 17:06:00 +0000

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!

Buy tickets to Touch A Truck
Donate
Sponsor
Volunteer
Bring your car
Register for MaxRun

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.

Eleven

noreply@blogger.com (Melis) — Sat, 14 Jul 2012 03:48:00 +0000

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

KidsGames

noreply@blogger.com (Andy (Dad to Max)) — Mon, 02 Jan 2012 16:48:00 +0000

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.

Tangible evidence

noreply@blogger.com (Andy (Dad to Max)) — Thu, 01 Sep 2011 03:45:00 +0000

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.

Max's visit

noreply@blogger.com (Andy (Dad to Max)) — Tue, 23 Aug 2011 05:29:00 +0000

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).

After

noreply@blogger.com (Andy (Dad to Max)) — Thu, 14 Jul 2011 15:22:00 +0000

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)

After
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
loves;

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

noreply@blogger.com (Andy (Dad to Max)) — Fri, 01 Jul 2011 04:42:00 +0000

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)
ASSESSORY: Hat

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!

noreply@blogger.com (Andy (Dad to Max)) — Mon, 13 Jun 2011 14:50:00 +0000

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

noreply@blogger.com (Andy (Dad to Max)) — Fri, 03 Jun 2011 15:55:00 +0000

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

noreply@blogger.com (Andy (Dad to Max)) — Fri, 20 May 2011 18:52:00 +0000

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.

noreply@blogger.com (Melis) — Thu, 31 Mar 2011 04:34:00 +0000

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

noreply@blogger.com (Andy (Dad to Max)) — Sat, 12 Mar 2011 14:26:00 +0000

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!

Light

noreply@blogger.com (Andy (Dad to Max)) — Sat, 12 Feb 2011 06:42:00 +0000

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

noreply@blogger.com (Melis) — Sun, 06 Feb 2011 15:33:00 +0000

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

noreply@blogger.com (Melis) — Tue, 01 Feb 2011 04:28:00 +0000

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

http://www.caringbridge.org/visit/maxwellbulman

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.

Blessings

noreply@blogger.com (Melis) — Thu, 09 Dec 2010 05:55:00 +0000

Our holiday misery has been buffered this year by several blessings.

My most recent Touch-A-Truck meetings have been joined by more new faces!
A man emailed us last month with a request to allow him to give part of the proceeds from a ProAm golf tournament that he is producing to MROF.
A friend told me her daughters were comparing throw-up stories and Max was prominently featured in the discussion (yes - we smile about his kind of stuff).
A high school girl in Pasadena phoned to ask if it would be alright if she hosted a fundraiser at her school to benefit MROF.
Last weekend one of the boys in our church family (Z-Dog) handed us an envelope with a note inside that said:

Dear Mikulak's,
I'm giving $15 to you for Max's Ring of Fire to help you prevent other kids from getting cancer and to support your events. Please take this money as an act of kindness from me to you.

Lisa Sturt emailed this:

Last night I was at an event sitting next to a teacher who recently retired. She either worked at SP or Carmel Creek, I'm not sure which. I was relieved that we had little name plates to jolt my horrific memory as to her name. But she has a keen memory! After the usual hi-how-are-you's, she wanted to know how Max's family is doing. Know that Max and you are thought of even by people you don't know (and people whose names I can't remember!). We talked a bit about Max and soon she had tears. He was pretty incredible! To think of the impact he has on people to this day...people he never even saw. He was/is a gift!
xolisa

Thank you, thank you, thank you, for your kind thoughts and letting us know that you think about our boy, too. From Halloween to New Years, it's more of a struggle to be without one of our kids and it means the world to know he's not forgotten, but remembered fondly and frequently.

I took this from an angel parents' facebook post:

If you know someone who has lost a child, and you're afraid to mention the child because you think you might make them sad by reminding them that they died - you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that the child lived, and that is a great gift.

Childhood Cancer Holiday Shopping Guide

noreply@blogger.com (Andy (Dad to Max)) — Thu, 02 Dec 2010 23:55:00 +0000

People Against Childhood Cancer (PAC2) is a great organization. Started by Bob Piniewski shortly after his son AJ passed away from Burkitt's lymphoma on January 5, 2008, PAC2's purpose is simple, but necessary: One Voice United Against Childhood Cancer.

Unfortunately, PAC2 is also currently a website that requires registration. So rather than just linking everyone to a site and expecting you to register in order to see what the heck I'm talking about, I've posted the Third Annual PAC2 Holiday Shopping Guide below. Please take a look, and either forward this page or share via Facebook and Twitter with your friends. Maybe someday childhood cancer can enjoy the same level of outrageous commercial attention that pink ribbon gets.

Oh, and don't forget to order your holiday cards featuring Max's artwork.

2010 PAC2 Holiday Shopping Guide

In the spirit of collaboration amongst childhood cancer charities - we've created the Third Annual PAC2 Holiday Shopping Guide. What better time than the Holiday Season to work together to benefit the kids? The list below highlights gift-giving opportunities from some great organizations - all benefiting childhood cancer. We apologize in advance for those not listed (please contact us if you want to be added!). If you don't find what you need here (you are pretty picky!), maybe one of the organizations here or here catch your eye. All the pictures are active links to the cause referenced below (or so we hope). Happy Holidays!

The CureSearch Holiday Gift shop offers a wide variety of items including artwork from children touched by cancer and their siblings to raise awareness and funds for childhood cancer research. You can buy a tie, a Reach the Day - Gold Ribbon key chain, or order your Holiday Cards all in benefit of CureSearch and COG!

From our good friends at Alex's Lemonade Stand Foundation: Do YOU have YOUR ALSF Inaugural Holiday Ornament ordered yet??? Or maybe that snow got you cold? Well then pick up a ALSF Hooded Sweatshirt silly! Or, for the guy that's got everything: A Sponsorship to the 2011 Lemon Ball.

I like the Irish. They have great beer. But what to drink it in and STILL benefit childhood cancer?? Obviously a St. Baldrick's Stein. That's just one example of the great gifts available at the St. Baldrick's Gift Shop or Store.

The Holidays are a time of peace and love and what better way to share it than The Rally Foundation Peace, Love and Rally T-shirts or Rally Holiday Cards?

All kids love soccer balls from the Andrew McDonough B+ (Be Positive) Foundation! And mom and dad need the B+ Coffee to get the kid to practice on time!

Who doesn't like cookies? No one! So how can you go wrong giving the natural gourmet cookies made by Cookies for Kids Cancer as a delicious holiday gift for anyone on your list? They taste as good to eat as it feels to give. And, Glad is matching bake sale proceeds thru the end of 2010, up to $200k, so have one today!

Flowers anyone? Try The Lemon Bouquet to benefit Alex's Lemonade Stand, or ProFlowers where $10 of your order will be donated to CureSearch.

How about giving a gift to a kid with cancer? Your $20 will send an Elf and a book “A Gift from Catie” to a pediatric cancer patient and $5 will also be donated to CURE Childhood Cancer.

Those darn calendars again....keeping track of stuff. Reminders. Ugh. If you want do that kind of thing, get your calendar at 46 mommas shave for the brave and benefit St. Baldrick's.

The artwork featured on Cure to the Kids holiday photo cards has been created by a nationwide group of pediatric cancer patients, by artists, and by siblings of pediatric cancer patients who are greatly impacted by the disease.

Holiday Shopping with Pablove

The Pablove Foundation is your one-stop shop for all of your holiday gifting needs. Spoil your favorite cyclist with one of our stylish Pablove kits, jerseys, or helmets. Buy our new Pablove Shutterbugs or I Pablove NOLA T-shirt. We have Pablove gear to fit everyone on your list, and your purchases contribute directly to our mission to help kids and families dealing with cancer.

AND - as a catch-all, just do ALL your shopping via http://www.igive.com! Register with iGive, select a charity, like Alex's Lemonade Stand. St. Baldricks, Cookies for Kids Cancer or CureSearch, and shop at some popular stores like Nordstrom, Gap, Home Depot, Amazon.com, etc... and a portion of the sale will go to your selected charity!

Or, how about:

New additions to the family this year? Get your baby clothes at Big Heart Baby and benefit CureSearch.
Is your giftee into Bears? As in Bear Necessities Pediatric Cancer Foundation! Then you need to check out the Bear Necessities Gift Shop for teddy bears, bear bracelets and more!
How about for the cook in the family you want to keep cooking so you don't have to? The Greg Norman Wine Estates Cookbook will keep 'em cooking for decades, and benefit CureSearch!
There's always the St. Jude Gift Shop or HSN Designer Ornament Collection that benefits St. Jude.
Beautiful one of a kind handmade lanyards and eyeglass chains made by family and friends of a neuroblastma angel. All proceeds benefit Children's Neuroblastoma Cancer Foundation at http://chooseaverb.blogspot.com
Handmade keychains and necklaces made by Anna and friends. Anna is a 25 year old neuroblastoma warrior. All proceeds benefit Anna's Hope, a charity that benefits neuroblastoma research. www.annashope.com
How about some Wahoo Chili to keep everybody warm? Benefiting Riah's Rainbow, a non-profit organization that donates crayons, markers, crafts, etc. to children receiving cancer treatment.(www.riahsrainbow.org).
BeatCancerToday.org - will have Beat Cancer shirts available again on the website starting around Thanksgiving time. We have several team colors and shirts will be $10. Proceeds go to CureSearch. What a great way to get out our message and support childhood cancer research.
Looking to party? Then you have to hit the Children's Brain Tumor Foundation Annual Holiday Party Dec. 12th at Beth Israel-Phillips!
How about stuffing stocking with childhood cancer awareness magnets from Arms Wide Open Childhood Cancer Foundation?
Hyundai Hope on Wheels has some great coffee mugs and other stuff that benefits COG hospitals.
Get your Aflac Duck here and benefit Aflac Cancer Center and Blood Disorders Service.

Awareness = Funding = Research = Cure

noreply@blogger.com (Andy (Dad to Max)) — Wed, 01 Dec 2010 14:55:00 +0000

I realize its been a while since we've posted an update. We'll post soon on holiday-related stuff. Today, I wanted to let you know about a couple of things that came out recently. When combined, I hope the pattern is as obvious to you as it is to me. Read below and then click on each piece of media. Do you notice the pattern? OK, perhaps its only obvious to me.... the pattern is that all three of these media came about as a result of a child dying from cancer. I wished these were instead stories of survivorship. Too often, as the Wall Street Journal story, that spawned the letter to the editor below, mistakenly reports, childhood cancer is portrayed as one of the areas where we've had a "victory" in the war against cancer. This misinformed point of view was even adopted by former supreme court justice Sandra Day O'Connor as she argued for more funding for alzheimer's research, now that medical science can cure "formerly intractable diseases like typhoid, polio and many childhood cancers."

The Grim Statistics On Pediatric Cancer (Letter to the Editor Wall Street Journal)
This is a letter to the editor from parents of two children (Penelope and Hazen) that died from neuroblastoma. John and Scott have been relentlessly pursuing a cure for childhood cancers through their foundation Solving Kids Cancer.

Picture Your Life After Cancer (New York Times Multimedia feature)
This is a multimedia feature on the NY Times website. Hannah (with our stand-in for Max) and Nicky's picture (and the story behind why they were featured), will also be featured in the British magazine Easy Living in March '11. The goal here was to insert a childhood cancer story into what was mainly an adult cancer story of survivorship - to remind readers that the war has not been "won" and that the "survivors" of childhood cancer are frequently the affected child's familes.

Photography Interview with Deb Schwedhelm
This is what I call Trojan Horse awareness. Into what otherwise could be an everyday piece of media, a childhood cancer story takes over. This is where the storytelling we've been doing of Max has been so effective - reaching people who may pass over the headline containing the words "childhood cancer." Deb's continued awareness raising of childhood cancer is, like her photographs of Max and our family, priceless.

Holiday Cards Featuring Artwork by Max and Other Awesome Kids!

noreply@blogger.com (Andy (Dad to Max)) — Mon, 25 Oct 2010 02:16:00 +0000

This holiday season, it will be very easy to take something that most of you already do, and turn it into something that helps kids fighting cancer.

The artwork featured on Cure to the Kids holiday photo cards has been created by a nationwide group of pediatric cancer patients, by artists, and by siblings of pediatric cancer patients who are greatly impacted by the disease. When you purchase your holiday cards this year, you can help change the future for these children by ensuring they are alive to experience it.

Max made this snowman in December 2007, right before things went awry and his cancer effectively started to explode in him.

By buying your holiday cards via Cure to the Kids, 50% of the purchase price will go to the NMTRC - which is the childhood cancer research and clinical trials consortium that was started, and is led by, Max's oncologist in Vermont Dr. Giselle Sholler.

BUY NOW!

Purple, vacuums, and a little boy named Lucas

noreply@blogger.com (Andy (Dad to Max)) — Sat, 16 Oct 2010 14:20:00 +0000

Three years ago today Lucas Tran died. His story and battle was one that I followed diligently throughout 2007, ironic that it would somewhat parallel our own experience with Max not more than 10 months later in 2008. I always felt a particular fondness for the Trans, beyond the intense affinity that I feel for any other family and child going through the nightmare of relapsed neuroblastoma, or any childhood cancer for that matter. But knowing that your child is doomed to die soon, perhaps painfully, while you just sit and watch it all happen, understandably brings strangers closely together even if they've never met before.

The Trans lived in Palo Alto when Lucas was alive. After Max died, I heard that they moved about 10 miles away from us in San Diego. GOOD, I thought. We would finally be able to meet. We've since seen them from time to time, and it always makes me feel good to be close to such good people that have suffered so much, much like ourselves.

Strange as it may seem to outsiders (ie, not angel parents due to childhood cancer), a powerful, brave, poignant, yet delicate photographic slideshow of Lucas' life, death, cremation and celebration of his life on their website, inspired us when we were forced to walk the same path with Max. It's important that we all remember the cost of this disease. It's children suffering intense pain. Dying. Families shattered. The brutal reality should not, can't, won't be forgotten. That's why it's important to show the world not only the smiling pictures of our cute bald kids, but the not-so-nice ones too. After all, as Hannah so eloquently wrote, "death is a natural as birth."

Lucas loved the color purple, and vacuum cleaners. Today, the Trans are going to enjoy some purple ice cream and vacuum around their house. We're going to do the same. Please join us or visit Lucas' site to let they know you were there, and remember.

Touch-A-Truck 2011 - Volunteer Call!

noreply@blogger.com (Melis) — Tue, 05 Oct 2010 05:18:00 +0000

We are waving the green flag here at
Touch-A-Truck San Diego Headquarters!
Yes – planning for 2011
has begun and we need
YOU
to make it to the finish line!

Follow this link to the MROF website to view the volunteer opportunities.

Once you've had a chance to look it over, call or email me with any questions. I'm here to help and get you excited about our next event and your role in bringing it to the finish line! Join our Pit Crew!

I Am

noreply@blogger.com (Andy (Dad to Max)) — Sun, 26 Sep 2010 14:15:00 +0000

I am a generous girl who likes to read.

I wonder if someone will ever create the flying pill.

I hear lines from stories tumble around in my head.

I see people creating great things.

I want to be able to fly.

I am a generous girl who likes to read.

I pretend I am the smartest scientist ever.

I feel people hugging me lovingly.

I worry if someone else in my family will die.

I cry when I remember Max.

I am a generous girl who likes to read.

I understand that death is as natural as birth.

I say everyone is equal.

I dream about my life in the past, present and future.

I try to be helpful.

I hope no one else in my family will die.

I am a generous girl who likes to read.

By Hannah

September 2009

Buy a Hyundai, Help Find a Cure for Childhood Cancer

noreply@blogger.com (Andy (Dad to Max)) — Tue, 21 Sep 2010 13:31:00 +0000

I admit the title of this post sounds a bit trite, but it's also true. I figured it was time to recognize automaker Hyundai for their amazing support of childhood cancer. By the end of 2010, through their Hope on Wheels charity program, Hyundai will have awarded more than $23 million dollars to children’s hospitals and non-profit organizations across the U.S. to support the fight against childhood cancer.

Dr. Giselle Sholler at UVM was just awarded a $100,000 grant that will be used to help finance the work that her lab is doing and the clinical trials available through the NMTRC. That's a lot of money for a corporation to donate to a specific program. And they're doling out 68 of these $100K grants this year (that's more than the American Cancer Society and Leukemia and Lymphoma Society doled out for childhood cancer causes last year combined!) Kudos to Hyundai for taking a leadership role amongst companies that sell products to parents, by tackling what we all know is a challenging and emotionally charged issue like childhood cancer, instead of something "easier" like literacy. There are many fine companies that support childhood cancer research such as Volvo and GLAD, but Hyundai leads the pack.

My next car will be a Hyundai, for sure.