Max Mikulak 2008 (c) copyright Deb Schwedhelm
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


would not have happened, if

had not happened.

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


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

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...


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.



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



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.