The Bridge

I've started having "moments" - you know (or maybe you don't), your standing in line at the supermarket when you realize you're going to start crying and nothing can stop the moment.It happens just about every Sunday in church. It's the music really. Sometimes the tune, sometimes the words. They stir me up inside and cause the tears to just flow silently. Standing in the kitchen the other night, the kids eating dinner at the table with Andy, it really hit me how less noise there is in the house without Max. The sounds of three kids interacting was so different. The tears came. I'm not sure if I like this. Of course, what's there to like? I suppose the numbness is starting to wear off. I knew it would. My arm amputation is finally starting to hurt. Unfortunately there are no pain pills for this save tears and heartache.
My heartaches for myself, for my Max, for Hannah & Nic & Andy. I guess it's that mom-gene kicking in that wants to take everyones pain away, but knowing it's simply not possible.
Last night at bedtime, Nic said to me, "I like Max more than Hannah." I understand. They were closer in age, just like Hannah and Max were closer. The difference in age between Nic and Hannah is so great (6 years) and the bridge between them - Max - is gone. It's hard for them to interact. Nic talks about Max every night at bedtime. We read a book, sing some lullabies, then he says, "Let's talk about Max." I love that he does that.


You Can't Wish For A Cure, You Have to Work For A Cure

Another fantastic article in the Carmel Valley News highlighting the work that continues in the fight against neuroblastoma, and not only in San Diego, not only in Vermont, but across the country. Parents both working together and on their own are doing amazing things, including the Band of Parents , Ishan Gala Foundation , Friends of Will , and or course my old home, Magic Water , which continues (as it should) despite my leaving to focus on Max's Ring of Fire. Please take a moment to visit the websites listed above and learn more about what everyone is doing, in an amazingly uncoordinated but still synchronized focus of effort to push for the research and clinical application of therapies that will turn this killer into something benign. Post their URLs on your blog, facebook, etc to help spread the word and THANKS for continuing to come here and help remember Max along with us.

Max Mikulak’s father backs new alliance of pediatric doctors, researchers dedicated to finding cure for fatal disease.
By Catherine Kolonko

A Carmel Valley father who lost his son to relapsed neuroblastoma last year is championing a group of doctors dedicated to finding a cure for the fatal disease.

A new alliance of pediatric doctors and researchers in San Diego and across the United States are pooling resources to conduct multi-site clinical trials to test new treatments for children whose lives are at stake. Like Max Mikulak, a popular 7-year-old Carmel Valley boy who died last August, time is running out for these children because there is currently no known cure for relapsed neuroblastoma, a type of pediatric brain cancer that is diagnosed in about 600 children per year in the United States and has only a 30 percent survival rate.

Almost 80 percent of children with cancer become long-term survivors, but then there are 20 percent that don’t, according to Dr. William Roberts , an oncologist at Rady Children’s Hospital in San Diego who treated Max’s cancer. For children with relapsed neuroblastoma the outlook has been bleak.
Doctors and families fighting the disease share a frustration that while there are drugs that if tested might work for these children there is no business reason to pursue them. The approved treatment options are limited just because of the relatively small number of children affected by the deadly cancer.

This has culminated in the formation of a new clinical trials consortium, the TRC or Translational Research Consortium, with San Diego functioning as one of the four core sites, the others being Vermont, St. Louis, Mo., and Houston. Having more sites geographically situated throughout the United States should ease the burden of families with sick children who must travel to seek care for them.

Roberts said the consortium will allow doctors caring for children with neuroblastoma to compare treatments and diseases on a larger scale. The idea, which is not new but has proven beneficial, is to feed data to a central data base. “In one center we may see six to 10 kinds of neruoblastoma per year,” he said. But pooling efforts “allows us to learn much more rapidly.”

Neuroblastoma is an aggressive disease in which malignant cancer cells form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. By the time it is diagnosed, the cancer has usually metastasized most often to the lymph nodes, bones, bone marrow, liver and skin, according to the National Cancer Institute. Usual treatment options involve high doses of chemotherapy, radiation and stem cell transplant.

One of the doctors participating in the consortium, Giselle Sholler, of the University of Vermont , said she and others involved with the alliance came together in San Diego last month to begin the process of forming the consortium. They recently held their first conference call to discuss the plans for future clinical trials.

“We mapped out five other trials we want to get started this year,” Sholler said in a telephone interview from Vermont.

The first trial has already begun and with the first patient expected to be enrolled on March 19. The trial will test a drug called TPI-287, a new chemotherapy that will be used alone and in combination with other therapies, Sholler said. The idea initially started with the question of “how can we make it so families don’t have to travel so far” for treatment. The doctors who care for these vulnerable young patients also want to focus on treatments with quality of life in mind, which means investigating treatments that are lower in toxicity than traditional therapies while improving their conditions, she said.

Andy Mikulak, Max’s father, is excited about the consortium and what its future success could mean for children who face the same fate as his son. He believes it could nearly double the number of trials available for neuroblastoma patients.

“It’s great for kids. We basically blanketed the U.S,” Mikulak said.

Sholler said she finds inspiration from children facing such difficult battles who, with the love of their families like the Mikulaks, fight the disease with a smile and cheerful outlook.

“It’s such an honor to be able to care for them,” she said.

A key benefit to the consortium is the faith it can give families to carry on in their battles against this devastating pediatric disease, Sholler said.

“I think this going to bring a lot of hope to families…I think it’s needed,” she said.

Sholler said that she admires the Mikulaks’ efforts to continue to look for answers after their son’s death. “It makes my day more meaningful,” she said.

Though he does not work for the consortium, Mikulak, a marketing executive, said he feels a strong connection to those involved because they also participated in the care of his son. “Max was kind of the common link that started their collaboration” he said. Mikulak sees himself as “an advocate connector, who ultimately represents “all the neuroblastoma kids,” he said.

While the alliance is just getting off the ground, there are six other institutions interested in joining the consortium, Roberts said. “There’s this excitement to saying ‘Wow this may be useful’.”

Meanwhile, Mikulak and his wife Melissa have decided to devote their energy to raising awareness about the disease and funding for future clinical trials sponsored by the consortium, he said in a recent interview. They recently formed a charity in their son’s honor called Max’s Ring of Fire and are planning a fundraising event for later this year. The charity is so named because Max loved the song Ring of Fire, especially the version by Social Distortion, said Mikulak, who noted in an email that the ring also symbolizes an interconnected loop of people joining the efforts to find a cure for neuroblastoma.

“It is amazing as we grow this ring, this circle of people touched by Max's story, what has happened so far and what will likely happen,” he said.

Mikulak’s faith in Sholler and her work is based on his experience with her during Max’s most difficult days before his death, he said. She gave him her cell phone number and responded quickly to an email Mikulak sent on one particularly difficult night with Max’s disease.

“She just cares so much about these kids,” Mikulak said. “She is in this thing 24/7.”

It was that dedication and passion plus her dual work as a researcher and a clinician that prompted Mikulak and his wife to decide to focus all their fund raising efforts on promoting her work.

Mikulak was introduced to Sholler through Max who was involved in a phase 1 clinical trial designed to test the safety of nifurtimox that in lab testing appeared to have anti-tumor properties. The antibiotic previously used to treat a child for a parasitic disease known as Chagas appeared to shrink or kill neuroblastoma tumor cells. Sholler’s findings eventually led to the phase 1 clinical trial that included Max as a patient.

A phase 2 clinical trial headed by Sholler is underway in Vermont to further investigate the use of nifurtimox alone or in combination with other drugs as treatment of relapsed or refractory neuroblastoma and medulloblastoma.

Mikulak first became involved in fundraising for neuroblastoma through the Magic Water Project which he cofounded with Neil Hutchinson, another father who has a son with the same disease. The organization is dedicated to funding cancer research on relapsed neuroblastoma and medulloblastoma and funds clinical trials and other research on innovative, low toxicity treatments.

The day after a memorial celebration for Max, a few hundred people participated in a walk in Balboa Park to raise money for the MagicWater Project. Just over $18,000 was collected from the fundraiser, which was sponsored by RealAge.com , Mikulak’s employer. When plans to fund million dollar scanner a Rady’s Children’s Hospital hit a snag, the money from the walk and other donations totaling $30,000 was instead used to purchase equipment in Dr. Sholler’s research lab, Mikulak said.

Mikulak has since left the Magic Water Project so that he and his wife can devote there fundraising efforts to Max’s Ring of Fire, he said. They started the charity after Max died in part for the same reasons many parents do after their child dies — they want to memorialize their children and the battle they fought, Mikulak said.

“I wanted to tell the story of Max’s battle,” he said.

With the help of a neighbor Max and his wife have filed the paperwork to form their charity. They are in the early stages of planning the charity’s first big fundraiser, dubbed Maxapalooza, for some time in August in what they hope will be an annual event. More information on the couple’s fundraising efforts are chronicled at the new website http://www.MaxsRingOfFire.org/ .


Test Pilots

Max at last year's Clash

Tomorrow, Melissa is volunteering at the Clash At Clairmont III, a really great skate-themed fundraiser for cancer held in San Diego every year. Last year, I took Max and we got hooked-up with great all-access passes courtesy of Lisa Sturt's husband Daniel (also responsible for the awesome Star Wars video). Lisa was Max's first grade teacher and was his second grade teacher as well but then you know how that story goes....

March 2008 was so incredible. Legoland (2x). Kustom Kar Show at Del Mar. Pinewood Derby. Clash at Clairmont. We knew. We just didn't admit it to ourselves. I hold on to those memories of some of the last relatively carefree days with Max so tightly. They are more precious than anything that could ever be.

As Melissa posted a couple of days ago, we've had a good week for Maxapalooza. Everything depends on the venue. And the venue that was needed was not "normal". After all, a WWII/Skate/Lego/Punk Rock/Star Wars-themed event does not take place at your local Holiday Inn Suites ballroom (not even the grand ballroom). On our last trip to Disneyland, weeks before Max died, we sat in California Adventure in the Condor Ridge area next to Soaring Over California (next to Star Tours, Max's fav ride). The soundtrack to The Right Stuff plays over the scene. Airplane hangars; the Jet Age; the Right Stuff. it was all perfect. I remember sitting there, looking around, knowing what was to come soon, and thinking: This is it. This is the theme of Max's life. This is what Living Life to the Max means. It means even though the plane that you are about to climb into has never been flown before, you climb in anyway. Max, and those test pilots, had no other choice. It was live life, to the fullest, no matter the outcome.

Here's the lineup so far:
- September 26 *may change, stay tuned for details.
- Palomar airport, Carlsbad (Premier Jet is sponsoring - thank you!!)
- P51 Mustang in bitchin' olive drab and red/yellow checker (red/yellow make orange ya know).
- Other warbirds (WWII fighters) TBD but likely.
- Flyover by F-5, F-18 and hopefully a warbird - missing man formation likely.
- Skate program TBD but looking good.
- Band TBD but lot's of options and connections to run down.

We need some help. If you or someone you know is interested in helping us out with the following, please contact me!
- Web producer - integrate myriad transactional (donations/auctions), social networking (blogs), etc.
- T-shirt/apparel designer(s) - to produce a line of MROF (that'd be Max's Ring of Fire) merch via Zazzle or other.
-Facebook/social media guru - someone to build/maintain a shiznit presence on Facebook, Twitter, Flickr, etc (we have a great group on Fb already thanks to Shannon - come join us!).
- For Maxapalooza, an event coordinator/manager so Melis and I can leave the details to someone else while we focus on big picture (i.e., $$/guest experience) stuff.



Had a great Monday, although I wasn’t expecting it to be…

You see, we’re planning our first annual fundraiser, Maxapalooza. There are certain elements that we absolutely have to have at the event in order to really make it a proper Max memorial. Of all the elements we have been hell bent on honoring, the biggest two are planes and skateboarding – two things, we have found, that are hard to combine from a logistical point of view. I’ve been searching for the right venue since November and am getting ready to cave. Any dumb parking lot will do.

Back to Monday…
Friday night I had volunteered at a big fundraiser for SD Childrens Hosp and had a post-event meeting scheduled to attend Monday morning. That morning I received a call saying everything went great at the event and the meeting isn’t necessary. So after dropping Hannah & Nicky off at their schools I headed home and decided to make one more call to Palomar Airport to try to get a hangar for Maxapalooza. My first call gifted me with the name and number to one of the biggest hangars at the airport. I phoned and he explained that renting hangars for events isn’t in their standard operating procedures, but they’ve done it in the past and he had a space I could look at. “Great,” I answered. “I can be there at 10:00.”

Thirty minutes later we’re opening the door to one of the hangars he had in mind and guess what’s parked inside. P51 Mustang. I stood there staring, “Is that a Mustang? That’s Max’s favorite plane.” I don’t think he believed me. ha ha!The space ended up being great. Very close to what we had originally hoped for. This turn of events on a Monday morn has me feeling great. (Oh – Social D’s Ring of Fire played on the radio on my drive home.)

Later that afternoon my hangar contact calls. We’re on speaker phone with another person who works at the hangar. They had opened Max’s Ring of Fire website and saw right away that I wasn’t kidding about the P51. They read about Max and what we are trying to accomplish in his memory and were totally excited about the event and about helping us with it. They had placed a call to the owner of the P51 to see if we could feature it at the event (yes!), and had already thought of more guys to call who own warbirds. They’re also hooked into the skateboarding industry as a nephew is sponsored by Grind for Life (the event I’m volunteering at this Saturday)! (Talk about coming full circle.)

I returned to the airport Tuesday morning to go over the paperwork necessary to host an event at the airport. Once the paperwork is approved by the county in 2-3 weeks we can prepare for launch! I ask what the cost of the space will be and they offered to sponsor the space for Maxapalooza. Wow, and thank you.

Can you believe this? My head is still spinning. Just when I was about to give up on this whole airplane thing everything falls into place – better than I could’ve ever hoped for. I’m not sure if I’m more excited or more relieved! This event is going to rock!

Dumb luck? I don’t know. We see signs of Max everywhere we go. Some more obvious than others – like a P51 Mustang parked in the hangar I’m looking at. I started really feeling and thinking differently about Max’s Ring of Fire on Monday. What it means to me. It’s not just a song Max sang and the name of a non-profit org. I’m not sure I can write this clearly… there’s this ring that is Max. And it’s spreading out; growing. Capturing more people, who in turn push the ring out to encompass more people. It doesn’t weaken as is expands, it becomes stronger. Love is a burning thing, and it makes a fiery ring. Jump in our ring. Let's make this thing big!


Clash@Clairemont3 March 14, 2009

Thought I'd plug another great fundraiser coming up this weekend - I will be there all day volunteering/working. This event is open to the public to watch the biggest names in skateboarding and BMX stunt riding on the largest outdoor vert ramp on the West Coast. A $10 donation will let anyone in the door (6yrs and under are free), and includes food, drinks, raffle prizes, and much more and benefits the YMCA and “Grind for Life,” an organization that provides financial assistance to cancer patients and their families. This is an excellent venue for families to experience skateboarding at it's best. Hope to see you there! (The photo above of Max on the vert ramp was taken at this event last year.)


Cody 3/6/9

I've been following Cody's blog for some time. About 6 weeks ago, his neuroblastoma took a turn for the worse. For me, it was especially hard to watch because his decline so closely resembled Max's. Every angel parent, and justifiably so, is convinced that losing their child is the greatest trajedy of all. For me personally, losing Max at 7 and Cody being 6 is especially tough. At their ages, they have developed complex personalities. They are reading, writing, expressing themselves. As parents, this age is one of transition and rapid growth. We can 'hang' with them at this age. As boys, they begin to understand the finer qualities of things with pistons, things that burn fuel, and things that explode or perhaps cause other things to explode. Important stuff when you're a boy (or an older boy that just so happens to have to work for a living).

Cody loved Legos. Tonight, me, Nic and Hannah will build Legos in Cody's honor. If I'm right about this, Max and Cody are working on their Lego Jungle Cutters up in heaven right now.