Train Ride - June 27, 2009

Max at his Make-A-Wish August 2005 - Griffith Park LA

On Saturday, June 27th, to kick off Max's birthday week, we'll be taking a ride on the Pacific Southwest Railway Museum's Golden State Excursion. We'd like to invite one and all to join us for this little trip on an old train in honor of Max.

Saturday, June 27th

11:00am

Way out in Campo (It's probably going to be HOT)

Tickets are available at the link above, just be sure to select the 11:00am ride. Wear your Max attire (orange)! (If you're interested, Andy designed some t-shirts that are pretty cool, click here.)

We will post more about Max's birthday week as soon as we have it all nailed down. I think Max's birthday is the hardest thing for me to face so far. It's such an odd sensation not visualizing growth from one of your kids as their birthday approaches. Everything stands still at this point, and the "forever 7" doesn't seem so sweet at times like that. But I know with the support of all our Max followers we will weather this and be stronger in the end.

Life is a constant challenge, but it is worthwhile

Xinxin passed away on January 10, 2009. Her mom posted this recently. No matter where you are in your life, what a friend of hers wrote below reaffirms what we all know is true. Make sure you click the link below to read the balance of her friend's wisdom.

Have you ever observed the behaviour of birds in the face of adversity?

For days and days they make their nests, sometimes gathering materials brought from far away

And when they have completed the nest and are ready to

lay eggs, the weather, or the work of humans, or some

animal, destroys it, and it falls to the ground, all that they

have done with so much effort

Do they stop? Continue the challenge here

Erin....

The first likely female president of the United States (don't believe me? read this) passed away from neuroblastoma today at the much too much early age of 11. As any of you who followed Erin's story via her parent's blog, her bright face was what you saw in the dictionary when you looked up the term "full of life". She also happened to to have her picture featured when you looked up "smart", "savvy", "worldly", "fun", "amazing", and "crafty". I am not being overly dramatic when I say that our country and our world lost someone great today. You just knew Erin would do amazing things for society.

And we're worried about saving GM....

A place for Max

This is Max's urn being created. The artist has been kind enough to give us a window into the creation of the vessel that will become the final, final home of Max's earthly remains. Click here for a neat little slideshow that Chris (the artist) put together for us. We can't wait to see it, touch it and place Max in it.

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.

Signs

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.

Three things...

I read two things today that struck me and brought tears to my eyes. One just flat out made me cry.

#1 - (tears) received an email today from my friend, Leigh:

Hi Melissa and Andy, I just wanted to share this personal blog posting with you. I thought you might like to hear how your son still inspires me every single day. Love,Leighp

Big Bear and Max Mikulak At Big Bear, I skied!!! The last time I skied I was 13 years old. I had gone on a youth group ski trip with my best friend from church, Chip. He thought he would be funny and take me up to the highest slope---we were in Vail, CO. I think it was a black diamond, but I don't know my way around the codes and colors, so it could have been purple stars. Seriously though, I was terrified of the chairlift, so he said we would ride to the top to overcome my fear. Hmmm....no one said anything about not being able to ride back down. So there I was, never a ski lesson and barely a pair of gloves---freezing my butt off and absolutely terrified. I started pizzas and french fries (that much I remember him teaching me), but when I couldn't see the slope in front of me because it was so friggin' steep, I panicked. Well, panic led to more panic, which led to tears, which turned into me not being able to see because my goth eyeliner was on so thick that I was now blinded, and before you knew it, I was rolling downhill rather than skiing downhill. The biggest problem was that my ski didn't pop off, so I rolled and rolled and rolled and my leg twisted and twisted and twisted. Finally, the thing that stopped me was another skier going at the speed of light crashed on top of me. I got my my wish that day though... I had really wanted to ride a snowmobile. Lucky duck that I am, I got that ride. So I broke my ankle, wore a cast for 5 months, and the only thing that kept me from killing Chip was that I had to ride home on the bus for 11 hours, but I got to ride in the front seat while the other possessed demonic heathen youth rode in the back.

So I tell you this story to show you the power of Max Mikulak and that little orange bracelet. Chip died when I was 21, and I vowed I would never ski again since he wouldn't be there to watch me fall and laugh like a silly school girl. But then there is that bracelet that says Live Life to the Max that I wear every single day. And I thought about how forever 7 Max wouldn't be able to ski down that slope. I wanted to overcome that fear of the chairlift, the fear of putting on those ski boots after that stupid Achilles surgery, the fear of not having my kids succeed at skiing because their fearful, overweight mom couldn't get past the embarrassment of not fitting into a pair of cute southern California girl ski overalls. Well....I skied, and it all fit just fine. I rode that chairlift... alone!!! I rode and smiled, with tears falling down my cheeks. I sang and sang the whole time (maybe as a distraction---I did that when I was 3 years old and my family thought it would be funny to strap water skis on my chicken legs and pull me going 35ph behind a motorboat.) But what stands out the most was how close I felt to Heaven on that ski lift. Then, getting off was even better. I convinced myself that I would not fall because if I did, I had no idea of how I was going to get back up. So, I hopped off the lift, and moved my feet back and forth until before you know it, I was out of the way and the lift hadn't thumped me upside the head after all! Better than that, I skied! Down the hill...all the way...on two legs!!!!! I went up and down, up and down, up and down. I couldn't get enough. It was the biggest adrenalin rush I had experienced since childbirth. And while I can't honestly say that I felt Max with me the whole time (that kind of spiritual presence I think is reserved for the closest friends and family members), I will say that his story inspired me to get over my fear, get on that lift, and get my butt down that hill.

#2 - (tears) a writing by Erik Ludwinski in 2006 after relapse #2, perhaps an insight to what our children with NB have going through their heads, but can't voice it because they're simply too young.

Donna, Erik's mom, wrote today: I have been thinking so much about the hardships and tragedies that dot this NB landscape. My perspective is limited to the parent perspective, of course. I can't ever imagine what these kids really go through. We ran into Erik's BMT doc during our last visit to the hospital... and a flood of memories hit me since we haven't seen this doctor since he told us Erik had relapsed again, a year after his experimental second BMT. This was just a few months after Erik's short marriage collapsed, and Erik was severely heartbroken. The doctor hugged each one of us. Everything looked so grim. Fast forward 2.5 years: I wish so much every NB child could enjoy the same quality of life Erik lives today. I wanted to share with you what Erik wrote about a month after that news:
Friday, December 22, 2006 5:36 AM
Last night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?
I've been called a lot of things since I started treatment. "Hero" "Awesome" "an
Inspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day.
And what about all my fallen comrades? Does anyone know how guilty it can make you feel? Cancer doesn't just mess with your health--it changes your whole mindset.
Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.
Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It's not that hard to completely brighten someone's day. Thanks for reading this, and pray that I get more chances to help others, because that's what I really want.
~Erik

#3 - (cry) Cody Johnson
This is so much like what we went through with Max. My heart is aching and breaking for this family. Let them know they are loved.

Celebration Guest Book(s)

Last month Andy & I had the chance to meet up with a couple we used to vacation with (pre-kids) and with whom we are still very close. I had asked Shannon the favor of assembling the guestbook from Max's Celebration. As you may recall we had asked everyone to make a scrapbook page. That night she gave it to us - well, gave us two giant 12x12 scrapbooks, orange, of course, filled with notes, pictures, drawings...

We placed the books, tied neatly with a white ribbon and holding a red-airplane ornament, on the table. It sat there for three days. Neither of us could open them. Day four came, I untied the ribbon, and quickly walked away. I knew that these books would open a flood of emotions that I may or may not be ready for, so there they sat... waiting. Day seven I sat down, took Book 1 in my lap and opened the cover. I turned the pages, looking at each one, but quickly so as to take in as much as possible without completely losing control. I made it through both books. There were tears - especially when seeing what the children had written. There are pictures that I've never seen of Max with his friends. There are incredible notes from people I may never meet. There is so much love on each and every page. Thank you for the gift. Thank you for your memories of our son, Max. They help fill my heart up a little bit.

And, thank you, Shannon, for putting in so much time on this project. Half of the beauty of the books is the love that you so obviously put into them, making each page amazing.

...no, I haven't been able to sit and look at them again... yet. Just peeking over shoulders.

Please do...

Visit two sites today and offer words of encouragement to two different, but inter-connected sets of parents.

Paul and Nina lost their precious Eden a year ago today. As I've mentioned in previous posts, Eden Brunskow was a sweet girl who lived in Orange County, was treated at Sloan before she went to Vermont and Dr. Sholler for an extended lease on her too-short life. Dr. Sholler provided Eden's family with options when no one else would give her a chance to live for just a while longer. And I know Paul and Nina value that extra time like nothing else.
http://www.caringbridge.org/visit/edenbrunskow

I have never met Cody's parents and don't even know their name. Cody is about where Max was in mid-August... likely weeks away from losing his battle with neuroblastoma. Cody and family are headed to the beach to make memories that unfortunately will have to last a lifetime. Please let them know that lots of us are thinking of them.
http://deckapes.blogspot.com/2009/02/no-way-to-prepare-for-this.html

This must stop. We have to stop losing our kids to a cancer that is so aggressive, so misunderstood, and so neglected.

Max's Ring of Fire

Like our lives these days, this post recaps a rambling, seemingly disconnected series of events which, in the end, ultimately ends up making sense... I hope.

Today - another update on what we've been up to, and announcing the work we're doing to help fight neuroblastoma - and what you can do if you want to help!

First, the update.



We exited January and entered February with a little family celebration on January 31st (5 months for those keeping score). We ate, played and watched the sun set while sitting on the grass at Powerhouse Park - all things Max enjoyed to do, all the better since it was January! As I wrote in my previous post, we use Max's stuffed "Bruce" shark from Finding Nemo as his stand-in for pictures now.

We also have started visiting the new Children's Museum in downtown San Diego, which is a gorgeous building - mainly glass and steel - and a wonderful place to spend a few hours together as a family.






Everywhere we go these days, we leave behind little signs of Max.

We have also rediscovered the "bluff park" - I don't know the actual name of it. It's right at the end of our street and overlooks the San Dieguito river valley - to the east is Rancho Santa Fe and to the west is the Del Mar racetrack where the ponies race from July - September. But the real treat is hopping the fence and exploring on the ground.






Little Nic is growing up fast. He's at the age when Max was first diagnosed, and it merely reemphasizes the toll that neuroblastoma, and even frontline treatment (ie, from Oct 04-July 05) took on Max. We strive to keep a balance between keeping Max alive in Nic's memory and his heart, while allowing him to grow into hi own person. It's a hard balance to keep up.






Melissa and I are ready to announce our continuing effort to help defeat the beast neuroblastoma. We have formed a new 501(c)3 non-profit organization called Max's Ring of Fire, which directly supports the neuroblastoma program of Dr. Giselle Sholler at University of Vermont College of Medicine/Vermont Cancer Center. We chose to take this path after Max died in order to have a route through which his story could be told, and money raised through methods not available to us as part of the MagicWater Foundation (which Neil of Team Sam is continuing with).

And so we have submitted the paperwork for our 501(c)3 status (thank you Mike Garrett of Pillsbury for your help and advisory services in this regard!), launched the website MaxsRingOfFire.org, and have started planning our signature fundraiser, Maxapalooza, slated for this Fall. More details to come - sign up to be notified via e-mail when we have more information available!

In addition to raising money for Dr. Sholler's program, I have become actively involved in helping her to build a 5-year plan for her program. That plan is taking shape and will be posted here and on MaxsRingOfFire.org when it is ready. Friends of ours, Kristy and Steve Myers who hail from the planning and production disciplines in biotech, have been helping to process flow Giselle's lab so that we can generate a picture of where Giselle wants to be in 5-years, where she is now, and therefore the "gap" that needs to be filled. Max's Ring of Fire is raising funds to help close that gap (it will be significant, to be sure). We have been extremely fortunate to have the support of many additional friends other that Steve and Kristy, in this part of our lifelong journey that continues to be focused on Max. As we shift away from saving Max's life to joining the larger battle of finding a cure for neuroblastoma, it does not mean in any way that we have lost touch with what matters most to parents whose children are actively fighting this disease: Better, less toxic therapies now.

Catch up

Well, we're overdue for a post. Neither of us has felt like posting lately. For me (Andy), the reasons are quite simple. What can I say that hasn't already been said, or that isn't painfully obvious? The pain of missing Max grows more and more every day - I clearly didn't feel this way in the weeks after his death. Now, the shock and the sharp pain is gone, replaced by a dull, aching kind of pain. The pain that comes with the realization that what I'm dealing with is permanent (yes, logically I knew that when he died, but emotionally I didn't comprehend forever).

We continue to live, we might even thrive someday. But we will never be the same.

Leigh Saxon lost her little son Paul a little more than a year before Max joined him in heaven. Paul was treated in Vermont also by Dr. Sholler. In fact, Paul was right before (patient #1) or right after (patient #3) Max on the nifurtimox study which first introduced us to the wonderful Dr. Sholler and all the good people at UVM. Back to Paul... er Leigh. She writes beautiful essays. She started a blog to help write down her thoughts and feelings as she mourns. She recently wrote a post that explains perfectly what I'm going through right now. Thanks, Leigh ;)

Part of what has been haunting me lately are bittersweet memories of last January and February 2008. Looking back, it truly was the calm before the storm then. In some way, I think we knew that we were running out of time. And not that we gave up, but appreciated the gift that each good moment together was. It's hard to explain and put words to it, but the relationship you have with your terminally ill child is so intense, even when outwardly it doesn't appear to be any different. In a strange way, I miss that intensity but don't need the cirumstances that would allow me to have that same intensity with Nic or Hannah.

Since we haven't posted a real update since before Christmas, here are some highlights from Tahoe.
It snowed.
Then it snowed more.
Then it snowed even more.
Then it stopped for a day, and then started again.

Hannah and Nic had a blast. We like to think that Max really delivered for his siblings, guaranteeing lots of snow for them.

Nic, Hannah and "Max" (that'd be the stuffed Bruce the shark from Finding Nemo - Bruce is our Max stand-in for photos when we can add him).

The lovely tree and living room of our cabin at Tahoe.

This is the road right in front of our cabin. Looks pretty unnavigatable, right?

Morning light on December 26th.

Interstate 80 on December 26th, heading into Truckee to grab breakfast.

We had plans for a much more spectacular shot underneath a snow-covered cherry or crabapple tree on the sidewalk in Truckee, but Nic was throwing a fit and would only calm down for a picture by a window. It was extremely cold this morning, about 1 degree. In the sun it was okay. In the shade you got cold quick!

On the way home, we stopped in gold country to check out Sutter's Mill where gold was discovered in 1849 (4th graders in California study the gold rush as part of their California history). It was a very nice state park set-up. Later, we stopped for the night in Sutter Creek and had a wonderful dinner and ice cream floats at a true soda fountain. Hannah and I were supposed to go on a real mine tour but at the last minute Hannah wanted "off" the tour. I can't blame her. It was kinda creepy.

Sometimes I feel like moving to another state where the price of living is lower and I could endulge in my dream of being a shepherd. And then we come back from epic snow in Tahoe and find ourselves the next day at the beach in Del Mar making sand angels on a glorious December winter day. And then I don't feel like moving anymore.

Hannah paying homage to Max in front of his favorite "Mig-killer," the awesome F-4 Phantom on the USS Midway.

Soon, we'll update you on things we've been doing to:

• Help find a cure for neuroblastoma (by starting a new foundation to help Dr. Sholler with her program at UVM)
• Honor and remember Max (by creating Maxapalooza - a fundraising event slated for Fall)

Thanks for checking up on us, and most importantly, thanks for remembering Max.

Connecting the dots II

I've posted on this before. I read the text of the speech again this morning. And today was the first time I watched the video of the 2005 commencement ceremony speech given by Steve Jobs. It deserves daily viewing in my opinion.

We lost 3 kids (that I know of) to NB this week:

http://prayforshuqin.blogspot.com/
www.caringbridge.org/fl/zacharyfinestone
www.caringbridge.org/visit/noahbell

Please visit their sites and offer whatever words or thoughts that come to you naturally.

Make a meaningful difference

Apologies to the parent's cancer blog from which I lifted most of the below - it enabled me to get this blog post up ASAP. As cancer parents forever, we need your help.

From the Change.gov website: "Share your ideas on any issue facing the new administration, then rate or comment on other ideas. The best rated ideas will rise to the top -- and be gathered into a Citizen's Briefing Book to be delivered to President Obama after he is sworn in."

Right now "Increased Funding for Childhood Cancer" is the #4 rated idea. Online poker and marijuana legalization are both ahead - can you believe that cr*p?!

Close your eyes and imagine this: Obama walks into the Oval Office and settles in on January 26th. He is handed The Citizen's Briefing Book - outlining the issues facing the new administration. He opens it up. The first issue facing the new administration is "Increased Funding for Childhood Cancer". There are over 500 comments and stories for him to read.

Can any human being see that and read that and not do something about it?

Go to http://citizensbriefingbook.change.gov/home, log in, search childhood cancer. Go to the answer with the most comments. Vote it up. Leave your story in the comment.

Pass this to your friends. Let's make a difference - a meaningful one! Thanks.

2:15pm Update: I just logged-on to the site and found that Increased Funding for Childhood Cancer is way down the list! There are several with more points including two for high-speed rail, two for smoking pot and another for legalizing on-line poker! Hello? Get on and vote - and leave a comment after you vote.

We made it!

Anyone who thinks it never gets cold in Southern California, the top picture below was taken during our drive to Tahoe. This is north of Los Angeles in the Tehachapi's mountain range. I-5 through this area is called, "the grapevine" as the north and southbound lanes criss-cross each other as you climb and descend from 100ft to 4500ft in 45 miles. This was our first bathroom break at a McDonald's. It was about 38 degrees and blowing 40-50 mph gusts = cold dash from the car!!

We made it almost 600 miles in 8 hours and 15 with just two potty/gas stops, from San Diego to the rental house in Soda Springs, just west of Donner Summit and about 25 minutes from Truckee, CA, and 45 minutes from Squaw Valley and the ski resorts of the greater Lake Tahoe basin.

Today is a snow fun day, with snow play, sledding, and Erin Project stuff on tap. Later today, weather permitting, we're scheduled to attend a party at the parents of a good friend's in Incline Village, NV. Max hated cold weather. He never liked the snow, though both times that he was in it he was sick as a dog and so who does like snow when they're sick? But we feel Max's presence with us this trip and like to think that Max has delivered the awesome snow scenes we will experience this week, with fresh snowfall forecast for everyday through Christmas.

You have to ask for the order

We are off to Tahoe in the morning. Lots of snow has fallen in the past week, and we are going to one of the areas that gets the most snow, so we should be set for many snowball fights and snowmen building. Hannah wants to build headless snowmen as she's seen in her Calvin & Hobbes books. I think that sounds fun.

I will also take Nic to downtown Truckee and we'll watch some trains go by, much like I did with Max in 2005 when we were in Tahoe during the summer and Max's magical year of cancer-free (or so we thought) life.

I so would like to be snuggling with Max in his bed right now. Just in case 'ol St. Nick is reading this, you may bring us Max for Christmas. We haven't given away any of his important stuff, and he has all his clothes still here. Just want to make sure you knew that. Though it might sound obvious, I wanted to make sure my wishes are clear. Bring us Max back.

Happy Holidays

I've tried twice already to write a holiday blog post and failed miserably. Tonight I sat down to write my nephew's wife an email reply. When I had finished I realized it was the post I've been trying to write.

Hi Bree,

Thank you for the nice note, as always.

Hannah still believes in Santa - but I think this is probably the last year. She asked me the other day, "Mom, do you believe?" I picked up a copy of "The Santa Clause" for her to watch this year. I think it'll get her through this Christmas, at least. Next year, 5th grade, I think we're doomed -- too many nay-sayers. She's asked for a video camera (our idea) and game and the Clone Wars movie, which we're going to have put on her iPod and we've purchased a cord that connects the iPod to your TV so you watch it both places. (Andy keeping us abreast of all technological advances...).

Nicky actually spoke with Santa two times (would not sit on his lap, but stood next to him!). He wants a BIG present. What ends up inside the BIG present is at Santa's discretion which caused Andy and I more problems than you'd think. After many hours searching the internet and trying to make a decision I ended up at ToysRus buying several smaller things to fit in one box. Cars movie stuff and a pretend toaster and microwave with food. He still loves that stuff and the crazy micro actual has a working turn table, light and buttons. Best $10 I've ever spent!

What are Katie and Jack getting this year? Is anyone flying out there?

We're leaving this weekend for Tahoe/Donnor. Already the snow is falling there and I know we're going to have a great time. We'll pack Max's box up and take him with us just like we did for Thanksgiving. This is definitely a tough time of year without Max here. For a new tradition this Christmas we'll be putting personal notes in Max's stocking on Christmas Eve. Our standing tradition of Santa leaving a nutcracker for each of the kids will continue. We found a nutcracker dressed as an army-guy for Max.

As I'm writing this, I looked up to see a group photo flash on the big computer of the cookie baking we did several years ago! How funny - because I was going to mention that we missed you this weekend for this years bake-off. Between Gramma, Jenee and I we baked a crap-load of cookies. I have about 10 big tupperwares full. It was amazing what we churned out in four hours. (Double oven!) The kids even had a blast dipping pretzels in chocolate and sprinkling them with goodies. Good day all around, I just wish more of us could've been together. These cookies will be the perfect gift-from-the-heart as always to many friends.

You probably are in the loop that we opted out of the name-draw this year. My heart just wasn't in it. I didn't want to go shopping. I didn't want to receive any presents. I told everyone that a present you could buy me for $50 isn't going to make a difference in my life. But spending time together would. In looking back at Max's short life with us, experiences are what makes memories and fill our hearts.

Our Christmas card this year...

"Normal"

We continue to experience the full blast of pediatric cancer - that is, the extreme highs and lows that come with fighting neuroblastoma, and now that the battle is over, dealing with the aftermath of our loss.

On the outside most people would look at me and think that I'm carrying on quite well. Not knowing what "normal" is in these circumstances, I'm not sure if they're right or wrong. My moods shift quickly from extreme anger at what Max went through and our loss, and his loss, due to a too-early death, to deep sadness at the pain, terror, isolation and exclusion he must have felt at times, to bursts of productive and creative energy where I actually get things done that help me to deal emotionally with the anger and sadness (you might notice that range of emotions in this post, in fact).

We continue to be amazed at the outpouring of goodwill and good deeds which come to us through the kindness of both friends (old and new) and strangers.

Erika Jessop is a wonderful artist whom we've never met. Commissioned as a gift from Max's photographer Deb, she painted for us (below) this wonderful, caring portrait of him in her inimitable style. Thank you Deb, thank you Erika, we have not yet found a place to hang this picture but it will be in a very important location, to be sure!



Life goes on for us. In an upcoming post, I'll update on what I've been doing to continue the fight against neuroblastoma. I think Max would approve, and it keeps me from going crazy.

We spent Thanksgiving away from our house this year. We host Thanksgiving usually, but decided we needed a pass on tradition, so we joined Melissa's family at Matt and Jenee's desert house outside of Yuma. The weather was beautiful and the kids had a blast with their cousins. Little Nicky is growing into quite a little man which of course is bittersweet. He is just about now at the age when Max was diagnosed. He misses his brother a lot - we all do of course - and asks the most touchingly sad questions, such as today when he asked, "when is Max coming back?" as if he's in heaven on vacation. We try as much as possible to get the idea of permanence across but also speak freely of Max and 'signs' from him which the kids especially find comforting. We strive to find positive things to focus on everyday and are thankful we have two beautiful, healthy children, along with our families, a community, and a network of friends that support us with their love and friendship.


Nic looking very comfortable on a mini-bike.


Hannah pulling g's


Nic getting inspired to face off against Will Lacey at some NASCAR track in the future.

Kitchen Table

Our kitchen table: where all the action is.

It's been three months already since Maxi-boy earned his wings. I don't know where I am with this reality. Some parents told me they were numb for the first year. I think that's a good definition. I haven't cried a lot - here and there, yes - but not what I would have thought. Last week a friend brought over a book for me, Tear Soup. (Thank you, Brenda. I love it.) It's a picture book, like what you'd read to your kids, but it's for adults and it's a recipe for grieving. I stood in the kitchen reading it and found tears streaming down my face. It was a relief to find something to help release my heartache over the loss of our beautiful boy. I've been thinking about Max more and more just recently. Seeing these videos and hearing his little voice and watching this actions... I just can't get enough. I guess my "missing" him has finally started. Thank goodness. It's not a bad feeling... this pain. It's necessary. It's welcome. I want to embrace it and have a good cry.

Magic Kingdom

You are magical, my boy. I miss you so much. xoxo daddy.

pancakes-snowy-disney

Another look at Max the Monday before he passed away (six days). Doesn't he look great helping with those pancakes? Also featured on this snippet is Max playing his favorite computer game, Snowy the Bear (game courtesy Mrs. Sturt!), and some video of Max at Disneyland this summer. Recognize those rides? The old school rides are still the best as you can see by Max's smile.

Birthdays

This video is about 6 minutes long and looks at Max's birthdays.

Forever 7.

Popsicles

This is a video from August 24, one week before Max died. It is a video from the post when Andy wrote about the fact that Max was going to die. To this day we still can't believe that he would leave us so quickly, just 7 days after this video was shot.

Hollow

We miss Max terribly, more so with every day that passes with him not around us. As the first holiday without him, and on the two month anniversary of his leaving us, October 31, 2008 was a tough day. On Halloween night, Nicky decided to chuck the fireman outfit he picked out and firmly settled on being a, "s-s-s-s-s-sooooooooooper, s-s-s-s-s-soooperhero." He has a slight studder which we believe is just temporary and is actually fading away slowly... his brain just seems to work quicker than his mouth, which is better than the other way around, we think.

Unfortunately, we didn't get a photo of Hannah this year, but she was a kittycat, and a very cute one at that. (Edit - we did!)

I had dinner on Wednesday with John London (Penelope) and Scott Kennedy (Hazen) in NYC, and yesterday, Melissa and I had lunch with the Bruskows (Eden). It was good to be able to connect with some other NB angel parents, though it seems grim to say its good to meet with other parents whose children have also died from neuroblastoma.

I had ambitions for a much longer post, but seem to have lost my muse and so will close for now. Thanks to all for your continued support and comments. It helps to know that most if not all of you are still there.

The Brave Little Soul

I received this story a few days after Max passed away. It was sent by a friend at Childrens Hospital. I read it once, that week, and filed it away because I wasn't ready for it. There were too many emotions washing over me. It resurfaced in my thoughts this week as I continue to read your comments about how Max's life has changed yours. How this little boy, my son, has made an impact on so many people - many who never even met him (which then brings to mind this):

Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. - Unknown

The Brave Little Soul by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

And what better to end a post than some random pictures of our brave little soul...

Father's Day/Daddy's Birthday 2008

"Baby Jack loves my red hat."

Cousin Chase is cool.