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!
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

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

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!

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.



Purple, vacuums, and a little boy named Lucas

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!

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

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

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.


September 13

Quick post here. Today is a special day here in the Mikulak household...

Our little Nicky turns 5 today and isn't so little anymore!

We're celebrating as a family tonight and then this weekend will be holding a birthday party for Nicky and his buddies.

Max Run was on Saturday and a great success! We'll post a more complete entry about it later, but preliminary estimates are that it generated over $12,000 in money that will directly be applied to research and clinical trials for kids fighting cancer. Christine Bowen/Sole Warrior Sports did an awesome job playing ringmaster, and all the volunteers, vendors, sponsors and attendees we can't thank enough for making this first annual event a success! We were especially glad that Team Sam showed up and ran, as did Kalea's Cancer Crew and other folks running in honor/memory of those affected by cancer.

Today, September 13 is Childhood Cancer Awareness Day. 'Course we think (and live/breath) every day around here as childhood cancer awareness day so its really not that different for us.


The night Max went to Heaven

We never did tell the story of the night Max died. A few people have heard it. We thought some of the people who came to love Max in person and through this blog might find it helpful to read about it, just as we have found helpful to write about it. And so we share on the 2nd anniversary of his passing.

Sunday Aug 31, 2008 – Max was in bad way. You could tell by the way he looked. It occurred to us at some point, probably after speaking with Dr. Sholler at 7:30pm (his breathing had changed significantly, becoming audible and clearly labored, about 75 minutes before he died), that his kidneys had shut down the day before. He was drinking lot of fluids, but never peeing. This, in addition to his belly being distended from the size of his liver, was causing him great discomfort. Earlier in the week we had found out that the neuroblastoma had spread to his liver and it was growing so fast you could almost see it. From Monday to Friday it went from regular to pressing so hard on his organs that he had to get palliative radiation to relieve the pressure. I think it helped a little bit – it at least stopped the rapid growth through Saturday and Sunday.
As usual, Max was in an okay mood – considering the pain, discomfort, and morphine, which he controlled with a bolus button. He didn’t necessarily want to talk to anyone, but he let us sit and watch his programs with him, hold his hand, be at his beck and call. It was hot and humid (for us anyway) that late August. Max asked for his favorite – frozen lemonade which he ate voraciously. He smiled that pure, sweet, sweet smile of his. We, especially Andy, were there for whatever he needed. I don’t think Andy left his side for anything. We had made a bed on the couch for him so he would be comfy and still in the midst of the family action.
We had scheduled Nicky’s 3rd birthday party this day. I think it worked out well… the whole family came to see Max, not actually knowing he would pass that very night. His cousins came in and sat with him for a few minutes each. I’m sure it was stunning for the children to see him look the way he did. It was stunning enough for the adults. Andy brought Max outside for a little bit for the party, but he was not feeling good (he was super light sensitive at that point and didn’t even open his eyes), and went back to the couch.
I don’t remember much from the party to bedtime. There was a flurry of activity surrounding Max. His breathing at some point became wet sounding. I phoned Dr. Sholler and she instructed me to give him some of the emergency drugs we had from hospice, and told me “maybe 3-4 days.” He couldn’t get comfortable for anything when it was time to get to bed. He needed to sit up, he was floppy. So we decided to move him to our room and knew we’d be up all night. We propped him up on our bed with every extra pillow and I remember him adjusting his legs with his hands saying, “Why are my legs so heavy?” I phone my sister and asked her to come over to be with Hannah & Nicky during the night and the morning. We called hospice to have a nurse come and help us with Max and some meds.

Once we thought he was set-up in the bed, he had to use the toilet. It was a struggle to get him there. In hindsight, it’s obvious that his body was slowly shutting down, but at the time we were living moment to moment and doing what ever we had to. Andy supported Max under his arms like he had been doing for a couple of days while Max had to use the toilet. Max went fairly limp and heavy, and I could tell that something happened. On the way back to the bed – Andy was carrying Max – he was heavy as lead.

We laid Max on the bed, he was practically unresponsive. Andy & I were on opposite sides of the bed trying to help him, when he threw his head back, and his eyes rolled. We both called to him, “Max! Max!” His body jerked around a bit, and then he stared into the corner of the room like he saw something. It seemed like he was trying to talk, but no words would come and it was obvious that he wasn’t seeing us. We still called, “Max! Max!” And we may have realized at the same time that this was it. The tears started.

Max was dying right here in front of us.

Andy gained eye-contact with Max and through tears said, “Take Jesus’ hand Max.” And he closed his eyes, smiled and left us. 8:45pm.

We brought Hannah in to say her goodbyes. Kids are so profound. She said through her tears, “He didn’t even lose a tooth.” Nicky was already asleep and oblivious to the night’s event until the next morning.

My sister came a short while after and started making all the phone calls for us, as well as offering her calmness and prayers to our home. The hospice nurse came – we appreciate to this day the help she offered us that night. She helped us dress him in his favorite Clone Wars pants, his skull t-shirt that Tony Hawk liked, his skater beanie, and his flame high-top converse. He looked like Max again. All the swelling had left his face and body and he was beautiful again. Andy’s Dad and Aunt Joanne came by, and my mom and dad.

Then we went to bed with Max lying between us.

The small smile on his face stayed there until we laid his little body to rest.

It’s so hard when you finally submit to giving up hope that your child will be cured. That the coming days are numbered and you’d better get all you can out of them. It was like a weight being lifted – and yet only lifted to reveal the suffocation of the pain you have to endure from then on.

Melissa & Andy



Get your ice cold lemonade!

Today Hannah asked me, "Mom, can we do a lemonade stand?'

Sure. So Hannah and her friend Kendra got everything they needed to stet-up a stand on our corner and headed out. Their first customer gave them $5 for two cups after learning that they were fund raising for kids charities. Kendra's family raises money for various childrens charities, and Hannah chose MROF. I told them they could do whatever they wanted, even make money for themselves. "No, we'll donate!"

Nicky joined in the fun as did another girlfriend, Jenna.

One hour later we packed up what was left of the supplies (I had to replenish the lemonade two times!) and went home to find that they had made $142.

Good job girls!


not so good memory

I was just looking back through this blog and stumbled upon this. It was posting in Nov 2007, but was a note I had found in my organizer...
April 3, 2007
Almost cried just now. Max is in clinic watching a TV show where they're talking about how things change, like the seasons or how people change when they grow up. "How will you change?" they ask. Max looks at me and says, "My hair will grow back!" I'm suddenly struck by the thought of him not growing up and not having any hair ever again.
Coming up on Max's Angel-versary. Everything is hitting hard.

Last week I had a terrible dream about losing Max. It's hard to remember it all, and it was a dream so there isn't a good story flow, but the gist of the dream was that Max had been kidnapped and he had been gone for two whole years. But I had given up hope from the time he disappeared of every finding him. The emotions that were coursing through me were all so terrible and jumbled. It's been a week since I had that stupid nightmare and I've thought about it everyday. Really? I've had two dreams about Max since he passed and this is one of them? Great.


Run, Max, Run

Most of the reader's of this blog know professional photographer Deb Schwedhelm's work with kid's fighting neuroblastoma, Max and Sam specifically. Deb's work with our family was captured in a photoblog that she created called Mashed Potatoes For Breakfast. We'll never be able to give back to Deb what she gave us (forever memories of Max and our family together captured as beautiful images), and she continues to support and engage with our cause to fight neuroblastoma, even though she's moved twice since leaving San Diego.

Her latest effort to support the search for a neuroblastoma cure is something I wanted to share with the rest of Max's followers, in case anyone else felt equally inspired to act as she has.

Since Deb and her family now live in Tampa, its impossible for her to run in Max Run. However, as Deb wrote in her blog post titled Let's Do This, Together, she and her kids will be running 1 mile in Tampa on Sept 11, and she's soliciting her friends and blog readers to support her effort and help raise money for Max's Ring of Fire. Here's what she wrote...

i noticed the MAX RUN, which is taking place in san diego on september 11th, to raise money for pediatric cancer. my initial thought was, oh how i wish i could be there to participate in the run. but why can't i run? and participate? why can't i encourage people to sponsor me (donate) and just run here? and why can't i encourage others to do the same?

so you think you can dance did it with their july 31st national dance day, where people all across the world danced together on the same day. okay, so maybe running isn't exactly as fun as dancing but... let's try it. let's try to run one mile on september 11th together no matter where you are. and let's - together - spread the word and encourage others to donate to fight pediatric cancer. and while your donation can't help max or sam, it could possibly help children like will or talia, who are both currently battling neuroblastoma.

on september 11th, at 9:30 AM, i am going to run one mile. can you please sponsor my run — simply click on the Chip In button below to donate to fight pediatric cancer...

No matter if you live in San Diego or elsewhere, for whatever reason if you can't come and run with us at Max Run on Sept 11, you can still participate by simply running/walking wherever you are - let's make Max Run live up to its name by MAXIMIZING awareness by making it a national day of running/walking in support of finding a cure for childhood cancer, and MAXIMIZING the money raised, 100% which goes directly to fund cutting edge research and clinical trials through a 100% parent-supported consortium.

If you're interested in participating this way, here's all that you need to do:
1) Commit. Just do it. Think of how hard Max struggled against his cancer. 1 mile walking, 5 miles running, whatever, isn't that big a deal.
2) Decide how you'll collect sponsorship money from your friends - there are 3 ways listed below.
- Got a blog? Facebook account? Use a Max Run ChipIn widget to solicit donations online via PayPal using the Max's Ring of Fire PayPal account (so you don't have to worry about donations going to your personal account, instead it goes straight to Max's Ring of Fire). Here's the Max Run ChipIn widget:

simply grab the code via the 'share' tab and embed on your blog. If you need help setting it up on your website email me.
- If you are a more advanced user of web apps, you can also create your own ChipIn widget and use info@maxsringoffire.org as the PayPal account.
- If you are computer illiterate (or the people are that you are going to ask for donations), you can ask for checks to be made out to 'Max Run'.
3) Ask your friends/family/co-workers to sponsor you.

Pretty simple actually, isn't it? Operators are standing by (me, via email -- amikulak@maxsringoffire.org) to help you if you have questions or need assistance.

Thank you to all that have already donated, registered to run, or volunteered. For those still sitting on the sidelines wondering what they can do... jump in! Ask for help if you need it. We'd love to have you join us.


Love Lemons

Yesterday we received the following email. It's timing was no coincidence, I believe. The sender, the daughter of a very kind and loving family whom we don't see enough of, is Hannah's age, and her younger brother and Max were the same age also. I think Max (or God) is trying to send me a message, perhaps I'm complaining too much and praising too little. Thank you Shiney!

hi how are you? this summer ive raised a lot of money doing lemonade stands with my friends! today im doing one and i made a very great sign telling about max! cant wait to see you again so i can give you the money i raised !


The transformative power of love (or how we came to name Max's Ring of Fire)

Some people have asked lately about the origin and/or inspiration for the name of our foundation, Max's Ring of Fire.

I've also been seeing a lot of comments lately about the upcoming fun-run/fun-draiser Max Run that sound like, "hey, sounds like a great idea, great cause, but... I don't run... I don't like to run... blah, blah, blah"

All the excuses start to sound like Jake Elroy (John Belushi) from the Blues Brothers.

I'm not bitter when people decline to participate because they aren't available, can't afford to, or even just don't believe in the cause. Long ago I chose not to take it personally when someone declines to contribute, participate, or otherwise engage with our cause - life's too short to worry about that kind of stuff (and there's so many people who DO want to help if only you ask and show them how, so that's time better spent anyway!).

But what gets me are the excuses. "Oh sure, I care Andy, just make it easy for me to care, and I'll show up."

As Melissa and I have started giving more and more of our time to fighting neuroblastoma and other causes, a constant theme has emerged for me, and that is when giving is easy, you get less out of it. Giving in a manner that challenges the giver, also helps the giver; it helps them appreciate the sacrifice of their giving more. It makes the giving mean more to the giver. Altruism is a funny concept (quick refresher: altruism being an act that benefits someone else other than the actor). Altruism doesn't align well with biology and evolution.And while I know that evolution exists, I also believe in God. Perhaps that's where love enters the equation. Maybe God's love makes it possible to see past our own selfish interests and limits. To extend ourselves past our comfort zone. Take risks on behalf of someone else, but get something unattainable otherwise in return.

And there you have it, the meaning behind the name Max's Ring of Fire.

According to Rosanne Cash, Johnny's daughter, "The song (Ring of Fire) is about the transformative power of love..." The story is that four years after the song was released, Carter and Cash were married which Cash states helped to stop his alcohol and drug addictions.

I like the Rosanne Cash explanation. And I believe the Love Transforms message from the song, has become the durable meaning of the name Max's Ring of Fire. The video below also demonstrates the reason for the name (simply put, Max loved the song, sang it all the time, and aligned well with the skate, hot rod, alt country aesthetic associated with the Social D version).


Things you find...

... when you really clean the playroom (if you click on the images a bigger picture should open so you can read these):

self dated

written by Hannah while at church camp summer 2009

written by Hannah for Max... 2007?

Sometimes it really pays off to go through each and every page of all those note books and mostly unused journals to find the gems.


Wear Your Care

I came across this video today from Sept 2007, while cleaning up some photo archives on our computer. I don't think I had ever seen it before - watching it of course made me smile and tear up at the same time. This was for a Magic Water fundraiser that Max's infamous first (and second) grade teacher Lisa Sturt conjured up at our school. Hannah and Max are delivering the morning's message to the entire school via the Dolphin News Network, the in-house video network at Solana Highlands Elementary. In all, $11,000 was raised to help fund a cure for neuroblastoma. What do you think, should we try it again this year when Nicky starts kindergarten?


Happy 4th!

July 4, 2007.

This year we'll be watching fireworks from the deck of the USS Midway-one of Max's all-time favorite places to visit. Hope you all have a safe and fun 4th of July with your loved ones, both near and far away.


Max's 9th Birthday

Where the action always is, some great moments capturing Max and his squeaky voice.

Wednesday, June 30, 2010 marks Max's 9th birthday.

I can't explain to those of you who have not lost a child how difficult it is to get beyond the loss. In fact, I don't ever try. Simply put: it's not the same as losing an adult. I find it particularly interesting how I think of Max every time I look at Hannah or Nicky. He is a part of them and they are a part of him, and will forever be intertwined. And the feeling of loss is compounded through them as I watch them grow, as I see their photos on the wall progress, as I see Max's stay the same. Forever 7. Through Hannah and Nic he is with us everyday. I am thankful for that. They smile, laugh and fight and I see Max there with them. It is bittersweet.

This weekend we were at a friends' house for a birthday party and their 9-yr-old son, a friend of Max's, said to me, "Nicky has Max's eyes." Thank you for sharing that with me. Thank you for seeing it, too.

I can't tell you where I am in spirit with one of my kids gone. I think I still float through the days, possibly avoiding it. Avoiding looking too long at any one photo. I think it's time for me to make a new pot of Tear Soup. I'm not sure I ever completed my first pot. I don't think I got the seasoning quite right.

For Max's birthday this year, we will be enjoying crab claws. A favorite of Max's even when he didn't like food. We're going to make some paper airplanes and fly them away on the strings of some orange balloons. We invite you take part - where ever you are - in this celebration of a brave child's life on what would've been his 9th birthday, and to remember all the kids with NB who are fighting the fight, or have earned their wings.

I concur and sign my name at the bottom of Andy's letter to Max (following). I miss my second child. We all miss him. I love you, Max. I remember, not long before you left us, asking if I could spoon with you while you fell asleep one night. You were terribly uncomfortable from all your meds and the cancer, but you needed some love, too. I will always remember lying next to you with the nightlight on, barely stroking your arm, and you falling asleep. You were so sweet, always. Happy Birthday in heaven. I bet God makes good cake.

This is easily one of my favorite Max illustrations. All the red? Chaser bullets. Don't forget to catch the shark with the gun.

(Andy here)
Dear Max,
Well, the big nine-r. Almost double digits. Old men like your dad often take a moment on their birthday to look back and take stock of their lives up to that point. Young dudes like yourself never slowed down enough to look back, instead you were always looking forward. But I can't help imagine what may have happened in your life during the 22 months since you left us. You definitely would have:
  • Lost your first tooth (finally)!
  • Started and finished 2nd grade.
  • Started and finished 3rd grade (maybe Mrs. Sturt would have become a 3rd grade teach at the same time!).
  • Convinced me to buy you a bunch of additional airplane models to hang from your ceiling (I know you know that we took some from your shelf and hung them in Nicky's room - he loves them as much as you do and now whispers in my ear on weekends if we can go to "the model store").
  • Watched every episode of Patton 360 with me on the History Channel.
  • Built some really awesome Lego creations with Hannah, Nicky, mommy and me.
  • Visited Legoland many times with Luke, or Jack, or some of your other friends.
  • Watched all the episodes of The Clone Wars with your brother and sister.
  • Continued to draw amazing pictures of whatever you thought was interesting.
  • Continued to observe the world around you with the precision and detail of a scientist.
  • Caught some more fish.
  • You likely would not have enjoyed all the snow at Lake Tahoe the past two Christmas's, but thanks for sending a bunch for Hannah and Nicky to enjoy.
  • Read Percy Jackson and the Olympians.
  • Ran around in the backyard naked with your brother and sister when it was warm out.
  • Attended KidsGames.
  • Started attending Sunday School regularly.
  • Continued to grow and start to become a fine young man from the fine young boy you already were.
There are so many things I would like to say to you Max. Maybe you can intercept my thoughts about you every day. Maybe when I say "hi" to your pictures on the wall or on the computer you can hear me. I hope so. I miss our conversations, I miss your questions. How much I ache to touch your almost porcelain-white skin again, hear your squeaky voice talk about battleships and WWII fighters again, see your smile.

I know you're in heaven right now. And even though I didn't teach you much about heaven before you died, I know you went there immediately. You were the purest person I'll ever know. There was not one malicious fiber in your being. Not a bad thought about anyone - you wanted everyone to be happy, to feel loved, to have fun.

Happy birthday my sweet boy! I will always love you. And I will see you again someday!



Reach 4 The Sky

Hannah boarding the bus to Camp Reach 4 The Sky

This morning I dropped Hannah off at her usual spot this time of year, to get on a bus and go to the local mountains for a week of sibling camp at Camp Reach 4 The Sky - staffed and attended exclusively by kids & young adults affected by their siblings' cancer. Hannah just adores this week away. And while we will miss her (usually around Thursday... don't tell her!), it is once again a bittersweet moment...

Max at Camp Reach 4 The Sky (day camp) in July 2008
This father's day was pretty busy. We were getting ready for Hannah's week away and Melissa was volunteering at our church's Kids Games that we attend every year. This year its only Nic attending, and he wasn't too excited about it either, but after day 1 (today) he's totally into it.

All this summer stuff brings back many memories of Max which is both great and tough to deal with. Lately, I think we've all be having a rough time of things, even if we don't recognize or admit to it. Nic especially, exhibits behaviors that really show how much he misses his big brother. He just latches on to older boys like nothing else. And it just tears your heart out to understand what's going on and see his "thirst" for that older boy relationship be quenched, albeit only temporarily.

We are making plans to celebrate Max's 9th birthday this June 30. May and June are rapidly becoming months I'd rather skip over, much like November and December are already. There are just so many opportunities to miss Max due to all the birthdays (Melissa, me, Max, then Hannah in mid-July), mother's day, father's day, end of school, etc. We are trying to turn Max's birthday into something of a tradition that we can replicate. Even though food was not big on Max's list of "likes" (he did have the g-tube for over a year), one special food that he liked to enjoy at times was crab. And so we will have crab for dinner every June 30. You can too if you'd like. And get claws... to play with.


Touch-A-Truck Blew the Doors OFF!

It's Monday and back to the grind. I'm in mop-up mode following a wildly successful event. We raised just about $29,000 for childhood cancer on Saturday, and most of it was through admissions and general donations at our lemonade stands, bake sale, cake walk, and through the efforts of our armed forces. (huh?, you say?) The Navy SEALS and Marine MARSCO units did a little fund raising on their own for us in the Camo-Area of Touch-a-Truck. They rock in so many ways. Here they've teamed up with a special Star Wars Unit... (Needless to say that everyone had a great time - even the big kids.)
We made some incredible new friends this year who we hope to take with us into the future of this event. Yes, the future. Saturday 's attendance was over 2500 by our estimates. This is up 5x - 6x times from last year. And from the response we've received thus far from attendees and participants, I see this event being bigger, Better, LOUDER every single year. Changes will, of course, have to be made to make sure it's as enjoyable in a larger format as it was this weekend, but I think with the dedicated people we have who are willing to help us, we can do it.I couldn't possibly end this post without photos of my kids at TAT. Here are Hannah (middle) and her two best friends, Jenna and Storm Trooper - and, yes, that is a sand-person peeking out of the back of the Deuce. Below is Nicky on top the armored HV playing with the 50mm gun. Atta Boy!

Max was certainly smiling down on all of us Saturday. Here's a photo of him... (on the dash)


What was he thinking?

I have generally avoided looking at this series of pictures by Deb taken in mid-August 2008, on a particularly painful night when it was clearly evident that life as we knew it for Max was going downhill, fast. But this one came up on the screensaver tonight and it captured me. Knowing the location and the direction he was facing, I know he's looking at nothing - well, the sky - but nothing else. What was he thinking? What was he feeling? Who might have been talking to him in words I'd never hear, as my heart wasn't able then to allow me. I'd give my right arm to be next to him for 10 minutes, so that I might ask the question I never did.



Neil mentioned Max's curls a couple of weeks ago. I've been thinking about them since... and I realized that this was during the good times so we didn't post much. But we see these pics everyday as they come up on our computer monitor's screensaver, so thought I'd share some favs. These were all taken during 2006, from Spring through Summer.