Strange

Today I'm taking off work to just "be" on this first anniversary of Max's passing. I won't fool you, I have nothing profound to say today. No magical insight. No message of hope and better days ahead. The process of grieving is unique to each of us, but it all follows somewhat similar paths.

Since joining this "most exclusive club that no one wants to belong to" 365 days ago, I've become a sort of connoisseur of other angel parent's blogs that are either ahead or behind me in the grieving process. For lack of something to say here myself, I'm going to highlight some of my favorite entries/efforts here. Check them out if you can. Or save them for viewing later. They all hold inspiration, truth and hope in their words and pictures.

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The very personal (and moving) story surrounding the death and cremation of their child, Lucas, who passed away from neuroblastoma on 10/16/07.

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Coming from Leigh Saxon, who along with her husband Terrill and brothers Jack and Whit, lost their Paul to neuroblastoma on 7/14/07, what it's like to continue to function "normally" while dealing with the loss of a child.

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The Dolling family lost their Spencer on 5/21/08. More than any other family I've known (even if only virtually), they epitomize Living Life to the Max. Here is the blog post they wrote a few weeks before Spencer died. And here is their latest adventure.

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Erin passed away less than six months ago on 4/9/09. Erin's mom Vickie Buenger, who raised probably one of the female gender's best hopes for President of the United States, introduced a US Congressman and friend of Erin's at a recent town hall meeting on health care. This is what she said.

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So many other NB angel parents remain in the fight, but perhaps aren't the most wordy of bloggers like myself. But I want to take a moment on this day, the day before Childhood Cancer Awareness month begins, to acknowledge them and their efforts. It would be easy for them and for Melissa and me, to just walk away from the whole dang thing and simply live. To be honest, some may think that we are simply grieving by continuing to fight for a cure.... that this is therapeutic for us. I wish it were that simple. Believe me, sometimes it is, and sometimes it isn't. There are only 24 hours in a day. Most all angel parents are still parents to other kids that need time, attention, love, and a roof over their head. This work takes away from hobbies, vacations, and families. It is not without reward, but it is not without costs either. To these angel parents, I say simply, "thank you."

• Mayank Gala (son Ishan): IshanGala.org
• Scott Kennedy (son Hazen) and John London (daughter Penelope): KidCancer.org
• Paul Brunskow (daughter Eden): MagicWater.org
• Bob Piniewski (son AJ): People Against Childhood Cancer (PAC2) curechildhoodcancer.ning.com
• Mikey Johnson (son Cody): Codys-crew.org

There are many other foundations run by many exceptional angel parents and I do not mean to imply that their work is less important or otherwise not worthy of mention by their lack of inclusion in my list. Those above are merely the ones where I am personally familiar with the parents involved.

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So many of our days feel strange because Max is not with us. No matter what we're doing - whether we're having fun (we do), or feeling melancholy (we do) - the feeling is there. Something's missing. It's that one-armed thing that Leigh writes about. Today, we are just hanging out. Hannah starts 5th grade today at a new school (5-6 only), and we will be dropping her off together as a family. She is somewhat nervous but mostly about homework. Max would have been starting 3rd grade. So many "I wonders" around this missed milestone: I wonder who his teacher would have been; I wonder which kids would have been in his class; I wonder how he'd be doing in math, and what he would be writing about. It will feel strange not to show up at Solana Highlands on this first day of school.

Because our summer update post was thin on pictures, here are some highlights from this summer with a few of Max thrown in just for fun.

Starting out with Max's 7th birthday...






We got him a Wii. We made him open the games first, as he didn't know/expect a Wii. So he got a bunch of games but to him, they were for the "wrong game system."



Finally, when he opened the big box, it all made sense to him and he laughed so hard, and of course was very excited too!





This summer we've made it to the beach a lot in the past few weeks. Before August, it's been quite frankly, not very nice beach weather. The past two weeks have been pretty, pretty good however, with the water temp around 70 and the air at least that warm if not warmer.



Nic and Hannah are slowly learning to play together, well, Hannah is learning to tolerate playing with Nic so that Nic has someone to play with until we can scare him up some friends.

This summer, we also...



Did the 4th of July bike parade thing...



Hung out around cool airplanes...



Went to the park after Pizza Port dinner...



Explored the trails below our house a bit more...



Saw Hannah off to two weeks (non-consecutive) of sleep-away camp...



Stumbled across some dinosaurs at the Wild Animal Park...



And missed...



Our Max everyday...



Thank you all for your messages today. We feel your love for us and Max. We know he remains strong in your memories, as he is in ours.

Andy & Melis

Max Weekend

Intend on having a very MAX weekend... Conan O'Brien, whom we never stay up to watch, started the weekend out just right...

Just saw Nigel Marven on the Tonight Show. Came out with a Monitor Lizard, Nigel bleeding from neck where the beast had scratched him on the way out. The Monitor lizard was a Max favorite as they ate "wilderbeets". Max used to watch DVD's from the playroom featuring Nigel in prehistoric times. Favorite show ever as there was real person interacting with the dinos.

Tears and smiles. So many memories.

Maxapalooza cancelled

Dear Friends and Fans, Supporters and Sponsors:

It is with some sadness that we have made the difficult decision to cancel Maxapalooza. We arrived at our decision over the past 48 hours after much analysis, discussion and reflection amongst ourselves, our organizing committee, and top sponsors.

Simply put, Maxapalooza was going to be an amazing event experience, but the projected revenue from attendance and donations, even with corporate sponsors helping to cover some of the costs of producing the event, was not enough. The last thing we wanted to do was create a great event which raised no money for pediatric cancer research.

If you purchased a ticket, the full price of your tickets will be refunded to you. Look for an email from either PayPal or Google Checkout to serve as confirmation of your refund.

Max's Ring of Fire remains as committed as ever to our mission of helping fund important research to find a cure for neuroblastoma. Our mission and commitment to it remain unchanged. You can keep up-to-date on what we'll be doing next by visiting us at MaxsRingOfFire.org or by becoming a fan of MROF on Facebook.

If you have any questions or concerns, or would simply like to talk to us further about our decision and the factors involved, please don't hesitate to e-mail us or call: 858-342-1432.

With hope for a cure,

Melissa & Andy Mikulak, Max's mom and dad and
founders, Max's Ring of Fire, Inc.

Summer Update

Hannah starts school in one week. 5th grade. Nicky will be going to pre-K (4 yr old preschool) this year. Max has been gone for almost a whole year.
I’m not sure when the feeling of loss is supposed to get easier, but lately it’s been so intense. The numbness that had hold of me for so long is completely gone. What’s really sad is that Max not being here is not so blaringly obvious. So when it hits it hurts all the more. Almost guilt-like for not being more aware. Hard to explain.

Nicky’s been doing lot of little things that remind me of Max. Actions, movements, sayings. It feels good to see a little bit of Max come out of him, but it makes me cry just the same. As Nicky grows up he’ll surpass Max’s ‘forever seven’ and then there’ll be nothing to imitate. Every night at bedtime he still has the same routine: read a story in Max’s bed, sing a song, then talk about Max. Nicky is so lonely for a boy to play with. He came to me this morning when he woke up and sadly said, “Mommy, I don’t have any friends.” I almost cried, because it’s true and it’s my fault. How could I have let the entire summer go by without setting up one single playdate for my son? He needs a boy companion so badly and I’ve done nothing but fail him.

Hannah is still “skip-to-maloo.” We check in with her all the time, but she seems just fine. She never brings Max up in a conversation, but always partakes when he’s talked about. I wonder if her ability to cope has something to do with sleeping in their room every night, with all the planes, Max’s bed, his cloths in the closet and dresser… she doesn’t want any of it moved or tampered with. Two weeks ago she had run out of underwear, so she reached in his underwear drawer, pulled out a pair of spiderman tighty-whitey’s and was all set. Hannah is an amazing child.

For vacation this summer we finally made it back to Legoland. Max’s last trip was with Andy and his best friend Luke. Andy couldn’t bear to go there for along time. We all had fun and remembered all of Max’s favorite rides and exhibits. It was a good day for all of us. Then we flew to the destination for all southern Californian’s trying to escape the beaches, waves and sand: South Dakota. ;-) My mom’s family reunion. We stayed in a beautiful cabin on a lake for a week. Hannah & Nicky fished from the shore and docks (not even a nibble, but that didn’t seem to deter them). We bought fireworks, made smore’s, drove through swarms of huge mosquitoes, played in my cousin Mark’s bait barn (whole essay required to explain this to anyone not from the Midwest)… and Andy and I missed our second child.

The bridge that was Max is still sorely missed in our house. Hannah and Nicky just don’t have a connection without him it seems. Hannah is so pre-teen and Nicky is just a little boy who doesn’t understand why his sister doesn’t want to play with him all the time. (Again, this makes me hit myself in the head because I sucked 100% at getting Nicky a friend.)

There is a lot of pain in our house. Andy and I are stinging from the loss of Max.

What I Miss Most

Most of all, I miss having three behinds around.

Splash for Cure - Charlottesville, NC

If any of our readers is located - or has friends - in Charlottesville, NC - we invite you to attend this fundraiser hosted by one of our NB Alliance partners, the Ishan Gala Foundation.

Splash for a Cure: Family Fun for a Cause in Charlottesville, VA
Charlottesville Couple Honor Son with First Annual Fundraiser for the Ishan Gala Foundation, Raising Money to Fight Deadly Childhood Cancer, Neuroblastoma

Say goodbye to summer with slip sliding fun, live music by Alex Mejias, great food and fabulous prizes at the first ever Splash for a Cure event at the ACAC Waterpark on August 29 from 5-9 PM. more...

Maxapalooza

As you can probably tell by the image and title of the post, this is the official announcement of Maxapalooza. Melissa has been working day and night to pull this together and we have been wanting to wait for the headliner band to be found and signed and this just happened on Friday (while we were at Legoland with the kids on a "surprise visit" no less). We have signed The English Beat (with Dave Wakeling and Ranking Roger for all those who remember) and are happy with the outcome. We looked at a lot of bands and The English Beat were very accommodating and easy-to-work-with, a big plus since this is our first event and are still learning.

So, what's all this for? Where does the money raised go? It goes to fund an innovative neuroblastoma (and it's close cousin medulloblastoma) research consortium headed by Dr. Giselle Sholler and HQ'd at the University of Vermont/Vermont Cancer Center. Most of you know Dr. Sholler from our blog so I won't go into much detail here. Here is a PDF describing how your money is used to help save kids from this common yet overlooked cancer. However, I also wanted to let you read a letter from another angel parent, Bob Piniewski who started an effort called People Against Childhood Cancer or PAC2. The context of the letter doesn't matter here. What does matter is his message, which he has graciously allowed me to use on Maxapalooza.com (thanks Bob) and which I include here as well:

Childhood cancer is considered "rare". Rare has two meanings in this case: Happening to your child or someone else’s. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive. It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE?

Right now, two major fundraising organizations for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.

And the medical industry even agrees! And write about it! (Cure Today – Picking up the Pace - Igniting progress in the cure of children with cancer)

To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research.”

What?

While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims’ families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today!

And don’t believe that research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.

We are so grateful for those that have helped us get where we are, and will be there to help make sure Maxapalooza is a success. As you may have noticed, Maxapalooza is much more than an ordinary fundraising event that just so happens to be raising money to fund neuroblastoma research. In a way, it's a living tribute to Max. Which makes it difficult at times to "settle" for things - it also likely makes us difficult to work with but luckily we have surrounded ourselves with fantastic people who like us, are inspired by Max and what he represented and so work on our behalf in a way that is consistent with our beliefs and desired outcomes. Some of those people include Leo Benevidez at YMI, Chris at Grind for Life, Grant at Sport About, Elizabeth Wainwright-Alkhas, and Craig and Nelson at Premier Jet. Also some the committee making this all happen and supporting Melissa including Alessandra, Andrea, Kristi, Lisa, Lori, and Marcina & Neil, and Randee. Thank you so much - all of you - for your help and support in getting us where we are today! There's much more to do, it's just started, but without your help Maxapalooza would have never even gotten off the ground.

Tomorrow, we leave on a little vacation. It's nothing extravagent. We're going back to South Dakota to visit with Melissa's family. We'll be saying on a lake the whole week, the kids will have a blast fishin' swimmin' & boatin', and hopefully Melis and I can slow down for a few days to catch our breath. We also are planning on meeting Donna Ludwinski (mom to Erik: 23 and still kicking NB's ass) and whatever of her clan are able to make it to Minneapolis to attend an NB fundraiser.

This summer - as I presume all summers will be - has been tough. Bookending the start and end of summer are Max's birthday (June 30) and his angel day (August 31). With "the year" mark approaching rapidly, I cannot believe it has been this long that we have been without our perfect little boy. Each day, I find myself missing more and more of him and what I would give to have him back if only for one more day.

SuperRyan and Missy

Wow.

http://superryan.blogspot.com/2009/07/missy-is-holding-one-of-her-babies.html

Not much else to say. Missy Morgan passed away on Wednesday from breast cancer. Her son Ryan passed away yesterday from neuroblastoma.

My Melissa wrote the following on Thursday night but never posted it:
Today I'm reminded that there is pain in this world greater than my own, which at times seems impossible. If you've never followed along on SuperRyan's journey through NB as his mother battled breast cancer... well... then you don't know pain. Ryan's been in the fight since 2004 and, like my Max, he has unfortunately not been able to find the cure and is home now simply battling the pain. Both he and his mom, Missy, are on home pain care. Last night his mom, Missy, passed away. How much pain can a family be expected to endure? All at once?

My favorite memory of Ryan, though I never got the privilege to meet him in person, is a picture of him standing amongst some Hooters girls with a "I am getting away with something here and I know it" smirk on his face.

I don't have a single favorite memory of Missy. I have many. She was one of the several NB moms whose unsolicited advice and encouragement I was always happy to receive. Here are some of the emails and blog comments Missy wrote to us over the years.

what a beautiful face, a beautiful spirit. We think of you everyday and pray for your strength.
Missy Morgan

Just wanted you guys to know you have been on my mind. It is so painful to think of how much you must miss Max. I wish there were someway to relieve that. We are praying for you to be able to stay as strong today as you have been the last three years.
Love, Missy

Hi Andy and Melis, Just checking on you guys this morning. Max is getting the same chemo as Ryan and they let us do it all at home. The visiting nurse comes the first day and accesses his port. sometimes she brings the irinotecan with her and sometimes they deliver it separately. anyway, it comes in 5 bulbs, one for each day and we keep it in the fridge. I don't know the physics of the bulb, but we just hook it up to his line and it pumps in over an hour. his temodar is oral, which I think it always is. you might ask if ya'll could do the same so Max doesn't have to go to the clinc. I know they have one more kid doing this here at CHOA. We are praying for ya'll.
Have a great Sunday,
Missy Morgan

Hi Andy and Melis, the new pics of Max getting accessed just broke my heart. I'm sure you're not short on suggestions, and I hesitate to make one, but-- If Max is only having a blood draw could he just have an arm stick? Ryan always prefers this to accessing his port. As a matter of fact, a week ago at the clinic he insisted on a finger stick, and our poor nurse just pumped and pumped his finger to get enough. Ryan's platelets are slow to respond, too and I have had the same sorts of things on my mind as well. I hope you will post the answers you get from your docs. we are praying his catecholomines drop and he gets a break. take care-
Missy Morgan
(superryan's mommy)

Our son, Ryan, just started the irinotecan and temodar. We go to the clinic the first day and a nurse comes out the next four to give it to him at home. He did great with that. It only works because he doesn't need all the hydration that usually comes with the chemo. The iri. only runs an hour and the tem. is oral. Could that work for ya'll so Max doesn't have to go to the clinic? Also, Ryan does better when he starts with an empty stomach. He had no nausea on those days. Good luck with it!
Missy Morgan

June 30, 2009

Today was a difficult day. Surely the hardest to bear since Max passed away ten months ago. Which seems like only yesterday.

Stuff you never saw

Max's first day - June 30, 2001

Max's last day - August 31, 2008 12:04PM

Later same day during Nic's premature 3rd birthday party. Max came out for a few minutes while Nic was getting his birthday presents. Max kept his eyes closed as the light was too bright for him outside. And he kept his throw-up bin resting under his chin - his security blanket it became.

OK, on to better days. Fall 2005 was a time when we didn't post much about life as we were too busy living life to the Max! So thought I'd show you some pictures of Max from Fall 2005. Usually late Summer/Fall sucks around here. My mom passed away in 2002 in August. My

October 2005, 23rd St Del Mar: Secret: come to San Diego in October. It's nice at the beach during the evening. In June and July, it's freezing!

October 2005, Miramar: Max and a Blue Angel at special Make A Wish airshow.

October 2005: Max loved to fish with Papa, especially in the ocean or a lake!

October 2005: Max about to whack one.

See?

Sept 14, 2005: Nic was lucky, he had four people caring for him 24/7.

September 2005: Right before Nic was born. This is a series of pictures that I so love where Max and Melissa are totally enjoying each other and the general scene at the "park by the beach" which is our 2nd home on the weekends when it's sunny. Max had such a beautiful head; when his hair came in curly and blond it was the only way it could have been more kissable than when his hair was short and soft.

Rockets

Tuesday is Max's birthday. Max's Cub Scout troop will salute him with a multi-rocket launch, then hi-tail it out of there and head over to the picnic. Here are the specifics:

Tuesday, June 30, 2009

2:00 - Rocket Launch

**email or call Andy or I for location**

strictly on the QT, DoD, PDA, CIA, NTK, etc...

2:30ish - Picnic

Carmel Creek Park (map)

Bring your own food and drink, chairs, etc.

Huge playground, green space, and parking in lot.

We will be there immediately following the launch.

Shoot me an RSVP if you plan on joining us. I will have a birthday cake and want to make sure I have enough for everyone (but not so much that I have to take it home and eat it!).

We hope to see you there for this last day of remembering Max on his birthday this year.

Monday - Wii Night

Monday night we will continue our birthday celebration/remembrance of Max with Wii night at our house, 6:00-8:00pm.

We have two TV's and two Wii's so far (but only four controllers). If you're coming to play, bring along any Wii accessories you're comfortable sharing (and a TV if you're really adventurous!). For games we have mario kart, star wars, indiana jones, Wii sports, and ww2 flying aces.

We'll be set up in the garage. Bring lawn chairs. Email me if you have questions -- cureNB(at)gmail(dot)com. Hope to see you!

Nacho Nic

Every mother's nightmare; every father's dream: Their 3-yr-old son wearing a Lucha Libre mask.







Out of all the cr*p Nic had his pick of at the SD County Fair, this is what he saw upon entering the fair and he held fast throughout. So when we exited, he picked out his favorite design.







Without Nic to remind us that there is a life to live even though Max isn't here any longer, I sometimes wonder what I would do.

Max's Place

Max's permanent urn arrived today! More than 8 months in the making. We are so happy with it and with the artist Chris and Funeria who brokered the commission for us. More pictures soon as the detail is amazing, but this shot gives you a sense of the scale of his place. OK, yes, take a step back and realize that we're excited about an urn to hold the ashes of our 7-year-old son... but in relativeland which is where cancer parents live, this is a good day.

Max's Birthday Fun

Max's birthday is fast approaching... June 30.

From Austin Melgar's blog we saw that his family had planned a whole week of events to celebrate Austin for his birthday. We loved the idea, and decided to adapt their idea for Max's birthday, albeit abridged to four days of fun Max's style. Our plan is to do activities as a family that Max loved to do, and as Max would've liked, invite his friends and extended family to join us and Live Life to the Max!

We are nailing down the specifics on everything, but here is a loose look at our plans, so you can set aside time to join us if possible...

Saturday, June 27, 2009

(confirmed)

Pizza Port

A family favorite for food and games.

4:00pm

135 N. Highway 101 - Solana Beach map

(858)481-7332

Sunday, June 28

(confirmed)

MIDWAY AIRCRAFT CARRIER

One of Max's all time favorite spots. WWII warbirds, modern day fighter jets, and a huge ship. We'll see you onboard.

12:00 noon

Midway admission:
$17 adults
$13 seniors (62+) and students (with valid ID)
$10 retired military (with valid ID)
$9 youth (ages 6-17)
$0 (ages 5 and under)

website

map

**

Monday, June 29

(unknown location at this time)

Wii Night - woo-hoo!

Video games got Max through a lot of crappy days - and through a lot of just plain ol' good days! Little known fact: Hannah & Max knew the entire story line of the Star Wars trilogies before they ever saw a movie thanks to the Lego Star Wars game. Max's favorite character: "the Gen" aka General Grievious.

6:00-8:00pm

location TBD

Check back for location confirmation.

Tuesday, June 30

Max's Birthday

(check back for details on locations)

Cub Scouts & Rockets.

On this very special day Max's Den Buddies will launch seven rockets in memory of Max. We will follow-up this salute with a picnic (bring your own stuff) and birthday cake (provided).

Location of rocket launch & Picnic TBD

2:00ish

RSVP's are not neccessary, but appreciated - especially for Monday & Tuesday. I could also use a little help coordinating the Wii/video game night. We have one Wii and one Playstation, along with one TV we can take along. Can you provide a TV, game station, extra controllers, etc.? Get in touch with me.

Visit Alexa

**Link has been fixed**

Alexa's big sister, Abby, has been in contact with Andy & I for the past few weeks. They had made the trip to VT from Ohio and hoped to get Alexa on Dr. Sholler's trial, but found out that wouldn't be possible. Alexa's cancer had progressed too far. Dr. Sholler couldn't even recommend any treatment options.

Please take a moment to visit their website and give them your love. They need all they can get right now. Little Alexa writes some of her own updates. Please sign-up for Journal Updates so she knows you're there.

Thank you.

June 27 Train ride CANCELLED

If you purchased tickets for the June 27th train ride in Campo, it's been cancelled! I just found out - and not because they contacted me with the news. "Due to circumstances beyond our control, all Museum rail excursions on the railroad mainline have been temporally canceled." Bummer!

You can email them support@sdrm.org for ticket refunds.

Andy & I are just about ready to post our plans for Max's birthday week, so check back here frequently. We'd love to have you join us at one or all. (We are figuring out what to replace this train ride with!)

$10,000

We did it. After tallying the online donations + at-event donations + some just-received-in-the-mail donations, Max's Ring of Fire raised just over $10,000 for neuroblastoma research!

Wow.

Touch-A-Truck was a huge success in every facet.

Thank you. Everyone.

Now for the photos! I've obviously posted a few here, but you can see more from our new friends at SRD - Strategic Racing Design - who brought our their fully outfitted pre-runner to the mix, in representation of off-road trucks and wrote a very nice blog post about the event. We've also received many photos uploads on our Facebook page - become a fan!! For a big look at the event, check out our Flickr Album.

If you have any great photos you'd like to share with us from Touch-A-Truck, please email them to me at cureNB(at)gmail.com. I'd love to see them!

Special thank you's must go out to all the really nice people who took four+ hours out of their Sunday afternoon to sit around in a parking lot and let kids climb in, on and all over their vehicles to benefit a pediatric cancer that they may have never heard of before. I wish that Andy & I had had more time to spend talking to each and everyone of you, to thank you over and over again, for giving us your precious time and vehicles to benefit a cause so close to our hearts. I hope you had even a 1/4 as much fun as all the kids did. (And thanks for tolerating all the horn honking! It did bring the place to life, don't you think?)

Which reminds me that our San Diego Star Wars Society made a lot of kids happy, too! I loved seeing the Clone and Storm Troopers in the vehicles as much as seeing the kids in them!

Touch-A-Truck Success!

Nicky & Daddy in the back of the "small" dump truck.

I'm just making a short post about our fundraiser right now, because there's so much to say and I just don't have enough time to put all my thoughts in order this morning.

Most importantly, I want to thank my friend Leigh for doing a splendid job of organizing this event for us - especially since none of us had any idea where to begin and what to expect. In one month she put in about 2+ months of volunteer time spearheading a very successful fundraiser.

We haven't tallied all the dontions, but we believe we raised about $8,000 for neuroblastoma research! Not too shabby, I say. Max's Ring of Fire is very thankful to Leigh, everyone who volunteered to help, the wonderful people who brought their trucks to a parking lot on a Sunday, and to all the generous people who donated their money to a worthy cause.

Thank you. It was a great way to celebrate my birthday.

(We have 100's of photos that we will upload later today for your viewing pleasure!)

Touch

In honor of recent NB angel Erin Buenger and her wonderful mom Vickie, today's post title is a verb. Mosey over to Erin's blog (appropriately re-titled, "Let's Do It!" after her passing) and read Vickie's latest post about Luke Skywalker and his mission in life.

Just a quick last-minute post about today's Touch A Truck fundraiser that we're putting on to raise money for neuroblastoma research. We've been doing most of our marketing for the event through local news and Facebook, not so much this blog, as so many of its readers are not local. However, for the 10-15 of you in America that are not on Facebook yet, if you're in San Diego today and looking for something to do from 12-3pm, come on over to Canyon Crest Academy in the eastern portion of Carmel Valley just north of the 56 for Touch A Truck. This is a family-friendly event that will have construction trucks, garbage trucks, race trucks, race cars, etc, that kids can touch, climb on, climb in, honk, and generally play on and around. We'll even have a car that kids can paint themselves! Our goal is to raise $10,000 from this event and checking last night we're well on our way with $2,500 in advance ticket sales/donations online already! 100% of the ticket money/donations goes to NB research. Melissa and I have footed the bill for all the rentals/permits/marketing expenses, or they are donated.

The weather today is still not cooperating but by 12 noon it should be somewhat less foggy. I can't tell you how much I hate this time of year in San Diego - its been overcast for the entire day by the beach for more than a week, and unlike other cities that come to mind (San Francisco, Portland, Seattle), San Diego does not wear the color gray well. Still, the purpose of why we are holding the event - honoring Max and raising $$ ofr NB research - doesn't diminish my joy and pride at all the work that Melissa and the legion of volunteers have done to make today happen. We will post an update later today or tomorrow after the event with pictures and a total amount that was raised.

Developments in Neuroblastoma Symposium

 

On Thursday (21st), I attended the Developments in Neuroblastoma Symposium at the University of Vermont. Present were about 120 parents, researchers, doctors and pharmaceutical industry representatives, as well as some medical students and nurses. It was beautiful weather in Burlington - 88 degrees was the high that day.

After the dean of the medical college opened the Symposium, Dr. Giselle Sholler welcomed everyone and then I spoke briefly for a few minutes. I spoke about Max, about the need for greater collaboration using the example in an email from a friend, Alessandra Blassina, who is an oncology research scientist at Pfizer in La Jolla.

Some highlights of the day’s presentations:

• David Krag, MD, did a great presentation on phage display for neuroblastoma. Phage display is a method of creating patient tumor-specific antibodies (phage are viral particles that infect bacteria - bacteriophage - which then make antibodies for you who might know what that means) which can then be attached to another molecule like a neurosphere (white blood cell). The patient tumor-specific antibody then easily finds and attaches itself only to tumor cells, and the proximity of the neurosphere to the tumor cell enables the neurosphere to attack and kill the tumor cell. Nice. Simple. Elegant. Approximate time to clinical application: 2 years. Approximate cost to develop phage display in neuroblastoma to phase 1 clinical trial readiness: $250K. (Note that time and cost estimates for this research are my own based on my understanding of the issues involved and have not been reviewed by Dr. Krag. But I do believe them to be directionally accurate).
• Giselle Sholler, MD, presented a lot of information:
• Preclinical work on genomic analysis of patient samples for the development of the personalized clinical trial.
• Identifying BTK as an important target of neuroblastoma tumor initiating cells which has led to preclinical work testing a BTK inhibitor.
• TPI-287 trial that is currently open in Vermont – they recently just filled their first study cohort and should begin accruing for the 2nd cohort very soon. What is great about the TPI-287 trial design is that even though it’s a Phase I trial, she has designed it to be a multi-agent trial, but the first two rounds are single agent only, so the pharmaceutical company gets good toxicity and pharmacokinetics data, and then the additional adjuvant agent is added (Temodar). And though it’s a Phase I trial, like all smartly-designed trials for a rare disease like neuroblastoma, they collect efficacy data (ie, does it work?) in addition to the study’s main purpose which is to measure toxicity and establish an MTD (max. tolerated dose).

• Craig Webb, PhD, showed how he is developing predictive models from tumor-derived molecular data that can systematically identify targeted treatments from existing pharmacopeia for metastatic and/or refractory neuroblastoma. The methodology and processes that he created form the basic underpinnings of a possible predictive or “personalized” clinical trial for 2nd-relapse/progression after relapse and refractory neuroblastoma patients.
• Nai-Kong Cheung, MD, PhD, the keynote speaker from Memorial-Sloan Kettering Cancer Center in NYC and a noted neuroblastoma expert, presented a history of immunology and immunotherapy in neuroblastoma. While Cheung had no new data to present, it was good to hear his perspective and point-of-view on how MSK treats kids with its 3F8 immunotherapy treatment. In retrospect, I think it might have been good to give 3F8 a try on Max – I know some people reading this will cringe that I’m playing “coulda-shoulda-woulda” and that I should feel confident that we did all that we could and that we made all the right decisions regarding Max’s treatment. But until you’ve experienced what we have experienced, fighting neuroblastoma for the four years that Max did, you don’t get to make that call ;)
  

Afterwards, the parents present gathered for a few minutes alone with each other. Gilles Frydman, (founder of ACOR.org) whom I got to moderate the last panel of the day on Therapeutic Decision Making in Neuroblastoma, provided us with some helpful perspective on what other cancer groups have done to successfully move research forward quickly.

Overall, it was very good to see some of the newest ideas for how we might be able to find therapies that improve chances of survival for these kids while being less toxic to their little bodies. At the same time, while energized from being around "my people", I also came away depressed that my fight continues on behalf of kids I know, but whom aren't mine. Still, continuing is the only option for me. I can't think of a greater purpose than doing all that I can to defeat neuroblastoma.

I returned to San Diego on Friday. On Sunday, some of the medical students at UVM as well as Friends of Will ran teams in the Burlington Marathon to raise money for Dr. Sholler's program. In all, $30,000 was raised!

KUSI Interview for Touch-A-Truck

On Saturday morning, May 23, we were invited over to our very-local TV station KUSI to advertise Touch-A-Truck! Our friends, the Mouratoff's, set-up the interview through Dave Stahl the Car Guy and let us borrow their Nascar and their daughter, to do a super great segment on the morning news.

Borrowing the car isn't quite as simple as it seems. NASCAR's are... well... a bit loud and not street legal. So the Mouratoff's actually got up with the sun, had the car trailered over to KUSI, unloaded it in the parking lot, pushed it into the back of the lot for the segment, then did the reverse to get it back to the car's home. It was quite a bit of work. All I had to do was show up and remember facts about the fundraiser!

A big "thanks" to them and to Erin for being the NASCAR spokesperson.

In addition to being able to climb in and get your photo taken in this NASCAR, we've added a few more vehicles to the line-up: