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:

Busy two weeks coming up

The next two weeks will be very busy indeed. Tomorrow, I fly to Vermont for the Developments in Neuroblastoma Research Symposium, where I am giving the welcome. I'll speak briefly about Max - reminding everyone in the audience the ultimate purpose of why we're all assembled in that one auditorium together - and then give a message about the power of collaboration and what can happen when parents get involved. It will be the first time I've had to speak about Max in front of a large audience since his death. I hope I hold it together. The symposium itself should be very good, with Nai-Kong Cheung from Memorial Sloan Kettering Cancer Center (MSKCC) the keynote speaker. Cheung and MSKCC developed an antibody therapy for use in neuroblastoma called 3F8 that uses mouse-derived antibodies to target a receptor on a neuroblastoma cell. When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient's own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them.

Max's doctor from Children's San Diego - Dr. Roberts - will be at the sumposium as well, as part of the new Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) that includes San Diego, St. Louis, MDAnderson (Houston) and Vermont hospitals. Also very exciting is that I got Gilles Frydman to moderate the final panel of the day, on therapeutic decision-making. Gilles is somewhat of a rock-star in the cancer/patient advocacy world. He started ACOR, which is one of the oldest online disease communities, and the largest online cancer community. ACOR is where NB parents connect online to share advice, provide support, and learn about new treatments.

Also great to hear is that many other parents and parent-foundations will be at the symposium, including parents from Ishan Gala Foundation, Friends of Will, Band of Parents, MagicWater, Grace Oughton Cancer Foundation, and others. It is through the combination of all our efforts that we will find a cure for neuroblastoma sooner. Just to let everyone know, these parents - myself included - take valuable vacation days from our day jobs, and spend our own personal money (not their foundation's), to attend events like the Vermont Symposium. 

I mention how money is used, as on the 31st of this month (Melis' birthday in case you're keeping track) is Max's Ring of Fire's first fundraiser called Touch A Truck.We hope to raise $10,000 for Dr. Sholler's neuroblastoma research program at UVM with this event. We're well on our way with over $1,000 in tickets already purchased, but still have a ways to go. If you are planning on going, it would be great if you buy your tickets in advance as this helps us know how many people will be coming. And if you're not coming, why not buy a ticket anyway? We're inviting all the families actively being treated at Children's Hospital San Diego free of charge, many who otherwise might not be able to afford the ticket price, so sponsor a family today if you can!

Max in Vermont at the ECHO Science Center, Jan 2007 during hopeful times.

 

Touch-A-Truck Confirmations

Check these out:

Del Mar Lifeguards truck & boat

2 Harley Trikes++

$25 per family

$15 per family for active military w/ ID

$25 per group in uniform: girl scout troops, boy scout dens, indian guide tribes

Buy your tickets online at
www.MaxsRingOfFire.org
or at the entrance on the day of the event.
Cash or check only please at the event.

To download a flyer to help us spread the word about this awesome event, click here. Post it in your local coffee shop, community boards, pass it out at your school!

If you have a special vehicle that you would like to share with kids, please download our Participation form and return it ASAP. We would LoVe to have you participate!

The Party Game Truck

Winston Cup Nascar

Soccerball Bug

Also the Petco Mobile Grooming van + a dog; Rose Towing tow trucks; two school buses; fire engines; police car or two if everyone in Carmel Valley behaves; mini cooper.

More to come...

Max's Ring Of Fire May 2009 Update

An email newsletter was sent out last night to our small but growing number of people who have signed up to receive email updates from Max's Ring of Fire - to view the newsletter you may click here. If you'd like to get your updates on Max's Ring of Fire via email, you can sign up here. Otherwise, if you're a "fan" of us on Facebook you'll get updates there - and if you're on Facebook but not a fan of Max's Ring of Fire yet, here's the link for that too. And we'll continue to post updates on our progress with Max's Ring of Fire here on Max's blog. Thanks to everyone for all your support.

Touch-A-Truck

Sunday - May 31, 2009

12:00-3:00

Canyon Crest Academy in Carmel Valley

where Del Mar Hgts Rd meets Carmel Valley Rd

Put your imagination in gear and go! Join us for Max's Ring of Fire's 1st Annual

TOUCH A TRUCK

where kids get a chance to get behind the wheel and rub elbows with their hometown heroes. Come and climb on and explore dozens of your favorite vehicles including big rigs, fire engines, police cars and construction trucks.

Please join us for an awesome family-friendly afternoon while supporting our efforts to fund pediatric cancer research for neuroblastoma, the cancer that Max battled for four of his seven short years.

5951 Village Center Loop Road
San Diego, Ca 92130

$25 per family

$15 per family for active military w/ ID

$25 per group in uniform: girl scout troops, boy scout dens, indian guide tribes

Buy your tickets online at
www.MaxsRingOfFire.org
or at the entrance on the day of the event.
Cash or check only please at the event.

To download a flyer to help us spread the word about this awesome event, click here. Post it in your local coffee shop, community boards, pass it out at your school!

If you have a special vehicle that you would like to share with kids, please download our Participation form and return it ASAP. We would LoVe to have you participate!

Special appearances by the

Stormtroopers? Jedi? Darth Vader? We never know who'll show up!

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.