Max Mikulak - neuroblastoma angel

Sydney Dudley - Angel

amikulak@yahoo.com (Andy (Max's dad)) — Sun, 14 Mar 2010 14:21:00 +0000

Sydney Dudley passed away on Friday night, not too long after Sam passed. To have two kids whose lives we follow so closely pass away suddenly so soon after one another...

Here's the news posted on her CaringBridge site (registration required) by her mom Rhonda:

Sydney Marie Dudley went to heaven....very suddenly.......we think she bled internally......

I will never be the same.......

my baby girl......

Though we never got to meet Sydney, Rhonda's amazingly positive and wacky posts described a girl whose heart was pure and loving. Sydney was treated by Dr. Sholler and they were friends as much as any two people could be, and so I know the good doc's heart is very heavy right now processing Sam and Sydney's passing.

Please pray for Sam and Sydney's families. While hearts are heavy here on Earth, I'm sure Max, Erin, Eden, Penelope, Ryan, James, Nathan, Spencer, Lucas, Dustin, Cody, Zachary, Katie, Austin, and all the other NB kids who preceded Sam and Sydney's entrance to heaven, greeted them with open arms and enveloping love.

Garage Sale - rescheduled

noreply@blogger.com (Melis) — Sat, 13 Mar 2010 22:22:00 +0000

In light of Sam's passing, I am postponing the garage sale until the end of April. Thanks for you understanding.

Sam Hutchison - Angel

noreply@blogger.com (Melis) — Sat, 13 Mar 2010 01:11:00 +0000

Sam made his way to heaven this afternoon.
Please leave a note for his family...

Team Sam

Max and Sam in the hospital getting chemo together as only kids can do.

10, 9, 8, 7...

amikulak@yahoo.com (Andy (Max's dad)) — Thu, 11 Mar 2010 14:29:00 +0000

We are close to launching the marketing effort for Touch A Truck. The new Max's Ring of Fire web site is up, ready, willing, and able to collect and process entry ticket and raffle tickets sales. We still have a few needs for raffle ticket prizes - mostly in the upper range of value ($2,000). We have a lot of irons in the fire for this prize tier, but need to make sure that we have a really attractive package of prizes for people to have a chance of winning. So, if you have ideas/connections, please let us know. Melis and her dedicated team of volunteers (meeting again tonight) have all been working very hard to lay the foundation for a great event which should raise a lot of money for childhood cancer research and clinical trials.

Now the REALLY hard part is about to begin: Promoting the event.

How can I help you ask? Glad you asked, here's how.

1) Tell your friends. Email them a link to Max's blog (www.MaxMikulak.com), Max's Ring of Fire (www.MaxsRingOfFire.org), or spam your Facebook friends and send them to our Fan page (www.Facebook.com/MaxsRingOfFire).

2) Help sell raffle tickets. If you want to sell them in your neighborhood, let us know and we'll get you a batch. Got an iPhone? We can give you a secure credit card terminal that accepts all major credit cards (just like the iPhone commercial, complete with fingertip signature)!

3) Get stuff. We can always expand the raffle or even hold an auction at Touch A Truck. Contact us or sign-up on our Max's Ring of Fire volunteer form.

Max's Garage Sale

noreply@blogger.com (Melis) — Sat, 06 Mar 2010 06:00:00 +0000

Thought I'd put our good ideas to work and see how a real Max's Garage Sale would work.

Saturday, March 20, 2010 I'm hosting a garage sale in our driveway with 100% of the proceeds going to pediatric cancer research.

For those of you that had contacted us this past November following our volunteer party, you have access to our Google Group page that has a list of files to help with your own fundraising (if you're interested in volunteering your time and talents, we can still add you to our group!). None of the fundraising ideas have been put to use yet, so I thought I'd break the ice.

With the garage sale, my kids want to host a lemonade stand. I'll post pictures of how it turns out to inspire and awe you!

I could use your help with our garage sale:

Stuff - I need it.
Buyers - I need you to come with full wallets! *I will be able to process credit car donations on my new iPhone!! Woo-hoo!
Share - if you would be so kind in sharing this information with your friends, letting them know about our garage sale and that all the money raised will go to kids' cancer research.

If you are interested in cleaning out your garage and donating some items to our sale, we will be happy to sell them for the cause. Here's a help list of what we will try to sell and what we've learned from experience doesn't sell:
Yes, we'll take it:

Baby/toddler clothing in good condition
Toys
Furniture in pretty good shape
Home Electronics (tv, radio, dvd players, etc.)
Art Supplies
Anything for kids
Computers and Equipment
Art Supplies
DVDs & CDs
Gardening equipment
Art & Collectibles
and more!

No thank you - doesn't sell:

Bed mattresses, sheets
Item's too "used" or worn
Magazines, books
Anything dirty or dusty
Anything torn or with stains
Shoes (unless new and unworn)
Clothing not for babies/ toddlers
Upholstered furniture not in great shape

Depending on the size of the item(s) you'd like to donate, we can try to schedule a pick-up if you're unable to drop off. I can't promise anything.

Email me: Mel@MaxsRingOfFire.org

On the move with more fundraising for the cause.

Live Life to the Max - fall into our Ring of Fire!

Touch-A-Truck Raffle

noreply@blogger.com (Melis) — Fri, 05 Mar 2010 19:54:00 +0000

Wow - we have been so busy putting together raffle prizes for our TAT event. We're wrapping it up next week, making final decisions on how to package all the great prizes, and will soon have raffle tickets available online!

I've got one problem... I've got no toys for the kids-only-raffle! I can't tell you how many incredible prizes we've received that you are going to go bonkers over... but the kids got nuttin'.

We're looking for toys in the $20 range that are pretty much girl/boy neutral - although, having construction trucks would be par for the course at this event. If you have a neighborhood toy store that you'd like to ask - or if you feel up to making the donation yourself - here is our Raffle Donation Form.

We can arrange to pick-up donations or they can be mailed to
Max's Ring of Fire
PO BOX 3142
Del Mar, CA 92014

Email me: Mel@MaxsRingOfFire.org

Toy ideas: Klutz books, toy trucks, dress-up, building sets (lego, lincoln logs, tinkertoys, trio), book sets, toddler toys, kid camera, Thomas the Train items, Hot Wheels, arts & crafts, beach toys, beach chair, bug stuff, etc.

Thanks for your support!!

Dream beneath the desert sky

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 17 Feb 2010 14:10:00 +0000

We took a last-minute trip to Joshua Tree National Park this valentine's day weekend. Partly it was to escape San Diego in general. Partly it was to attempt to recapture some of the structureless living that we did while Max was in treatment. Partly it was just to make sure we keep doing things that generally we didn't do while Max was sick, simply because it too difficult with everything else going on.

Attaining cruising altitude

Soaking it all in

An amazing natural amphitheater

That'd be a Joshua Tree

Buy Keen's if you want traction on rock. Hannah was like a mountain goat sticking to the sides of rocks at impossible angles.

Nicky and Hannah had a good time. We probably found "it" for Hannah, meaning an outdoor activity she really, really, really can get into. She's so tactile, so physical in her exploring. She was climbing arches, entering caves, touching everything. Running from boulder formation to boulder formation while we generally stayed on-trail. Nicky had a lot of fun too but was nursing a cold/fever at times so had to be carried at times. He's also our careful guy and so not necessarily jumping from boulder to boulder without help.

We of course took Max with us. Melissa and I discussed on the drive up to Joshua that it was OK if Max's urn got the markings of use from these trips, that if it got scuffed, scratched, dented and banged-up, it was just memories of Max being with us on these adventures. Though I also need to get a specific backpack for carrying Max, as the urn is about 25lbs and fairly long and narrow. Anyone who saw me pull it out of the backpack probably thought I had a miniature nuclear weapon, and I'm just waiting for the time when I have to explain what it really is and who's inside.

Can anyone can spot the carnivore in the background?

5,000 ft at Keyes Point. To Hannah's right is the Salton Sea and to her left is Palm Springs

Max on a rock

Nicky and Melis working on Nicky's Jr. Ranger booklet

Monday morning it was perfect - chilly but not too cold and not too warm. Kids had long leggings on to protect their skin from the rock. This is Nic re-enacting an alien after having a light sabre plunged into him by Anakin Skywalker. Yes, our preschooler watches The Clone Wars on Cartoon Network...

Arch Rock. About 35ft down either way.

All in all, it was good to get away for a couple of days. We have a lot going on in cancer world, and haven't been putting all that is going on in one place. Here's what we were temporarily escaping from this past weekend...

Touch A Truck
The effort to secure raffle items for the Touch A Truck tiered raffle is rapidly coming to an end. Thank you so much to everyone who has helped us out (Carrie, Rich, Alessandra... I'm missing people but you know who you are), we still need a few items so please review below and contact us if you can help ("help" can also mean just buying the item we are attempting to have donated, such as what we did for the two iPods we are giving away in the raffle).

Kids Bike $50-100 range
Weekend stay at a local hotel
Kids toys in the $20-25 range (building sets, construction trucks, scooter, boy/girl generic)

We will be selling raffle tickets online as well as attempting to sell them locally at select sites (a la Girl Scout cookies). We will be using iPhones credit card terminals to allow people to use their plastic to buy raffle tickets (in addition to checks and cash). Anyone with an iPhone and a desire to help by setting up your own raffle ticket stand please contact us. We'll supply you with everything (except the iPhone!) you need.

As part of this effort to seamlessly blend online and mobile commerce with a raffle, I'm re-building (for the 4th time) the Max's Ring of Fire website on a more friendly commerce platform. This will allow us to sell tickets, collect donations, both online and via iPhones, with very little overhead. We're learning as we go along how best to leverage the resources we have to do the most we can.

Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC)
This is the research and clinical trial consortium that Dr. Sholler leads, which has many researchers and hospitals collaborating on research and clinical trials (including Rady Children's San Diego). Less than six-months old, already the NMTRC has 3 trials open and 1 pending opening. This is where the money raised by Max's Ring Of Fire goes - to help drive the research and the clinical trials that kid's can get access to now! Anyone interested in seeing the direct result of the money they've contributed to MROF can come with me on a tour of Rady Children's and see kid's getting the therapies available through the NMTRC.

Please keep in your thoughts Erik's family, Sam and his family, Eden's family who just experienced the 2nd anniversary of her passing, and the thousands of other kids and families fighting for their lives, or for the parents living in the aftermath of losing their child.

And so as to not end on a down note, let me just direct your attention to Steve Dolling, Spencer's dad, who with family is on an extended sail cruise in Mexico. His writing was always amazing and it continues. Living Life to the Max never sounded so good...

Joshua Tree (more later...)

amikulak@yahoo.com (Andy (Max's dad)) — Tue, 16 Feb 2010 03:19:00 +0000

Erik

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 10 Feb 2010 06:09:00 +0000

Erik's in heaven. His and his family's grace are... inspiring.

When a final resting place becomes a work of art

amikulak@yahoo.com (Andy (Max's dad)) — Fri, 29 Jan 2010 16:12:00 +0000

Don Bartletti, Los Angeles Times / January 17, 2010
Melissa Mikulak and her son Nicky play in the living room of their San Diego home where a custom made urn holds the ashes of her son Max who died of cancer in 2008 at age 7. Max was a Star Wars fan so the Mikulaks commissioned artist Chris Rizzo to make the machined aluminum container that looks something like a Star Wars X-Wing fighter. As cremation becomes more accepted, a growing number of consumers want artful urns that capture the personality of the person they memorialize.

The Conductor

amikulak@yahoo.com (Andy (Max's dad)) — Thu, 21 Jan 2010 16:56:00 +0000

The sublime beauty of our world is sometimes most evident in situations which most people consider uncomfortable and difficult to witness.

Erik Ludwinski, who has been mentioned here many times before, is a young man of 24 years but much, much, much fuller of mature wisdom and perspective than anyone I know. Erik has a difficult path ahead of him. Imagine being told how you might die... soon. Imagine hoping for the relatively calm but still potentially painful path to death through liver failure due to tumor burden. This, versus the stressful, chaotic and scary path to death through brain tumors and the non-stop seizures that accompany them. As Erik's mom Donna puts it so bluntly, "How would you orchestrate a death?" Much less your son's death.

Erik has much to say about this whole ordeal, and loves that some people want to hear how God is supplying tangible strength to endure this wicked challenge. It blesses him tremendously to share what he has learned, and for those he is close to--also the fear and pain of facing death, and cry together. How many of us can tell someone how to die, or how to trust God in the process? We have to hear from Erik not preach to him.

Thankfully, Erik's pastor has captured some of what Erik has said and I know I am not the only one hoping to hear and learn more from him. Erik's in charge and he's conducting the orchestra. Our job is to listen to and appreciate the beauty of the music he's creating.

Can you help?

amikulak@yahoo.com (Andy (Max's dad)) — Sun, 17 Jan 2010 16:02:00 +0000

Our Touch A Truck fundraiser this year will also include a raffle. We have a team garnering raffle items now but I thought I'd post some of our "wish list" items in case anybody reading this can help get us them (or similar equivalents). The raffle is tiered, so for Tier 1 below, the raffle tickets will be $100/ea with only 300 tickets available, thus the chances of winning one of the packages are pretty high. Tier 2 tickets will be $50 and 350 will be sold, and so on for Tiers 3 and 4. Please send us an email if you (or someone you know) can be of any help!

TIER 1 - $2000 value

Home Entertainment Pkg
* Flat Screen TV
* Blue Ray DVD Player
* Bose Surround Sound

SD Getaway Package
* Four Seasons Aviara OR
* La Costa Resort OR
* L'Auberge Del Mar OR
* The Grand Del Mar

Get out of Town Package
* Mammoth lift tix
* Mammoth hotel

PacClub Membership

TIER 2 - $500-1000 value

Apple Laptop Computer

I Love Del Mar
* Americana Cafe
* En Fuego
* Il Fornaio
* Jakes Restaurant
* Kitchen 1540
* Sbicca
* Stratford Court Cafe
* Bully's
* Jimmy O's
* Pacifica
* Seaside Yogurt
* Board & Brew
* Secret Café
* Giorgio's (osteria)
* Poseidon
* Rendezvous
* Shimbashi Izakaya
* Dinner for 10 at ???

TIER 3 - $200-400 value

Netbook (Acer)

iPod Touch + Speaker Dock

Legoland Weekend at Sheraton

SD Family Fun
* Balboa Park - Aerospace Museum
* Balboa Park - Carousel
* Balboa Park - Hall of Champions
* Balboa Park - Japanese Garden
* Balboa Park - Mini Railroad Ride
* Balboa Park - Museum of Man
* Balboa Park - Museum of Photographic Arts
* Balboa Park - Natural History
* Balboa Park - Model Railroad Museum
* Balboa Park - Automotive Museum
* Balboa Park - Museum of Art
* Balboa Park - Space Theatre
* Balboa Park - Zoo/Wild Animal Park
* Birch Aquarium
* Childrens Museum
* Maritime Museums
* Midway Aircraft Carrier
* Museum of Contemporary Art
* Museum of Making Music
* Quail Botanical Gardens
* SD Harbor Excursion
* Sea World

Theater/Music Lovers
* La Jolla Playhouse
* North Coastal Rep
* Old Globe
* House of Blues
* Anthology
* Belly Up
* Humphrey's
* Copley Symphony Hall

Restaurant Round Up
* Pamplemousse
* The Fish Market
* Arterra
* Zinc Café
* Brent's BBQ
* Brigantine
* Bruggers Bagels
* Cupcake Love
* Market
* Milton's
* Chuao Chocolatier
* Paradise Grill
* Pizza Port
* Roy's
* Ruth Chris
* Sammy's
* Taste of Thai
* Enoteca Zins (Carlsbad)

TIER 4 - $50-100 value

Let's Eat Out Tonight, Mom
* Rubio's
* Souplantation
* Pat & Oscar's
* Oggi's

Thoughts

amikulak@yahoo.com (Andy (Max's dad)) — Fri, 15 Jan 2010 04:55:00 +0000

Some kids that we are very close to (either virtually or physically, but always emotionally) are having a tough time right now. Would you please take a moment and think a good thought, say a prayer, say thanks to someone or no one in particular, in their name? You can also visit their sites and let them know that a lot of people are thinking of them.

Sam Hutchinson (www.teamsam.com)

Sam and Max got to meet some pretty good sports heroes together. Below: Trevor Hoffman. Bottom: Sean White, Bob Burnquist, Bucky Lasek and Tony Hawk with some sort of weird lens flare on his face, hanging at Tony's warehouse in 2007.

Sam has had off-and-on pain problems for more than a month. He needs pain relief and a therapy that works. We hope he and his super-human parents find both, fast.

SYDNEY DUDLEY (https://www.carepages.com/carepages/Sydneymarie/)

Sydney has been treated for years by Dr. Sholler. Her mom Rhonda is a rock and always finds a way to be cheerful despite sometimes dire circumstances. They just found out today, after a relatively calm 2 years after Sydney beat back relapse, that she has cancer in her pancreas and possibly liver. Some other areas are stable or improved. So some good new but mostly bad.

ERIK LUDWINSKI (http://www.caringbridge.org/visit/erikludwinski)

We almost got the chance to meet Erik in person (he was going to come out to Maxapalooza and stay with us - how fun would that have been?!), but got the privilege of meeting Donna and the rest of the Ludwinski crew this past summer. Erik has had a lot of pain issues - a lot seemingly caused by spinal cord compression from a tumor wrapped around his spinal cord - and just went through surgery to have it removed (it was successful!). Erik has a difficult road ahead of him and his tireless mom is smart and tireless as she investigates possible treatments. Erik has been fighting this disease since he was six and he's now 24. Time for the guy to get a break (and his mom too).

Please pray for Erik and Sydney, Will (who had improved scans today!) and Sam, Riley, Nathan and Aidan, and all the other precious kids fighting pediatric cancer.

noreply@blogger.com (Melis) — Tue, 12 Jan 2010 04:31:00 +0000

I was struck by this today. From Will Lacey's blog ...

Will has completed 57 cycles of chemo and the last 20 cycles have been under
the guidance of Dr. Sholler in Vermont.

The last 20 cycles have given Will an incredible quality of life.

The last 20 cycles have allowed Will to live life as a normal kid.

The last 20 cycles were not available anywhere else.

Think about that.Over 1/3 of the cycles of chemo we have given to our son - the last 18+ incredible months of his life - are a result of treatment he has received that he would not have gotten, could not have gotten, anywhere else.I'm forever grateful that Will has had this opportunity to try this therapy, to have these options, because I know that we are incredibly fortunate to not only have these options available but to be so close to the care team that is providing them.

57 cycles of chemo starting when Will was 9 months old! Lance Armstrong wouldn't even be able to comprehend that amount chemo... particularly in the body of small child.

Sharing this information is another reason we are trying so hard to fund the NMTRC. You can help us on this front by making a donation, donating your time, hosting a fundraiser. Every little bit helps. It's all on our website: http://www.maxsringoffire.org/

Internet Friends

noreply@blogger.com (Melis) — Sun, 10 Jan 2010 04:20:00 +0000

In my mind it always seems so weird to me to hear about people who meet through the internet, and yet Andy & I have had the opportunity to meet strangers via the internet ourselves.

Take Pat Lacey, instance. Or the Brunskows. Wonderful people who shared a strong bond with us even before we met: neuroblastoma.

Today we had the honor of meeting in person the incomparable Vicki Buenger of Texas, mom to the Great Erin. We shared kid stories and talked NB shop for four hours.

As I try to write about our meeting I'm on the verge of tears, because honestly: I know her. Yes, this is the first time I've laid eyes on her. No - I've never even spoken to her on the phone before today. But there is an unseen, unexplained bond that I feel with her, with Pat (Dina one day soon!), with Paul & Nina - that we've been in battle together and will meet there again and again.

It's hard to explain the comfort I feel with these people. I think they know. I don't think I'm weird on this front. There is just a comfort, a knowing, an understanding that reaches well beyond needing to know someone for years. We've traveled the same parallel road for years. It doesn't seem to matter that our roads never actually intersected.

I know you.

Thank You!

amikulak@yahoo.com (Andy (Max's dad)) — Tue, 05 Jan 2010 19:24:00 +0000

Max's Garage Sale raised over $2,500 in the month of December for pediatric cancer research. Truly, a win-win-win! Thank you to everyone who participated. I wish it could have been 10x or 100x that amount but we will get there, not soon enough, but soon. If you are interested in where the money goes, the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) web site is now live.

2009 Holiday Update

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 30 Dec 2009 04:14:00 +0000

Its been quite some time since we wrote a meaningful update on our family, so Melis and I mustered up the energy during our stay at Tahoe (more on this later) and wrote an uber-update that spans the Thanksgiving-Christmas-New Year’s season.

Thanksgiving

We celebrated our 2nd Thanksgiving Without Max relatively well. We used to host Thanksgiving dinner and the memories that were created were so wonderful, but haven't felt "right" about hosting it since Max is no longer with us.

We started out early on Thursday morning with our first new tradition - the Thanksgiving morning hike. We were going to do one of the many turkey-trots offered throughout San Diego, but decided that Torrey Pines State Beach was calling us loudest. So we went by the Del Mar Starbucks for warm beverages and then hit the parking lot at Torrey. Though it was a beautiful morning (and dead batteries in the camera...), there was a Santa Ana brewing, crazy cold right on the beach as it was shaded from the sun by the high bluffs and blowing about 30 mph. So we decided to try the sunny mesa right above the beach. This was also a favorite hiking spot during Max's last year and so it felt right to be there, warmed by the sun. We hiked along the old road that used to be Hwy 101 and the main north/south auto route between San Diego and LA. The road is maybe 12 feet wide and it's crazy to think that the 18-lane I-5 fwy a mile away is the direct descendant of the pavement we were standing on.

Thanksgiving dinner was hosted by Melissa's niece and her husband. The whole family showed up and we had about 30-35 people. Very fun and very loud! Melissa's parents celebrated their 60th anniversary after Thanksgiving dinner. The family put together a memory book and the kids had a great time hearing the stories about their grandparents (and great-grandparents for half of the kids present).

Nicky, Hannah and all their cousins

Friday morning, we again attempted the beach hike at Torrey and had much better results.

Clear, warm, sunny, and also joined by Melissa's brother Kevin, his wife Rebecca, daughter Ashley and grandson Kanan, who is 6 mos older than Nic. It was great for the cousins to have each other to run and play with on the beach.

We climbed on to "Flat Rock" for some sea-creature-searching - both Hannah and Nic got soaked by the time we got back to our car. Still, it didn't stop us from having lunch at our favorite taco shop - Roberto's on Carmel Valley Road - the cheapest ocean-view dining in San Diego...

Saturday we went to see Planet 51 which both kids enjoyed. It was cold and rainy on Saturday and so a good day for a movie. We picked up our tree on Saturday night and decorated Sunday. Nic is at that age where Christmas is IT, and so he's been fun to watch and be with as the excitement in him grows. All we need to do is manage the "me-me's" that is a hallmark of this season.

December

The holiday season is upon us and in full-force around the Mikulak household. Memories of Max are everywhere which provide some comfort but.... it's just so different without him. We have fun... but it's not the care-free Christmas fun that we used to have, and likely never will again, at least for us parents. Some people never get to be care-free in the first place, so we are thankful for the seven Christmas' we had with Max.

Nicky and Hannah continue to be full-force participants in Christmas fun and tradition. Nicky is 4 1/2 - the perfect age for Christmas. He is so excited, so into everything. It's hard to think of his favorite thing about Christmas, but one of them has to be the chocolate Advent calendar. Every morning he comes downstairs and I (Andy) get to help him find the day's chocolate. He loves whatever picture is on the piece of chocolate (“Mommy, it’s a snowflake!”), and he must have the gene that women claim makes chocolate put them in a good mood as he is just so happy after receiving his little 25-calorie chocolate boost in the morning.

We attempted some holiday tradition stuff around town and were successful at some of them. Our visit with Santa went well, this year as it is every year at the Quail (now San Diego) Botanical Gardens which are lit up nicely for the holidays. Hannah and Nic roast marshmallows, Melis and I have a glass of bad, warm malt wine, we walk around and look at the plants and lights, make crafts. All in all, a nice, mellow evening and this year especially so as it was raining out so the crowds were very thin.

We also visited the San Diego Zoo with our friends the Myers. It was again blustery and rainy but we had a good time anyway.

Hannah had a holiday party in her classroom this year. Her teacher, Ms Bross, likes to have the girls and boys dress nicely. Hannah was so excited, she is such a girl. Of course, the boys in class groaned as they had to wear nice pants and collared shirts. It was a heritage potluck and so all the kids brought a dish representative of their culture from where they came or from where their ancestors hailed. Given that, about 50% of the food was Asian (no complaints there – where else can you get home cooked?)

(Melis chiming in…) Nicky had a special Christmas program at preschool, which we’ve had the pleasure of seeing five previous times, first with Hannah, then Max, now Nic. Although Hannah & Max were both very happy to participate in the program, Nic refused. He’s funny that way. Afterwards, we enjoyed cookies and apple juice!

The day after the kids got out of school for Christmas vacation, we left town for our snow vacation in Tahoe with a surprise up our sleeve: Disneyland for the first day of vacation! The kids were very surprised and happy (although Nic had to warm up to the idea as change is not met willingly – even Disneyland). We enjoyed warm, Santa Ana winds all day in the Magic Kingdom. Sunday found us on the long drive to Tahoe (even longer with fog in the already mind-numbing Central Valley). But we were rewarded at the end with a yard full of snow! The road to our cabin was lined with 3-4 ft of beautiful white snow, which the kids dove into immediately.

Side note: Nic now refers to our Tahoe vacation as "going to Christmas."

(Andy again…) Monday was a snow play day with the DelaBarre's. Brian and Amy have two adorable girls – Jillian and Sabrina – and both Hannah and Nicky love to play with them.

We went sledding at our cabin and in Truckee at a local spot. The kids and adults had a blast, and then we went out for a nice pizza dinner at Zano's while it snowed heavily outside. The drive back to our cabin from Truckee was pretty spectacular as far as winter driving for a SoCal resident goes – driving snow with chain control over the Donner Pass. I know our Yukon XL is impractical for daily driving in San Diego, but you just cannot beat a big, heavy 4WD SUV for comfortable, safe transportation in bad weather (and, NO, we did not have to stop and put chains on the big, heavy, SUV).

Tuesday and Wednesday we went skiing at Sugar Bowl. Not as flashy or large as other resorts in Tahoe, Sugar Bowl is a perfect family ski resort. (Relatively) cheap and usually uncrowded with fantastic snow due to its altitude and location right at Donner Pass, it has become our mountain of choice when visiting Tahoe - particularly as it is located five short minutes from our lovely cabin! Hannah and Nicky took lessons in the morning on both days and then we skied together as a family in the afternoon.

This was really Nicky’s first time on skis (he was on them last year but no lessons and no lifts) and he did AWESOME! Tuesday afternoon we had him on an easy lift with a harness that I used to control his speed and direction (thanks to Brian for lending us that). I’ve never used a harness before and it was quite easy to ‘steer’ Nicky as you would a kite. He had a blast. Wednesday, we continued the same and Nicky was quite happy, singing in the lift lines and while going down the run. Melis and I were cracking up as we never hear such vocal signs of happiness coming from him, for such a sustainable time.

Hannah did awesome as well. She really loves skiing and was both a good sport hanging out with us as we skied with Nic, as well as ready for some skiing with daddy on longer/steeper runs. She is at the cusp between advanced beginner and intermediate. On Saturday, she got a 2 hour private lesson to learn how to ski with poles and she’s now hooked on them. It won’t be long before she’s parallel turning down the slopes like a local. To say that skiing together as a family is the fulfillment of one of my lifetime dreams would be an understatement.

Of course, there is the ever-constant-layer of sadness that permeates even the happiest experiences, this is just a fact of life that we’ll always have to deal with – and I hope never goes away. If anything, this vacation and especially the skiing portion of it, has shown me how easy it is to be a 4-person family, which just highlights that we are a 5-person family with one member missing.

Christmas Eve we decided not to ski, owing to the fact that Mommy and Daddy were a bit sore from previous days. We instead went into Truckee and bought new snow-saucers (Hannah had cracked our other one on Monday attempting a crazy sled run down a bumpy mountain) and did some last minute shopping at Mountain Hardware in Truckee which is a really fun store for both adults and kids. We then went to lunch at the Squeeze In Café, home to 6” tall whipped cream toppings on their hot cocoa. Even Hannah couldn’t finish hers. We then walked around to work off the sugar/calories from lunch. I was hoping that some trains would come through as I wanted Nicky to see them, as Truckee is a busy train town for a lot of east/west freight and passenger traffic. Downtown Truckee was magically in the holiday spirit – sunny, not too cold, with crowded sidewalks and roads as people went about their business.

We finally decided on a place for dinner that night and secured the last 5pm reservation at the Cottonwood Inn in Truckee. I’ve been driving past this place for more than 30 years and had never been there. It is the first ski lodge in all of Lake Tahoe, and sits right above the downtown area on a hill that used to be the ski run. We got to our reservation on time and the dining room was magically lit with large clear bulbs strung from the four corners of the room. A large circular chandelier hung from the ceiling lit with votives. Our window seat afforded us a view of downtown Truckee as the lights came on, and as freight trains passed underneath. Yet another Mikulak family tradition was born that night.

We then drove a short distance (we could have walked but it was getting cold and the road is busy/narrow) to a church right behind the Truckee Inn on Church St for a 6:30PM Christmas Eve service which was a family services called “Build A Pageant”. We knew Hannah would be all over this as dress-up was involved (she still loves to play dress-up even as a 5th grader). The sanctuary was crowded as we arrived, but Melissa and Nicky found seats in the front row and I a few rows back. Less than 70 people were there total but it was all very nice, cozy, family-like. Hannah played a shepard and of course, true-to-form, made an instant friend with another girl a year younger that herself. It’s truly amazing to watch this girl seek out other girls and make their acquaintance, if even for 10 minutes.

Christmas morning came quickly and the kids opened their two presents. Nic is a handful at this time of year and managing the “me-me’s” has proved to be a challenge. However, they each got only two presents – one from Santa and one from Max via Santa – so the consumerism was minimized as much as possible.

It was quite warm (40+) and so we decided to go for a hike through the neighborhood. We are staying near a small lake called Ice Lake which is frozen over. There were four pairs of snowshoes in the garage of our cabin so we donned them and went out on Ice Lake. It was brilliantly clear and bright with the sun reflecting off the snow. In the distance, kids were playing hockey in a little cove of the lake, and cross-country skiers schussed by. Snowshoeing is fun and only Nicky got tired as he had to deal with shoes that were a bit wide for his stance.

Saturday, we skied again. Expecting after-Christmas crowds we got there early and were ready to go by 8:30. The crowds didn’t materialize and we had a great day of skiing. I took Hannah up some longer/steeper runs which she did great on, but got a little tired as it was getting icy by the early afternoon which is no fun no matter how experienced a skier you are.

Riding to the top with daddy

In the not too busy lift line!

Ahh! Hot Cocoa after a long day on the slopes!

Last morning in the snow cabin.

Sunday, we are left Tahoe, driving home via the eastern slope of the Sierras on the 395, stopping for the night in Bishop, CA just to break up the monotony of the drive and also allow for some local exploring of this area which I think is beautiful.

(Melis…) Alas, we are home in beautiful San Diego. I picked up the cat from the kennel, and Andy took the car to the carwash where the guys asked him what the heck we did to our car – snow travel can really make your car dirty!

Hannah ran up the street as fast as she could to re-unite with her best friend, Jenna. Nicky immediately started issuing orders about who he needed to help him do what with his new toys. Back to the norm.

This week – Andy is off for the whole two weeks of vacation! – we are planning on taking the kids to the Train Museum to see the Lego set-up; possibly Legoland with the Myers’ Boys; the Big Balloon Parade downtown; and whatever else comes along.

Max is missed by all of us. Andy forgot to mention that we watched the Max video one day while in Tahoe and even Hannah had tears in her eyes. It was somehow refreshing to see her show sadness. I guess we all go through the ups and downs of loss, and it never seems to sync up.

Congress=COWARDS

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 09 Dec 2009 21:00:00 +0000

UPDATE

File under, "One can hope." Thanks to Bob at PAC2 for keeping us all updated. The NCI comment smells funny - politics instead of progress.

All, There have been quite a few questions about follow up to the information I sent yesterday. Following is a summary.

The House has just passed omnibus appropriations conference report (HR 3288) by a vote of 221-202-1, with 10 members not voting. The Senate is likely tobegin debate on the bill either later today or tomorrow. The conference report is the final House- Senate agreed upon language.

The conference report is the report I referenced in my email communication yesterday in which there is:

* $3 million that will go to the Centers for Disease Control for a pediatric cancer registry

* $1 million to carry out informational services to patients and families affected by childhood cancer authorized under the Caroline Pryce Walker Conquer Childhood Cancer Act.

At present, it does not appear there is an appropriation for pediatric cancer research as authorized by the Caroline Pryce Walker Conquer Childhood Cancer Act.

The report also contains the following unusual language which we are attempting to clarify:

The National Cancer Institute reports that it is meeting the funding level identified for pediatric cancer research in the Caroline PryceWalker Conquer Childhood Cancer Act of 2008 within its base budget. The conferees commend NCI for its attention to this issue.

I hope you will hold off contacting your members of Congress until we have clarification on this language and until after the Defense appropriation is passed next week. This will provide the best opportunity to fully address the outcome for pediatric cancer appropriated funding.

My Best,

Kate Shafer, LICSW
Director Of Advocacy
CureSearch

Headline: Congress UNANIMOUSLY approves $30 million for childhood cancer research.

Benefit: They get to be on the record as supporting our kids and the #1 CAUSE OF CHILDHOOD DEATH IN AMERICA OTHER THAN BY ACCIDENTS.

Reality: Kill it in the sub-committee as its an APPROPRIATIONS bill and therefore only authorization to fund if they really wanna.

Wanna read more? Check out these links below:
NO Funding for the Conquer Childhood Cancer Act

Go ahead and die...I don't give a shit because you do not vote and you'll be dead before you are 18.

Understanding Appropriations – The Carolyn Price Walker Conquer Childhood Cancer Act

If you are mad as I am, do something this holiday season about it. Pick out a congressman/woman in your home state and shoot them a quick email letting them know that you know this wasn't funded. Forward this to your local newspaper...


Senate Appropriations - Labor, Health and Human Services, and Education, and Related Agencies
Name	State	Phone	Fax	E-Mail
RICHARD C. SHELBY	Alabama	(202) 224-5744	202-224-3416	E-Mail
DANIEL K. INOUYE	Hawaii	(202) 224-3934	202-224-6747	E-Mail
RICHARD J. DURBIN	Illinois	(202) 224-2152	202-228-0400	E-Mail
TOM HARKIN	Iowa	(202) 224-3254	202-224-9369	E-Mail
MARY L. LANDRIEU	Louisiana	(202) 224-5824	202-224-9735	E-Mail
THAD COCHRAN	Mississippi	(202) 224-5054	202-224-9450	E-Mail
JUDD GREGG	New Hampshire	(202) 224-3324	202-224-4952	E-Mail
ARLEN SPECTER	Pennsylvania	(202) 224-4254	202-228-1229	E-Mail
JACK REED	Rhode Island	(202) 224-4642	202-224-4680	E-Mail
KAY BAILEY HUTCHISON	Texas	(202) 224-5922	202-224-0776	E-Mail
PATTY MURRAY	Washington	(202) 224-2621	202-224-0238	E-Mail
HERB KOHL	Wisconsin	(202) 224-5653	202-224-9787	E-Mail
House of Representatives Appropriations - Labor, Health and Human Services, and Education, and Related Agencies
Name	State	Phone	Fax	E-Mail
Majority
Lucille Roybal-Allard	California	(202) 225-1766	202-226-0350	Email
Barbara Lee	California	(202) 225-2661	202-225-9817	Email
Michael Honda	California	(202) 225-2631	202-225-2699	Email
Rosa L. DeLauro	Connecticut	(202) 225-3661	202-225-4890	Email
Jesse L. Jackson, Jr.	Illinois	(202) 225-0773	202-225-0899	Email
Betty McCollum	Minnesota	(202) 225-6631	202-225-1968	Email
Nita M. Lowey	New York	(202) 225-6506	202-225-0546	Email
Tim Ryan	Ohio	(202) 225-5261	202-225-3719	Email
Patrick J. Kennedy	Rhode Island	(202) 225-4911	202-225-3290	Email
James P. Moran	Virginia	(202) 225-4376	202-225-0017	Email
Dave Obey	Wisconsin	(202) 225-3365	715-842-4488	Email
Minority
Jo Bonner	Alabama	(202) 225-4931	202-225-0562	Email
Jerry Lewis Ex Officio	California	(202) 225-5861	202-225-6498	Email
Todd Tiahrt	Kansas	(202) 225.6216	202-225-3489	Email
Rodney Alexander	Louisiana	(202) 225-8490	202-225-5639	Email
Dennis R. Rehberg	Montana	(202) 225-3211	202-225-5687	Email
Tom Cole	Oklahoma	(202) 225.6165	202-225-3512	Email

Grant Money for Dr. Sholler - vote!

noreply@blogger.com (Melis) — Tue, 01 Dec 2009 05:10:00 +0000

Take a second to open this link and vote for Project A - Dr. Sholler. Then share the info on your facebook page, personal blog, via email, etc...

LilliesFriends

You decide means just that, YOU DECIDE. You, Lillie’s Friends, will decide which research project Lillie’s Friends Foundation will fund.

Thank you!

Shop For A Cause

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 25 Nov 2009 14:42:00 +0000

Somehow, the holidays have turned into a season of stress, traffic jams, and shopping lists.

And when it's all over, many of us are left with presents to return, looming debt that will take months to pay off, and this empty feeling of missed purpose. Is this what we really want?

We like gifts. Our kids and spouses really like gifts. But consider this: America spends an average of $450 billion a year every holiday season. What if some of that money that we spend on gifts we don't really want and don't really need, what if that money also went straight to cutting-edge research and clinical trials for kids battling cancer (like neuroblastoma) for which they have no current hope for a cure?

You can find great gifts and support pediatric cancer research and clinical trials that take place right here in San Diego but also around the country, when you visit and place a bid for an item at MaxsGarageSale.com. It's an eBay Giving Works program that we are a part of, and the concept is simple. Bid on an item, and 100% of the winning bid goes to Max's Ring of Fire, Inc., and 100% of the income we receive from donations goes to fund research and clinical trials. Not a single penny that Max's Ring of Fire collects is spent on marketing, web hosting, salaries, travel, meetings, cost of fundraisers, etc. eBay allows for anywhere from 10-100% of the final winning bid to go to the charity but all the items at Max's Garage Sale were donated to Max's Ring of Fire, and so we can control the percentage, and that percentage is 100%.

Here's just an example of what's up for auction right now.

Lunch for 4 at Pamplemousse Grille in Del Mar
Famous Cedros Gardens Gift Certificate in Solana Beach
San Diego Air and Space Museum - Family 4 Pack
New Childrens Museum 4 Pack tickets
Dinner Wild Note Cafe or Pacific Coast Grill and Concert at world famous BellyUp Tavern
Barona Resort and Casino hotel/golf package

Of course, we'll be adding more items too. The auction is going to run through the end of year, give or take a few days. Then, if this proves to be a successful way to raise money, we'll maybe do a special Valentine's Day auction.

One more thing.. if you have something you'd like to sell on eBay, you can simply list it yourself and designate Max's Ring of Fire as the beneficiary.

Happy Thanksgiving everyone!

Wrap-Up from Volunteer Meeting

amikulak@yahoo.com (Andy (Max's dad)) — Mon, 16 Nov 2009 14:51:00 +0000

Max’s Ring of Fire had a great Sunday afternoon meeting with some of the volunteers who are going to help us achieve our goals in 2010. Our mission is to help find a cure for neuroblastoma through awareness and funding for cutting-edge research, and by empowering patients, families and doctors in their fight against this common yet overlooked cancer. Just as there is no donation too small, the same goes for volunteering. We need help on all levels to reach our goals. Anything you bring to the table is more than we have without you!

If you would like to get involved, please send an email to info @maxsringoffire.org and we’ll reply with an invite to our Max’s Ring of Fire Group on Google (check your spam folders!). There, you will find all the volunteer sign-up sheets and documents that were distributed during yesterday’s meeting, and can communicate securely and easily to the group in one place.

Please contact us with any questions or comments and please feel comfortable being open and candid with us. We appreciate and respect your input.

Again, thank you for your time today and we look forward to a great 2010.

Max's Ring of Fire volunteer party Nov. 15

amikulak@yahoo.com (Andy (Max's dad)) — Wed, 04 Nov 2009 13:41:00 +0000

Please join us at our home on Sunday, Nov 15 from 1:00-3:00pm and get involved with Max’s Ring of Fire. We’ll have background information o you know what we’re doing, including an update on neuroblastoma research and an exciting new clinical trials consortium that includes our own Rady Children’s Hospital. We'll also be including "how can I help?" pack with tips, ideas and specific needs and roles that need volunteers to fill them. Kids will be taken care of so don’t hesitate to bring them along too. Let us know if you’re coming so we can arrange for the right amount of food, drink and childcare.

We do hope that all the friends who have been MROF volunteers in the past, and those of you who might want to become a MROF volunteer will be able to come. We look forward to seeing and meeting you, and hoping to widen the ring-of-fire that Max ignited!

RSVP here, on Facebook, or send Melissa an email.

Max's Kid Friendly Blog

amikulak@yahoo.com (Andy (Max's dad)) — Sat, 31 Oct 2009 12:49:00 +0000

When Max relapsed we felt it important to help his fellow classmates keep up with what was going on, and attempt to tell Max's story from a 5/6 year-old's perspective. We called this blog "Max's Kid-Friendly Blog" and it didn't include any of the occasional complicated, dark posts that were meant for older audiences on this blog. About October 2007 we stopped updating Max's Kid-Friendly Blog; it just became complicated to keep going. At some point before or right after Max died, I rejiggered the entire blog to move it from an active treatment mode to a mourning and remembrance mode. At the time, I didn't even know if we would continue posting or just let the blog remain as it was. In my rejiggering, I removed the link to Max's Kid Friendly Blog, and have recently revisited the site and thought I'd simply share it here in case you never saw it in the first place - there are many great adventures from our glorious summer of 2007 described in much greater detail than on this blog.

http://maxmikulak.blogspot.com

Tonight is Halloween. Thus begins the "sucky season" which ends January 1. This year, Hannah is a belly dancer/girl-genie (Lord, help me, I have a tween girl), while Nicky is going to be a pirate. Max (Bruce the shark) will join us tonight of course.

October 31, 2003. Hannah the butterfly and Max the alligator. This was our first Halloween in our current house.

October 26, 2004

amikulak@yahoo.com (Andy (Max's dad)) — Tue, 27 Oct 2009 15:35:00 +0000

Yesterday, 5 years ago, we began the journey that changed our lives forever. Max checked in to Children's Hospital with what was eventually diagnosed as Stage IV, high-risk neuroblastoma.

for real

amikulak@yahoo.com (Andy (Max's dad)) — Tue, 20 Oct 2009 03:56:00 +0000

Sorry for the lack of substantive updates lately. Neither of us really have a good excuse like, "we were building homes in Tijuana," or, "lobbying Congress for more neuroblastoma funding." Truth is, we've been doing nothing. Not really. We've been busy, really busy. Not busy really doing anything worthy of a blog post however, at least not on a regular basis. I think we're hitting a new phase of mourning.

I haven't read any mourning books so this won't sound very credible but I think we've entered the "holy sh*t this is for real and Max really is gone and we can feel it deep within our bones every minute of every day" period of mourning. On the surface, I think some - maybe most of the people we see on a regular basis - believe we're getting along just fine. And we are, on the surface. We have fun, we go out, we laugh.

We talk about Max. Or we don't.

We're over the "structured" part of mourning where we try to schedule/control how and where we integrate a Max moment into our family's experience.

It just happens. Or it doesn't.

We're not forgetting him, we're likely just becoming used to him being dead and not with us. Don't mistake this for being comfortable with him not being here.

I'm supremely comfortable not fighting cancer every day. It's nice not to have the proverbial gun to your child's head every day with all the stress and anxiety that brings on. But the topical relief of not having the stress of the fight, versus the deep, deep pain of not having him around, and knowing that we'll never see him again on this earth ever again, is much worse.

Three weekends ago I took Nicky to the Miramar Air Show. I hope I'm not pinning all my expectations and lost dreams from my relationship with Max on Nic - trying to have Nic be my stand-in for Max. If you start to see any pictures in this blog of Nicky standing at the top of a skateboard ramp while Tony Hawk does a hand plant in front of him, please email me and tell me to stop. So, back to the air show.

Walking around the tarmac I came across a familiar looking bi-plane. Anyone remember this?

It's the airplane on the left from Max's celebration of life. It was the last airplane owned by Steve McQueen (a Stearman). I felt it was a good sign from Max to come across this since I usually wander around the more exotic airplanes at a show like this.

Nicky has also taken to demonstrating his disapproval in a most obvious manner. I think he didn't like that I wanted to take his picture by the landing gear of this C-5 Galaxy.

Here's another photo with the same pose so that you know I'm not making this up...

Rather than watch the planes Nicky liked to walk through the static displays and most of all, he liked the "army guy" tanks and guns. This is a howitzer of some sort that impressed Nic.

This past Saturday we went and got our pumpkins to the east of us at Bates Nut Farm, or as we have started calling it (thanks to Leo), "Nates Butt Farm" which the kids enjoy for obvious reasons. Yes, we are high-brow in our household. Being that it was a sea of orange at the farm, it was hard not to think about Max (or Macs).

We brought "Max" along with us (in the form of his trusty Bruce shark). I'm sure people think I'm weird carrying around a stuffed animal in the middle of the day, but then I've also shaved my head and people are giving me a wide berth these days anyway so...

I've been thinking a lot lately about our trip to Disneyland last August when Max was really sick and not really in the proper condition for an all-out attack on the Magic Kingdom. The picture below was from our second night I believe when Melis took Hannah and Nicky to see the Fantasmic show that our friends Lisa and Lance got us in to see (from the producer's stand no-less where you are right up in the action)... Max had no desire to go and so he and I were going to hang out in the hotel room, but I persuaded him to visit the Lego store in Downtown Disney for a little side trip. He ended up walking the whole way to the store and back. Coming back he was shuffling away with so much energy, so happy to have procured yet another Star Wars Lego set.

Max kept on saying, in his magical sing-songy voice, "this is the happiest day of my life," and I was almost crying as I knew there weren't likely many more moments like this to have with him.

Miss you...