Friday, January 29, 2010

When a final resting place becomes a work of art



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.

Thursday, January 21, 2010

The Conductor

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.

Sunday, January 17, 2010

Can you help?



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

Thursday, January 14, 2010

Thoughts

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.

Monday, January 11, 2010

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/

Saturday, January 09, 2010

Internet Friends


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.

Tuesday, January 05, 2010

Thank You!

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.

Tuesday, December 29, 2009

2009 Holiday Update

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.

Wednesday, December 09, 2009

Congress=COWARDS

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
DANIEL K. INOUYE
Hawaii
(202) 224-3934
202-224-6747
RICHARD J. DURBIN
Illinois
(202) 224-2152
202-228-0400
TOM HARKIN
Iowa
(202) 224-3254
202-224-9369
MARY L. LANDRIEU
Louisiana
(202) 224-5824
202-224-9735
THAD COCHRAN
Mississippi
(202) 224-5054
202-224-9450
JUDD GREGG
New Hampshire
(202) 224-3324
202-224-4952
ARLEN SPECTER
Pennsylvania
(202) 224-4254
202-228-1229
JACK REED
Rhode Island
(202) 224-4642
202-224-4680
KAY BAILEY HUTCHISON
Texas
(202) 224-5922
202-224-0776
PATTY MURRAY
Washington
(202) 224-2621
202-224-0238
HERB KOHL
Wisconsin
(202) 224-5653
202-224-9787
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
Barbara Lee
California
(202) 225-2661
202-225-9817
Michael Honda
California
(202) 225-2631
202-225-2699
Rosa L. DeLauro
Connecticut
(202) 225-3661
202-225-4890
Jesse L. Jackson, Jr.
Illinois
(202) 225-0773
202-225-0899
Betty McCollum
Minnesota
(202) 225-6631
202-225-1968
Nita M. Lowey
New York
(202) 225-6506
202-225-0546
Tim Ryan
Ohio
(202) 225-5261
202-225-3719
Patrick J. Kennedy
Rhode Island
(202) 225-4911
202-225-3290
James P. Moran
Virginia
(202) 225-4376
202-225-0017
Dave Obey
Wisconsin
(202) 225-3365
715-842-4488
Minority




Jo Bonner
Alabama
(202) 225-4931
202-225-0562
Jerry Lewis Ex Officio
California
(202) 225-5861
202-225-6498
Todd Tiahrt
Kansas
(202) 225.6216
202-225-3489
Rodney Alexander
Louisiana
(202) 225-8490
202-225-5639
Dennis R. Rehberg
Montana
(202) 225-3211
202-225-5687
Tom Cole
Oklahoma
(202) 225.6165
202-225-3512

 

Monday, November 30, 2009

Grant Money for Dr. Sholler - vote!

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!

Wednesday, November 25, 2009

Shop For A Cause



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!

Monday, November 16, 2009

Wrap-Up from Volunteer Meeting



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.

Wednesday, November 04, 2009

Max's Ring of Fire volunteer party Nov. 15

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.

Saturday, October 31, 2009

Max's Kid Friendly Blog


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.

Tuesday, October 27, 2009

October 26, 2004

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.

Monday, October 19, 2009

for real

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...

Friday, October 09, 2009

...and thank you, Shiny

Two in one day.

While picking up Hannah from school today, one of her friends came to me with two kid-tattered envelopes filled with $22.55.

Cheyenne, or Shiny as everyone calls her, held two lemonade stands this summer to raise money for Max's Ring of Fire. Her little brother, Tristan (aka T-Dog), became friends with Max when the boys were three and she and Hannah were in Kindergarten together. We had lots of playdates with those two kids, and Hannah went home regularly with Shiny after school when Max was in the hospital. A very kind family raising very kind and compassionate children.

Thank you, Shiny. You are a bright light in this sometimes dark world. Keep shining.

Thank you, Jack

During the summer in our neighborhood we have free evening concerts every Sunday night. Hundreds of families come with their picnic dinners, chairs, frisbees and soccer balls. The music is loud and fun, and a good time is had by all.

This summer, one of Max's friends decided to pack his wagon full of lemonade, water and goodies and sell them blanket-to-blanket at two of the concerts. We received this note from him:

This $15 is for Max's Ring of Fire from my fundraisers. Thank you, Jack
Max thought Jack was the coolest kid in school. Jack was a little bigger than the other kids and super-sports guy. He could play everything - and was good at everything, too. Max I think, looked at Jack with perhaps a little envy at his abilities, but also lived through him while watching him play.

This picture is from Max's 6th birthday party. Max's face looks like this because he liked Jack that much.
Our thanks to you Jack for bringing a smile to Max's face and to ours.

Wednesday, September 23, 2009

hole

Last night I had a hard time falling asleep. The last picture to pop up on the computer as I headed upstairs was of Max with his curly blond hair, smiling with a cute hat on his head.

As I lay in bed the hole in my heart seemed so large and I wondered if it would ever shrink. I thought back to when I was pregnant with Hannah, our 1st child. She came into our lives and my heart swelled so much that I thought it might explode. It was so full and ever expanding with everything little thing she did. When we became pregnant with Max, I worried like crazy that I would not be able to love another child as much as I did Hannah. How could there ever be enough room in my heart for another? Max came, and my heart swelled again. It simply grows and grows. There's no making room for another in your heart. Your heart grows. By the time we had Nicky I understood and didn't worry at all.

Then Max had to go. And my heart didn't shrink. There's a hole in it. It's an ache, an empty place in my being.

Sunday, September 13, 2009

So that Max could have them in heaven

Nicky turned four today. Yesterday evening - Saturday - he had a party at JW Tumbles with some of his new buddies from preschool. Thank you everyone who came out to the party!

JW Tumbles is one of those local neighborhood kid gyms like a Gymboree, and it is where Max had his fifth birthday party, right before he started Kindergarten. It was in "long hair Max" days and he had a blast.



And Nicky wasn't even one yet...



We hadn't been back since, so it was another one of those "memory moments" when a flood of good/sad emotions hit at the same time.

This isn't so much a story about what happened during the party but more about what happened after...

After most of the guest had left JW Tumbles and we were loading up the car with leftover food, cake, Nic's presents, etc. Nic had his bunch of balloons that all the birthday kids get...



Nic must have got an idea...



Because he grabbed his Auntie Randee...



And told her that he needed to release the balloons...



So that Max could have them in heaven.



Happy Birthday Nicky. We love you! Max is surely smiling down on you today!

Monday, August 31, 2009

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."


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

Saturday, August 29, 2009

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.

Friday, August 28, 2009

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.

Sunday, August 23, 2009

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.

Thursday, August 20, 2009

What I Miss Most

Most of all, I miss having three behinds around.

Monday, August 17, 2009

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...

Sunday, July 26, 2009

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.

Friday, July 10, 2009

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

Tuesday, June 30, 2009

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.

Monday, June 29, 2009

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.

Sunday, June 28, 2009

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!

Sunday, June 21, 2009

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.

Wednesday, June 17, 2009

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.

Sunday, June 14, 2009

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)
**
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.

Friday, June 12, 2009

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.

Tuesday, June 09, 2009

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!)

Tuesday, June 02, 2009

$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!

Monday, June 01, 2009

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!)

Sunday, May 31, 2009

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.