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.


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.


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 CafĂ©, 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.




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

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
(202) 224-5744
(202) 224-3934
(202) 224-2152
(202) 224-3254
(202) 224-5824
(202) 224-5054
New Hampshire
(202) 224-3324
(202) 224-4254
Rhode Island
(202) 224-4642
(202) 224-5922
(202) 224-2621
(202) 224-5653
House of Representatives Appropriations - Labor, Health and Human Services, and Education, and Related Agencies

Lucille Roybal-Allard
(202) 225-1766
Barbara Lee
(202) 225-2661
Michael Honda
(202) 225-2631
Rosa L. DeLauro
(202) 225-3661
Jesse L. Jackson, Jr.
(202) 225-0773
Betty McCollum
(202) 225-6631
Nita M. Lowey
New York
(202) 225-6506
Tim Ryan
(202) 225-5261
Patrick J. Kennedy
Rhode Island
(202) 225-4911
James P. Moran
(202) 225-4376
Dave Obey
(202) 225-3365

Jo Bonner
(202) 225-4931
Jerry Lewis Ex Officio
(202) 225-5861
Todd Tiahrt
(202) 225.6216
Rodney Alexander
(202) 225-8490
Dennis R. Rehberg
(202) 225-3211
Tom Cole
(202) 225.6165



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...


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

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

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

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

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.


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

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

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...