9/28/2008

Speed



On Saturday, Melissa and I heeded Hannah and Nic's request to spend the night at Nana and Tata's house (Melis' parents). So we dropped them off around 1pm and headed out for a little Max-time. What 'Max-time' means is doing something that Max would have likely enjoyed doing himself, or something inspired by Max's outlook on life (eg, helping others). Saturday's Max-time was about speed. And power. Two themes that resonated with Max throughout his seven years with us, manifesting most recently in his obsession with WWII aircraft.

Coronado Speed Festival is held during Fleet Week at NAS North Island and it consists of vintage automobile races, static plane displays and Navy ship tours. It's pretty cool and I kick myself for not dragging Max to this last year, but then he wasn't quite into the aircraft enough at that time to probably close the deal with him then. So, he joined Melis and me in spirit yesterday. I think Max had a good time. There was a MIG-21 on display, his favorite enemy plane of the jet age. And there was racing by good-old-fashioned cars that you could recognize as Fords, Chevy, Ferrari, Jaguar, etc. We arrived later in the day, and the 6th race is comprised of my favorite cars. I'm sure Max agrees, the Shelby Mustangs are the funnest to watch as they make a lot of noise.

9/23/2008

Three

Nicky turned three on September 13. His birthday party was held however, on August 31, the day Max died. That afternoon, Max joined the rest of the family for a few minutes outside. Otherwise, the rest of the day he and I were on the couch together. I'm still stunned that he died that evening. I guess I always will be.

File under 'retrospective': I thought it would be interesting to look at some pictures and remember what Max was doing when he was three years old.

He was driving cars at Legoland...


riding horsey rides...


motorcycles...


and bumper boats... all by himself.


But he went on the crazy, spinny rides with crazy, spinny, big-sister Hannah.


He also like water slides...


... and sharks.

Casa Blanca Salon and Day Spa in Rancho Santa Fe will be hosting a fundraising event to benefit the Magic Water Foundation

So many thanks to those that continue to raise money and help keep alive the cause that we fought so hard for on behalf of Max over the past two years.

http://www.delmartimes.net/news/248810-event-benefits-childhood-cancer-foundation

9/19/2008

2004



I'm enjoying immensely the process of looking not into the immediate past but into the (relatively) more distant past. Though I cling to the most recent memories and images of Max, looking back through the years I guess provides a little bit of a buffer to the more recent images which are more painful to view.







At Cardiff State Beach, October 2004, just prior to Max's neuroblastoma being diagnosed.

Disneyland August 2008


Officially, our last photo together as a family. Taken at early entry to Disneyland on Thursday, August 7, 2008. If only we had known this picture would be the last one together... but then I guess that's the point of the phrase, "live like there's no tomorrow, dream as if you'll live forever."

9/17/2008

"Blitzkrieg Bop"



Hey ho, let's go
Hey ho, let's go
They're forming in a straight line
They're going through a tight wind
The kids are losing their minds
The Blitzkrieg Bop
They're piling in the back seat
They're generating steam heat
Pulsating to the back beat
The Blitzkrieg Bop.
Hey ho, let's go
Shoot'em in the back now
What they want, I don't know
They're all reved up and ready to go

Max's Krazy Kar Kapers

Sorry, nothing much to say today. Missing Max incredibly.

The previous Mig-23 Tigershark drawing of Max made a couple of, well, let's just say "immature" readers of this blog giggle a bit at the joyous smiles of the two pilots as they flew faster than the speed of sound while blasting their enemies to smithereens (sounds like a parent's view of good chemo). So in the spirit of showing a bit more of the twisted mind of Max, a selection taken from Max's last birthday card to Melissa, just this past May. The other two illustrations were of Max and mommy buying a video game for Max, together. And the two of them eating ice cream cones and watching TV together.

9/15/2008

Max is an alligator


Email sent today from Max's teacher, Lisa:

"The kids are really missing Max. They don't like his empty chair, too much of a reminder I think, so they've taken to putting Larry the stuffed alligator in it. But they call it Max and make sure he has the right folder out, etc when we're working. Interesting how kids grieve... They've also been rereading some of the grief books we've read. Your sweet boy is sorely missed!"

I'm sure Max is very happy with his classmate's selection of his proxy.

Halloween 2006.... sigh!



Loss for Words

A note from Melis...

A very nice mom friend of mine came up to me this weekend and expressed her sorrow for our family and apologized for not talking to me sooner - but she simply didn't know what to say. I know this is troubling everyone - even me. I don't know what to say either.

Please know that a seemingly simple "I'm sorry" and a hug is huge. Really. I'll see you this week.

9/11/2008

Tribute to Max in Carmel Valley News

Family and friends gather to celebrate the life of beloved 7-year-old Max Mikulak
By Catherine Kolonko

Young Max loved power and strength like any little boy. It gave him inspiration.

And so when a large contingent of his family and friends gathered at a Del Mar park Sunday to celebrate his short but full life, two biplanes plowed through the sky in a show of might that would make Max smile. Their engines roared and the crowd cheered and applauded for 7-year-old Max Mikulak who died recently after a 4-year battle with cancer.

“He was just a really sweet, nice little boy,” said Max’s mother Melissa Mikulak, who wore his Indiana Jones ball cap that he received in June for his birthday.

“It was a beautiful day,” the boy’s father, Andy Mikulak, said about the gathering in Max’s name. “Everything we wanted to happen obviously happened. It was the right way to honor him.”

In 2004 Max was diagnosed with high-risk Stage 4 neuroblastoma, an aggressive pediatric cancer that is difficult to cure. For about a year after traditional treatment the disease disappeared, but it returned in 2006.

The Mikulaks of Carmel Valley chronicled Max’s struggles and triumphs with his disease on an Internet blog read widely by family and friends and even strangers in other states. A video clip captured happier times of Max cheerfully singing “Ring of Fire” into a karaoke microphone. Then, sadly the couple posted this entry less than a week before he died on Aug. 31.

“Max is dying. He has been dying for some time, of course. Since 2004, he has been battling a cancer that had a terrible cure rate to start with, then he relapsed in 2006, then progressed this summer. Now, the neuroblastoma seems to be spreading rapidly to soft-tissue areas of his abdomen (liver, kidneys), despite continual treatment.”

Another post was a quote from Max’s sister Hannah.

“If I had a wish, I would wish that Max's cancer would go away and stay away forever.”

The wish, no doubt, of everyone who came to Seagrove Park and shared laughter and some tears as they remembered Max that day. Most importantly, Max’s parents wanted a celebration of Max’s life and his good and loving nature, maintained until the end despite his painful struggles.

Two large photographs of a beaming Max flanked a microphone where several people spoke about the boy and how he touched their lives. Lisa Sturt, Max’s teacher at Solana Highlands Elementary, told the crowd that everyone who met him immediately fell in love with him.“

And how could one not? He was light and goodness and joy… an angel in our midst,” she said. His enthusiasm and smile were infectious, she said.

“If asked to do something, he’d respond, “Aye, aye Captain!”

All around the gathering there were symbols of Max and the things he loved. Many who attended wore orange, his favorite color. Others wore references to his favorite movies, “Star Wars and Indiana Jones.” A table held model airplanes, a toy train, treasure chest and dinosaur and photographs of a happy Max, including one with famous skater Tony Hawk in motion.

In another display of might, a trained hawk flew over onlookers and then perched in a nearby tree. For a finale, the meat-eating bird flew to its trainer and snatched a morsel from his hand. Earlier, Max’s fellow cub scouts performed a mock aerial salute. Each hoisted a toy jet above his head and marched as if in a missing man formation traditionally flown in memory of a fallen pilot.

Wanting to save his son and other children from cancer’s awful clutch, Andy Mikulak cofounded the MagicWater Project with Neil Hutchinson who also has a son with the same disease. It is a foundation dedicated to working with cancer researchers and oncologist to accelerate discoveries of potentially life-saving new drugs for children with relapsed neuroblastoma and medulloblastoma. The project funds clinical trials and other research on innovative, low toxicity treatments.

The day after the celebration for Max, a few hundred people participated in a walk in Balboa Park to raise money for the MagicWater Project. Just over $18,000 was collected from the fundraiser, which was sponsored by RealAge.com, Andy Mikulak’s employer.

More money is still coming in from the fundraiser and it will go toward the purchase of new imaging equipment at Rady Children’s Hospital that could provide quicker scans and results in the detection of cancer.

Andy Mikulak said he will turn his attention to raising the additional money needed to buy the scanner for Children’s Hospital, he said. While the money raised from the walk is symbolically significant it is only about 10 percent of the roughly $1.5 million estimated cost.

The Mikulaks plan to continue their efforts in the battle against childhood cancer and say they want their son to be remembered most of all for his loveable character.

Although Max could behave like a typical boy there was never any meanness to him, recalled his father. Throughout his struggles Max was always happiest when everyone around him was happy.

For Melissa, Max had a purpose that she wants others to remember: To live life to the fullest “because time is precious” she said. Then she repeated the words of encouragement so familiarly linked to their good-natured son, “We really did encourage him to live life to the max,” she said.

-- please let the Carmel Valley News know (email) if you enjoyed this tribute to Max, the reporter Catherine did a very nice, sensitive job covering both events and we thank them tremendously for such good, caring work --

9/07/2008

1st Post about the Celebration

I don't think Andy & I can make just one post dedicated to Max's Celebration of Life. It was so perfectly Max. We don't feel there is anything we would've changed had we the opportunity.
Something we didn't realize until they were actually being read, was how perfect the books we chose were. See what you think. Here are the stories for those of you not familiar with these childrens' books.
Where the Wild Things Are
by Maurice Sendak

The night Max wore his wolf suit and made mischief of one kind and another

his mother called him "WILD THING!" and Max said "I'LL EAT YOU UP!" so he was sent to bed with eating anything.

That very night in Max's room a forest grew and grew and grew until his ceiling hung with vines and walls became the world all around and an ocean tumbled by with a private boat for Max and he sailed off through night and day


and in and out of weeks and almost over a year to where the wild things are. And when he came to the place where the wild things are they roared their terrible roars and gnashed their terrible teeth and rolled there terrible eyes and showed their terrible claws till Max said "BE STILL!" and tamed them with the magic trick of staring into all their yellow eyes without blinking once and they were frightened and called him the most wild thing of all and made him king of all wild things.
"And now, " cried Max, "let the wild rumpus start!"
"Now stop!" Max said and sent the wild things off to bed without their supper. And Max the king of all wild things was lonely and wanted to be where someone loved him best of all. Then all around from far away across the world he smelled good things to eat so he gave up being king of where the wild things are. But the wild things cried, "Oh please don't go - we'll eat you up we love you so!" And Max said, "No!" The wild things roared their terrible roars and gnashed their terrible teeth and rolled there terrible eyes and showed their terrible claws but Max stepped into his private boat and waved good-bye and sailed back over a year and in and out of weeks and through a day and into the night of his very own room where he found his supper waiting for him

and it was still hot.



MAX by Bob Graham, is a much longer story. Hannah read it - perfectly by the way! Its the story of a boy born to superhero parents who can't seem to fly, until one day he's faced with a problem that requires him to fly to avoid certain disaster. The question at the end of the story is "Now that Max can fly will be become a superhero like his parents?" His mother says, "Not important. Let's call him a small hero, a small hero doing quiet deeds. The world needs more of these."

I think our Max was indeed a small hero. Look what he's done for you and me.

9/05/2008

Tra La La

Silly home video made before cancer!

video

Parking for the Celebration

For those of you not acquainted with the beautiful village of Del Mar, parking is limited and parking fines are strictly enforced.

Your options (best first):
  1. Del Mar Plaza - corner of Camino Del Mar and 15th Street. Ample parking underground. Entrance is 50 yards north of 15th Street on Camino Del Mar.
  2. Beach pay lot on Ocean Avenue. $4/hr - CASH ONLY
  3. Metered parking is available on many of the streets. You will need Quarters ONLY to park at them.
  4. Lifeguard Station parking lot next to the Poseidon Restaurant on Ocean Ave. Metered parking only. Quarters. ONLY.
  5. Timed spots on the street are usually 90-min only.

There is a drop off area at the base of 15th Street where it meets Ocean Avenue (Sea Grove Park) for people who cannot walk far. You can drop off there and then park.

Please give yourself ample time to park and walk to the Celebration. We will start promptly at 9:00am. See you there!

9/04/2008

3 C's

I think many of the readers of this blog know Max exclusively through what is posted here. And many readers joined us recently, when much of Max's life consisted of too many sad/unhappy times and not enough good ones. Below, are three videos which - to me - epitomize strong characteristics of Max at various points in the last seven years. He really was a normal kid, put into an abnormal circumstance that unfortunately changed him to some extent, though his core remained unchanged. He was a cool, caring and crazy kid.

Cool
In this video, Max merges the who-gives-a-d*mn-what-I-sound-like style of Henry Rollins with the who-gives-a-d*mn-what-I-look-like geeky cool of Beck into his own rendition of 'Ring of Fire' (his signature song).

video

Caring
Max had to try three times to make this happen. He was so innocent and gentle which I think is what made him so attractive to the girls in his classes.

video

Crazy
One of the characteristics that I missed most in the last few years. Max was born very physically aggressive and unafraid. When he was just walking, I would crawl after him, chasing him into a corner - he'd come charging at me in an attempt to break through. He had many scars on his face and head from these early years of acion. Here, at two years old, finding out more about gravity and how fun it was.

video

9/02/2008

Guestbook for the Celebration

As a special keepsake of this day for our family we are going to - with your help and creativity - create a scrapbook instead of a guestbook.You can create your page ahead of time and bring it to the celebration, or we will have everything you need to create a page at the ceremony. You can bring a photo, poem, message, drawing, Max story, artwork, etc... but everything must be flat, not dimensional. We will have some of your favorite photos of Max there, if you want to use/incorporate one onto your page. Remember to write your name on the page!

Encourage your kids and the kid-in-you to create something Max would love.

Important technical info: Our finished scrapbook will be a 12 x 12 format. Your page should be 5-1/2 x 8-1/2 inches horizontal or vertical (which is an 8 1/2 x 11 cut in half ) - or smaller if you prefer. All the pages will be affixed to 12x12 pages later.

We know this will be something we will treasure forever.

Max's Celebration of Life


Max at Del Mar, October 2005

We will be hosting a Celebration of Max's Life from 9-10am on Saturday, September 6 at Seagrove Park in Del Mar (Google map). This will be a child-focused, child-friendly celebration. Seagrove Park is where we spend many weekend mornings together as a family - the rocks there are and were a special play site for Hannah and Max, and the park also afforded a good view of the trains passing on the tracks only feet away on the lower bluff.

Anyone and everyone is welcome - dress is casual (shorts and flip-flops welcome) befitting a weekend morning near the coast. If you feel the urge, wear one or any of the following visual themes that personify Max: the color orange, flames (ie, hot rods), camoflauge (ie, WWII), skate, or Star Wars, fish, dinosaurs or sharks (a favorite).

Come a little bit early for warm bagels and we'll get started at 9am sharp. There will be take-home build-a-Lego table stations for the kids to keep themselves occupied with during the Celebration.

Above, flashback to July 2006. Cancer-free (not really, as we found out later) and care-free. I just want people to remember that Max was a normal, kooky boy too.

p.s. Instructions for interacting with parents with recently deceased young children: should you see or overhear us laughing, here's why (thanks for the wonderful story Margo).
p.p.s. Says-it-all quote of the day: "Dear Max. I loved it when you were living. I will miss you." written by future US Open/Wimbledon champion and classmate Luke. THANK YOU LUKE!