
9/28/2008
Speed

9/23/2008
Three
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
http://www.delmartimes.net/news/248810-event-benefits-childhood-cancer-foundation
9/19/2008
2004


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"

Max's Krazy Kar Kapers
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

I'm sure Max is very happy with his classmate's selection of his proxy.
Halloween 2006.... sigh!

Loss for Words
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
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
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 Areby 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

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
Parking for the Celebration
Your options (best first):
- 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.
- Beach pay lot on Ocean Avenue. $4/hr - CASH ONLY
- Metered parking is available on many of the streets. You will need Quarters ONLY to park at them.
- Lifeguard Station parking lot next to the Poseidon Restaurant on Ocean Ave. Metered parking only. Quarters. ONLY.
- 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).
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.
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.
9/02/2008
Guestbook for the Celebration
Max's Celebration of Life

Max at Del Mar, October 2005
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).
8/31/2008
Max passed away at 8:45pm Sunday, August 31, 2008
Update - 9/1 6:55pm
For anyone wanting to contact us for any reason, Melissa's sister, Randee, is going to serve as our go-between. Her contact info is:
Randee
randee@cox.net
619-890-1743
We would like to make a request at this time that instead of flowers or gifts in memory of Max, please make a donation to the MagicWater Project. More than ever this is where our our efforts will be... to help prevent other families from having to suffer the loss of a beloved child like our Max. Thank you.
Update - 9/1 2:00pm
Andy & I are planning Max's Celebration service. Tentatively, we are shooting for Saturday late morning, September 6, 2008 in Del Mar at Sea Grove Park.
Update - 9/1 5:55am.
Missing Max terribly already. Two moments of magic Sunday morning captured on video. This was the real Max.
8/30/2008
Pics only - week of 8/24
Max playing one of his two favorite games, despite having a Wii and PS2: Snowy Bear.
Getting set-up CT scans on Tuesday at UCSD/Moores Cancer Center in preparation to start palliative radiation to Max's liver the following day. Max really loves the staff there and it shows that they return the sentiment. He is so comfortable and the experience very soothing and mellow (and usually quite quick!).
After CT scan, ice cream at Cold Stone! Max's favorite these days is chocolate with gummy bears mixed in. Unfortunately, today at this location they were out of gummy bears. Max didn't finish his ice cream, unsurprisingly...
Friday's radiation appointment. Knowing how our middle-aged bellies become surprisingly flat when lying on our backs, you can see how distended Max's abdomen has become from the liver growth caused by cancer. As of Friday, Max has had 3 days of radiation and we hope that by Sunday he will start to get some relief and the liver will respond to the radiation and shrink as quickly as it grew.
Another shot of Max getting set up for radiation on Friday. This shot better illustrates Max's belly distension.
Waiting outside in the control room area while the radiation is administered.
8/29/2008
Pancakes for Dinner - pics from Monday





8/25: 1379
We had the talk with Hannah & Max on Tuesday. It was short. I wasn't sure by their reaction - or lack thereof - if we had said the right things. I'm still not sure Max was totally tuned in. All the medications he's on... there's no telling. I'm sure he was listening, but I'm not sure he fully understood. Or maybe he just didn't want to understand. Either way, we at least made it over the first hurdle and opened the door to a ever constant discussion. Hannah and I had another heart to heart Wednesday night. We discussed the difference between being apart and being absent. Max will never be absent from our lives. Hannah is such a girl and so emotional - and yet so aware of her own needs. When we finished talking I made sure she was okay for the night and told her we can talk about this any 'ol time, she said Okay; just as long as it ends with something different. So we ended by talking about a magic drinking fountain.
8/26/2008
Inflection point
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.
So, we are making plans for when Max leaves us and becomes pain free forever. Melissa and I knew that this time might come, but harbored hope that it never would, that we would be "the lucky ones." We still have a smidgen of hope, perhaps that's our downfall and will cause us much pain in the near future as we find it hard to let go of him, but without hope, what is there?
Let me give a quick update and then that will be it for this post.
- Pain: Max is on a morphine PCA pump. Last Thursday we had a horrific night - Max in so much abdominal pain that he was going practically crazy. Due to some transition issues with our hospice provider, we were caught off-guard and Max had to spend several hours writhing and screaming in pain, without anything we could do but try to comfort him with words (note: it doesn't work - try it - cut off your finger and see if kind words help soothe the pain). I fear we've done more damage to Max's psyche with that episode than shows. Remembering this night makes me so mad... sad...
- CT: we are having a CT done today to determine the spread of Max's disease. Last Thursday we had an emergency CT to determine what was causing Max's adbominal pain. It was there that we saw the disease in his liver and kidneys. Curiously, the pathology report from Max's brochoscopy procedure two weeks ago showed no disease..
- Radiation: we are starting palliative radiation to Max's liver today. We hope this relieves some of the pressure on his abdominal area so that he is more comfortable. Right now, he only wants to wear pajama pants.
I want to close with a picture of Max. So many pictures have been posted lately showing unhappy Max. There are moments of lucidity and happiness on his face, though they are fleeting. Those moments are treasures and Melissa and I are doing our best to make sure that as we capture them for the future, we also enjoy them in realtime.
Sunday afternoon, Max woke up from a late-morning nap. He wanted a popsicle and so went outside for some Naboo/popsicle time. It was only five minutes but it was magical.

Max's face is fairly puffy from the dexamethasone and morphine, and is truly the sweetest boy ever.
8/22/2008
If I Had a Wish...
If I had a wish, I would wish that Max's cancer would go away and stay away
forever.
8/18/2008
Magic Water Fundraisers
8/17/2008
Back to the grind
Tomorrow I go back to work. It has been a peculiar two weeks - mostly because of the Max factor. We started chemo last week, as Melissa last posted. We are set to start week 2 of cycle 1 (3 week cycle). I've posted Max's new treatment roadmap under the 'Treatment Details' section header on the right rail of the blog. We are holding on the rapamycin noted on the roadmap as it turns out Max has pneumonia (we just started antibiotics tonight). Normally, this would be a huge scare for us but we are honestly quite numb about things right now. We know that this current drug combo is likely our last shot at stopping Max's neuroblastoma.
Max's catecholamines continue to trend in the wrong direction. Check out 'Latest Lab Results' for specifics. Just this last week we were dealing with (a) chemo, (b) nausea, (c) suspected lung infection that turned out to be pneumonia, (d) constipation with the threatand of irinotecan-induced diarrhea looming, (e) leg, neck and head pain.
Two of my employees at RealAge (thanks Ron and Steph!) have put together a fundraising walk for MagicWater to take place September 7. Please check it out if you have a chance, and if you are in the San Diego area and would like to participate, please email Steph Sybert for more information.
The walk is taking place in September b/c September is Childhood Cancer Month (not to be confused with a month to celebrate childhood cancer). There will be lots of fundraisers happening during this month. Many of these fundraisers do great things for kids with cancer (like the MagicWater one). Some less-so. Pat Lacey has an excellent, emotional post on this subject.
Finally, some pics from two weeks ago when Max 'n' me visitied the USS Midway for the umpteenth time (not a terrible way to spend the day, let me be clear). As anyone who has been around Max lately knows, military aircraft and warships are his latest passion. I am trying to make some special things happen for Max at the upcoming Miramar air show Oct. 3, 4, 5. Here is Max in front of some of his fav planes on the Midway.

F8 Crusader with 'Shark Mouth' paint job

Avenger torpedo bomber - this thing is huge!

Another huge plane - F14 Tomcat ("damnit Maverick!")
8/14/2008
Back from the Magic Kingdom
He did have some wonderful moments during his brief times in the park. His favorite rides are Star Tours and Soaring Over California, which we frequented and used the "Max Pass" - a pass similar to a fast-pass but you can use it on any ride at anytime. He also enjoyed a few rides early one morning in Fantasyland and of course the Autopia.
Max mostly wanted to sleep.
He was happy to be home Friday afternoon and couldn't wait to see Naboo, whom he thought must have missed us terribly. The cat was indeed very happy to see the kids.
Saturday morning he had an apopintment to go the oncology ward for platelets: he was critically low: 4 -- ouch. Monday found him in clinic to start a new chemo cycle. The same that Andy mentioned in the last post: temador and irinotecan. He also needed another platelet transfusion as he was at 3! (Just two days after getting platelets. sigh...) So Monday started a new treatment cycle that will find Max in the clinic every weekday for two weeks getting IV chemo in addition to the platelets and red blood he's going to need even more now that we've had to start him on some kind of toxic treatment.
We also took an xray of his lungs and left knee. He's been coughing and complaining constantly about the knee. The xray results had him in for an immediate CTscan: His lungs appeared to have extensive disease throughout. However, they couldn't rule out an infection, pneumonia, or bleeding and so a bronchoscopy was scheduled for Wednesday morning. A bronchoscopy is a simple outpatient procedure where the doc runs a camera down Max's windpipe to the lungs, looks around, squirts a little saline in there and sucks it back out to grow cultures. Because Max's platelets are questionable he had to spend the night Tuesday to get a fresh load of platelets prior to the morning procedure - just in case.
Andy brought Hannah & Nicky down in the morning before Max went in for the bronchoscopy. He was so happy to see them, he smiled and chatted. It was a nice scene. The bronchoscopy took all of 10 mintues and the doc reported back that she saw no evidence of disease inside. His upper right lung appeared to be squished by something on the outside - probably the nodules that have grown - and she said this could cause him to cough because he'd be unable to clear that part of his lung of gunk when he needed to. It looked irritated and bled a little when she flushed it. (We'll have an official report soon and will post any other findings as they become available.)
So not as scary as we had originally thought; but obviously far from being out of the woods.



