12/21/2008

We made it!

Anyone who thinks it never gets cold in Southern California, the top picture below was taken during our drive to Tahoe. This is north of Los Angeles in the Tehachapi's mountain range. I-5 through this area is called, "the grapevine" as the north and southbound lanes criss-cross each other as you climb and descend from 100ft to 4500ft in 45 miles. This was our first bathroom break at a McDonald's. It was about 38 degrees and blowing 40-50 mph gusts = cold dash from the car!!


We made it almost 600 miles in 8 hours and 15 with just two potty/gas stops, from San Diego to the rental house in Soda Springs, just west of Donner Summit and about 25 minutes from Truckee, CA, and 45 minutes from Squaw Valley and the ski resorts of the greater Lake Tahoe basin.


Today is a snow fun day, with snow play, sledding, and Erin Project stuff on tap. Later today, weather permitting, we're scheduled to attend a party at the parents of a good friend's in Incline Village, NV. Max hated cold weather. He never liked the snow, though both times that he was in it he was sick as a dog and so who does like snow when they're sick? But we feel Max's presence with us this trip and like to think that Max has delivered the awesome snow scenes we will experience this week, with fresh snowfall forecast for everyday through Christmas.

12/19/2008

You have to ask for the order

We are off to Tahoe in the morning. Lots of snow has fallen in the past week, and we are going to one of the areas that gets the most snow, so we should be set for many snowball fights and snowmen building. Hannah wants to build headless snowmen as she's seen in her Calvin & Hobbes books. I think that sounds fun.

I will also take Nic to downtown Truckee and we'll watch some trains go by, much like I did with Max in 2005 when we were in Tahoe during the summer and Max's magical year of cancer-free (or so we thought) life.

I so would like to be snuggling with Max in his bed right now. Just in case 'ol St. Nick is reading this, you may bring us Max for Christmas. We haven't given away any of his important stuff, and he has all his clothes still here. Just want to make sure you knew that. Though it might sound obvious, I wanted to make sure my wishes are clear. Bring us Max back.

12/15/2008

Happy Holidays

I've tried twice already to write a holiday blog post and failed miserably. Tonight I sat down to write my nephew's wife an email reply. When I had finished I realized it was the post I've been trying to write.

Hi Bree,

Thank you for the nice note, as always.

Hannah still believes in Santa - but I think this is probably the last year. She asked me the other day, "Mom, do you believe?" I picked up a copy of "The Santa Clause" for her to watch this year. I think it'll get her through this Christmas, at least. Next year, 5th grade, I think we're doomed -- too many nay-sayers. She's asked for a video camera (our idea) and game and the Clone Wars movie, which we're going to have put on her iPod and we've purchased a cord that connects the iPod to your TV so you watch it both places. (Andy keeping us abreast of all technological advances...).

Nicky actually spoke with Santa two times (would not sit on his lap, but stood next to him!). He wants a BIG present. What ends up inside the BIG present is at Santa's discretion which caused Andy and I more problems than you'd think. After many hours searching the internet and trying to make a decision I ended up at ToysRus buying several smaller things to fit in one box. Cars movie stuff and a pretend toaster and microwave with food. He still loves that stuff and the crazy micro actual has a working turn table, light and buttons. Best $10 I've ever spent!

What are Katie and Jack getting this year? Is anyone flying out there?

We're leaving this weekend for Tahoe/Donnor. Already the snow is falling there and I know we're going to have a great time. We'll pack Max's box up and take him with us just like we did for Thanksgiving. This is definitely a tough time of year without Max here. For a new tradition this Christmas we'll be putting personal notes in Max's stocking on Christmas Eve. Our standing tradition of Santa leaving a nutcracker for each of the kids will continue. We found a nutcracker dressed as an army-guy for Max.

As I'm writing this, I looked up to see a group photo flash on the big computer of the cookie baking we did several years ago! How funny - because I was going to mention that we missed you this weekend for this years bake-off. Between Gramma, Jenee and I we baked a crap-load of cookies. I have about 10 big tupperwares full. It was amazing what we churned out in four hours. (Double oven!) The kids even had a blast dipping pretzels in chocolate and sprinkling them with goodies. Good day all around, I just wish more of us could've been together. These cookies will be the perfect gift-from-the-heart as always to many friends.

You probably are in the loop that we opted out of the name-draw this year. My heart just wasn't in it. I didn't want to go shopping. I didn't want to receive any presents. I told everyone that a present you could buy me for $50 isn't going to make a difference in my life. But spending time together would. In looking back at Max's short life with us, experiences are what makes memories and fill our hearts.


Our Christmas card this year...



11/30/2008

"Normal"

We continue to experience the full blast of pediatric cancer - that is, the extreme highs and lows that come with fighting neuroblastoma, and now that the battle is over, dealing with the aftermath of our loss.

On the outside most people would look at me and think that I'm carrying on quite well. Not knowing what "normal" is in these circumstances, I'm not sure if they're right or wrong. My moods shift quickly from extreme anger at what Max went through and our loss, and his loss, due to a too-early death, to deep sadness at the pain, terror, isolation and exclusion he must have felt at times, to bursts of productive and creative energy where I actually get things done that help me to deal emotionally with the anger and sadness (you might notice that range of emotions in this post, in fact).

We continue to be amazed at the outpouring of goodwill and good deeds which come to us through the kindness of both friends (old and new) and strangers.

Erika Jessop is a wonderful artist whom we've never met. Commissioned as a gift from Max's photographer Deb, she painted for us (below) this wonderful, caring portrait of him in her inimitable style. Thank you Deb, thank you Erika, we have not yet found a place to hang this picture but it will be in a very important location, to be sure!



Life goes on for us. In an upcoming post, I'll update on what I've been doing to continue the fight against neuroblastoma. I think Max would approve, and it keeps me from going crazy.

We spent Thanksgiving away from our house this year. We host Thanksgiving usually, but decided we needed a pass on tradition, so we joined Melissa's family at Matt and Jenee's desert house outside of Yuma. The weather was beautiful and the kids had a blast with their cousins. Little Nicky is growing into quite a little man which of course is bittersweet. He is just about now at the age when Max was diagnosed. He misses his brother a lot - we all do of course - and asks the most touchingly sad questions, such as today when he asked, "when is Max coming back?" as if he's in heaven on vacation. We try as much as possible to get the idea of permanence across but also speak freely of Max and 'signs' from him which the kids especially find comforting. We strive to find positive things to focus on everyday and are thankful we have two beautiful, healthy children, along with our families, a community, and a network of friends that support us with their love and friendship.


Nic looking very comfortable on a mini-bike.


Hannah pulling g's


Nic getting inspired to face off against Will Lacey at some NASCAR track in the future.

11/25/2008

Kitchen Table

Our kitchen table: where all the action is.

video

It's been three months already since Maxi-boy earned his wings. I don't know where I am with this reality. Some parents told me they were numb for the first year. I think that's a good definition. I haven't cried a lot - here and there, yes - but not what I would have thought. Last week a friend brought over a book for me, Tear Soup. (Thank you, Brenda. I love it.) It's a picture book, like what you'd read to your kids, but it's for adults and it's a recipe for grieving. I stood in the kitchen reading it and found tears streaming down my face. It was a relief to find something to help release my heartache over the loss of our beautiful boy. I've been thinking about Max more and more just recently. Seeing these videos and hearing his little voice and watching this actions... I just can't get enough. I guess my "missing" him has finally started. Thank goodness. It's not a bad feeling... this pain. It's necessary. It's welcome. I want to embrace it and have a good cry.

11/21/2008

Magic Kingdom



You are magical, my boy. I miss you so much. xoxo daddy.

11/15/2008

pancakes-snowy-disney

Another look at Max the Monday before he passed away (six days). Doesn't he look great helping with those pancakes? Also featured on this snippet is Max playing his favorite computer game, Snowy the Bear (game courtesy Mrs. Sturt!), and some video of Max at Disneyland this summer. Recognize those rides? The old school rides are still the best as you can see by Max's smile.

video

11/14/2008

Birthdays

This video is about 6 minutes long and looks at Max's birthdays.

Forever 7.

video

Popsicles

This is a video from August 24, one week before Max died. It is a video from the post when Andy wrote about the fact that Max was going to die. To this day we still can't believe that he would leave us so quickly, just 7 days after this video was shot.


video

11/02/2008

Hollow



We miss Max terribly, more so with every day that passes with him not around us. As the first holiday without him, and on the two month anniversary of his leaving us, October 31, 2008 was a tough day. On Halloween night, Nicky decided to chuck the fireman outfit he picked out and firmly settled on being a, "s-s-s-s-s-sooooooooooper, s-s-s-s-s-soooperhero." He has a slight studder which we believe is just temporary and is actually fading away slowly... his brain just seems to work quicker than his mouth, which is better than the other way around, we think.

Unfortunately, we didn't get a photo of Hannah this year, but she was a kittycat, and a very cute one at that. (Edit - we did!)

I had dinner on Wednesday with John London (Penelope) and Scott Kennedy (Hazen) in NYC, and yesterday, Melissa and I had lunch with the Bruskows (Eden). It was good to be able to connect with some other NB angel parents, though it seems grim to say its good to meet with other parents whose children have also died from neuroblastoma.

I had ambitions for a much longer post, but seem to have lost my muse and so will close for now. Thanks to all for your continued support and comments. It helps to know that most if not all of you are still there.

10/27/2008

The Brave Little Soul

I received this story a few days after Max passed away. It was sent by a friend at Childrens Hospital. I read it once, that week, and filed it away because I wasn't ready for it. There were too many emotions washing over me. It resurfaced in my thoughts this week as I continue to read your comments about how Max's life has changed yours. How this little boy, my son, has made an impact on so many people - many who never even met him (which then brings to mind this):

Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. - Unknown

The Brave Little Soul by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

And what better to end a post than some random pictures of our brave little soul...


Father's Day/Daddy's Birthday 2008

"Baby Jack loves my red hat."

Cousin Chase is cool.

Thanks to Casa Blanca Spa

The fundraiser for MagicWater hosted by Casa Blanca Spa was a big success. $6500 were raised in loving memory of Max at their three hour event.

I'd like to extend a heartfelt thank you to Marcina, Neil and Kendra Checkett's. You are a great family with a lot of heart and we're very happy to have your support in efforts we believe in. You are very special.

The event was really great, by the way! They had the newest, biggest, baddest SWAT team vehicle there, a fire engine, Kendra's Lemonade Stand (only $6 a glass!), a mojito bar, homemade nacho bar, spa experiences, hair treatments, silent auction for some amazing items, lots of fairy dust... it was beautifully done. Kendra invited Hannah to help her at the lemonade stand and they had a great time, fluttering around in their fairy wings, serving guests, getting their nails painted, and out bidding their parents on auction items (you do the math).

All in all, a great afternoon for a great cause.

10/26/2008

Lisa Sturt's speech from celebration


Max with Lisa, his teacher, at our home on Christmas morning 2007

By Lisa Sturt
September 6, 2008 -- 11 months and 1 day ago, I stood before an audience about this size on behalf of Max. We were thanking and celebrating the school community for their amazing generosity and support for Max and Magic Water. It was truly my proudest moment.

And now I find myself in a very similar situation, except it is my hardest moment. And that dichotomy is what I learned from Max. On one hand, you have all the pain and grief of cancer. And on the other Max’s vibrancy, joy, his smile, and zest for life. Max taught me you cannot know the fullness of love without knowing the depths of sorrow.

From the very first, it was like that. After Max and the other kids came to meet me at Mini Open House before the school year started, I cried all the way home bemoaning that he was stricken with such a horrible disease. I tried to pull myself together before I went into the house. My husband greeted me with what was to become our new greeting -- did Max come to school today? I immediately burst into tears and said, “Yes, and I already love him.” However, I said one other thing that I never shared with Andy and Melissa: that Max was going to break my heart. But as it broke, it somehow was also made fuller by Max.

I think most people had a similar reaction to Max. Everyone immediately fell in love with him. And how could one not? He was light and goodness and joy… an angel in our midst.

My favorite Angel Max story occurred during lunch in the nurse’s office. Max was there hooked up to his g-tube when a little girl limped in, crying, with two skinned knees. Max, the one with cancer undergoing chemotherapy and radiation, went over to her, put his arms around her and hugged her tears away. Of course the stickers he shared with her helped, too.

But that was Max. He was friends with everyone whether he knew their name or not. He never differentiated between children, he welcomed them all and shared his smiles and kindness.

Max’s friend, Luke, once said Max makes school “funner.” And he did. His enthusiasm and smile were infectious. And of course Max had his own special way of doing things. If asked to do something, he’d respond, “Aye, aye Captain!” And when done, he’d blurt out, “Whew!” in his little high pitched voice. Then say, “III’mmm finished!” He never read the word fish as fish; it was always fishy. The word big wouldn’t be written like other words… it was written BIG and bold. And he was always drawing, usually fishy scenes, or battles, or airplanes or Star Wars.
I will miss so many things about Max: how he never just said no or yes, but instead no, no, no or yes, yes, yes. How he would hold my hands when he was upset, how he’d steal my chair in reading groups but then make up for it by snuggling up against me. And then I’d pray for him…imagining the cancer leaving his body and coming to mine.

I will miss being wrapped like a mummy with paper towels in the nurse’s office during lunch. I will miss pushing him down the halls making fighter jet noises and pointing out enemy aircraft only to be told that we’re a race car and not a plane. And I will miss being asked, “Whad you say?” and being pushed from behind and told to be the “teacher duck.” I will miss watching Max and Hannah running up to each other on the playground and hugging tight. I will miss his strength, his resiliency, his courage. The qualities of a hero.

Many have said Max was a hero. But I think he learned that by example. Andy and Melissa, by your example. Every day, every hour, every moment, you made heroic efforts to not only save Max but perhaps, more importantly, to give him a life full of wonder and adventures. A rich life apart from cancer. You never failed, you never overprotected, you never coddled. You let Max be Max. You allowed him all the joys of childhood in the midst of your pain. Your strength, your spirit, your courage fueled Max’s own. YOU are my heroes. I am forever indebted to you for sharing your precious son with me and your lives -- allowing me to be a part of so many of Max’s lasts. And Max gave me a last, too.

On our second to last day of school, I was out at recess with him in case he needed help. I had gone and sat a little distance away while he played with friends. He came over to me, sat down, and then snuggled up.

I knew in my heart that it would probably be the last snuggle with him, and I thanked God for it then and there. Then I struggled with do I tell Max I love him? After all, he was just a six year old boy and professions of love from your teacher are not necessarily a routine part of the school day. But I decided to do it! And just as I started to speak, he got up and went back to play with his friends.

Just as it should have been. For Max at his heart was just a regular albeit special and angelic boy. He was not cancer. Cancer was not him.

And as he broke my heart, he also made it stronger and more capable of loving. And while I have one foot in the depths of sorrow, the other foot is planted on the peaks of joy for when I think of Max, I will imagine him as Val, Andy’s friend, described:
A light saber in one hand and a blue popsicle in the other.

10/18/2008

Remembering Max

A great post by fellow member of the hardest-to-get-in-to-club-that-no-one-wishes-to-join reminds me to ask for stories and pictures of Max.

By Paul's Dad

Time can be a greedy thing-sometimes it steals the details for itself. — Khaled Hosseini (The Kite Runner)

I just finished reading this novel, which I thought brilliant for many reasons, but mostly because of humanly insightful quotes like the one of above. I have thought about that passage a lot. What struck me about it was how it describes particularly well the battle that those with great loss, like bereaved parents, must fight. Time has already eroded so many of the details of our time with Paul. It is a constant fight to keep time from robbing us of these wonderful details. So, we vigilantly keep our memories alive by repeating Paul stories all the time, saying what he would say, pointing out what he would have done, what he would be doing, what he did, and on and on it goes. Lately, we have brought his name up more and more in these contexts. That tells me that we are mindful of the robber - time - trying to steal our details. So, that is why it is so important for us to see his pictures, talk about him, and to hear stories and memories that you have of Paul. Feel free to join the ranks
of the detailed memory soldiers. (-:


Please send stories and pictures, anything that to you, epitomizes Max (email or just comment here). And any pictures or videos from Max's celebration of life - especially of the fly-by! We have our memories, but would like to know yours as well. We are having some videos created of Max's life. One is going to be especially for Nic. We already watch clips of Max with Nic and Hannah, but this we envision as more a movie, if not feature-length. Our good friend Leo is creating this for us with his kids helping out. Max, it turns out, was the topic of conversation around Leo's dinner table with his kids for the better part of four years during Max's battle. We know there is no one else in the world who can tell Max's story better than Leo.

We have also found an artist that is going to create a permanent resting place for Max's ashes. Because his death caught us quite by surprise - really, we were totally unprepared and unfocused on it happening then - we rushed into a decision for an urn at the funeral home. But really, would an urn from a catalog - something that others had also purchased for their loved ones - do for Max? Not for us. So we decided that what Max came home in from the crematorium was only a temporary home, and that we would create, or have created, something that with one look, would say, no scream, Max.

Thanks to the wonders of Google, 30 minutes of online research turned up Funeria, an artists representative that specializes in "personal memorial art". We found an artist - Chris Rizzo - that connected with Max's story and are signing the commissioning paperwork today. This is a snippet from the email response to my description of what we were looking for, and who Max was.

What a touching story and such a beautiful boy. He really sounds like an amazing person... It is uncanny reading his interests and excitements, for it completely parallels mine; once as a 7 year old boy and still as 35 year old boy. I have always been fascinated with planes, space, the military, and building, building, building. I've still got heaps of legos and model planes. But seeing Max's artwork really confirms the kindred spirit. I've framed some of my young sketches of egg-headed pilots flying planes with outrageous numbers of cannons, rockets, and bombs. Everyone smiling, no specific targets. Just lost in the purity of a 7 year old mind.

Below, a sample of the type of work Chris creates. Everyday we strive to behave and make decisions that honor his life.

10/17/2008

Missing Max

Guess what? Life sucks without Max.

Sure, Hannah and Nic provide plenty of reasons to get up every morning. And they make life truly enjoyable. But we miss Max so much. Nic's been having a particularly troublesome time as of late. Bottom line, he misses his big brother and can't understand why he's gone, why he had to leave us, why he's not coming back. I admit, I find myself asking the same thing? Why Max?

Here's what Hannah and Nic have been up to lately...

Eating pancakes in the shape of fighter planes...



Visiting the beach...





Being cute...

video

Five years ago this October, we were casually concerned about the wildfires raging to the east of us. These pictures of the smoke are quite amazing.







Melis: This October we're missing a child. We're still a family of five in our minds, yet there's only four of us here everyday. We love you Max and miss you terribly.

10/04/2008

Max's Aeroplane

I went to the Miramar Air Show today with some buddies and my dad. This was a hard decision for me, as I had planned to attend with Max. This was to be the ultimate air show experience for Max. I had been working on some special angles through my buddy Brian, a Lieutenant Commander who happens to fly for the VFC-13 Saints adversary squadron at Fallon. Instead, I was walking through the show, swearing to myself every time I saw something that I knew Max would have loved to see himself.

As we walked around the tarmac looking at the static displays, we came upon the F5 Tigers that the Saints fly, one of which Brian had flown down for the air show.

I looked at Brian's plane (his call sign is "disco"... long story) and then looked at the other F5 next to his. This is what I saw.



Something on the plane caught my eye and I moved closer to the cockpit. This was a surprise Brian had cooked up for me last night.



I lost it momentarily. So cool. So Max. So perfect.

Thanks Brian. And thanks to the guys on the maintenance crew that did the actual work. The air show and my attitude improved considerably after this.

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.