The night Max went to Heaven

We never did tell the story of the night Max died. A few people have heard it. We thought some of the people who came to love Max in person and through this blog might find it helpful to read about it, just as we have found helpful to write about it. And so we share on the 2nd anniversary of his passing.

Sunday Aug 31, 2008 – Max was in bad way. You could tell by the way he looked. It occurred to us at some point, probably after speaking with Dr. Sholler at 7:30pm (his breathing had changed significantly, becoming audible and clearly labored, about 75 minutes before he died), that his kidneys had shut down the day before. He was drinking lot of fluids, but never peeing. This, in addition to his belly being distended from the size of his liver, was causing him great discomfort. Earlier in the week we had found out that the neuroblastoma had spread to his liver and it was growing so fast you could almost see it. From Monday to Friday it went from regular to pressing so hard on his organs that he had to get palliative radiation to relieve the pressure. I think it helped a little bit – it at least stopped the rapid growth through Saturday and Sunday.
As usual, Max was in an okay mood – considering the pain, discomfort, and morphine, which he controlled with a bolus button. He didn’t necessarily want to talk to anyone, but he let us sit and watch his programs with him, hold his hand, be at his beck and call. It was hot and humid (for us anyway) that late August. Max asked for his favorite – frozen lemonade which he ate voraciously. He smiled that pure, sweet, sweet smile of his. We, especially Andy, were there for whatever he needed. I don’t think Andy left his side for anything. We had made a bed on the couch for him so he would be comfy and still in the midst of the family action.
We had scheduled Nicky’s 3rd birthday party this day. I think it worked out well… the whole family came to see Max, not actually knowing he would pass that very night. His cousins came in and sat with him for a few minutes each. I’m sure it was stunning for the children to see him look the way he did. It was stunning enough for the adults. Andy brought Max outside for a little bit for the party, but he was not feeling good (he was super light sensitive at that point and didn’t even open his eyes), and went back to the couch.
I don’t remember much from the party to bedtime. There was a flurry of activity surrounding Max. His breathing at some point became wet sounding. I phoned Dr. Sholler and she instructed me to give him some of the emergency drugs we had from hospice, and told me “maybe 3-4 days.” He couldn’t get comfortable for anything when it was time to get to bed. He needed to sit up, he was floppy. So we decided to move him to our room and knew we’d be up all night. We propped him up on our bed with every extra pillow and I remember him adjusting his legs with his hands saying, “Why are my legs so heavy?” I phone my sister and asked her to come over to be with Hannah & Nicky during the night and the morning. We called hospice to have a nurse come and help us with Max and some meds.

Once we thought he was set-up in the bed, he had to use the toilet. It was a struggle to get him there. In hindsight, it’s obvious that his body was slowly shutting down, but at the time we were living moment to moment and doing what ever we had to. Andy supported Max under his arms like he had been doing for a couple of days while Max had to use the toilet. Max went fairly limp and heavy, and I could tell that something happened. On the way back to the bed – Andy was carrying Max – he was heavy as lead.

We laid Max on the bed, he was practically unresponsive. Andy & I were on opposite sides of the bed trying to help him, when he threw his head back, and his eyes rolled. We both called to him, “Max! Max!” His body jerked around a bit, and then he stared into the corner of the room like he saw something. It seemed like he was trying to talk, but no words would come and it was obvious that he wasn’t seeing us. We still called, “Max! Max!” And we may have realized at the same time that this was it. The tears started.

Max was dying right here in front of us.

Andy gained eye-contact with Max and through tears said, “Take Jesus’ hand Max.” And he closed his eyes, smiled and left us. 8:45pm.

We brought Hannah in to say her goodbyes. Kids are so profound. She said through her tears, “He didn’t even lose a tooth.” Nicky was already asleep and oblivious to the night’s event until the next morning.

My sister came a short while after and started making all the phone calls for us, as well as offering her calmness and prayers to our home. The hospice nurse came – we appreciate to this day the help she offered us that night. She helped us dress him in his favorite Clone Wars pants, his skull t-shirt that Tony Hawk liked, his skater beanie, and his flame high-top converse. He looked like Max again. All the swelling had left his face and body and he was beautiful again. Andy’s Dad and Aunt Joanne came by, and my mom and dad.

Then we went to bed with Max lying between us.

The small smile on his face stayed there until we laid his little body to rest.

It’s so hard when you finally submit to giving up hope that your child will be cured. That the coming days are numbered and you’d better get all you can out of them. It was like a weight being lifted – and yet only lifted to reveal the suffocation of the pain you have to endure from then on.

Melissa & Andy

Lemonade!

Get your ice cold lemonade!

Today Hannah asked me, "Mom, can we do a lemonade stand?'

Sure. So Hannah and her friend Kendra got everything they needed to stet-up a stand on our corner and headed out. Their first customer gave them $5 for two cups after learning that they were fund raising for kids charities. Kendra's family raises money for various childrens charities, and Hannah chose MROF. I told them they could do whatever they wanted, even make money for themselves. "No, we'll donate!"

Nicky joined in the fun as did another girlfriend, Jenna.

One hour later we packed up what was left of the supplies (I had to replenish the lemonade two times!) and went home to find that they had made $142.

$142!!

Good job girls!

not so good memory

I was just looking back through this blog and stumbled upon this. It was posting in Nov 2007, but was a note I had found in my organizer...

April 3, 2007
1:00pm
Almost cried just now. Max is in clinic watching a TV show where they're talking about how things change, like the seasons or how people change when they grow up. "How will you change?" they ask. Max looks at me and says, "My hair will grow back!" I'm suddenly struck by the thought of him not growing up and not having any hair ever again.

Coming up on Max's Angel-versary. Everything is hitting hard.

Last week I had a terrible dream about losing Max. It's hard to remember it all, and it was a dream so there isn't a good story flow, but the gist of the dream was that Max had been kidnapped and he had been gone for two whole years. But I had given up hope from the time he disappeared of every finding him. The emotions that were coursing through me were all so terrible and jumbled. It's been a week since I had that stupid nightmare and I've thought about it everyday. Really? I've had two dreams about Max since he passed and this is one of them? Great.

Run, Max, Run

Most of the reader's of this blog know professional photographer Deb Schwedhelm's work with kid's fighting neuroblastoma, Max and Sam specifically. Deb's work with our family was captured in a photoblog that she created called Mashed Potatoes For Breakfast. We'll never be able to give back to Deb what she gave us (forever memories of Max and our family together captured as beautiful images), and she continues to support and engage with our cause to fight neuroblastoma, even though she's moved twice since leaving San Diego.

Her latest effort to support the search for a neuroblastoma cure is something I wanted to share with the rest of Max's followers, in case anyone else felt equally inspired to act as she has.

Since Deb and her family now live in Tampa, its impossible for her to run in Max Run. However, as Deb wrote in her blog post titled Let's Do This, Together, she and her kids will be running 1 mile in Tampa on Sept 11, and she's soliciting her friends and blog readers to support her effort and help raise money for Max's Ring of Fire. Here's what she wrote...

i noticed the MAX RUN, which is taking place in san diego on september 11th, to raise money for pediatric cancer. my initial thought was, oh how i wish i could be there to participate in the run. but why can't i run? and participate? why can't i encourage people to sponsor me (donate) and just run here? and why can't i encourage others to do the same?

so you think you can dance did it with their july 31st national dance day, where people all across the world danced together on the same day. okay, so maybe running isn't exactly as fun as dancing but... let's try it. let's try to run one mile on september 11th together no matter where you are. and let's - together - spread the word and encourage others to donate to fight pediatric cancer. and while your donation can't help max or sam, it could possibly help children like will or talia, who are both currently battling neuroblastoma.

on september 11th, at 9:30 AM, i am going to run one mile. can you please sponsor my run — simply click on the Chip In button below to donate to fight pediatric cancer...

No matter if you live in San Diego or elsewhere, for whatever reason if you can't come and run with us at Max Run on Sept 11, you can still participate by simply running/walking wherever you are - let's make Max Run live up to its name by MAXIMIZING awareness by making it a national day of running/walking in support of finding a cure for childhood cancer, and MAXIMIZING the money raised, 100% which goes directly to fund cutting edge research and clinical trials through a 100% parent-supported consortium.

If you're interested in participating this way, here's all that you need to do:
1) Commit. Just do it. Think of how hard Max struggled against his cancer. 1 mile walking, 5 miles running, whatever, isn't that big a deal.
2) Decide how you'll collect sponsorship money from your friends - there are 3 ways listed below.
- Got a blog? Facebook account? Use a Max Run ChipIn widget to solicit donations online via PayPal using the Max's Ring of Fire PayPal account (so you don't have to worry about donations going to your personal account, instead it goes straight to Max's Ring of Fire). Here's the Max Run ChipIn widget:

simply grab the code via the 'share' tab and embed on your blog. If you need help setting it up on your website email me.
- If you are a more advanced user of web apps, you can also create your own ChipIn widget and use info@maxsringoffire.org as the PayPal account.
- If you are computer illiterate (or the people are that you are going to ask for donations), you can ask for checks to be made out to 'Max Run'.
3) Ask your friends/family/co-workers to sponsor you.

Pretty simple actually, isn't it? Operators are standing by (me, via email -- amikulak@maxsringoffire.org) to help you if you have questions or need assistance.

Thank you to all that have already donated, registered to run, or volunteered. For those still sitting on the sidelines wondering what they can do... jump in! Ask for help if you need it. We'd love to have you join us.

Love Lemons

Yesterday we received the following email. It's timing was no coincidence, I believe. The sender, the daughter of a very kind and loving family whom we don't see enough of, is Hannah's age, and her younger brother and Max were the same age also. I think Max (or God) is trying to send me a message, perhaps I'm complaining too much and praising too little. Thank you Shiney!

hi how are you? this summer ive raised a lot of money doing lemonade stands with my friends! today im doing one and i made a very great sign telling about max! cant wait to see you again so i can give you the money i raised !

The transformative power of love (or how we came to name Max's Ring of Fire)

Some people have asked lately about the origin and/or inspiration for the name of our foundation, Max's Ring of Fire.

I've also been seeing a lot of comments lately about the upcoming fun-run/fun-draiser Max Run that sound like, "hey, sounds like a great idea, great cause, but... I don't run... I don't like to run... blah, blah, blah"

All the excuses start to sound like Jake Elroy (John Belushi) from the Blues Brothers.



I'm not bitter when people decline to participate because they aren't available, can't afford to, or even just don't believe in the cause. Long ago I chose not to take it personally when someone declines to contribute, participate, or otherwise engage with our cause - life's too short to worry about that kind of stuff (and there's so many people who DO want to help if only you ask and show them how, so that's time better spent anyway!).

But what gets me are the excuses. "Oh sure, I care Andy, just make it easy for me to care, and I'll show up."

As Melissa and I have started giving more and more of our time to fighting neuroblastoma and other causes, a constant theme has emerged for me, and that is when giving is easy, you get less out of it. Giving in a manner that challenges the giver, also helps the giver; it helps them appreciate the sacrifice of their giving more. It makes the giving mean more to the giver. Altruism is a funny concept (quick refresher: altruism being an act that benefits someone else other than the actor). Altruism doesn't align well with biology and evolution.And while I know that evolution exists, I also believe in God. Perhaps that's where love enters the equation. Maybe God's love makes it possible to see past our own selfish interests and limits. To extend ourselves past our comfort zone. Take risks on behalf of someone else, but get something unattainable otherwise in return.

And there you have it, the meaning behind the name Max's Ring of Fire.

According to Rosanne Cash, Johnny's daughter, "The song (Ring of Fire) is about the transformative power of love..." The story is that four years after the song was released, Carter and Cash were married which Cash states helped to stop his alcohol and drug addictions.

I like the Rosanne Cash explanation. And I believe the Love Transforms message from the song, has become the durable meaning of the name Max's Ring of Fire. The video below also demonstrates the reason for the name (simply put, Max loved the song, sang it all the time, and aligned well with the skate, hot rod, alt country aesthetic associated with the Social D version).

Things you find...

... when you really clean the playroom (if you click on the images a bigger picture should open so you can read these):

self dated

written by Hannah while at church camp summer 2009

written by Hannah for Max... 2007?

Sometimes it really pays off to go through each and every page of all those note books and mostly unused journals to find the gems.

Wear Your Care

I came across this video today from Sept 2007, while cleaning up some photo archives on our computer. I don't think I had ever seen it before - watching it of course made me smile and tear up at the same time. This was for a Magic Water fundraiser that Max's infamous first (and second) grade teacher Lisa Sturt conjured up at our school. Hannah and Max are delivering the morning's message to the entire school via the Dolphin News Network, the in-house video network at Solana Highlands Elementary. In all, $11,000 was raised to help fund a cure for neuroblastoma. What do you think, should we try it again this year when Nicky starts kindergarten?

Happy 4th!

July 4, 2007.

This year we'll be watching fireworks from the deck of the USS Midway-one of Max's all-time favorite places to visit. Hope you all have a safe and fun 4th of July with your loved ones, both near and far away.

Max's 9th Birthday

Where the action always is, some great moments capturing Max and his squeaky voice.

Wednesday, June 30, 2010 marks Max's 9th birthday.

I can't explain to those of you who have not lost a child how difficult it is to get beyond the loss. In fact, I don't ever try. Simply put: it's not the same as losing an adult. I find it particularly interesting how I think of Max every time I look at Hannah or Nicky. He is a part of them and they are a part of him, and will forever be intertwined. And the feeling of loss is compounded through them as I watch them grow, as I see their photos on the wall progress, as I see Max's stay the same. Forever 7. Through Hannah and Nic he is with us everyday. I am thankful for that. They smile, laugh and fight and I see Max there with them. It is bittersweet.

This weekend we were at a friends' house for a birthday party and their 9-yr-old son, a friend of Max's, said to me, "Nicky has Max's eyes." Thank you for sharing that with me. Thank you for seeing it, too.

I can't tell you where I am in spirit with one of my kids gone. I think I still float through the days, possibly avoiding it. Avoiding looking too long at any one photo. I think it's time for me to make a new pot of Tear Soup. I'm not sure I ever completed my first pot. I don't think I got the seasoning quite right.

For Max's birthday this year, we will be enjoying crab claws. A favorite of Max's even when he didn't like food. We're going to make some paper airplanes and fly them away on the strings of some orange balloons. We invite you take part - where ever you are - in this celebration of a brave child's life on what would've been his 9th birthday, and to remember all the kids with NB who are fighting the fight, or have earned their wings.

I concur and sign my name at the bottom of Andy's letter to Max (following). I miss my second child. We all miss him. I love you, Max. I remember, not long before you left us, asking if I could spoon with you while you fell asleep one night. You were terribly uncomfortable from all your meds and the cancer, but you needed some love, too. I will always remember lying next to you with the nightlight on, barely stroking your arm, and you falling asleep. You were so sweet, always. Happy Birthday in heaven. I bet God makes good cake.

This is easily one of my favorite Max illustrations. All the red? Chaser bullets. Don't forget to catch the shark with the gun.

(Andy here)
Dear Max,
Well, the big nine-r. Almost double digits. Old men like your dad often take a moment on their birthday to look back and take stock of their lives up to that point. Young dudes like yourself never slowed down enough to look back, instead you were always looking forward. But I can't help imagine what may have happened in your life during the 22 months since you left us. You definitely would have:

• Lost your first tooth (finally)!
• Started and finished 2nd grade.
• Started and finished 3rd grade (maybe Mrs. Sturt would have become a 3rd grade teach at the same time!).
• Convinced me to buy you a bunch of additional airplane models to hang from your ceiling (I know you know that we took some from your shelf and hung them in Nicky's room - he loves them as much as you do and now whispers in my ear on weekends if we can go to "the model store").
• Watched every episode of Patton 360 with me on the History Channel.
• Built some really awesome Lego creations with Hannah, Nicky, mommy and me.
• Visited Legoland many times with Luke, or Jack, or some of your other friends.
• Watched all the episodes of The Clone Wars with your brother and sister.
• Continued to draw amazing pictures of whatever you thought was interesting.
• Continued to observe the world around you with the precision and detail of a scientist.
• Caught some more fish.
• You likely would not have enjoyed all the snow at Lake Tahoe the past two Christmas's, but thanks for sending a bunch for Hannah and Nicky to enjoy.
• Read Percy Jackson and the Olympians.
• Ran around in the backyard naked with your brother and sister when it was warm out.
• Attended KidsGames.
• Started attending Sunday School regularly.
• Continued to grow and start to become a fine young man from the fine young boy you already were.

There are so many things I would like to say to you Max. Maybe you can intercept my thoughts about you every day. Maybe when I say "hi" to your pictures on the wall or on the computer you can hear me. I hope so. I miss our conversations, I miss your questions. How much I ache to touch your almost porcelain-white skin again, hear your squeaky voice talk about battleships and WWII fighters again, see your smile.

I know you're in heaven right now. And even though I didn't teach you much about heaven before you died, I know you went there immediately. You were the purest person I'll ever know. There was not one malicious fiber in your being. Not a bad thought about anyone - you wanted everyone to be happy, to feel loved, to have fun.

Happy birthday my sweet boy! I will always love you. And I will see you again someday!

Daddy

Reach 4 The Sky

Hannah boarding the bus to Camp Reach 4 The Sky

This morning I dropped Hannah off at her usual spot this time of year, to get on a bus and go to the local mountains for a week of sibling camp at Camp Reach 4 The Sky - staffed and attended exclusively by kids & young adults affected by their siblings' cancer. Hannah just adores this week away. And while we will miss her (usually around Thursday... don't tell her!), it is once again a bittersweet moment...

Max at Camp Reach 4 The Sky (day camp) in July 2008

This father's day was pretty busy. We were getting ready for Hannah's week away and Melissa was volunteering at our church's Kids Games that we attend every year. This year its only Nic attending, and he wasn't too excited about it either, but after day 1 (today) he's totally into it.

All this summer stuff brings back many memories of Max which is both great and tough to deal with. Lately, I think we've all be having a rough time of things, even if we don't recognize or admit to it. Nic especially, exhibits behaviors that really show how much he misses his big brother. He just latches on to older boys like nothing else. And it just tears your heart out to understand what's going on and see his "thirst" for that older boy relationship be quenched, albeit only temporarily.

We are making plans to celebrate Max's 9th birthday this June 30. May and June are rapidly becoming months I'd rather skip over, much like November and December are already. There are just so many opportunities to miss Max due to all the birthdays (Melissa, me, Max, then Hannah in mid-July), mother's day, father's day, end of school, etc. We are trying to turn Max's birthday into something of a tradition that we can replicate. Even though food was not big on Max's list of "likes" (he did have the g-tube for over a year), one special food that he liked to enjoy at times was crab. And so we will have crab for dinner every June 30. You can too if you'd like. And get claws... to play with.

Touch-A-Truck Blew the Doors OFF!

It's Monday and back to the grind. I'm in mop-up mode following a wildly successful event. We raised just about $29,000 for childhood cancer on Saturday, and most of it was through admissions and general donations at our lemonade stands, bake sale, cake walk, and through the efforts of our armed forces. (huh?, you say?) The Navy SEALS and Marine MARSCO units did a little fund raising on their own for us in the Camo-Area of Touch-a-Truck. They rock in so many ways. Here they've teamed up with a special Star Wars Unit... (Needless to say that everyone had a great time - even the big kids.)
We made some incredible new friends this year who we hope to take with us into the future of this event. Yes, the future. Saturday 's attendance was over 2500 by our estimates. This is up 5x - 6x times from last year. And from the response we've received thus far from attendees and participants, I see this event being bigger, Better, LOUDER every single year. Changes will, of course, have to be made to make sure it's as enjoyable in a larger format as it was this weekend, but I think with the dedicated people we have who are willing to help us, we can do it.I couldn't possibly end this post without photos of my kids at TAT. Here are Hannah (middle) and her two best friends, Jenna and Storm Trooper - and, yes, that is a sand-person peeking out of the back of the Deuce. Below is Nicky on top the armored HV playing with the 50mm gun. Atta Boy!

Max was certainly smiling down on all of us Saturday. Here's a photo of him... (on the dash)

What was he thinking?

I have generally avoided looking at this series of pictures by Deb taken in mid-August 2008, on a particularly painful night when it was clearly evident that life as we knew it for Max was going downhill, fast. But this one came up on the screensaver tonight and it captured me. Knowing the location and the direction he was facing, I know he's looking at nothing - well, the sky - but nothing else. What was he thinking? What was he feeling? Who might have been talking to him in words I'd never hear, as my heart wasn't able then to allow me. I'd give my right arm to be next to him for 10 minutes, so that I might ask the question I never did.

Curls

Neil mentioned Max's curls a couple of weeks ago. I've been thinking about them since... and I realized that this was during the good times so we didn't post much. But we see these pics everyday as they come up on our computer monitor's screensaver, so thought I'd share some favs. These were all taken during 2006, from Spring through Summer.

First Since Without

I forgot about these pictures. We had them taken in April 2009 by the inimitable Deb Schwedhelm. Our first since Max died. I hate to admit it, but I'm not much for taking "family" photos these days. We take tons of photos of the kids and all but it's weird taking them without Max. Sorta like a slap in the face reminding you of what's missing versus what's there. I know, it's all in my mind and a simple shift of attitude changes it from "what's missing" to "what's here" but sometimes attitude doesn't win out over the plain old truth that Max is no longer with us.

However, Nicky saved the day for us. Out of the blue, he started singing Ring of Fire. He actually did a pretty good job. Hasn't done it since. Never did it before this day. That's why he's standing in the picture above.

Easter Break

Another holiday. Another time to remember funny little things about Max, while watching Hannah and Nicky display some of those missing actions without even knowing it.

We were truly blessed this year to have Donna Ludwinski stay with us over the weekend. Donna's son, Erik, just passed away two months ago (NB) and their grace in handling his death is beyond inspiring. Donna was great therapy for us both, but I think even more so for Andy. I can't explain her to you. You have to read her blog about Erik's journey - about their family's journey - to even come close to seeing into her. Their spirituality, their belief in Jesus and eternal life, gives me such peace.
Donna flew out from upper Minnesota for Sam Hutchison's All-Star Party... perhaps better explained as Sam's Celebration of Life - Sam's battle ended four weeks ago. The Hutchison's and their friends and family did Sam right with an all-sports theme party. He was certainly smiling down from heaven with Erik and Max holding his hands.
Easter arrived and was happy and multi-colored for all of us. I mean, what's more Easter than fluffy blue bunny ears? The kids had a great time coloring their eggs as usual, although we were missing Mr. Blackfinger (Max). Somehow, he always colored his eggs with his hands - no spoons please - and his fingers would be blue-black for days. Nicky had a little of it going on but he freaked out and wanted no more of it!

Hannah has always used the proper technique of dipping using the little metal bendy thing that is always included in the Paas box. She was quite creative and patient this year and ended up with some splendid eggs.

The Easter Bunny naturally had the eggs hidden throughout the house when the kids came downstairs Sunday morning. This particular orange egg stayed well hidden right on top of Max. Nic finally spotted it.

Donna joined us in church Sunday morning and then we put her to work hiding plastic eggs with Andy at our bluff park. I think we had over 100 eggs for only two kids! It took longer to hide them than to find them. This is Donna and me at Powerhouse Park. (She's the one in the Minnesota sweatshirt.)Our Max sighting for the day was this red tailed hawk swooping past the bluff park carrying a bunny away for Easter dinner, presumably. In our Lion King mentality we thought this was Max's very funny way of saying "hi!" on Easter. He loved raptors, so this was perfect. In real life it looked like the bunny was hang gliding... well, kinda.

The kids had the week off so I took them up to Uncle Kevin's and Aunt Reba's house in Santa Cruz. (Andy had to work unfortunately, but I think he probably enjoyed Bache-ing it for a few days!)
Day one Rebecca and I took the kids to the Santa Cruz Boardwalk. Hannah's definitely our rollercoaster girl. She loves the crazy rides and doesn't care one bit about going in line by herself. She is SO easy! This is her in seat 10 on the big swing.

This cute little blonde kid with Hannah and Nic is cousin Kanan, my brother's grandson. Kanan is six month older than Nic, who in turn in six months older than cousin Katie. At some point in the family's future this will be great when we all get together. It's good to have cousin's your own age!
Hannah took Kanan on the kiddie coaster. They went around two times like that. So cute. It looked like so much fun, that timid Nic decided he was game for the ride. We went on and it was a small disaster. Nuf said...
Not to say that Nicky didn't enjoy some of the offerings! He's simply not Hannah.

Day two of the trip my brother and I took the kids to the Monterey Bay Aquarium. Wowsers. Our Birch aquarium is tiny! Hannah could've spent 12 hours in there exploring and examining everything. Me too. It is amazing.

On our last full day we headed north up Hwy 1 to check out the rugged coastline. So beautiful. We even saw otters in the waves! It was a very fun trip and one I thoroughly enjoyed with the kids. It's good to Live Life to the Max and I think we got that in this past week.