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



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.

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
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.