Max's Kid Friendly Blog

When Max relapsed we felt it important to help his fellow classmates keep up with what was going on, and attempt to tell Max's story from a 5/6 year-old's perspective. We called this blog "Max's Kid-Friendly Blog" and it didn't include any of the occasional complicated, dark posts that were meant for older audiences on this blog. About October 2007 we stopped updating Max's Kid-Friendly Blog; it just became complicated to keep going. At some point before or right after Max died, I rejiggered the entire blog to move it from an active treatment mode to a mourning and remembrance mode. At the time, I didn't even know if we would continue posting or just let the blog remain as it was. In my rejiggering, I removed the link to Max's Kid Friendly Blog, and have recently revisited the site and thought I'd simply share it here in case you never saw it in the first place - there are many great adventures from our glorious summer of 2007 described in much greater detail than on this blog.

http://maxmikulak.blogspot.com

Tonight is Halloween. Thus begins the "sucky season" which ends January 1. This year, Hannah is a belly dancer/girl-genie (Lord, help me, I have a tween girl), while Nicky is going to be a pirate. Max (Bruce the shark) will join us tonight of course.


October 31, 2003. Hannah the butterfly and Max the alligator. This was our first Halloween in our current house.

October 26, 2004

Yesterday, 5 years ago, we began the journey that changed our lives forever. Max checked in to Children's Hospital with what was eventually diagnosed as Stage IV, high-risk neuroblastoma.

for real

Sorry for the lack of substantive updates lately. Neither of us really have a good excuse like, "we were building homes in Tijuana," or, "lobbying Congress for more neuroblastoma funding." Truth is, we've been doing nothing. Not really. We've been busy, really busy. Not busy really doing anything worthy of a blog post however, at least not on a regular basis. I think we're hitting a new phase of mourning.

I haven't read any mourning books so this won't sound very credible but I think we've entered the "holy sh*t this is for real and Max really is gone and we can feel it deep within our bones every minute of every day" period of mourning. On the surface, I think some - maybe most of the people we see on a regular basis - believe we're getting along just fine. And we are, on the surface. We have fun, we go out, we laugh.

We talk about Max. Or we don't.

We're over the "structured" part of mourning where we try to schedule/control how and where we integrate a Max moment into our family's experience.

It just happens. Or it doesn't.

We're not forgetting him, we're likely just becoming used to him being dead and not with us. Don't mistake this for being comfortable with him not being here.

I'm supremely comfortable not fighting cancer every day. It's nice not to have the proverbial gun to your child's head every day with all the stress and anxiety that brings on. But the topical relief of not having the stress of the fight, versus the deep, deep pain of not having him around, and knowing that we'll never see him again on this earth ever again, is much worse.

Three weekends ago I took Nicky to the Miramar Air Show. I hope I'm not pinning all my expectations and lost dreams from my relationship with Max on Nic - trying to have Nic be my stand-in for Max. If you start to see any pictures in this blog of Nicky standing at the top of a skateboard ramp while Tony Hawk does a hand plant in front of him, please email me and tell me to stop. So, back to the air show.

Walking around the tarmac I came across a familiar looking bi-plane. Anyone remember this?



It's the airplane on the left from Max's celebration of life. It was the last airplane owned by Steve McQueen (a Stearman). I felt it was a good sign from Max to come across this since I usually wander around the more exotic airplanes at a show like this.



Nicky has also taken to demonstrating his disapproval in a most obvious manner. I think he didn't like that I wanted to take his picture by the landing gear of this C-5 Galaxy.



Here's another photo with the same pose so that you know I'm not making this up...



Rather than watch the planes Nicky liked to walk through the static displays and most of all, he liked the "army guy" tanks and guns. This is a howitzer of some sort that impressed Nic.



This past Saturday we went and got our pumpkins to the east of us at Bates Nut Farm, or as we have started calling it (thanks to Leo), "Nates Butt Farm" which the kids enjoy for obvious reasons. Yes, we are high-brow in our household. Being that it was a sea of orange at the farm, it was hard not to think about Max (or Macs).





We brought "Max" along with us (in the form of his trusty Bruce shark). I'm sure people think I'm weird carrying around a stuffed animal in the middle of the day, but then I've also shaved my head and people are giving me a wide berth these days anyway so...



I've been thinking a lot lately about our trip to Disneyland last August when Max was really sick and not really in the proper condition for an all-out attack on the Magic Kingdom. The picture below was from our second night I believe when Melis took Hannah and Nicky to see the Fantasmic show that our friends Lisa and Lance got us in to see (from the producer's stand no-less where you are right up in the action)... Max had no desire to go and so he and I were going to hang out in the hotel room, but I persuaded him to visit the Lego store in Downtown Disney for a little side trip. He ended up walking the whole way to the store and back. Coming back he was shuffling away with so much energy, so happy to have procured yet another Star Wars Lego set.

Max kept on saying, in his magical sing-songy voice, "this is the happiest day of my life," and I was almost crying as I knew there weren't likely many more moments like this to have with him.



Miss you...

...and thank you, Shiny

Two in one day.

While picking up Hannah from school today, one of her friends came to me with two kid-tattered envelopes filled with $22.55.

Cheyenne, or Shiny as everyone calls her, held two lemonade stands this summer to raise money for Max's Ring of Fire. Her little brother, Tristan (aka T-Dog), became friends with Max when the boys were three and she and Hannah were in Kindergarten together. We had lots of playdates with those two kids, and Hannah went home regularly with Shiny after school when Max was in the hospital. A very kind family raising very kind and compassionate children.

Thank you, Shiny. You are a bright light in this sometimes dark world. Keep shining.

Thank you, Jack

During the summer in our neighborhood we have free evening concerts every Sunday night. Hundreds of families come with their picnic dinners, chairs, frisbees and soccer balls. The music is loud and fun, and a good time is had by all.

This summer, one of Max's friends decided to pack his wagon full of lemonade, water and goodies and sell them blanket-to-blanket at two of the concerts. We received this note from him:

This $15 is for Max's Ring of Fire from my fundraisers. Thank you, Jack

Max thought Jack was the coolest kid in school. Jack was a little bigger than the other kids and super-sports guy. He could play everything - and was good at everything, too. Max I think, looked at Jack with perhaps a little envy at his abilities, but also lived through him while watching him play.

This picture is from Max's 6th birthday party. Max's face looks like this because he liked Jack that much.
Our thanks to you Jack for bringing a smile to Max's face and to ours.