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Maximillion’s Story

The kids and I decided to enjoy a beautiful day at the park on Feb 3rd, 2013. The baby was in the baby swing on the far left, Alex was in the next swing and Max was racing for the swing next to Alex. At the last second, he darted in front of Alex, presumably to get to the baby.  Alex had a broken foot with a boot and couldn't properly stop and pretty well flattened Max to the ground. He looked like he'd gotten the wind knocked out of him as it took a second for him to process and then gasp, then cry. I picked him up and he melted over my shoulder. I sat on a bench and he just cuddled with me which was unusual for Max in the middle of the day at a park. Usually he'd protest with wiggles and race off for the slide. We sat there for what seemed like a while when he asked to go on the slide one more time. "Oh.. ok. He's ok!", I thought. 

We went home and he crawled right into bed with his daddy. After about an hour, Kelly said he was really hurting. I called his doctor and as I was on hold, Max threw up all over us both. The doctor told us to go to the ER. 

Alex felt devastated. Max threw up some more in the car. A bit of red. 

The CT scans showed what looked like massive hemorrhaging. The kidney looked like it was flayed open and probably would have to be removed. (What?!!) "But also, this shading is weird and could be a tumor.." the doc says. We just blew him off. What a jerk. Can't he see how freaked out we already are? 

They transported Max by ambulance to Children's Memorial Hermann. After a day or two they sent him home and said to do another CT scan in three weeks after the blood reabsorbed back into the body and they could see exactly how much damage was done to the kidney. 

Tuesday the 26th we went back. They told us it would be three days for the results. I was aggravated that they would make us wait another three days after stressing for three weeks. 

The next day our doctor called. It was a tumor. It had actually gotten bigger in three weeks. It was called Wilm's tumor. I could look it up. It's the best kind of tumor you can get. He'd have to come in today for surgery. 

I think our whole world crashed right then. Only I didn't know yet that Wilm's is cancer. That would come an hour later. Only I didn't know that it meant he'd probably have to have chemo. That came about 8 hours later. I didn't know it would mean a 9 inch scar across his tiny belly. That would come almost a week later. 

So here we are in the purgatory between a successful surgery that got the entire melon-sized tumor out and the long journey of chemo. He's thin. He's not eating well. He hurts and cries at night, not in full tears, but a whimper as he jerks with pain and holds his belly. 

When I cry, I feel bad for not being a strong beacon of positive energy for Max. When I'm ok, I feel guilty for not feeling bad that minute. I'm ok, then I'm not. 

Mostly, I'm grateful for all the support from our friends and family. 

Latest Journal Update

Make-a-Wish vacation!!

Most of you read little updates on my Facebook page and I forget there are people keeping up with Max who are not my FB friend.  If you are not, I hope you add me.  With the exception of a few more CT scans, this journey is just about over.  I don't want to lose touch with anyone who has joined us on this journey.  

I could write a whole book about the amazing week we had in Florida.  It was more than we ever could have dreamed.  But I'll keep it short-ish for your sake and for my own short attention span.  

The Make-a-Wish resort is called "Give Kids the World".  It's like a small sub-division set in the "Leave it to Beaver" version of the 1950's.  Everyone smiles.  Everyone waves.  It's quiet.  It's clean. It's safe.  It's colorful - SO colorful.  It's based on Candyland so there are giant candy canes and cookies and elves and animals.  It's a dream.  

When I was little, I actually had a dream where I was lost and walking home on a country road.  A wolf was after me, but a little elf ushered me toward a ditch where there was a tiny railroad with a tiny train that went into a smallish cave.  I road into the cave and it was a thrilling rollercoaster of twists and turns through giant candy canes and gum drops.  It was the best dream ever - obviously, or I wouldn't remember it, right?

This place was better than that. 

There's an ice cream shop where you can go at any time and get free ice cream.  There's a stage where you meet the characters from Disneyworld, Nickelodeon, Universal Studios and even Santa!  They are the actual people who work in the parks that come at 8 a.m. to take pictures and autograph books before the parks open.  There's a dinosaur miniature golf where the dinosaurs move and growl and blow smoke!  There's an arcade.  There's miniature boat racing.  Horseback riding.  Fishing.  There's a party every night.  There's teen night for the older siblings every night from 9:30 to 10:30.  Every day you'll find a gift on the table for each child.  There are like 8 employees and 1500 volunteers.  People from all over the world take their vacation days and come here to serve food, throw parties, welcome families in.  There were 7 kids from Indiana University who helped Max with the special star ceremony where Max signs a little gold star and a fairy takes it and places it on the ceiling along with the thousands of other families who have stayed there over the last few decades.  The next day, they give you a certificate to locate it. 
...and there's so much more.  Alex wants to go back one day and volunteer there when she's older.  

So the top stories of our trip:

1) Max got sick on the 4th day.  Duh.  In the Book of Duh, this would be chapter 8: A cancer kid doesn't have the immunity to be bombarded with airport/amusement park germs.  *facepalm*  I guess because Max had been out of chemo for all of almost 3 months, we decided he was totally fine and normal.  We forgot that he's lived in a germ-free house for a year.  Jameson too, by proxy.  We should have slathered him in sterilizing gel all day long and truly, probably a mask.  No joke.  Day 3, he was starting to feel bad.  Day 4 was Thanksgiving and he was in bed all day until dinner when we cheerfully dragged him to the village dinner.  He immediately barfed in line.  We waited for the gasps of horror, but the volunteers offered sympathy and quickly threw towels over it and cheerfully carried on.  It was so merciful.  We were so grateful.  We'd forgotten that we were in a village of cancer kids.  It probably wasn't the first time a kid was nauseous there.  Friday was our last chance at Disney before our 6 a.m. flight on Saturday, so we chanced it.  At the swanky "Be Our Guest" ballroom restaurant, Max barfed at the hostess podium.  

Ah.  THERE'S the looks of horror.  Suh-weet.

Luckily someone had discarded a plastic gift bag in the corner and Kelly used it as Max's barf bag.  We sweated out whether or not to take him to urgent care at this point.  His particular chemo makes him prone to pneumonia and he was hacking up a storm. Also, the folks at the village are so dialed in that they know every doc who takes every type of insurance in the area.  So we left early and took it easy that night, opting to wait for our own doc in the morning.  

Disney and Universal have the Make-a-Wish thing dialed in.  We didn't have to wait for anything.  We were ushered to the front of every line or in some cases, just walked in through the exit and jumped on.  While getting in line to meet and take pics with Peter Pan, the "cast member" curtly informed me that Peter Pan was going to take a break and wasn't taking any more people.  "Oh...ok", I said, taking Max by the arm and swinging him away from the line.  She saw his M.A.W. button and said, "Oh! So sorry! Right this way!" and walked us right to Peter Pan and Wendy.  They arm-barred the next family like a cartoony Secret Service and guided Max right up.  People saw Max and got teary! (What?) They started taking pics of Max and Peter Pan! (What?) The park photographers became papparazi and just started shooting picture after picture. Peter Pan goes nut hugging all over Max.  Wendy gives him a big kiss on the forehead leaving a mark throughout the rest of his night.  But that wasn't the cool part.  10 minutes later we'd pulled over down the way to figure out what to do next. Suddenly we hear, "Max! We've been looking all over for you!!!"  and it's Peter Pan and Wendy.  And the papparazi.  Again, people stop to see Max and start taking their own pictures!  They walk hand-in-hand down the way as they escorted Max to the Peter Pan ride - right up front.  It was a lot of to-do and attention and Max was blown away.  I don't think he even knew who Peter Pan was until Monday.  But he does now!  It was really cool of them to do that for Max.

At Universal (Tuesday) we happened to run into the right guy who set Max up with a meet-and-greet with all the Marvel superheroes!  In a special back alley at the park, we got to meet and take pictures with 5 different superheroes.  No one else could even see them, so no one else came over to horn in on picture-taking opportunities.  It was all about Max.  As great as they were, it was really awesome to meet Spiderman.  You might recall that his hospital room was endlessly decorated with Spiderman from all our amazing family and friends.  Meeting Spidey was extra special.  

So aside from our incompetence with germ warfare, Max had a great time.  He actually doesn't know he ever had a bad time!  That's how it is with kids.  They embrace the awesome and dismiss the bad.  We should all live like that.  He still tells people that "last night... we were at Disneyworld!", and wants to know when we can go back.  Soon, baby.. soon.  In fact, we're going to take more family vacations from now on because at the end of the day, the least we can take away from all this is that family time is more important than anything.  Even if it's just a weekend.  

...we'll pack the sanitizer and germ masks this time. 

So I've mentioned some really great organizations if you're ever looking to donate.  Here's two more:  Make a Wish and Give Kids the World.   They do amazing things.  You know about M.A.W., but if you could see the G.K.T.W. operation.. I just can't tell you how awesome they are!  

Lastly, I want to send you - yes YOU! - a Christmas card.  We have so much to be grateful for, but especially we are grateful to all of you who kept up with and shed a tear for Max this year.  I'd be so honored if you'd let me send you our card.  So please send me your address if you are reading this.  My email is sumeriantraveler@hotmail.com.  You can also find my facebook page that way so you can keep up with Max and not only his post-cancer journey, but his mischievous-and-terribly-three journey.   Because I'd hate to lose touch with you.  Every time I'd write an update, I'd look at the number of people who read this journal and think, "10 people/30 people/100 people saw my soul today".  So please.. send me an email.

Thanks for your prayers, laughter and tears.

The McMichaels