Maximillion McMichael's Journal
Written Dec 7, 2013 4:44pmMost 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 firstname.lastname@example.org. 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.
Heartbroken by his bravery
Written Nov 12, 2013 5:00pmI'm not sharing this one. I'm just venting.
We didn't get any results yet.
Yesterday I got the call I've been procrastinating for a couple weeks. Max's CT scan. 7:30 a.m. today. I tried to reschedule, but apparently it's all a very intricate dance of appointments and doctors. If I was to reschedule, the whole thing would fall like a giant Jenga game. I knew Kelly couldn't make it. He's working every day to make up for the week we'll be gone to Disney. I've been dreading this appointment and I was going to do it alone. Well.. with Jameson in tow as well.
I'm pretty sure for adults, a CT scan is easy. For kids, you have to drink 3 glasses of Gatorade laced with some kind of "contrast" every half hour. So here I am coaxing Max into doing these shooters, and Jameson helpfully spills a cup on the floor. He's a climber now. Not a very good one, but ambitious nonetheless. He thinks he can jump off low edges too, but what he actually does is bend his knees, "jump" into a standing position and sort of lean forward into a face-plant as though his feet were piano-hinged to the edge. That'll come into play later.
The nurse comes in and starts slapping his little wrist looking for the best vein. She asks how he is with needles. I tell her that he's a pro. She asks if I need to hold him down. I say no. But he wants to sit in my lap anyway. He asks the nurse if he can insert the needle himself. I laugh because by now, he just about probably could. We get into position and I cover his eyes so he doesn't make me a liar by jumping in anticipation of the poke. She warns me, "He can't move.." He knows it's coming and starts to cry. The nurse is holding his right hand, so he balls his left hand into a fist and it tenses up until it's vibrating. She pokes him and he screams through clenched teeth, fist still shaking, but his right hand doesn't move. His tiny little body is protesting in this eerily mature and controlled way. He's not thrashing. He's not recoiling. He's completely in control of what his right arm is doing. She pushes and pulls the needle for a little over 5 minutes. That doesn't sound very long, but if you had to watch him... it was an eternity in Hell. And to no avail. No blood.
She wraps up the right hand and starts slapping the left. Same thing all over again. Exactly the same. After a little over 5 minutes, no blood. Are his veins shot? Did the chemo do this? Is this going to be a problem indefinitely? What are we going to do?
She ultimately calls "the vein team". They use an ultrasound to find the vein. So there will be at least one more poke. Great. Max isn't terrified of needles yet, but he might be after this.
They cart us to this special room. Three guys hover over Max as I caress his forehead. Jameson is asleep in his stroller, thankfully. They ask me if he's a fighter. I almost cry when I tell them no. Obviously, they don't believe me. All kids thrash and fight. All kids panic and freak out. Max can't possibly be different. They ultrasound him, spray him with the numbing spray for the third time and... poke. One guys is holding Max's shoulder, another holds his hand while the third wiggles the needle around for another 5 minutes. Max tenses. His eyes squeeze shut. He screams through clenched teeth and his left hand balls into a shaking fist.. but his right arm doesn't move. The two prison guards slowly let go, astonished. "Wow. He's really good!" Wiggle, wiggle. Yeah. He's really good. Max hitches through his tears and says, "I can take it much longer!!" A couple more wiggles and.. no blood. They let his arm flop. After another minute, blood came. I think I didn't breathe until that moment.
Apparently he has spasmodic veins. As soon as you poke, they recoil and constrict. That's fantastic.
It's another hour before we get to the CT machine. The kids have been there 4 hours with no food or games. They both have had it.
Now we have to go upstairs to the next tower and get blood drawn. Max is excited to be back on the cancer floor. He knows this place. Jameson promptly climbs up onto a chair and piano-hinges onto his face in front of everyone. I'd be embarrassed at all the disapproving glances, but it's been a long day. Tape up and play hurt, kid. You're fine.
I haven't been to TCH in three months. I physically cannot look at the window to the ER because now that I'm no longer desensitized with weekly visits, all I can think of is when we went there that very first day. I was scared and in shock. My baby had cancer and all these other parents were sitting there annoyed because they'd been waiting for hours with a sick baby and had no idea how lucky they were. I hated them all.. It was the worst day of my life.. right there through that window. And it cut me as deeply as if it were yesterday.
But these moments where my baby is extraordinary... when he's so brave and mature beyond his years and at the same time still a scared little boy... It's harder, I think, than if he wasn't. I'm angry and heartbroken that life threw my baby a cactus and he had to make a beautiful rare flower from it. It kills me.
We don't find out the results for another week. Please keep him in your prayers and good healing thoughts. He doesn't need to be any tougher. He doesn't need to be any more extraordinary. He just deserves to be a healthy, bratty, snotty little kid. No more cacti or flowers. No more lemons or lemonade. Most of all, no more pokes for a while.
Thanks for all your prayers.
Heather, Kelly, Supermax, Alex, Austin and Jameson Duke.
Written Nov 6, 2013 5:11pmJust got a call from the Make-a-Wish people! We're leaving in just over two weeks! So exciting! I'm sure I'll have a lot more to say about that soon.
Jameson had a tiny bump on the bottom of his foot. Probably a splinter, possibly a wart. It had been there for months and now it was starting to bother him. But lately also, I noticed his rib cage was wonky. The last rib protruded a bit. Not like it was broken, but more like extra bone was growing. Or cancer. It's probably cancer. Here we go again. It's probably bone cancer with a splash of anthrax that can only be cured with a rare mixture of plutonium and unobtainium which will cost us another 8 skillion dollars - **STOP!!!**
...and that's how I fall off the edge of reason with all medical issues these days. A playground accident became cancer. Austin's sore throat evolved to a kidney infection and blood in the urine. So Heather from 2012 used to say, "Let's look on the bright side! It's probably not that bad." 2013 Heather says, "Let's get ahead of this. What's the absolute worst case I could prepare for - excluding death and aliens." Actually, I'll allow aliens over death. Death isn't an option.
So now I walk into the doctor's office just about once a week. I DO have four kids. It's NOT impossible to have medical issues once a week. Don't judge me. The nurse and the doctor smirk at us. I'm ok with the smirks. I've been to worse-case-scenario land.
The doctor looks at Jameson's ribs and announces to no one in particular, "Some babies have asymmetrical ribs and it just happens and they're perfectly fine." That's what I was hoping for. I'd told Kelly on the way over that what I wanted to hear was, "I've seen this lots of times before and it's nothing." In fact, that's what I want to hear about everything from now on. Forever. Luckily, that's basically what he said. Kelly asks what we should do to check for Wilm's on Jameson going forward. Doc smiles - almost proudly, weirdly - and says, "Every doctor has ONE Wilm's in their entire career. Max was mine. Jameson is not going to get Wilm's." (Note to self: this doctor is NOT Irish as he did not even try to knock wood. **knock, Knock, KNOCK**) But the way he said it was with a kind of proud reverence. Like Max is special. Max is his ONE.
Kelly and I both visibly exhaled and relaxed a bit. I said, "Well ok. As long as you understand that we are sufficiently traumatized and we'll be panicking a lot in the future so be patient with us." He grinned and said, "Every lump, bump and non-specific rash.. not a problem." I'm so grateful for this doctor. I'm grateful for his patience. I'm grateful that he doesn't waste time mincing words. I'm grateful that he knows the names of all four kids and remembers us as though we're special. But mostly I'm grateful that he's letting me cope with my fear without being dismissive or judgy.
We still have that CT scan to do this month. I should call about it, but I'm dreading it sooooooooooo much. I'm finding a LOT of other things to do to keep me busy rather than call. I've organized pasta to avoid that call. I've alphabetized all our DVDs to avoid the call. I've baked literally hundreds of cookies and re-organized all our medicine because THAT'S clearly more critical that calling about that CT scan. I'll do it.
Today though I had to design some sweatshirts to wear at Disney. They're pretty much the same as the T-shirts, except this isn't a fundraiser and instead of "Team Max" in the pocket area, it's a "No cancer" sign. A lot of people didn't realize there was only two weeks to order the t-shirts and asked if they could get one. I'm making the first bulk order this Saturday the 9th. After that I can order in groups of 6 or more. A group of 12 drops the price a bit to $33 so if you want one, email me at email@example.com. It'll keep me busy so I can procrastinate some more. :)
Keep Max and all of us in your prayers. There's some emotional fallout post-chemo in the family and we could use some good thoughts our way.
All our love and appreciation!
Heather, Kelly, Max, Jameson Duke, Alex and Austin