WARNING: Long, book-nerdy post to follow. But the short version: “VOTE FOR MIKE NUCKOLS IF YOU LOVE BOOKS!”
This morning I was invited to speak before the Haddonfield Public Library Board of Trustees, which was an invitation that meant a lot to me personally.
I let them know where I stand as a candidate. I’m in favor of a diverse curriculum that presents a range of views and perspectives. I’m also in favor of treating our teachers like the professionals they are and trusting them to lead the vibrant discussions that have produced a district that is among the best in the nation.
I also made it very clear that I’m firmly against banning books.
Books are emotional for me. Consider this…
In the 1940s, Hitler’s words were blaring all over the world.
At the same time, a 14-year-old girl was putting her words down in a journal as she hid in an attic.
Here we are 80 years later. Hitler’s words are long since silenced. But that little girl’s words?
The Diary of Anne Frank has sold over 30 million copies and has been translated into 70 languages. Every year it is taught in thousands of classrooms across the globe.
Over the years, I have been told many times in subtle and not-subtle ways that my wife is out of my league. How did I get her to fall for me? On our first date, we spent at least two hours talking about books and bonding over how much they mean to us.
Inkwood Books keeps at least 6 copies of John Steinbeck’s Cannery Row in stock, because I buy it so often as a gift for people who are going through hard times.
I genuinely believe that books have the power change the world, and the power to change the individual world of children who read them. And I think the group of people I met with this morning are on the front lines of changing the world.
It was my absolute honor.
Final campaign-related note: As recently as 2020, there have been attempts to ban A Diary of Anne Frank. I am the candidate that has publicly come out against banning books, and this is part of the reason why.
Important voting info
Deadline to register for mail-in ballot in Nov 1 (request yours).
Last night I received the best contribution yet to my campaign. Some members of the Special Needs Community in Haddonfield organized an event for me last night. It wasn’t so much about campaigning, but an opportunity for me to hear what their concerns are and learn what they need from a BOE member.
I walked away humbled and so grateful they took the time to educate me.
Here are 5 takeaways for me:
The burden these parents face is remarkable. They have become experts in a part of the educational system that most of us don’t appreciate. ABA, IEP, BCBA…they learn an entirely new language in the service of their child.
The search for consistency of services and staff is a constant challenge. I think the school and the parents are constantly wrestling with this.
They feel supported in Haddonfield and grateful for what our schools provide (but it still takes a lot of work from the parents).
Greater awareness among parents whose kids do not have special needs is an amazing opportunity. Kids with special needs DO NOT bring a classroom down, they ENRICH it.
Finally…Shani and I both left feeling blessed to be in the same community as these parents.
And then after a meaningful and important conversation, we all hung out for another hour laughing and having a great time.
My deepest gratitude to everyone who attended and shared their experience with me.
As promised, a post with less drama. I felt it was important to articulate where I stand on what I see as 3 key issues in this election.
1) Building on the Bancroft Property
I’M FOR IT!
This is a HUGE opportunity for our community. It’s our chance to set Haddonfield schools up to excel for the next decade. But to get it right, we need the entire community engaged.
If we don’t act, we’re eventually going to have classes taught in trailers and dozens of kids told they can’t participate in sports. And that’s the last thing we want.
I’d like everyone to feel invested in the direction we choose – and together we move forward as one Haddonfield.
2)Banning Books and Censoring Curriculum
I’M AGAINST IT!
I’m in favor of a diverse curriculum that presents a range of views and perspectives. I’m also in favor of treating our teachers like the professionals they are and trusting them to lead the vibrant discussions that have produced a district that is among the best in the nation.
My kids have benefitted from an amazing Haddonfield education and I’m fighting to keep the quality of our curriculum from being compromised for the next generation of kids.
3) The increase in HIB incidents
I’LL WORK TO PUT AN END TO IT!
HIB (Harassment/Intimidation/Bullying) has spiked dramatically since we’ve returned from remote learning. This needs to be the top priority of our administrators.
I will give it my full attention to ensure that Haddonfield schools are a model of inclusivity. We need to come together and build a school system which recognizes that all of our students are worthy of acceptance, worthy of empathy, and worthy of an outstanding education.
IMPORTANT NOTE: The conversation below is paraphrased. These are not exact quotes. You’ll see why that’s important soon. But I did have two volunteers right there watching, so I feel confident in saying the gist of it is accurate.
Holy moly! Things are getting nuts real fast.
Yesterday evening I went to stand outside Tatem Elementary for Back to School Night and hand out campaign flyers. I got there early and was with two of my volunteers. We were actually talking about my opponent, when I turned and there he was. Coming right down the sidewalk and right at me.
Hi, Mark! Did you bring your ice cream truck?
(That was a joke, but Mark wasn’t in the mood.)
I read what you said, and I don’t like it one bit! You’re putting words in my mouth and that’s totally not acceptable!
He was hot! Legit furious.
What did I say?
Your NuckolBall post! You said I called for book banning! I never said that!
That’s what it sounded like to me.
I never said those words! You’re putting words in my mouth, and I would never do that to you!
My volunteer jumped in.
Can I just ask you…what issue you have with the book you reference?
I’m not going to debate that with you right now!
Then they ended up going back and forth for a while. She was pretty calm, but he was still super angry. And to be fair, I don’t think was angry at her. I think my post really made him mad. He turned back to me.
Don’t put words in my mouth!
Don’t blow me off!
And then he stormed away.
Things cooled down after that. His family showed up and they handed out their flyers. My crew and I kept a respectful distance and handed out my stuff. I saw him having what looked like good conversation with voters. I got into some terrific conversations as well. Overall, handing out flyers is a lot more fun than I thought it would be.
So in the spirit of transparency, I recommend you watch the video and see if my interpretation of my opponent’s comments about a book he said was problematic is fair. I am against school boards that decide to ban books. I think his position is decidedly less clear despite his protestations.
My orignal post read:
“Shani found a video of my opponent telling the school board what books he’d like to ban and why (which I’m completely against)”
I think my interpretation is fair, which is why I’ve amended my post to read this way:
“Shani found a video of my opponent speaking to the board of education about a particular book. I Interpreted his message as providing the reasons he felt this book should be banned (which I’m completely against)”
OK. Pretty exciting stuff, right? Well, I promise the next blogs will be more boring and more substantiative. Also, I’m going to be offline for the next few days. My uncle is having some health issues, so I’m going to spend some time with him in Boston. (Actually, you can read about his situation here.)
Greetings, loyal NuckolBall readers!…I am running for the Board of Education in my hometown (Haddonfield, NJ). I’m running because I love the education that Haddonfield provides. My kids have both benefited greatly from it and I want to give back to my community.
My plan is to blog the thing. Which I’m excited about.
As of now, I’ve been at this for about 3 weeks — and here are my observations so far.
1) It’s remarkably complex
There are all kinds of crazy forms and registrations required when you run for office. Holy crap is it intimidating. You have to submit a D1, then nominate a treasurer (thanks, Cathy!), then get an EIN, then open a bank account, then resubmit your D1. Then it all has to work with PayPal and connect that to the bank account…it’s madness.
2) I need better clothes
Shani found a video of my opponent speaking to the board of education about a particular book. I interpreted his message as providing the reasons he felt this book should be banned (which I’m completely against). You can see him at around 1:30. Shani’s immediate reaction:
“He’s well dressed! We need to go shopping!”
So our next date night was the Cherry Hill Mall where I got myself some snappy new threads. Shani has officially forbidden me from wearing cargo shorts to public events.
3) I’m not good at asking for help
I’ve had some shockingly awkward conversations. I’m talking to friends I’ve known for 15 years and the calls are a mess.
“Um…hi, it’s Mike.”
“Yeah, what’s up?”
“I…uh, well…I’m running for the board…and was hoping you’d maybe, you know, have an event for me.”
“A what? I don’t get it. Why are you mumbling? What are you talking about?”
4) People are jumping in anyway
It’s been humbling. Literally every day people are reaching out to me and lending their support. Sometimes it’s people I don’t even know. They hear about my campaign from a friend and want to help out. It’s pretty incredible to experience.
5) It’s surprisingly fun (most of the time)
I love all the moving parts. It’s almost like playing one of those old computer games where you have to solve a puzzle to get the key to unlock the door to find the secret riddle. But MAN when you get the website up or the flyers arrive or someone agrees to hold an event…that part is super energizing.
6) My Mom’s legacy is still mighty
My Mom was the President of the Board of Education in the town I grew up in. (Here’s something I wrote about her; it’s still the most read post in NuckolBall history.) In all my campaign materials I talk about her being my inspiration — and boy has that had an impact. I’ve had dozens who remember her make donations in her honor. She died over 25 years ago and her legacy still lasts.
Pretty remarkable. And pretty motivating for me in this election.
So that’s the campaign so far. I’ll keep posting. And if you want to, sign up to follow this blog. If you want to help out on the campaign, reach out to me at ElectMikeNuckols@gmail.com or message me on my FB Page.
And if you’re new to NuckolBall, feel free to read other posts. You’ll get to know me better and read a few fun stories along the way.
OK…some helpful links/info and some photos so far from the campaign.
Deadline to register for mail-in ballot in Nov 1 (request yours).
I went camping with my buddies from high school in May. Here was the itinerary…
1) Gather at my buddy, Hal’s place.
2) Then drive up into a remote part of a state park to a secluded spot and set up camp.
And that’s it. We didn’t go anywhere and we didn’t do anything. We set up our gear and stayed there for 24 hours.
And it makes no sense.
And it’s about the best thing in the world.
I drove home with a glow, feeling lucky and content. I thought about all the great stuff planned over the next few months. And I officially declared it: The Summer of JoyTM.
So as we reach the final weekend of the summer, I now share with you, fair reader, scenes from this remarkable moment in time.
Shani and I met up with our friends from Cleveland, Avi and Lora Cover. We got an AirBNB and spent a few days having an absolute blast.
Mary Gautier in Concert
Baseball Road Trip
Jack and I hit the road to see my Dad, visit Cooperstown, see my friend Chief, and see Blue Jays vs Yankees.
Biking with Skinny
The Chicks in Concert
Canoeing with the Kids
I took Alex and two of his friends, plus Jack and two of his friends on a multi-day camping and canoe trip in the Adirondacks. It was fantastic. I also brought my man, Dave Beattie, as wingman extraordinaire. Big shout out to Man Mountain (Mike Flesher), who used to take us on this trip when we were kids.
The Big Trip
We took a 2 week trip to the Northwest. It included Seattle, Portland, 3 National Parks, kayaking, long days of driving, flat tires, bike rides, donuts, and a whole lot of really good time together.
Odds and Ends
A few assorted and random photos. No back story provided.
Wrapping it Up
We didn’t have plans for Labor Day weekend. Jack was back at Fordham. We were ready to shift to the new school year and say good bye to the summer quietly. But then at the last minute some friends invited us to their house in Maryland. And it ended up being a pretty terrific final fun activity for a summer that was indeed filled with Joy.
Just came back from a road trip with Jack. We went to Vestal to see my Dad, visited the Baseball Hall of Fame, Buffalo to see my friend the Chief, then two days in Toronto for Yankees vs Blue Jays. Spectacular.
That also meant 20+ hours in the car together. And Shani’s first question is always, “What did you talk about?” And the answer is a little complex given where Jack is with his life and his priorities. Let me explain…
Jack is deeply interested in…
Partying with his friends
Are we going to talk about that?
Jack is deeply interested in…
Are we going to talk about that?
Jack is deeply interested in…
Are we going to talk about that?
Yes. He revels in music; he wants to talk about it constantly. Every song he slyly pops the volume up 2 notches even in the middle of a conversation.
Does Shani want to hear about those conversations?
Jack is deeply interested in…
Are we going to talk about that?
GOD yes. We rave about the Yanks, discuss trade possibilities, reminisce about other parks we’ve visited. This is non-stop.
Does Shani want to hear about those conversations?
But all of this leaves me with not much to report back about the conversations we had. We didn’t have any deep talks about life, about who he is and how he feels about things. It’s just not what we talk about in this moment of our relationship.
However, the trip certainly was not without meaningful conversation.
I had a long conversation with my Dad about his life and his outlook as he enters his 80s. We talked about how lucky he was to have found Mary. We talked about his wishes as he ages. We also spent a solid 25 minutes talking about what game shows he likes to watch and what the rules of each game were. And we played a lot of cribbage.
We stayed with my best friend of 40+ years, The Chief. After we went out to dinner, he gave me a tour of his house and we ended up standing in his front yard for almost an hour catching up. He finally went and grabbed a couple lawn chairs and we spent another couple hours out there reminiscing about the summer camp we went to in junior high, division of labor between our wives, and God knows what else.
And for both those conversations, Jack was there either as part of the conversation or hanging out on the fringe and observing.
And wherever Jack and I are in our lives and our current list of conversational topics, we still spent 4 amazing days in each other’s presence. And we had an absolute blast. We got to stand beneath Jackie Robinson’s Hall of Fame plaque and sit in Nolan Ryan’s locker. We split a dozen wings and a beef on weck at Bar Bill in Buffalo. We went to two ballgames in Roger’s Center and saw an absolutely amazing comeback win that had the crowd absolutely bonkers with roaring for their team.
And of course, we drove our asses off. We’ve become staggeringly good travel partners. We both pack ludicrously light. We can sleep just about anywhere. And our combined capacity of driving is mindboggling. In a single day we can start with breakfast at my Dad’s house, drive to Cooperstown (1.5 hours), revel in the Baseball Hall of Fame, have lunch on Otsego Lake with my dad and Mary, drive to Buffalo (4 hours), dinner out with Chief and his family, then spend the evening at Chief’s place out on the lawn. And the whole thing somehow feels leisurely – no rush at all. I find time to read and write in my journal. Jack watches a movie on his computer. We get plenty of sleep. It’s almost other-worldly, like we step into some kind of time tube when we travel. Road Wizards.
I also need to call out the true MVP of the trip: Grandma Mary. On top of her general wonderfulness feeding us, hosting us, and being lots of fun to spend time with. On top of marrying my dad (which is a remarkable blessing). As we were about to leave Buffalo and head for Toronto, I realized I’d left my work bag and passports in Vestal. Mary hopped in the car and met us at a Burger Kind halfway, which was the difference between making and missing our first ballgame. So generous and wonderful.
For the record, this put us at 18 out of 30 ballparks. We’ll be at 20 by end of year.
This past week I flew to Chicago to meet with some new clients in person. It had been 2 years, and it was amazing. Plus I got to meet my team in person for the first time. We had dinners out, drinks, conversations in taxi cabs.
Then later in the week, my boss from Brazil was finally able to come to the US. So me and the rest of my creative director team met him for a day of working and a happy hour.
It was all pretty exciting, but there was an unexpected part to all of it. It was a series of “get to know you” conversations, which meant I ended up telling the dumb Alex tumor story a bunch of times.
I’ve got the narrative down pretty well at this point and the tone is just right. I keep it quick. I can switch out certain parts if I want more sympathy or if I want to keep things light. But the tough part is when I have to stick the landing. That’s tricky. The conversation is over; we’ve exhausted the subject. But you have to conclude and move on. And really, the options are:
“He’s on a lower dose of chemo and seems to be managing it much better, so things are looking up.”
“He’s such a resilient kid, it’s amazing to watch. Kids are remarkable.”
“There’s definitely good news, though. His tumor shrunk 49% and hopefully in 6 months he’s done with the meds.”
But the reality is different. It doesn’t have a neat wrap up. Not yet, I guess.
“So right now I’m in a state of bitterness with a hint of despair. I’ve been finding myself wondering if God really exists and then considering that if he does exist, should I be mad at him?”
“It’s like a giant soap bubble is distorting our whole house, but we kinda go on about our day with a bit of an emotional limp.”
I’ve moved beyond the ‘it could be worse’ thing and now I’m just kinda low-simmer pissed off all the time.”
But those don’t make good conversation enders — especially for clients. They leave people unsettled and wondering if you’re up for doing your job (which I totally am). You’re a source of distraction and discomfort, not this interesting, smart creative director that is leading the team with a remarkable depth of emotion you’re sure he’ll bring to the work.
Alex is doing pretty well. Genuinely. He’s exercising and putting on weight. His grades are insane. He has great fun with his friends. He’s probably running for student council soon.
The whole baseline for life has shifted down quite a bit, but…well…no. I’ve got no wrap up.
I’ve worked as a writer in healthcare marketing for 25 years. I’ve written hundred of brochures, websites, and sales tools about dozens of different drugs. And when it comes to side effects, you really aren’t allowed to say much. The FDA is very particular about overpromising tolerability. So most of the time you just say that the drug is “generally well tolerated.” In fact, I’ve typed those words literally thousands of times.
But now I’m watching Alex live those words and it’s altogether different.
He’s now on a drug called Pazopanib (Votrient). Here is his tolerability report.
His hair has turned white, which is pretty bad ass.
There was immediate weight loss. He lost all desire (and joy) for food. He dropped about 10 pounds. So we saw a nutritionist and the doctor put him on medical marijuana (pill form). We stuffed our fridge with ice cream and Ensure shakes. And he started to gain some of it back.
Diarrhea. Not too bad, but pretty much the everyday norm. It’s “generally tolerable”, but it has kept him home from school a few days because he’s made it clear he’d rather die than use the high school bathroom.
Then, around 10 weeks in, the pain started. Hip pain so he walks like a marionette and has to use his arms to get himself in and out of the car. Wrist pain that affects his ability to write and take tests. Even occasional jaw pain to the point that he had to have smoothies for dinner because it hurt too much to chew. Hiking is day to day. Backpacking and diving are out of the question.
Because of all of this, they have reduced his dose. The pain is still there, but much reduced. His shit is suddenly solid again which came with 3 days of brutal stomach pain.
Part of what’s so hard is that it keeps changing. It’s inconsistent. You can’t get into a routine where you know what you’re dealing with and how to handle it. He’ll get three days in a row when he’s pain-free and he thinks he’s figured out the right routine of stretching and then BLAM he’s floored for 2 days straight. If I’m being honest, it’s wearing all of us down.
But there have been some good things too.
In January, the MRI showed that the tumor in his leg had shrunk 49%. That was a night for champagne and sparkling cider.
We finally got the results from his genetic testing (which had been hanging over our heads for months). Desmoid Tumors sometimes come with a genetic mutation called FAP. If you have FAP, you are 100% certain to get colon cancer before you turn 30.
So in January they called us and said: “We have the results. We’d like all of you to come in as soon as possible. You’ll meet with your oncologist and then a team of genetic counselors.”
That was a grim drive to CHOP.
But when we got there, they told us Alex did NOT have the FAP mutation. He had a different one that made him slightly more likely to have colon cancer and he should start testing at 40 (instead of 50). No big deal at all. They had called us in because they didn’t want us to read the results ourselves and misinterpret them.
Then the doctors left the room and I went over to Alex, buried my head in his lap, and absolutely sobbed for a solid minute.
And we broke out champagne and sparkling cider again.
It’s been a haul. I thought life would get easier with only one kid in the house, but things have taken a pretty crazy shift.
It’s Sunday as I write this, and Shani and I are home alone. Jack wrote us Thursday and told us he was coming home from Fordham for the long weekend. He announced that he and Alex would be taking the car on Sunday. So now my boys are off somewhere blasting through Pennsylvania, listening to music, talking about God knows what, getting ice cream on my credit card.
That actually might be about the most joyful thing I can imagine.
On top of that, Shani’s parents are coming over for dinner tonight. Covid has derailed things, but tonight the six of us are finally going to have a meal together. I have a fire going in the fireplace. The dog is asleep against my leg. I’m in love with and deeply appreciative of my wife, who is reading a book by the fire.
Part 1: The Grand Tetons (this story has 35 photos)
This past August, like most years, we hit the road for an epic family trip. We hiked Arches National Park in Utah, drove the Million Dollar Highway in Colorado, stayed in a bizarro AirBnb in Iowa, saw friends and family – just amazing. A major part of the trip was for Alex and me to spend 3 days packing the famed Teton Crest Trail in Grand Tetons National Park. Alex and I have a list of backpacking trips we plan to do over our lifetime, and this was at the absolute top.
It did not disappoint. But I want to talk about what he and I talked about.
So, there are camping trips and then there are backpacking trips. On camping trips, you pack in a few miles, but the real event is about the camping. You sit around the fire. You have coffee in the morning. They’re relaxed. And when Alex and I do camping trips, we get lots of time to chatter away about all kinds of things – friends, Marvel movies, life, school, you name it.
But a backpacking trip is more about the journey itself. And we usually spend most of our time talking about logistics: where to get water, bear canister management, organizing the campsite. This trip was particularly heavy on the logistics– lots of details to discuss and manage. So that was a lot of what we talked about.
Then the rest of the conversation space got filled up by the landscape itself. I mean, every 10 minutes we’d come to a field or an overlook or a bluff and just be staggered by how gorgeous it was. Which meant we spent tons of time just talking about how unique and stunning the place was and pointing out things to each other.
Tetons Day 1
Tetons Day 2
Tetons Day 3
However, there was also what wasn’t spoken.
As you probably know, Alex has a tumor in his leg (here’s the full story if you want it). At first we thought it was cancer, but it turned out to be a non-cancerous tumor called a Desmoid tumor. They figured that out in April and told us to do nothing unless it was growing. No action needed until we do another scan in October.
But in June Alex pointed out that it was quite obviously growing.
So back to the doctors, another scan. Yes, not only had it grown but there was a second tumor in his butt. Action was warranted. Alex underwent a procedure called cryoablation, where they put needles into the his leg and hit the tumor with super cold to freeze out whole chunks of it. In fact, here he is coming out of the anesthesia.
They got 50% of the butt tumor and 30% of the leg tumor. They felt great about the results. Next step was drugs (chemo) to knock it down further – but we could wait until after our trip for that.
And that is what wasn’t said on the packing trip through the Tetons. Alex felt it though. It was weighing on him. I had no idea at the time, but in his head he was contemplating the possibility that this was his last packing trip. I think it gave those views an extra layer of emotion – the boy was considering that he might never get to do something like this again. In some ways maybe he was saying goodbye to backpacking.
In fact, he told me later it was why he went swimming in Sunset Lake. It might have been his last chance to swim in a mountain lake like this, so he crept into that ice-cold water with that in mind.
Part 2: Chemo (this story has 1 photo)
We got home and the next week Alex started a drug called Nexavar. We were warned that most common side effect was a rash on the feet and hands. In fact, they recommended Alex lather up with Eucerin before bed each night (which he did and hated).
For the first few days everything seemed fine. But that Saturday, Shani and I were going to the store when she got a frantic phone call from Alex. His legs were itching wildly. We flipped a U-turn and rushed home. But by the time we got there, he was good. Jack had suggested a cold shower and that had done the trick.
The next day, nothing. Seemed fine. But just to be safe, I stayed home with Alex as Shani dropped Jack off at Fordham alone (which broke my heart a little).
But still no issues – all good.
Labor Day Weekend arrived, and we were going to drive to New York to spend the weekend at my Dad’s house – the first time since COVID. We headed out on Friday afternoon, and as we got in the car, Alex pointed out a small red hive on each of his elbows. No big deal. No itch. We called the doctor – they said keep an eye on it, monitor for fever, and it should be fine. So we kept going. Traffic was heavy so it took us an hour to get through Philly, which is when we noticed that both hives had grown. They’d started as quarter-sized, but now both of them had branched out.
Shani – blessed, brilliant, wonderful Shani – insisted we turn around. Just to be safe. I called my dad to share the bad news, spun the car around, and did the hour of traffic all over again.
We called the doctor again and were told to monitor for fever. 100.7 meant go to the ER. Which happened at about 11:00 that night. We were in the ER until 4:30 AM. No infection, labs were good, and the fever came down. We were in the clear.
But not really.
The rest of Labor Day Weekend was a slow creep. The hives spread. They showed up on his hands and feet. They crept up his wrists. The fever came and went, but stayed low. He felt crummy every evening and went to bed early. The bottoms of his feet started to hurt to the point where just walking down the stairs was painful. He and I played a ton of Lego Marvel Avengers on the Xbox and we kept in touch with the doctor. The instructions were always the same – fever of 100.7 meant ER.
Monday morning he woke up and the rash had spread. Chest, back, legs. And that evening he got a fever that crossed the threshold. We drove him to CHOP in Philly. They admitted him.
OK – ready for the photo?
That’s his back. Shit got real. Fast. That night the rash covered him entirely.
And then the itching came.
OK – deep breath. Here we go.
You’ve experienced itching, right? Poison Ivy, bug bite, athlete’s foot? Then you know how awful it is.
The worst itching you’ve ever experienced wouldn’t even touch this.
It would flare up and take hold of his entire body. His hands, feet, legs, chest. It looked like he was being electrocuted; he would flail around the hospital bed. He would grit his teeth and scream. He would get up and stomp and swirl around the room slapping at his skin.
Nothing they gave him provided any relief. Prescription-strength Benadryl, hydrocortisone – it did nothing. IVs, creams, lotions, ice packs.
I remember as one flare-up came on, he started crying out: “Dad! Dad! Dad! Dad!” A child begging for his daddy to help him. In fact, I can still kind of hear that in my head. And I stood by helpless to do anything.
In the thick of another bad flare up he stood up and screamed: “It’s not getting any better!” and then he collapsed onto his bed sobbing. I staggered over and buried my face into his back, bawling myself. And I’d like to say it was in support or solidarity, but it wasn’t. It was selfish; watching him was too much to take and I fell apart.
It went on like that for three days. He probably slept a total of 6 hours during that span.
Some things did help, though.
First off, they had an IV opioid that gave him short periods of relief – but they were pretty sparing with that.
We found that bad TV could be a distraction. He and I threw ourselves into Bachelor in Paradise and got so into it we were yelling at the screen and telling the nurses all about the plot twists. The following night, Shani and Alex watched 7 consecutive episodes of Law and Order SVU.
But the biggest difference-maker was Alex himself.
When he was two years old, he couldn’t pronounce the word “cookie.” He would say “coo-tee.” Shani tells the story of listening to Alex in the back of the car trying over and over to say the word right. “Coo-tee! Coo-ka-tee! Coo-TEE! Cook! Cook! Cook-EE!”
I have memories of watching Alex literally will himself to learn how to read. His little eyes were burning into the book as he mouthed syllables. Forcing himself to figure it out.
Alex is driven and deliberate and smart as hell. I watched him deliberately set out to master the itching. He would feel it coming on and force himself to stay in control. It was amazing to watch. He still lost it sometimes, but sometimes he would fight through it.
The itching finally started to recede after three days. Alex slept for 12 hours straight. Then they sent him home the next day.
So…here we are a few weeks later. He’s back at school. In fact, he just blew up the grade curve on his calc test and got 100. The itching and rash are long past. He and I hiked Hawk Mountain last weekend (5.1 miles, 1096 feet). He started a different medicine about a week ago. A few side effects, but nothing bad – although we’re kind of on pins and needles. All three of us are still a bit shaken.
I’ll close by mentioning one last thing that’s helped Alex: he has wonderful friends who love him. Our last evening in the hospital was his 16th birthday. We snuck in two of his best friends, who came in with Swedish fish and potato chips and gummi worms and a cake. Shani and I stepped out to let them hang out, but I already could see Alex sitting up taller and with more color in his skin. I heard them all laughing as we closed the door.
Here’s our list of packing trips.
Oh, and here’s a few photos from the rest of our big trip.