Shawn Thompson is calling from Houston, because war is hell and pediatric cancer is worse.
“It’s usually the third or fourth week when they can become very, very down,” the former Michigan tight end says of middle daughter Emma, a flower cut from pure steel. “She did an hour or two of treatment and just gets in a little bit of a crummy mood. A lot of that is because she’s getting put to sleep every day.
“An hour or two after, she bounces back quick. Thank God we’ve got her sister here. She’s been a huge help.”
You’d be cranky, too, if you were 5 years old and spent the last two months getting knocked out by doctors and then having anywhere from 70 million to 250 million electron volts of proton radiation shot through your skull while you nap.
The Thompsons — Shawn, wife Kelly, Emma, Emma’s older sister Maci and baby sister Annie — moved from Brighton, Mich., to Texas, en masse, in March so Emma could receive 33 treatments of proton therapy treatment at M.D. Anderson Cancer Center in Houston. The process runs 90-to-120 minutes per session, give or take, once she’s out cold.
“It wasn’t good, the cells were growing pretty quickly,” Thompson says matter-of-factly. “When it’s your kid and it’s a young daughter, there’s really no question as far as figuring out a way to get it done.”
You do what you have to, and everyone pulls like mad on the same rope. When a scan in February revealed that an ependymoma tumor in Emma’s brain — the one she’d licked as a toddler — had returned, experts suggested the smart money be put on proton therapy.
Of course, the smart money called for a lot of money, too; the Anderson Center in Houston is one of only 13 proton specialists in the country, and widely considered to be among the best. So the Thompsons cowboyed up, rented a 3-bedroom apartment in Houston and tried to make a good fist of it.
“The kids should be doing kid things, being in school, playing with friends,” Thompson says. “We really don’t have anyone around here, as far as knowing anyone.
“We’re anxious to get back. Get back to some normalcy.”
The Thompsons have another reason to be back in Michigan: The ChadTough Foundation’s 2nd Annual Champions For Change Gala in Ann Arbor on Saturday night, a fundraiser for ChadTough and Michigan Medicine’s Pediatric Brain Tumor Research Initiative.
There, they’ll roast Lloyd Carr, the former Michigan football coach whose late grandson is the Chad in ChadTough, the wind beneath their wings, the angel who fought Diffuse Intrinsic Pontine Glioma — or DIPG — until his death in November 2015.
“The best way to explain it is if you’re at a bar with your buddies,” Jeff Del Verne, the former Michigan placekicker and Thompson’s old teammate, says of DIPG. “And NASCAR flips on and fills the bar [with racing fans].
“And before you know it, you and your buddies are pushed to the end of the bar. A rougher crowd comes in and pushes you to the end of the bar.”
The good cells get pushed around by the bad ones — squeezed out of their space, basically. Del Verne and wife Shannon have become experts on the subject over the last six months after son Colt — who, like Emma, already was a cancer survivor, having beaten medulloblastoma a few years back — was diagnosed in November with DIPG, a fatal form of pediatric brain cancer.
“I think we’ve become a lot more engaged in it,” Jeff says. “We’re very intrigued by the science end of it and as they’re telling us, we were able to look into it further, so it’s really cool science.”
More cool: Thanks to Chad Carr and parents Tammi and Jason, two-fifths of ChadTough’s board of directors, doctors were able to quickly recognize DIPG in Colt’s 10-year-old system and suggest a remedy in the drug Afinitor. A treatment, unlike chemotherapy, that can be administered at home, and with few side effects save for nausea.
“You kind of push through and say, ‘I want to just keep them alive. I will do anything, I will pay any amount of money to fight this,’ ” says Jeff’s wife, Shannon. “You’re gearing up for war.
“We had seen the long-term damage and part of the reason we’re trying to do [this], with all the research, is that there needs to be so much more. The first type of cancer Colt had, the survival rate was pretty high.”
The devil was in the details, as intense radiation treatment for medulloblastoma on a patient so young began to affect Colt’s cognitive development.
“So they can do better,” Shannon says. “Even with the ones they call ‘winning the fight,’ there are really good outcomes, [but] it’s still not leaving kids as they were before. And DIPG, my gosh, there’s still a lot that needs to be done.”
So many miles. So many families. A doctor told the Del Vernes that the rehabilitation process — the treatments, the worries, the cost, the frustrations, the false hopes — can strain, and in some cases strangle, a marriage. Jeff, Shannon and their four kids keep chugging anyway. One heartbeat. One team.
“He can just definitely tell the times I’m falling apart, when he knows I’m going to lean on him, and you’ve just got to keep going,” Shannon says. “There are definitely times, like when we got the news a second time back in November … and they sit down and hold our hands and they have tears in their eyes when they tell you the news. Both of us walked out of there like, ‘What just happened?’
“That was hard on both of us, but I think Jeff has been incredible in that he’s got a huge sense of, ‘I’ve got to take care of my family,’ and at times when you want to do nothing but stay at home and play with Colt all day long, but you also can’t let your family fall apart.”
At first, they thought it was meningitis. Back in 2012, Colt was vomiting for a couple weeks, off and on. A pediatrician suggested it might be intense migraines. One morning, he found he couldn’t straighten his neck.
“When they came in, they’re starting to talk medical terms and we’re like, ‘You’re speaking a foreign language, what are you trying to tell me?” Shannon recalls.
The doctors pointed to the screen.
“There was a tumor the size of an egg in the middle of his head,” Shannon continues. “It was never a thought that would have crossed into my mind at that time. That was probably the worst.”
The irony, like the hope, never quite fades from view. Jeff was having dinner with Lloyd Carr in November 2011 as part of a fundraiser for C.S. Mott Children’s Hospital at the University of Michigan, a place near and dear to the old coach’s heart.
“I was saying in the back of my head, ‘Oh, that’s going to be great for those families, to have their own rooms, a 45-inch television, a bathroom and all the space they didn’t have prior to that,’ ” said Del Verne, who drained 4 of 6 field-goal attempts and accounted for 36 points with Michigan’s 2000 co-Big Ten champions. “At that time, I had no idea that I would be there — and be there regularly. So it’s been an interesting journey.”
Initially, they were there for 10 days in a row. Colt then received radiation treatment during four-day stretches every month — arriving on a Wednesday, released on Sunday. They did that for six months straight. The checkups were gradually spaced out a bit more after that, and Colt was declared cancer free for more than five years.
“It’s been an overwhelming experience from that standpoint,” Jeff says. “We really thought the cancer portion of our life was behind us. And when you hear that [news], it was twofold. One, that the cancer was back. And second, that they thought it was DIPG. We were familiar with the Carrs and following it with them, how devastating that was. So for us, it was almost like a death sentence. And then, like I said, the beautiful thing is that we were able to find some hope and at least get together a very aggressive treatment plan.”
Former teammates, mentors and friends reached out to extend their support. When Lloyd Carr got wind of Colt’s condition, “we had an 8-minute conversation and I think we cried for six or seven minutes straight,” Jeff says.
“It was odd to see him in that way and I’m sure it was odd for him to see me in that light. He would come to the hospital when we were participating in chemo. We stay in touch. He’s a great person. I’d like to think I was one of his favorite placekickers. We have a really strong relationship. He’s been very involved in kind of keeping tabs on Colt.”
The Thompsons and Del Vernes have been keeping tabs on one another, too, old teammates bound by maize and blue, trauma and triumph.
Jeff and Shannon would walk Shawn and Kelli through the pros and cons of getting treatment in Ann Arbor versus somewhere else, as well as queries draped along a similar garden path.
“I think we were kind of able to just help them in making an informed decision in the second go-round [with cancer],” Jeff says. “Shawn would message me and tell me they were thinking about us. They sent us a huge care package, which really meant a lot.
“It’s not something that everyone experiences. It’s an elite fraternity that no one wants to be a part of. That’s probably the best way to say it.
“As a parent, it’s heartbreaking, because you kind of get a false sense of security. You get into your normal routine and you get that dropped on you. It’s just really devastating. Almost to the point where you just, you can’t believe that it’s actually back, that it’s happening. I know when Emma was diagnosed here in the last 3-4 months, my heart went out to them.”
After reading one case study, it shattered into a million tiny little pieces. Jeff was steered to the tale of a girl who’d been declared cancer-free at 10, her teen years in remission. At 21, she experienced some weakness in her right side, went to the doctor, and was dead within six months.
“And it was the DIPG as a secondary tumor, similar to Colt’s,” Jeff says. “It’s a soul-wrenching story. It stuck with me. Reading it, for lack of a better word, [expletive] me off. Certainly, it’s a heartless disease, and every time it comes back, it’s devastating.”
The cruelest part is that it lurks, defiantly, pouncing from the margins to swallow the narrative whole. A newborn doesn’t grasp why Dad and Mom, the strongest people she knows, are choking back tears, as the Thompsons did when the doctors said Emma’s tumor had returned.
A 5-year-old does.
“She knew that we were scared; she didn’t understand why,” says Thompson, who lettered at Michigan from 1998 to 2001.
“With this go-round, we can’t be too emotional, and talking constantly. We need to figure out where the next steps are. That was the biggest thing, and we just said [when we found out], with all of them, is we’ve just got to be positive and go along with life as normal as possible.”
What are the odds of that?
‘If you hold on to hope and kind of get ready to fight, that helps a lot to get you through the hard stuff.’
— Shannon Del Verne, wife of former Michigan kicker Jeff Del Verne
“It’s rare in and of itself just to have a child with pediatric brain cancer, let alone two people in your circle, within your sphere, your world,” Shannon says.
“For a mom, it’s really nice to have people that you already feel that are a part of your world and a part of your family, especially the Michigan football family, that you can talk to and have similar experiences.”
“Have hope,” Shannon says. “Hold on to even a sliver of hope that, even if the odds are slim, it could be your kid that makes it. That survives.
“And the other thing would be to get ready for war. Do whatever you have to do, and do it. Don’t think about how hard it is or how horrible it is … if you hold on to hope and kind of get ready to fight, that helps a lot to get you through the hard stuff.”
Proton treatment No. 33 for Emma was slated for earlier this week, the end of a chapter. And, if the fates allow, the beginning of a new one.
“You just don’t know,” Thompson shrugs. “You could be cancer-free for 10 years and it could just pop back 10 years later.
“But the hope with all this is just, with what the ChadTough Foundation is doing, is that, gosh, we can delay these things. And hope that, one day, they can figure this stuff out.”
For more information on the Champions For Change Gala or the ChadTough Foundation, visit www.chadtough.org.