Photo by Heidi McClelland of  Heidi McClelland Photography

By Kristen Domingue 

Our interview with Tammi Carr chronicles how she moved from loss to leading a life of impact through her work raising awareness and funding for DIPG (diffuse intrinsic pontine glioma).

If your children are experiencing grief over the loss of someone close to them, we encourage you to get support. Ele’s Place (https://www.elesplace.org/) is a wonderful resource for grieving families. If a child you know is battling pediatric brain cancer, the ChadTough Foundation, started by interviewee Tammi Carr and her husband Jason, is a resource that can support you and your family with next steps.

Trigger warning: if you’ve recently lost a child or family member, or you are in the process of managing a terminal illness, Tammi’s inspirational story may trigger emotional responses that may be overwhelming.

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Our son Chad was diagnosed with DIPG, a rare form of brain cancer that grows in the middle of the brainstem, on Sep 23rd, three days before his fourth birthday. We had a name for what happened, but no clue what we were in for next.

He fell and broke his nose. They did what they could to patch him up at the hospital and sent us home.

But that night, I woke up. Even though it was peaceful, a new awareness was dawning on me: he fell on the way out of the emergency room. He fell at gymnastics. This isn’t like our son. Something inside me said we needed to take him back to the hospital. And then I fell back asleep.

The next day, my husband and I watched Chad very carefully, and we both could tell that something wasn’t right. So we took him back to the hospital, and I remember we had to convince the doctors that something was wrong.

They thought this was a concussion. Even though they discouraged us from waiting around for an MRI (we had to wait until it had been hours after Chad’s last meal), we pressed them to let us do the MRI anyway. I remember sitting there and thinking, “Wow, these parents that have to be here all the time, I can’t imagine what they’re going through.”

So we waited…and when the second hour went by and we still had no word…we started to worry. Hour three came and went, and we started to wonder if this might be more than a concussion.

Eventually, the anesthesiologist came to get us and we could see she had been crying. She said, “We found something and we need you to come with us.” He was sleeping in the PICU (pediatric intensive care unit) at that point, and we sat with him while we waited for someone to come and talk to us.

I worked with Dr. Valerie Opipari, who was the Chair of the Department of Pediatrics at Mott Children’s Hospital, in fundraising for over 10 years, so I called her up. She knew we were there and she asked how it was going. I told her that they found something, but we still didn’t know what was going on; she offered to check in and then call me back. She called me back shortly thereafter, and she said that she and her husband were coming in to meet us. I said to my husband, “It’s cancer, I know it.”

The next bit is a blur. The resident working with us took us over to a computer, and showed us Chad’s brain. He said the words “cancer” and “brain tumor,” and pointed at the picture. I didn’t fully understand what I was looking at. They showed us his brainstem, and it still didn’t register what all of this meant.

In our minds, the thinking was, “Ok, this is going to be a long road, but we can do this. We’ll get the cancer out. We’ll get the support we need. He’ll recover.” I got the adrenaline rush that comes with rallying to overcome a challenge.

We asked about the treatment plan, the course of action they were going to take, and what we needed to do; but the resident we spoke with kept fiddling around with his words, explaining around the prognosis but never flat-out telling us what this meant.

Finally, I looked at him and said, “Are you telling me that he’s going to die?” He responded, “The average survival rate is nine to twelve months.”

I remember I hit the floor, my legs fell out from under me and I just laid there. Valerie arrived by that point, and she helped me off the floor and talked me through how I was going to be okay, how we were going to get through this.

I just couldn’t believe it. I was there in the hospital that I’d spent years of my life fundraising to build, praying to God that I’d never be there for the reason I was in there that day, and the thing I feared was happening to me. To my child. To my family.

That night after they admitted us, I went through a lot of emotions. Anger, despondency, grief, shock. Specifically anger because they kept waking Chad up to test him after they’d told us there was nothing that could be done to save my son’s life. The doctors explained that they didn’t say there’s “nothing” they could do to help my son, but that DIPG is very serious and things can happen quickly if we don’t check in neurologically every so often.

That morning when I woke up, I had a different outlook. Something in me got triggered while I slept and I said to my husband, “We have to make this big. We need to get everyone we can to pray for him, we need to shed light on this. He needs all the prayers he can get. We need to get the word out about what this is.”

Even though my husband Jason grew up the son of University of Michigan’s football head coach, Lloyd Carr, and has lived a public life, he’s a very private person. I’m more open and he knew this about me. So he just said, “Okay, do what you gotta do.”

How we survived

My husband said to me once, “You know, in a strange way we were the perfect family for this to happen to.” I had the background in medical fundraising, we knew all the doctors, and because of who Chad’s grandfather was, people paid attention. We were really blessed in having the resources to figure out what to do, because you’re kind of on your own with this disease.

I wish we never had to do any of this, but my husband was right. I know there was a reason, and Chad’s life is changing the world. I think about him every day. Not one day goes by without him in my thoughts. And even though people have moved on, I can see that ChadTough (the foundation that came through this journey) keeps growing. There’s so much momentum now, I know he won’t be forgotten.

I’m sad every day. I live, I smile and find joy, slowly. It’s taken me a long time. This was the first Christmas I actually wanted to participate at all. I’d try and do what I could do before for the other boys, but the holidays are so hard. For us, starting in September, there are all these anniversary dates: the date he was diagnosed, his birthday, then Thanksgiving is the weekend he died, and you go to Christmas which was horrible because I never wanted to have Christmas again after we lost him.

I’ll anticipate things around those dates being hard, and then they’re not. But then out of the blue, I’m brought to my knees — by a song, a thought, a word, nothing. When that happens, I’m done for the rest of that day. The bad days come less often now. I feel it every day, but the bring-me-to-my-knees days? They come less often now.

Our family dynamic is forever changed. It’s sometimes difficult for our other sons, CJ and Tommy. At a young age, they became “ChadTough’s brother.” And we want to make sure they don’t ever resent the experience, their brother, the foundation. They’re kids, and we’re conscious they need to have their own experiences and their own childhoods too. As they get older and understand the experience more, we want them to feel proud as opposed to resentful, so we’re careful about that with them because they went through a lot.

Before Chad got sick, I was a busy mom, not paying as much attention to the “little things.” I’m different now. We have two beautiful children we’re focused on and we don’t miss their events. Anytime they have something at school or outside of school, we’re there. It’s not worth missing.

We are grateful because a lot of kids with DIPG are trapped in their bodies for months. They’re cognizant of everything, but they can’t speak or move or communicate. We prayed that Chad would not have that happen and he didn’t. He went quickly, and we’re grateful for that.

From losing Chad to ChadTough

Initially, there was no thought of a foundation or anything like it. I just thought, “We’re going to get people praying for our son.” I felt that’s what needed to happen.

I started a Facebook page that said, “Pray for Chad.” A friend of ours came up with a graphic with his picture and the name “ChadTough.” When I think about how we got from there to where the foundation is now, so much of it was a blur.

There’s nothing worse than this disease. You shouldn’t be told that there’s really nothing that can be done. And what always hits me is that Neil Armstrong’s daughter died of DIPG almost 60 years ago, yet the treatment protocols are basically the same. Not much has changed since then. It blows me away. I know technology has changed. If someone had brought awareness to this sooner, I can only imagine that there would have been more research done, more tests done, and a greater chance that by the time Chad was diagnosed, more could have been done to help him.

Leukemia initially had a 90% mortality rate within 9-12 months as well. But now, almost 90% survive. Chemotherapy came out of research about childhood leukemia. At that time, it was a rare pediatric disease where they’d send kids home and say there wasn’t much they could do. When I think about how research about this childhood disease has changed the landscape and conversation around the prognosis and outcomes, not just for leukemia but also for all kinds of cancer, I can see what’s possible by raising awareness and money for DIPG, a so-called “rare disease.”

The Chad Carr Pediatric Brain Tumor Center at the University of Michigan is a collaboration that we are very proud of. We’re a University of Michigan family, and it is important to us that Michigan is a leader in battling this disease. When Chad was diagnosed, however, they weren’t. When we went through it, we brought the trials to the team and asked, “What about this?” on everything. My husband would spend hours up all night researching.

Now they are, and they’re one of the best places to go in the country for DIPG help. It happened in four years because these brilliant minds have dedicated themselves. Now children come from all over and there are over 25 researchers working on DIPG research. Before, they saw one to two cases per year and had two people working on this disease. I feel like these families are taken care of now because the University of Michigan is more knowledgeable.

In the process we’ve had to confront the question, “Why support research into a disease that’s so rare when it impacts so few?” Our answer is that if you think of the years of lives lost, the number is huge. Also DIPG is the most difficult brain tumor, and brain tumors kill the most kids after accidents. People don’t know that. If you figure out the hardest tumor, it can be possible to help the rest. Just like with the development of chemotherapy for leukemia. Of all the children who die annually from cancer, 15% of them die from DIPG. When you look at it like that, it sure doesn’t seem that rare to me.

The Facebook page was how things started to grow. I was so transparent on it. For me, it was about sharing what we were going through so people knew why we needed their prayers. It wasn’t about raising money at that point.

It was a distraction at some points, because I never really left Chad’s side the whole time. I’d have moments where I’d get on my phone, share what was going on, take pictures of him and document what we were going through. For me, it helped to be able to do that, to vent and to document it all and to read the responses of people who cared so deeply for our family. It meant we weren’t all alone in this.

Community is everything

I want people to be proud of what this community has done because it has truly helped to build this foundation. We wouldn’t be where we are without this community.

Volunteers are also a huge part of why we are able to do what we do. We’re small, but we do big things because of the commitment of our volunteers and community. Our RunTough crew is incredible. September 28th marks the fifth annual RunTough for ChadTough. We celebrate it with cupcakes (as that’s the closest weekend to his birthday). We’re expecting about 1,500 local runners and a host of virtual runners in every state across the country. The shirts we send to virtual runners play a huge role in how the foundation continues to grow, because the shirts invite a conversation that tells the story. It’s a great community event and it raises over $250,000 each year.

Our annual Champions for Change Gala takes hundreds of volunteers and a very committed staff to pull off. We’d never be where we are without those people volunteering their time. It takes a lot of money to do these things, and if we have more volunteers, then more of the money goes to research. That’s my bottom line. Last year, we were able to raise $1.2M at the gala.

Outside of our official events, over $1.5 million dollars have been raised through third-party events; this includes everything from people hosting a golf outing to a lemonade stand in their front yard. People are doing their part to help Chad to change the world. This is incredible!

There are so many businesses that also contribute philanthropically, including our ChadTough Partners, who are involved in every event we do and also support our administrative expenses.  Alro Steel, Michigan Fuels, The Jones Family Foundation, The M Den, and Red Effect Infrared Fitness are true partners in our mission to cure this disease.

One of our huge wins in this area has also been the way Comcast Spotlight has donated public service announcement slots for the ChadTough commercials seen throughout the state. Latcha and Associates has been incredible in donating their services to produce the spots, and Comcast airs them without charging us a dime. The awareness that spreads through these donations is amazing!

It’s been four years, and we’ve raised $7.5M for DIPG research. In the fundraising world, this is a lot of money, and especially for DIPG which is so underfunded.

It’s a lot of work, but it’s so worth it. We have a great time while we’re doing it. We know what we’re doing is right because of how things have come together without a lot of arm-twisting and convincing. People have simply said, “We want to help you.” That’s how we knew we’re doing God’s work, and what we are supposed to be doing with our lives.

There are days where it’s just really hard. But the way we look at it is: the time we spend on the foundation is Chad’s legacy, and it’s time we would have spent with him if he were here. I’d give anything to have him back. I know that’s not possible, so I guess this is the next best thing. It’s helped me to not crawl into a hole.

The community support has been amazing. We couldn’t have done this without them. I don’t know how people do it without that. The Ann Arbor community can be proud of this foundation.

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If you’d like to get involved with ChadTough, you can find ways to contribute and donate on their website, https://www.chadtough.org/. The annual RunTough for ChadTough race includes 200 volunteers, and running locally is a great way to spread the word.

One of the most inspiring components of our interview with Tammi Carr is the way she so clearly felt all of the loss and yet never lost her faith. She allowed what was devastating to her to become life-giving to so many others by sharing her experience. Through her sharing, she allowed a community to come together and make a difference where one was needed most.

BIO: 

Kristen M. Domingue is a copywriter and content marketing consultant in the New York City area. When she’s not delivering on client projects, you can find her cooking up something gluten-free or in an internet rabbit hole on entrepreneurship or astrology.