Mom Shares What It's Like to Be Told Your Child Has an Inoperable Brain Tumor

chad carrIt should have been a routine visit to the ER. Tammi and Jason Carr's 4-year-old son Chad had fallen and they thought he had broken his nose. They rushed him to the hospital but were told he didn't need an X-ray. "Doctors said, 'Well, you know, it may be fractured, and if it is, there really is not much to do for it. It's too swollen. We'll just see how things go,'" she recalls. Tammi found little comfort in those words. At home that night, she lay in bed thinking about how much Chad had fallen lately. Call it mother's intuition, but she knew something was very wrong with her child.

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"I just started thinking about it in my head," she tells The Stir. "He had actually fallen on the way out of the ER and he had fallen the Friday before and he’d fallen that next day and I just said, 'You know what? I think we should take him back. I think there’s something going on.'"

Looking back, she noted there were other unusual signs. "He had been having these strange dreams like three months earlier," she explains. "And I had actually reached out to a neurologist and sent him a video of this. They said, ‘We think it’s normal.’ But it had been on my mind ever since then.'" So the next morning, she and her husband took Chad back to the ER, where doctors did a battery of neurological tests and made sure he did not have a concussion. They wanted to send him home again, but this time the parents insisted on an MRI.

Nothing could prepare the Carrs for what would happen next. A scan that usually takes two hours became a three-and-a-half-hour ordeal for young Chad. As Tammi and her husband, also parents to CJ, 9, and Tommy, 7, nervously waited for it to be over, she knew they would get bad news. "My husband was like, ‘You know, he probably just woke up a little, don’t worry about it.’ But when the anesthesiologist came out to get us, I knew something wasn’t right because she couldn’t look at us," Tammi says. "Her eyes were red and she sat us down and said, ‘There’s something we’re concerned about.’ I knew it was cancer."

chad carrChad was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG),  an inoperable brain tumor. It's a disease where fewer than 10 percent of patients survive longer than two years after diagnosis. Needless to say, it was the worst moment of their lives. Though, as devastated as they were, the Carrs found solace and hope in their faith. "Literally that next morning, I said to my husband, ‘Jason, we have to get people praying for him all over the world. He needs a miracle, and we have to get people praying,'" says Tammi, who posted their plight on her Facebook page. It didn't take long for the details to spread beyond her friends and the #ChadTough story soon went viral. 

"Things just started happening," she says, still astonished. "I know we’re supposed to be doing this, and God is telling us that we’re supposed to be sharing this. We’re supposed to be getting the news out about it. We’re supposed to be building this prayer chain. We’re supposed to be sharing about the lack of funding in pediatric cancer because it’s pathetic, to be honest."

As Chad goes through radiation and a clinical trial to shrink the tumor, the outpouring of support has certainly eased the abrupt change in his life. He is the grandson of former University of Michigan head football coach Lloyd Carr and son of former quarterback Jason. The Wolverines have made him an honorary team captain, allowing the tyke to join the other captains on the field during a pregame coin toss.

But it's hard for his little mind to truly comprehend what is happening to him. "I think this is another one of those things that is a blessing because he just turned 4 and I don’t think he really gets it," she shares. "He goes in for treatment every day, but the staff will paint with him. He actually looks forward to it. We have little projects that he looks forward to every day. When he does his radiation, they put him out, so he doesn’t know. Facing that fear part isn’t something he really has right now. I mean, he’s a little confused and he doesn’t know why everybody’s saying, ‘Chad Tough.’ He gets that something is going on, but he’s happy, he’s eating, and he’s playing. He’s still being a little boy, which is great.”

Just a few weeks into treatment, they have already noticed an improvement. "We can’t check the tumor now, but I’ll tell you what, his symptoms are better," she gushes. "His walking has gotten better. His eyes have gotten better. He’s jumping, he’s skipping. I mean, he was falling while walking not long ago. My prayer is that it’s gone and this is over, but you know, that’s a big prayer.”

chad and tammi carr

Tammi wants to make one thing clear: bringing attention to this disease isn't just about her son. There are thousands of children fighting it and the funding for research is despairingly low. The Chad Tough fund has been set up in his honor at Mott Children's Hospital to benefit pediatric brain tumor research and already over $90,000 has been raised. In addition, Money from the sale of $3 #ChadTough Pray for a Miracle bracelet will also go to research. The family has also set up a GoFundMe account to help with the costs of experimental treatments not covered by insurance as time goes on. "We have no idea where this is going," she says. "But what we really want are your prayers. We are asking all the prayer warriors to pray for Chad, help us get that miracle."

chadtough

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Images via Tammi Carr

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