Over the last five months since Chad Carr’s passing, I have connected with so many families whose lives have been changed forever because of Diffuse Intrinsic Pontine Glioma, or DIPG. Parents who miss their sweet babies and articulate how it doesn’t get any easier with the passing days, months, and years. Parents who literally count the days since they’ve last seen their child. Parents who have been hospitalized for ailments that can only be attributed to a broken heart.
As a mother of three children, I look at my own kids and can’t fathom the pain. I have a tough day dealing with tantrums, illness, and sleepless nights, and think about the parents who would give anything to deal with one more meltdown, one more stuffy nose, one more timeout. The horrible reality of cancer has changed my perspective.
The pain for these families doesn’t dissipate, but they have given it a purpose. They’ve started foundations, raised money for research, and reached out to newly-diagnosed families. Even that, though, isn’t always enough to keep fighting. Sometimes there are days when nothing is enough.
“One year ago…..one of my favorite videos,” wrote Tammi Carr today on Facebook. “Whenever I hear this song I think about Chad and believe he’s saying hello from heaven. Glad my boys are still able to find joy daily. CJ told me the other day that it is sad, but that he chooses to think about the memories and then those make him happy. Wow….The memories make me smile too, but they are also so hard. Can’t help but to think about what this day would be like with Chad still here. I am grateful that he is healed and whole in heaven, but I miss him so very much. Trying hard to find the joy in each day and to treasure every day with my family.”
Looking for A Sign
One month ago, the Carrs were having an especially difficult time, looking for a sign that they were headed in the right direction with their advocacy.
“Today marks four months since Chad left us for his forever home,” Tammi wrote on March 23. “This has been a very hard week…harder than it’s been since he’s been gone. I’m not sure if things are becoming a little bit more real, or if things have just been building up….but it’s been tough and I miss Chad like crazy. Praying for strength as we continue to move forward each and every day….”
Tammi and Jason received that sign in the form of a keynote speech by Francis Collins of the National Institutes of Health. Dr. Collins was the keynote speaker at the 3rd Annual Cracking the Cure Gala in honor of Gabriella Miller, who passed away of DIPG in 2013.
Gabriella’s parents, Mark and Ellyn, have been huge in petitioning for DIPG research and funding, resulting in the Gabriella Miller Kids First Pediatric Research Fund which appropriated $12.6 million to the NIH Common Fund to support pediatric research. In his speech, Dr. Collins talked about the advancements in pediatric cancer research and the hope that can be derived.
“We’re making huge strides in areas like Leukemia and lymphomas and melanomas,” he said. “But DIPG has still been a really tough problem for us – that terrible tumor that took Gabriella’s life. We need all the tools and all the talents that medical research can muster … so we can come up with new strategies that will really work. That’s what Kids First … is enabling us to do a little faster than we otherwise could have.”
Dr. Collins made many promising statements regarding pediatric cancer research and funding. There won’t be a cure tomorrow, but the right people are working on it, and it’s because of parents like the Millers, the Carrs, and many other families who are dedicating their lives to funding a cure.
Despite all those promising statements, though, it’s the story Dr. Collins ended with that felt like a personal message from God to Tammi and Jason Carr – it’s something they call a “God wink.”
I’ll let Dr. Collins tell it in his own words.
Dr. Francis Collins Keynote Speech
“My story actually was not one that I encouraged to happen but it happened anyway. By granddaughter, Bailey, who lives in Tecumseh, Michigan, is a big Michigan football fan. Bailey, who is 12 years old — she’s in 7th grade — was at a Michigan football game when she heard that Chad Carr, grandson of Michigan’s coach Lloyd Carr, had been diagnosed with DIPG.
“Bailey was moved to help and she and two of her friends … sat down to watch the Michigan-Ohio State game and they finger knitted in the space of that game 30 scarves and planned to sell them at school to raise money for the ChadTough Foundation to honor Chad Carr. They had their hearts in their mouths when they went to the principal to ask if it was alright to do this, and the principal thought about it and said, ‘Well, yeah, I guess it’s a good cause.’
“They figured, we’ve got 30 scarves, maybe we’ll sell one or two. They sold out in an hour. There were a lot of people saying, ‘Where’s mine?’ so they went back, they knitted more, they knitted more, they knitted 110 scarves – imagine that – three kids. And they sold all of those and ultimately raised $561 for The ChadTough Foundation for DIPG.
“And there was no greater moment of pride or a sense of how incredibly important and significant this is than listening to my 12-year-old granddaughter on a radio interview talking about why she did this. We were fortunate – (wife) Diane and I – that we were able to acquire one of these scarves.
“So in a way I had not in any way near anticipated, meeting Mark and Ellyn (and) becoming so attached to their incredible dream my granddaughter helped me realize just how important this is across this nation for so many kids who need answers. Though Chad sadly did not survive, his foundation – like The Smashing Walnuts Foundation – lives on and I understand the connections now between these two foundations.”
It’s amazing how things happen, isn’t it? Here is this man in this powerful, influential position, speaking on behalf of DIPG because his granddaughter was moved to action by the life of Chad Carr. Mountains may be moved because this 12-year-old girl heard Chad’s story and wanted to do something about it.
You may be thinking, “Sure, but her grandfather is the head of the NIH – her actions carry a greater weight.” Yes, but would she have known about Chad’s story had the community, the media, the friends, the churches, the families spread the word the way they had? It’s all relative and it all makes a difference.
Don’t ever think what you’re doing is insignificant to a greater cause. Don’t ever think you can’t make a difference. Even if you influence just one person, you’ve done something incredible that could change the world.
Watching so many amazing people fight battle after battle to make a real difference in the world of pediatric cancer is something that has inspired me and changed my outlook on both life and humanity. I truly will never look at the world quite the same way ever again.