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Why I Share Tough-to-See DIPG Posts on Facebook

I still remember the moment I started crying and couldn’t stop. It was a November morning. I was perusing Facebook and clicked on a video of little Chad Carr. I had helped at the family’s 5K event the month before and Chad had seemed okay. Watching the video that morning, it was clear that Diffuse Intrinsic Pontine Glioma had taken its toll.

Chad Carr

Christmas came on November 12 for Chad Carr and his family.

His mom, Tammi, was waking him up for Christmas morning. The only thing was, it was early November. But Chad’s family wanted their little boy to have one more Christmas and they knew he wasn’t going to make it to December 25.

I can still remember Tammi’s words, so excited to wake up her little boy, but the part that broke me was Chad’s glee that it was Christmas. The pure joy that remained despite a brain tumor that was robbing him of life. It was that childhood innocence seen in a short video clip that had me sobbing.

I have cried for other children since then. All of these innocent children who have had their lives stolen by a brain tumor with no cure. It is rare, says the medical community. We can’t single out diseases, say politicians.

Those statements may be conceptually true, but they aren’t right once the reality of DIPG is seen because there aren’t many diseases in the developed world absent of hope. Even the worst have a chance of survival. DIPG does not. You are delivered the diagnosis and told you are lucky to have a year to spend with your baby. Then you watch them die.

Put yourself in those shoes and then tell yourself that the rarity of the disease is a legitimate argument to a lack of funding and attention.

That’s what brings me to my purpose in writing this. Katherine the Brave passed away on Monday after a one-year, four-day battle with DIPG. Her family has made it their mission to expose the cruel, vicious reality of the disease. It is what more and more parents are doing as a way to bring attention to DIPG and the need for a viable treatment plan. I say viable because the current “treatment plan” is to send families home to make memories. Those who are “lucky” have what is referred to as a “honeymoon period” — a few months free from symptoms after radiation shrinks the tumor.

I understand the need for awareness. Without awareness and dedication, nothing will change. When I share Facebook posts that show the reality of DIPG, though, I often think about those who will see it. Friends, family, and acquaintances with healthy children and grandchildren who may not want to be exposed to the ugliness of life and death. I get it. You’re talking to someone who refuses to watch animated animal movies because a character always dies.

But it is our responsibility to see it. Just as it is our responsibility to see the war, poverty, abuse, slavery, racism, and sexism running rampant all over the world. We don’t have to take on the burden of all these things — that would ruin us — but we have to see it. Seeing it changes our hearts, minds, and actions, and it can make a difference in the smallest – and biggest – ways.

I do understand, though, that seeing it makes us vulnerable to the reality that we are not separate from it. It could be any one of our children receiving a horrible diagnosis and we know that. Even if our conscious mind doesn’t allow it, our subconscious mind understands, resulting in paralyzing fear.

I believe it’s why we try to “fix it” for grieving parents. We want to believe that if the same thing happened to us we would somehow “get over it” and live a happy life. We want to quiet the terror in our hearts that a random act of horrible luck could result in our worlds being turned upside down and irreversibly damaged.

Unfortunately, there is no fixing a grieving parent. There is no “making it better.” There is only support, love, kindness, and care. Seeing images of Katherine the Brave’s final days in her earthly body and her parents sobbing with grief is heart wrenching. I do want to fix it. I want to help. I want to do something. I suppose it’s why I’m writing.

Even if we found a cure for DIPG directly from Katie’s donated brain, though, it would not “fix” her parents or family. It would not alleviate their pain or take away their grief. It’s the same for all of these families fighting for a cure. They do it to carry on the legacy of their children, to keep busy, to hold on to a purpose, and to ensure other families never experience the anguish they have experienced … but it won’t change their pain.

Each day when I spend time with my three children, I think about the mortality of our family. I think about the possibility that something could happen to any one of us at any time. I would be lying if I said it didn’t scare me. I would be lying if I said I didn’t try to push those thoughts out of my head. But I would also be lying if I said it didn’t make me appreciate life more.

Yes, I still find myself barking orders at my kids and saying things like, “Are you insane? Stop spinning/touching that/falling!” But I also find myself with the ability to laugh a lot more (even if it’s on the inside) at the craziness of children. I appreciate them for who they are and I am thankful every day that I am given the privilege of being their mother because tomorrow isn’t guaranteed.

Then I continue to share those Facebook posts, write stories, and talk about the ugliness of DIPG, because it needs to be shared. These families will help the medical community find a cure, forever revered for the sacrifices they have made and the unwavering love they have shown.

You can support DIPG research and awareness through The ChadTough Foundation’s RunTough for ChadTough event on September 24. Run in Saline, Mich., or anywhere as a virtual runner.

DIPG

Why We Keep Fighting for These Brave Little Souls

It’s been less than a week since we celebrated our victory in the Infiniti Coaches Charity Challenge. The project not only awarded The ChadTough Foundation with $100,000 for DIPG research, it spread awareness locally and nationally. The contest is what kick-started a group of advocates dubbed “ChadTough Champions,” which — now that voting has ceased — is chomping at the bit to get to work on the next project.

DIPGIt’s awesome, but I admit it’s been short-lived. While we ride the momentum wave of that small victory for Diffuse Intrinsic Pontine Glioma, the ugly disease keeps right on devastating.

DIPG

This Clarkston charity basketball game had connections from three local families impacted directly by DIPG.

Just today I received a private message from a friend I went to high school with. When I glanced at the pop-up, I saw the words, “Chrissie, I can’t believe it …” and then saw “DIPG.” One of her students was just diagnosed. She’s eight.

How could this be? This “rare” disease has managed to touch my life in countless ways. It seems everywhere I turn, someone I know is learning that a loved one, neighbor, friend, classmate, or co-worker has been directly impacted by DIPG.

When I wrote about Dan Fife and Clarkston High School honoring The ChadTough Foundation, I was shocked to find out that three different children with DIPG were directly associated with the event. Dan’s sons — Dugan and Jeremy — are each close with a family that has lost a child to the disease, and Amy Quayle, a teacher at Clarkston and a ChadTough Champion, lost a niece to DIPG seven years ago.

How is this possible? It seems DIPG is suddenly everywhere even though it’s “rare.”

The Sad Reality of DIPG

We won the Infiniti Challenge and felt a fleeting moment of victory before it was ripped away by reality. Yes, we are making important progress, but we aren’t there yet.

Tammi and Jason Carr were prepared for a cancer diagnosis when they were at Mott Children’s Hospital in September of 2014. They could tell something was really wrong and got themselves mentally ready to hear the words.

Can hope be derived from all that is happening right now in the DIPG research community? … without a shadow of a doubt that the answer is yes. — from 3 Reasons You Should Fight for DIPG Research

They would fight it. They would deal with the chemotherapy, radiation, and ugliness that came with cancer. It wouldn’t be fun, but they could do it. Then they received the life-altering news that it wasn’t just cancer, it was DIPG. A diagnosis Tammi couldn’t even pronounce for a week after receiving it.

It robbed her family of the hope they had. Even with cancers that carry a dire 25-percent chance of survival, there is still hope. There is still room to carry determination to win a battle. When that chance is zero, that hope is erased. Determination transforms into helplessness.

The Brave Little Souls

DIPG

Chad is one of many brave little souls.

There is a poem the Carr family included on the back of the program at Chad’s celebration of life service entitled, “The Brave Little Soul.”

It reads:

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world.

He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.

God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts.

For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

The most difficult part of this fight against DIPG is that there are so many brave little souls who will be lost in the process. Just as the poem says, there will be plenty of good to come from these children, but we would rather not have to say goodbye.

I have spoken to many families who have lost their children to DIPG. Their children share so many of the same characteristics: they are kind, brave, strong, determined, and wise beyond their years. So many of these children comfort their parents through the hard times. It’s as though every story I hear makes “The Brave Little Soul” more and more real to me.

The Brave, Brave Parents

DIPG

The word is spreading for DIPG awareness thanks to the families who won’t give up.

DIPG parents are some of the strongest, most courageous and selfless people I have ever had the honor of speaking with. They have allowed their children to participate in trials to contribute toward finding a cure. They donate their child’s tumor for research. They hold fundraising events and awareness rallies. They are driven to honor their children, but all say with such passion that they never want another parent to go through the hell they’ve endured.

Winning the battle against DIPG won’t happen overnight. No one is going to catch lightning in a bottle. It’s going to take perseverance, hard work, and prayer. Research will lead to progress before the big win, like finding treatment options that prolong life. That is the science behind it.

But let me tell you why these parents are fighting for awareness. You might think awareness is nothing more than lip service, but it carries so much weight. So many of these brave parents have been written off in hospitals because they carry the DIPG diagnosis. They aren’t presented with treatment options for common illnesses because they are slapped with the DIPG label.

It’s not okay.

These brave parents are raising awareness to fight that stigma and encourage young doctors and researchers to challenge DIPG all while they are bringing in money to fund the process. We can help by supporting those parents with our time, money, or spreading of the word.

Really, that’s all it takes. Instead of shaking your head or turning from the sadness, embrace the cause and contribute to the cure.

It’s what these brave little souls are still fighting for.

 

please share for dipg

Please Share in the Name of DIPG Research

When we first started planning for the Infiniti Coaches Charity Challenge in December, we were excited and driven.

please share for dipg

Our sweet Chad Carr.

Honoring Chad by winning this contest was at the forefront of our minds, and as more and more committed to talking about the need for DIPG research dollars, our team only grew stronger.

We were fueled by educating the masses through telling stories of heartbroken families, explaining the science behind the disease, and shining a light on the lack of funding and medical injustices surrounding DIPG.

Our commanding lead in the contest reflected our daily support. With more than 2,000 people voting and spreading the word, we had no doubt we would win this contest for Chad and the other DIPG families.

Now, though, things are different. The political nature of this contest has taken over and it’s no longer about spreading awareness, it’s about getting votes. Instead of excitement and joy over doing the right thing, we are panicking at the thought of not being able to win this contest for Chad.

please share for dipg

A Clarkston charity basketball game has been just one of many initiatives in the name of ChadTough since this contest began.

That’s really what it’s about, after all. This contest started less than two months after he left this earth, and it became a way to officially honor his memory. If we don’t win this contest, all of the effort, hard work, and dedication will be for naught. Or will it?

Jason and Tammi want to get that national spot on ESPN to tell the world what DIPG is and what needs to happen for treatment options to become a reality. They will do whatever it takes to ensure other families aren’t met with the same dead end they were met with when they were told, “DIPG.”

The truth is, though, we can’t control the outcome of this contest. Perhaps micromanaging the voting is the way to go, but maybe it’s not. All I know is that I felt pure joy when we were spreading the word and raising awareness for DIPG. As sad as these stories are, they are uplifting and amazing and inspiring. Introducing the world to these incredible children and their families is making a difference and we aren’t going to stop just because this contest ends.

Vote Coach Beilein for ChadTough!VOTE: espn.com/infiniti

We are so thankful for Coach Beilein and Kathleen’s unwavering support for ChadTough! Choosing ChadTough for this year’s Infiniti Coaches Charity Challenge has raised the volume of DIPG’s voice. Go Blue and vote Coach Beilein and ChadTough every day!

Posted by The ChadTough Foundation on Saturday, February 6, 2016

 

Do we want to win this for Chad? Desperately. We desperately want all of the hard work we have put into promoting this contest to come to fruition in a win. We want Coach Beilein and Kathleen to have a tangible win for all of the sacrifices they have made with their time and effort for the cause. We want the 2,000-plus volunteers to be able to holler and whoop over a win for ChadTough. We want the Michigan State and Ohio State faithful who crossed enemy lines for us to have an award they can hold up high.

But it might not happen.

We have to come to terms with the fact that it may not happen. And you know what? That’s okay. It’s okay if we don’t win the Infiniti Coaches Charity Challenge because we will continue to do all the same things we were doing before. We will continue to fight for DIPG research dollars and awareness.

It’s important to me that we don’t lose sight of what this contest is about: wonderful NCAA men’s basketball coaches selecting charities to represent. Charities doing great things that should be recognized.

Thad Matta – Ronald McDonald House

Ohio State’s Thad Matta is representing the Ronald McDonald House, an organization near and dear to the Carrs. They stayed at the Ronald McDonald House in New York when Chad was going through treatment and have nothing but wonderful things to say about their experience.

These facilities allow families to make a home away from home while their children are being treated in the hospital — something invaluable during very stressful times.

Matt Painter — Smith Family BReaK Thru Fund

Purdue’s Matt Painter is representing the Smith Family BReaK Thru Fund, which supports the Smith family’s efforts toward raising research dollars in the name of their three children: Braden, Riley, and Keaton.

All three children were diagnosed with Riemann-Pick Type C disease (NPC), a neurodegenerative disorder which causes progressive deterioration of the nervous system. Sadly, Braden lost his fight with NPC in 2006 at age 10, while Riley and Keaton continue to fight.

The Smith Family BReaK Thru Fund is dedicated to funding research projects for NPC the way the Carrs are dedicated to funding research projects for DIPG.

Brad Underwood – Nacogdoches Area United Way

Stephen F. Austin’s Brad Underwood is representing the Nacogdoches Area United Way, which serves its community in the areas of education, health and financial stability. Just as the many Ronald McDonald House locations around the country are fantastic in what they do, so are the many United Way locations.

Coach Underwood is not only representing the NAUW in this contest, he offers his time and has been named the 2015 Tim Hayward Volunteer of the Year.

John Beilein – The ChadTough Foundation

please share for dipg

Photo: USA Today Sports Images

Last, but certainly not least, Coach Beilein has done an incredible job representing The ChadTough Foundation, a charity dedicated to raising research dollars and awareness for DIPG. This disease is one that desperately needs a voice.

Parents are delivered the diagnosis and, unfortunately, left flailing. They are tasked with the responsibility of guiding their child’s treatment in a sea of few options. More often than not, the only hope these parents can cling to is one that comes with an experimental clinical trial that puts their child through too many pokes and uncomfortable procedures.

Treatment for DIPG hasn’t changed in more than 40 years and it point-blank isn’t fair. These otherwise perfectly-healthy children are dying because we have no concrete answers.

Thankfully, family foundations throughout the country are helping answers materialize. Research dollars are being raised, tumors are being donated, and progress is happening. The tipping point has been awareness. The more people learn about this horrible disease, the more progress is made.

Please consider sharing this story in the name of DIPG and voting for Coach Beilein. Yes, we are hoping to win this contest for Chad, but even if you simply share this story and make someone aware of DIPG who wasn’t before, we have honored our sweet little boy and all of the other incredible children who fly high with him.

Worrying is toxic

Why Worrying is Toxic for Your Productivity

When you see a quote in two completely different places within a 12-hour span, it’s good to stop and reflect.

For me, it has been Max Lucado’s quote:

Feed your fears and your faith will starve.
Feed your faith and your fears will starve.

I saw this quote yesterday in the context of the fight against DIPG, an inoperable brain tumor found in children, and a cause close to my heart.

The second time I saw this quote, it was in an article on Entrepreneur, “Why Worry? Because We Do. But We Can Kick the Habit.”

This article stuck out to me immediately because I am a chronic worrier. There is something inside my psyche that allows me to believe that worrying equates to control, which may be the most ridiculous assumption I could have.

Lucado’s quote in the context of this article puts into perfect perspective how the act of worrying actually blocks out my productivity.

“A key part in reprogramming the mind for optimal performance and healthy thoughts is to kick the worry habit,” writes Matt Mayberry, a Speaker and Maximum Performance Strategist. “So many people love to worry about every little thing. Half the things people worry about are not even in their control. Most are worrying about things that they can do absolutely nothing about. They are creating stress and negative energy all throughout their entire body when they worry.”

Mayberry provides two ways to “kick the worry habit” in business:

1. Focus on what you can control

Worrying is toxicThis is so important for me. I love being in business for myself, but it wasn’t a gradual process that allowed me to wade in slowly. Considering my personality, diving in head-first is truly the only way I do things anyway, so being “forced” to do so wasn’t really a stretch.

But as I build success in what I’m doing, I find myself obsessing over the gap between where I am versus where I need to be. This is so toxic for my productivity and my psyche, and the ironic part about it is that focusing on my work — what I can control — is the only way I’m going to fill that gap.

“Each and every one of us spends more time than we should on things we have absolutely no control over,” writes Mayberry. “You can’t necessarily control an outcome, but what you can do is put yourself in position to win by focusing on the process and everything that you do have control over.”

2. Make progress every day, and then acknowledge it

This is something I have incorporated into my daily workflow and it has been critical to my mental health. Instead of writing down every single end-goal for every single project I have each and every day, I set small goals that I can achieve. That way I can check them off and feel a sense of accomplishment throughout the day.

“When you focus on making progress each day and then acknowledge it, you begin to feel good about yourself and instantly boost your self-esteem,” writes Mayberry. “You come to the realization that you are better than you were the day before – and that gives you a deep sense of satisfaction.”

I can’t stress enough how important it is to ditch constant worry and dread, whether it’s over the success or failure of your business, your finances, or your workload. The worry quite literally pushes away your ability to solve your problems by consuming your mind and draining your productivity.

So focus on what you can control, set your small goals each day, and get to work on achieving!

Brandon Inge and Chad Carr

Know that You are a Part of Chad Carr’s Story

Prior to Chad Carr’s diagnosis, I had never even heard of Diffuse Intrinsic Pontine Glioma, or DIPG. In fact, every DIPG parent I’ve spoken to said they had never heard of it either.

That, my friends, is the problem.

Not because we should make a point of looking up rare diseases so we are never caught off guard, but because we need to pay attention when we are finally told about one.

“The system” has let down children with DIPG. This disease has been killing for decades and nothing has been done about it because no one has had the voice to force the public to pay attention.

Enter Lauren Hill and Chad Carr.

A True Hero

Lauren Hill DIPG

Photo: Andy Lyons/Getty Images courtesy of USA Today

Lauren Hill captured the hearts of sports fans everywhere when she opened up about her DIPG diagnosis in 2014. She was diagnosed as a senior in high school, just 48 days after committing to play basketball at Division III Mount St. Joseph University. To say Lauren Hill was a hero would be a gross understatement.

“I know that this is a disease that mostly affects little kids,” she told Jim Rome in October of 2014. “I’m old enough to express my symptoms and talk to the doctors clearly about what’s happening to me and what’s going through my mind. Kids don’t have the words or the ability to articulate what’s happening to them. So I need to be the voice for little ones.”

Hill’s determination to raise money (she raised more than $1.5 million) and awareness for DIPG made a lasting impact on the country’s understanding of the disease. Still, it hasn’t been enough. While many remember Hill’s impact, they may not remember that it was DIPG that took her life.

“Lauren Hill spent her final year polishing a layup and inspiring others to live fully,” read the lede of an ESPN article published the day she died. “She succeeded at both as she fought an inoperable brain tumor.”

An inoperable brain tumor. Not Diffuse Intrinsic Pontine Glioma. The tumor was never named in the article.

That is a problem.

Ann Arbor’s Sweet Boy

As Hill made national news with her story that Mount St. Joseph would move up it’s opening game so she could play, the Carr family was reeling from the news that young Chad was diagnosed with DIPG on September 23, 2014, just three days shy of his fourth birthday.

“This is Chad,” wrote Tammi on her Facebook page. “My precocious, beautiful smart soon to be 4 year old. Yesterday our lives changed as he was diagnosed with an inoperative brain tumor in his brain stem. We now need prayers and its my hope that this goes viral and millions fall in love with my little man and send him prayers. It’s going to take a miracle and I believe it can happen and I hope you will help and spread his story!!”

The story went viral within days. The Ann Arbor and Saline communities rallied around the family, and Tammi continued to share Chad’s story through Facebook.

“To post something on Facebook and have it take off the way it has (means) there’s a plan here. I put one post up,” Tammi told MLive two months later.

“It’s weird. One week we’re living our lives and the next week it’s you getting this support from just amazing places. People like Charles Woodson and others who have been friends over the years, that’s their way of showing support.

“But the outpouring from Texas A&M, Georgia Tech, getting things in the mail, the Sabres, the Maple Leafs, it’s awesome. It’s really awesome.”

Now You Are Part of the Story

Chad Carr DIPG

Chad Henne and Denard Robinson show their #ChadTough support within days after his diagnosis.

Lauren Hill and Chad Carr have become the faces of DIPG, but there are so many other precious children and families who have been affected. I have been tasked with the very important job of giving those children a voice through the conduit of The ChadTough Foundation.

You have a job, too. It is your job to give this disease a louder voice by spreading the word that it exists and that it needs a cure.

“I remember thinking to myself, OK, what are they going to do?” Hill told The Jim Rome Show in 2014. “I expected them to have some kind of plan and that’s what I was waiting to hear because I just wanted to get back on the court. I wanted to keep playing that year. I didn’t want to stop.”

There was no plan.

It’s the feeling so many parents experience when they are told their child has DIPG.

Okay, what do we do now?

There isn’t anything to do. There aren’t any answers. It’s an end-of-the-road diagnosis and it has to change.

“If you look at other cancers as an example, you’ll see that the cancer dollars that flow (go) where people demand they go,” said Dr. Michelle Monje, a clinical researcher at Stanford who has devoted her career to DIPG. “People have demanded breast cancer research … and there’s been an enormous amount of breast cancer research funded by the government as a result.

“I think that as people are more aware of the importance of the (DIPG) research, they’re more willing to donate (and) to demand from their government representatives that funds be spent to understand this important pediatric cancer.”

Less than three months after Chad Carr gained his angel wings, The ChadTough Foundation has raised approximately $1 million that will go toward DIPG and pediatric brain tumor research.

Your voice is working. Now make sure you keep talking.

Chad Carr - DIPG

3 Reasons You Should Fight to Make A Difference with DIPG Research

Chad Carr and Mark Souweidane DIPG

Chad Carr with Dr. Mark Souweidane in New York.

This week, I took my DIPG research to another level: I spoke with Dr. Mark Souweidane, a neurosurgeon in New York, and a Dr. Michelle Monje, a neuro-oncologist at Stanford. Both are working diligently to find a cure for DIPG and both contributed to the treatment of Chad Carr during his 14-month fight with the disease.

I will write in-depth profiles on these incredible people down the road, but today I would rather list my overarching takeaways after peppering them with my novice questions.

I was intrigued with the chance to look behind the curtain, so to speak, because we (the public) don’t really understand where research dollars go when we donate to one cause or another. I can feel good fulfilling my duty to “give to a worthy cause” when I write a check for charity, but does it actually make a difference? My guess is that the majority of people solicited to donate wonder the same thing.

When it comes to DIPG, that wonder has to be magnified. Those who give to DIPG research could easily believe their efforts are futile considering the cure rate for the disease is zero. That poses the question: is it worth giving money to DIPG research, or is your dollar better spent elsewhere?

Should You Give to DIPG Research?

Dr. Michelle Monje - DIPG Research

Michelle Monje, MD, PhD, recently received an NIH grant for work with pediatric gliomas.

Yes, yes, yes, and yes. I can’t emphasize it enough.

If there is one thing I learned having spoken to Dr. Monje and Dr. Souweidane, it’s that we can make a difference through donations. Dr. Monje recently learned she will receive a grant from the National Institutes of Health for pediatric gliomas, a huge reason to be excited considering just 4-percent of NIH funds go toward all pediatric cancers.

“I couldn’t have gotten that funding had I not had the four years of almost exclusive support from private foundations,” she said. “(Those donations) allowed us to get the publications and the preliminary data that were necessary to get over the hump of getting government funding. Looking at the field in general, the vast majority of the research being done is being funded by private foundations.”

This is even more true when it comes to Dr. Souweidane, who dedicated his career to DIPG more than 15 years ago. Dr. Souweidane has developed a surgery — one Chad Carr participated in last January and March — that injects medication directly into the tumor via catheter, something that circumvents a number of difficulties that come along with treating DIPG. He is the only doctor in the United States that performs this surgery.

He is just now completing the very first trial, which began in 2012.

“Every dollar I spend is through gifts and foundations, none of it is federal funding,” he said. “I’ve probably spent close to $3 million total in my 15 years of doing this.”

All from gifts and foundations. Yes, you can make a difference.

Is DIPG Research Making Any Headway?

This is the thing I was most curious about: can hope be derived from all that is happening right now in the DIPG research community? Having asked this question to both of them, I can say without a shadow of a doubt that the answer is yes.

Tissue samples haven’t been available to researchers for decades since DIPG is inoperable. Over the past five years, however, families like the Carrs have donated their tumors to the cause. This is important because it allows them to look under the microscope and see how this disease takes over the brain.

Once Dr. Monje and other researchers were able to analyze the tumor cells, they recognized that all that had been done to treat DIPG to that point had been totally misguided.

“It’s very clear now given what we’ve come to understand the last few years why nothing we’ve tried before has worked,” she said. “It’s a very different disease than other glioblastomas and high-grade gliomas, the standard of which is how we’ve been treating DIPG. That’s been completely the wrong approach.”

It would be like trying to remove a wart with acne medication. Both are bumps, but they aren’t even remotely similar. It’s as though the DIPG community finally has the right destination, they just have to draw the map.

Does Raising Awareness Make A Difference?

Dr. Mark Souweidane - DIPG

Dr. Mark Souweidane is completing his three-year trial that has the potential to make big changes in the effectiveness of DIPG treatment.

This may have been the most empowering thing to learn upon speaking to Dr. Monje and Dr. Souweidane. Awareness matters.

“If you look at other cancers as an example, you’ll see that the cancer dollars flow where people demand they go,” said Dr. Monje. “People have demanded breast cancer research, and there’s been an enormous amount of breast cancer research funded by the government as a result.

“I think that as people are more aware of the importance of the research, they’re, No. 1, more willing to donate to DIPG research and, No. 2, more willing to demand from their government representatives that funds be spent to understand this important pediatric cancer.”

Another factor of awareness is that future scientists and physicians will choose to take DIPG on as a field of study. Passionate individuals like Dr. Monje and Dr. Souweidane are critical to finding a cure.

“(Awareness has) turned this around 180-degrees,” said Dr. Souweidane. “It’s now the one disease of the brain and children that people are extremely, extremely enthusiastic about.

“There’s been a ground swell from patient advocacy groups – that’s driven a lot of this. The tide has shifted, there’s no question about it.”

Next Steps

vote ChadTough

Vote each day for Coach Beilein and ChadTough at espn.com/infiniti.

While a cure won’t be found tomorrow for DIPG, researchers are headed in the right direction for the first time ever, and all of that has been possible because of people like you. People who have given money, time, and care to the cause.

The ChadTough Foundation is dedicated 100-percent to funding DIPG research, so a donation there or a vote for Coach Beilein in the Infiniti Coaches Charity Challenge will contribute to finding a cure.

Yes, you can make a difference. Now go ahead and do it.

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Defeat DIPG

It’s the Lack of Hope that Hurts DIPG Kids the Most

In addition to writing features about children (The Faces of DIPG) throughout the Infiniti Coaches Charity Challenge, I feel compelled to journal my feelings.

Parents are opening their minds, souls, and spirits to me, helping me understand what it must feel like to be on the receiving end of such horrific news: your child is going to die. Because with DIPG, there is no hope as things currently stand. There is no percentage of children who have survived. There are zero. Sure, the phrase is “less than 1 percent survive,” but that is more or less a technicality. None survive.

As an outsider who has not experienced DIPG firsthand, hearing that no children survive this disease is one thing. It (rightfully) conjures up responses such as:

“Wow, how horrible.”

“That is unacceptable.”

“Something must be done.”

Each of those statements is correct, but they don’t capture the horror of the decision families have to face upon diagnosis.

Option #1: Radiation

Team Lily LaRue

Another precious face of DIPG. Learn more about Team Lily LaRue on Facebook.

I could say there is no cure for DIPG, but that wouldn’t do the lack of a cure justice. There isn’t even adequate treatment for DIPG. The “treatment” option for kids diagnosed is radiation: high-energy particles or waves, such as x-rays, gamma rays, electron beams, or protons, to destroy or damage cancer cells.

The only problem with treating a child with radiation to destroy or damage cancer cells is that it also destroys healthy cells. It can also result in a number of extremely unpleasant side effects such as nausea and inflammation, which physicians treat with steroids. Steroids then cause their own wealth of side effects such as weight gain, mood changes, and a ravenous appetite.

All to buy additional months. Not years. Months.

And radiation therapy doesn’t always work.

So parents choose to treat their child with radiation, hoping that it will temporarily reduce the tumor and buy them precious months with their child, but the treatment itself causes so many side effects and doesn’t always work.

Option #2: Clinical Trials

The thing about clinical trials is that they provide hope where there is no hope. Could the next clinical trial offer a treatment option that gives a family more time? The possibility has to be intoxicating.

But there are a number of ugly truths about clinical trials, including but not limited to:

  • Parents are experimenting with their child’s body. A clinical trial is doctors testing a theory. Not only may the child potentially receive a drug in far too high of a dose, they may receive a drug for an entirely different cancer. Will a drug designed for pancreatic cancer help a child with DIPG? What about ovarian cancer? It’s all unknown and the child is the guinea pig.
  • Parents must get a spot in the trial. How awful does it sound that kids must win a lottery to take part in a trial? It’s a sad truth. Trials are not open to everyone. I’ve even heard stories of parents who were told they had a spot in a trial only to travel to the hospital and be turned away because “circumstances had changed.”
  • DIPG Parents have few options. Not only are there limited spots in clinical trials, there are limited DIPG-specific trials. If the trial is for neuroblastoma, will it really help a child with DIPG?

Option #3: Go Home and Love Your Child

No, really. That’s the last option.

Can you imagine walking into a hospital to get your child checked out for concerning symptoms, learning he or she has an inoperable brain tumor, and then being told “your guess is as good as mine” by the medical staff?

That’s essentially what happens to these parents in more ways than one. Doctors know so little about this disease that the parents are in charge of treatment. The parents decide the path to take because there is no path to take.

Parents can fill their child with drugs and radiation with the hope of squeezing out a few months of quality life or choose to take their child home and watch them deteriorate bit by bit.

What would you do?

Option #4: Let’s Make A Change

Defeat DIPG Michael Mosier Foundation

Learn more about the Michael Mosier Defeat DIPG Foundation at defeatdipg.org.

How about we write in a final option: let’s make a change.

And before you shrug your shoulders and wonder what you could possibly do in the face of this huge problem, know that there is hope. For the first time in decades, tissue samples are being collected, giving researchers the ability test in a lab instead of on children. In the past few years, life expectancy for DIPG has increased from 3–6 months to 9–12 months. That may seem like nothing, but it’s progress.

Think about it: leukemia was considered a death sentence just 50 years ago. Now, some forms of leukemia carry a 90-percent survival rate. It took focus and funding.

Approximately 90-percent of funding that goes toward DIPG research comes from families who have lost a child to the disease. That is a huge burden for the families to shoulder, but they are weathering the storm to ensure other families don’t have to live their nightmare.

It is also because of those families that researchers have tissue samples. Approaching a family preparing for or grieving a child’s death to ask for tissue samples isn’t the easiest thing to do, but it’s critical in finding a cure. As families of these children come together and love on one another, that message can be spread and changes can be made.

vote ChadTough

Vote each day for Coach Beilein and ChadTough at espn.com/infiniti.

For The ChadTough Foundation, the No. 1 thing that will help takes very little effort: vote for Michigan head coach John Beilein and The ChadTough Foundation in this year’s Infiniti Coaches Charity Challenge. Stick with it for the long haul and vote each and every day at espn.com/infiniti.

It may just mean $100,000 for The ChadTough Foundation and DIPG research.

Big Ten Rivals Unite Over Chad Carr

I will be the first to admit that college teams hate one another. Real, stupid, ridiculous hatred. It’s silly, really. Schools with this loathing that reaches beyond human decency, all because of football, basketball, or some other sport. I’ve been there.

It wasn’t because of the school I went to. I went to Eastern Michigan University, a school known for its track, swimming, and women’s basketball teams. An opportunity while in college, however, had me volunteering with the University of Michigan softball and basketball teams, and I quickly fell in love with the Maize and Blue.

Marrying the men’s basketball sports information director only furthered that romanticism.

Because of my marriage, I held strong loyalty for Michigan basketball, but was chastised by my colleagues because I never went to the school. Many of those colleagues went to Michigan State, and their rude nature left me with a sour taste in my mouth. I learned to loathe Michigan State because of it, a mindset that has lasted until recently.

Honestly, I never would have thought that perspective could change.

Enter Chad Carr.

Tammi and Chad Carr

The photo that stole my heart.

The little boy who stole my heart. It started with the photo of Chad and his mom, Tammi, that I saw after my husband came home with the news that Chad had been diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. This photo showed Chad looking into the eyes of his momma, and it took me to the many moments I shared with my own two-year-old son. I cried. It hurt.

I then met Chad almost a year later when I helped with his foundation’s 5k in October of 2015 and have since taken on a greater role with his family.

Now the goal is winning $100,000 through University of Michigan men’s basketball coach John Beilein and the Infiniti Coaches Charity Challenge. I truly believe we will win it.

Why?

Because this little boy has united people who previously loathed one another — people who professed hatred for one another simply for the colors they represented. It seems silly, really, in hindsight. That adults would treat each other with such disrespect simply for the team they cheered for.

Said one supporter of The ChadTough Foundation:

My husband, son and I were just sitting in our family room watching ESPN and my husband said, “this is the first time in my entire life that I’ve ever rooted let alone voted for a coach of ‘that team up North.'” He had just finished voting Coach Beilein.

No sooner did those words come out of his mouth, ESPN went to Stuart Scott’s speech at the Espys. This exact line…

“You beat cancer by how you live, why you live and the manner in which you live.”

We just think this is such a true statement and that it perfectly fits Chad and his family. Their journey has taught such valuable lessons…he didn’t need a reminder but he was given anyway. ? Pretty neat!

ChadTough is as cool as the other side of the pillow!!

We all know how much Ohio State and Michigan fans hate one another … yet here is an Ohio State family loving a Michigan family because of a special little boy who has had a power beyond all of our understanding.

Ohio State with ChadTough decal

Ohio State with its ChadTough decal.

There is no point to this story other than to express awe over Chad Carr and the power he has wielded over so many. His sweet face, brave fight, and selfless family have captured America’s hearts. We don’t know how they do it, but they’re showing all of us what it means to live one day at a time and appreciate what we’ve been given.

That, my friends, is why Coach Beilein and The ChadTough Foundation will win the Infiniti Coaches Challenge. Mark my words.

Carr Family

What We Can Do for Chad Carr and His Family

Chad CarrNo one has an explanation for the loss of a child … or at least no one should. The kind of pain the Carr family is experiencing right now as they grieve the loss of five-year-old Chad is one that no family should have to experience.

The very sad truth, however, is that cancer is the second-leading cause of death in children (after accidents) and that approximately 1,250 children under the age of 15 will die from cancer this year. That is too many … especially when the funding for childhood cancer research is just four percent of the taxpayer-funded National Cancer Institute’s annual budget.

After learning of Chad’s death earlier today, I have cried. I have read through the countless messages of love and support from people who have never even met the Carr family, drumming up tears over and over again.

I consider it a privilege to have met them through helping with one of Chad’s fundraising events in early October. It was then that I met Tammi Carr, Chad’s mom, and I don’t know that I’ve ever been more impressed by another human being. This is someone who – along with her family – has experienced hell on earth, but she was gracious and genuine to me, even inviting me and my family to attend her church.

Their incredible spirit is why countless people are grieving over the loss of Chad tonight. Some knew him, and some didn’t, but everyone felt the love of this family.

Standing By Faith

Tammi and Chad CarrNo one should ever tell a grieving family that “it was God’s plan,” or “everything happens for a reason,” or “he’s in a better place.” Sometimes things just hurt. Sometimes things are not fair. Sometimes things are past understanding.

To hear Tammi Carr speak with such insurmountable faith shows the kind of strength only heroes have. Yes, they wanted their son to be healed, and they did everything they could to make that happen, but they also spoke with realism.

When it looked like Chad was progressing toward his angel wings, they prayed for peace for their little man. They never stopped believing in the goodness of their God, and they never stopped sharing their story, which is a testament to what real love looks like.

The Carr family may have felt like shutting down over the inevitable loss of their precious child, but instead they continued to share. It was a selfless act that brings attention to a major problem within the medical community: ignoring childhood cancer.

These are people who, upon learning their son had an inoperable brain tumor, also learned that the medical community had been doing virtually nothing to progress treatment for pediatric cancer for the past 40 years. Imagine the anger you would feel if it were your son or daughter. It would be like hearing that your precious baby doesn’t matter.

Progressing Toward A Purpose

That is why the conversation can’t end here. In fact, it is just beginning. Chad’s legacy will be that he brought much-needed attention to pediatric cancer research, saving the lives of children who aren’t even born yet. Saving the parents of those children the pain and agony of hearing that their baby is undergoing treatment better suited for an adult.

“Zero dollars from the federal government has been given towards this disease,” said Tammi Carr in September on the Mitch Albom Show of Diffuse Intrinsic Pontine Glioma. “The only money that has been raised has been raised from families like ours who have been through this and are trying to make a difference.

“Now we’re in that position, unfortunately, but we’re not going to just let it go. We’re going to do everything we can to make sure we can make a difference.”

I have no doubt the Carr family will work just as hard now as they did when Chad was first diagnosed to raise funds toward treatment of DIPG and all pediatric cancers. These babies are taking on way too much and are gone way too soon for the medical community to ignore this issue.

What Can You Do?

Tammi, Jason, CJ, Tommy, and the rest of the Carr family welcoming the world into their journey with Chad will save lives, because they aren’t going to stop. They aren’t going to stop bringing attention to this issue of ignoring pediatric cancer research.

Just as you shouldn’t stop lending support to someone who has lost a loved one after the initial shock has faded, you shouldn’t stop supporting the ChadTough Foundation just because Chad has gone to be with God. Chad’s family is going to do everything they can to change the way pediatric cancer is supported and you can help through supporting the ChadTough Foundation.

You can donate to the ChadTough Foundation or wait for the next opportunity to come out of the Carr camp. I can guarantee it will be coming and it will be incredible, because these people are dedicated to changing the world in the name of their baby.

“We’re going to make a difference,” Tammi told Albom. “That’s what we’re committed to – the entire family – and we’re going to make that Chad’s legacy.”