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.

 

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.

DONATE      VOTE

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.

Brooke Healey

1 Fact About DIPG That Will Spring You to Action

vote ChadTough

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

It’s Day 4 of voting for the Infiniti Coaches Charity Challenge and it’s already felt like an eternity. Maybe it’s because I feel like I’ve learned an eternity’s worth of life lessons in a short three week’s time.

One of my roles within the challenge is to talk to families who have been impacted by DIPG. Some of these families still have little fighters among them, but most of them have already had to say goodbye. What they all already have in common is that they’ve all endured the news that their child is going to die sooner, not later.

The pieces of their stories are so similar, I can almost close my eyes and envision them. The scary wait for test results. Noticing the doctors can’t look you in the eye. Getting the official diagnosis and the devastating fact that treatment for your child’s disease hasn’t progressed in four decades. Having it sink in that your child has just been delivered a death sentence.

The anger. The loneliness. The isolation.

Jack's Angels

Learn more about Jack’s story at jacksangelsfoundation.com/

One mother described the moments that followed her three-year-old son’s diagnosis so vividly. She took him to a playground outside the hospital to let him run around for a bit. He tried, but the effects of the brain tumor were already setting in. His body wouldn’t do what it was told, resulting in jerky movements that not only prevented his play, it scared the other kids. Her heart broke as she watched her little boy want to be like all the other kids, realizing he would never be like all the other kids again.

It’s hard to imagine the pain.

It’s that pain that places so much importance on this contest, not only for the money that could go toward pediatric brain tumor research, but for the exposure this disease needs. These children don’t have a voice. It’s something I’ve heard Tammi Carr say a number of times, but I’m only just now starting to grasp what that really means.

The thing is, statistics are what is driving research dollars, but statistics don’t tell the whole story. Statistics are not human lives. Statistics are not a parent receiving the news that they will have to watch their child suffer and then succumb to death. Statistics don’t paint the picture of what it feels like to have the whole world move on while you have to watch your child deteriorate and then leave you.

To do nothing as that happens to parent after parent after parent is just not right. It’s time to do something, and taking the time to vote each day for Coach John Beilein and The ChadTough Foundation is a small gesture that could make a big change. Brilliant minds are ready and willing to find this cure, but they need the funds to do so.

In talking with one mother about DIPG and the loss of her son, I asked her what she believed to be the biggest misconception about the disease. I expected her to talk about the benefits a cure would have on pediatric brain tumors and cancers as a whole, negating the belief that researching a rare disease would only help a small number of lives. I expected her to talk about the lack of funds dedicated to childhood cancers, negating the belief that sick children are a top priority in our country.

Brooke Healey

Learn more about Brooke’s story at brookehealey.com

I expected her to talk about brain tumors as the leading cause of cancer deaths among children, negating the belief that this isn’t a huge problem to be addressed.

But she didn’t. What she did say caught me completely off guard. What, I asked, is the biggest misconception the public has about this horrific disease?

“It could never happen to me or my child.”

Think about it. That word – “rare” – can lull you into believing that you and your children are untouchable, but the truth is, you aren’t. It could happen to you. It could happen to your niece, your grandchild, your godson, your friend’s child.

It could happen to any of us.

So, as you read about these children suffering from this “rare” disease, put yourself in the shoes of their parents, grandparents, siblings, friends, and muster up the anger you would feel if you were met with the devastating fact that treatment for your child’s disease hasn’t progressed in four decades.

Then set a reminder on your phone and vote each day for Coach Beilein and The ChadTough Foundation. Your vote may end up being a small part of a big change.