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.

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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.

8 thoughts on “It’s the Lack of Hope that Hurts DIPG Kids the Most

  1. Christina Wascher says:

    We do have HOPE! Prof Steven Gill and Dr Stephen Lois at Bristol in the UK have developed a treatment which is extending survival time. Currently children are being treated on ‘compassionate’ grounds but some more funding is needed to get it into trial. It’s true that it is not suitable for all children but that is purely because of concerns for the child undergoing the treatment. There is also HOPE in a immunotherapy treatment in Koln, Germany.

    Thank you for your beautiful article which expresses the sadness and helplessness feelings of a DIPG diagnosis. Together we can make a difference #TeamEndDIPG

    • Vickie Scraper says:

      Unfortunately, American parents can only use those options in Europe by paying their own way. The treatment in Koln costs the equivalent of $38000…each. Insurance won’t cover. Add travel and lodging and time and expense of passports. Not really a viable option for most. And…you said yourself, it’s buying time.

  2. Paul Cozzi says:

    Chrissie, Thanks for writing the article on DIPG. My son Camron was diagnosed on Dec 22nd 2015. We are just now starting our ugly fight with this horrible disease. What you write is exactly true. I feel so hopeless and inexperienced. Hundreds of children die every year and prior to December 22nd I had no idea this form of cancer existed. I assumed there was guidance and help for all medical issues but I’ve learned this is not the case. Yes the medical field offers you options, one, two and three, all of which have the same end result. We have many supporting friends helping us with additional options, but I feel like I am the expert and making decisions to which I am not qualified. We have a horrific battle in front of us and most times I feel hopeless even though my son’s see’s me differently. Thank you from the bottom of my heart for bringing light to find a cure for DIPG. No Child should ever have to experience this in thier lifetime. God Bless every family and child who has experienced this ugly disease. May God provide them peace and comfort.

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