When a parent receives the devastating news that their child has Diffuse Intrinsic Pontine Glioma (DIPG), they also learn that there is no viable treatment plan.
That means the responsibility of researching options and choosing the mode and method of treatment lies directly on the shoulders of the parents. Not only are these parents unqualified, they are going through the most emotionally-ravaged time in their lives.
Buddy Miller was diagnosed on January 10, 2017, and his parents, Brad and Jeni, experienced exactly that. They took Buddy to C.S. Mott Children’s Hospital for radiation treatment and then were left with no next step.
The ChadTough Foundation honored Buddy at the Inaugural Champions for Change Gala, where the Director of the National Institutes of Health (NIH), Frances Collins, was the keynote speaker. Brad and Jeni were in the presence of the Director of the NIH, pleading with him for answers because they had nowhere to turn.
“We tried London, we looked at Dr Souweidane (Sloan Kettering), we looked at others,” said Brad. “The two main things that were going on nine months ago were Dr. Souweidane administering the medical agent through the skull with the catheter for the treatment, and the London treatment where they put four catheters to administer the agent.
“We were told on both of those options, trials, that we weren’t eligible. We could wait and see what happens, we could get radiation at Ann Arbor.”
A Difficult Decision
Brad and Jeni were at a crossroads. Looking at Buddy, he was seemingly normal. He responded well to radiation and was — by all outside accounts — relatively healthy. To sit by and allow DIPG to re-emerge was not an option for them.
Turned away by trial after trial, they finally settled on treatment in Mexico, which comes with an entirely new set of difficulties. As opposed to the trials in the United States and London they were looking at, the Mexico treatment did not disclose the drugs being administered.
At that point, however, it was the only option they had.
“They take 10, 12 different drugs — what we call a cocktail of drugs — and they refuse to tell us what the drugs are,” said Brad.
Buddy is now on his 7th treatment and his family’s reality is not getting any easier.
“Every second of every minute of every day for the rest of our lives!?!” wrote Jeni on the Team Buddy Boy Facebook page. “I’m not sure how one can do this for forever. 10 months of stress, depression, anxiety and fear has really taken its toll on me. DIPG has consumed each and every breath of every single day. I have changed, not by choice, by force. This change is not for the better.
“I am no longer the mom, wife, or friend I use to be. I try. On the eve of our 7th trip (to Mexico), it just does NOT get easier. My stomach is in knots, my heart is racing, the lump in my throat makes it difficult to swallow, the tears, I can’t hold them back. My head hurts from crying, my body feels as though I have been hit by a truck, twice!!”
Buddy and his family are experiencing a dual reality right now. On one hand, Buddy is doing well. He is attending school, playing sports, and enjoying his sisters and pets.
“He started third grade,” said Brad. “January 11th, when he fell, was the last day he spent in the second grade. So he missed a half a year of school.
“They decided that, instead of putting Buddy back in second grade where he should be because he didn’t finish second, they put him in third grade with his friends. They have different teachers doing different things helping him try to catch up.”
The support the Miller family has received from the community — Buddy’s school included — has been overwhelming. Everyone has come together to raise money for Buddy’s treatment and to honor him whenever possible.
“It’s absolutely amazing to me to sit back and go, okay, in January if someone told us we’re going to need a quarter million dollars by the end of the year to get treatment for our son, I’d have laughed,” recalls Brad. “I wouldn’t have thought it possible.”
But a quarter of a million dollars has been possible for the Millers thanks to family, friends, community members, and even strangers.
“A quarter of it has been just been family and acquaintances that have identified with our situation, even though they don’t have a child with what we have, and have just sent money to a GoFundMe page that was set up by a friend of mine at work,” said Brad.
“My sister set up a YouCaring page. I think those raised roughly $80,000-$90,000, plus we probably received $10,000-$20,000 in the mail — people just sending us checks. We’ve done numerous fundraisers, one being Team Buddy fundraiser where we did a silent auction that raised $48,000, that was back in February.
“Then we’ve done numerous small little fundraisers, from car washes to lemonade stands.”
A Never-Ending Struggle
As much as the fundraisers are heartwarming and helpful, nothing takes away the fact that they are in a never-ending battle with DIPG. As Jeni mentioned in her Facebook post, it is, “Every second of every minute of every day” for the rest of their lives.
Their world has been turned upside-down with treatment options and treatment plans, travel, and a desperate attempt at normal.
“The further out from diagnosis we get, the more nerve-racking it gets,” wrote Jeni. “The uncertainty is greater, the questions are more difficult, and the answers are, well there aren’t any.
“From diagnosis up to 9 months is mapped out after that, nobody knows. Hard to believe you can worry more, and that the hurt can go deeper. We give our worries to the Lord and have strong faith that he is in control and will guide. However, this does not take our feelings as parents of a terminally ill child away.
“You can not love a child with every fiber in your being and not worry with a diagnosis like this. Please pray for strength for us as we continue this journey.”
You can follow Buddy’s story and offer support by visiting the family’s Facebook page, Team Buddy Boy – Braden Miller, warrior of DIPG.