Our Story

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Have you ever heard of Diffuse Intrinsic Pontine Glioma (DIPG)? Unless you’re a doctor, researcher, or family member of someone affected by the disease, the answer to that question is likely “no.” Our family had certainly never heard of DIPG until our dear son, Christopher Ranell Brown, was diagnosed on June 18, 2019.

Chris – or “Mister,” as we liked to call him – was an amazing child. I know everyone thinks their kids are amazing, but he was truly someone special. He was different.

When I think about Mister, the first characteristic that comes to mind is his tremendous kindness. He was the kind of person who loved to help others. He loved to share. He was the kind of child who would give away beloved toys to friends who didn’t have any at home. The kind of child who befriended those who were different and helped them when they were struggling. The kind of child who didn’t choose toys for himself when offered, but instead picked them out for his brother and sister. The kind of child who, every time we saw a person holding a sign on the street would ask, “Mommy do you have any money to help them?”

In some ways, Mister was wise beyond his years. He was an old soul. His greatest priority was always family. Although he had many friends, he never asked to have play dates on the weekends or to go to a friend’s house; Mister always wanted to spend time with family. When he asked to go to special places like Sky Zone or the park, it was always with his brother and sister. Whether it was game nights, watching movies, bike rides, sleepovers, or camp outs in the living room, Mister always wanted to be surrounded by those he loved.

Chris was a bright light, and it never took anyone more than a couple of minutes to see how special he was. He was so happy. When he smiled, he had a sparkle in his eyes that could light up the room and brighten anyone’s day. He had this infectious laugh; when you heard it, you couldn’t’ help but to laugh yourself. And he loved to make others laugh. With his silly dances, goofy faces, and rambunctious nature, it was one of his greatest joys to make people laugh.

Then one day, everything changed. Chris had a few symptoms in the weeks leading up to his diagnosis, but nothing that we felt was alarming at the time. He had some headaches in the mornings, but never severe enough that he wanted medicine, and they always went away after an hour or so. He seemed to be a little less coordinated than usual, but it was hit or miss, and he was a pretty clumsy kid to begin with (he took after me in that way). Then he seemed to be walking with a limp, but we thought is was the shoes we bought him that were a bit too big. Looking back, we should have known something was wrong; we should have put the pieces together. But you know what they say about hindsight. In the end, it wouldn’t have mattered.

On June 18, 2019, two days after a wonderfully uneventful Father’s Day, I was sitting in a meeting at work when my mom called me. She was watching the kids while my husband and I were at work. I didn’t answer, but soon got a text that read, “Call me asap, something’s wrong with Chris.” My heart sank. I excused myself from the meeting to call my mom, and she told me Mister had been crying all morning saying how badly his head hurt. He was dragging his right leg when he walked; he couldn’t use his right hand to eat his cereal; the right side of his mouth was drooping. I told her to take him to the emergency room and I would meet her there. I stepped back into the conference room to gather my belongings and let my coworkers know I needed to leave; something was wrong with Chris. Trembling, I left the office, called my husband and told him to get to the hospital.

As terrified as I was, I never could have dreamed we would receive the news we did that day. I thought, at worst, he was having a stroke. Strokes are bad, but they can be treated. You can make a full recovery. 

I arrived at the hospital and they took Mister for a CT scan. We waited in that little room for what felt like an eternity. When the nurse finally came in, she said the doctor would talk to us outside the room so that Chris wouldn’t be scared; that’s when I knew it was something awful. All I remember the doctor saying is, “We found a tumor on his brain stem.” I collapsed, sobbing. “I can’t lose my baby,” were the only words I could muster. 

The next several hours and days were a blur. Mister was transferred to Riley Children’s Hospital, where we spent the next few days meeting with doctors, nurses, social workers, and therapists. It was there that we learned his prognosis. 

Nine to twelve months. That was the average length of survival for children with this disease. 

Nine to twelve months. 

Surgery was not an option because of the tumor’s location. The only treatment was radiation and a host of clinical trials if we chose to go that route. 

But the bottom line was this: your child will not survive this. Take him home and make memories.

So that’s what we did. We had game nights, and movie nights. We visited the zoo. We went to the fair. We took a trip to the beach. We did everything we could to make the most of our time with Mister.

And we prayed. We had so much hope. Despite the prognosis, we thought Chris would be different, as he was in every other way. We thought he would be the one to beat it. We thought God would use our story as a testimony to show that all things are possible through Him. That He still makes miracles and He still moves mountains. In the end, God did give us miracles, but not in the way we’d hoped. 

My employer was amazing from the very start. When I told them of Mister’s diagnosis, they were heartbroken right along with me. They were so supportive. My boss let me work from home (before working from home was a thing) so that I could spend as much time as possible with Chris and be there for all of his appointments. That was our first miracle. 

Meanwhile, Chris immediately started on steroids to control the swelling in his brain caused by the tumor. While the steroids did their job, they also wreaked havoc on his body. He was so tiny before all of this. The steroids made his body swell and caused an insatiable hunger. His weight doubled. He developed acne. He had muscle pain and weakness. The sleep apnea we’d had corrected with a tonsillectomy the year before had returned. He looked like an entirely different child, although still as cute as a button. Despite all the side effects, and despite his physical challenges, he was still Mister. He was still our same sweet, caring, funny little boy.

Chris underwent 6 weeks of radiation. The doctors told us in the beginning that the radiation would hopefully stabilize the tumor and keep it from growing temporarily. Low and behold, the tumor shrank! Miracle number 2. 

Chris returned to school after completing radiation, something the doctors said he would probably never do. We were granted a Make A Wish trip to Disney World. With lots of diligence and persistence, we got Chris into a clinical trial in New York that only accepts 3 patients per year; and our wonderful friends and family helped us raise enough money to be able to afford the trip. Miracle, miracle, miracle.

After the treatment in New York, Mister was not doing well. He had completely lost the ability to stand or walk. He couldn’t bear any weight on his right leg and could hardly move it at all. He started intensive physical and occupational therapy, but it didn’t seem to be working. 

On December 5, we received the results of Christopher’s post-treatment MRI. It was not good news. The tumor was growing again. We were sent home utterly devastated. The one treatment we thought would be his best shot didn’t appear to have done any good.

We celebrated Mister’s 9th birthday on December 17. It was wonderful! He got everything he wanted (and then some). He wasn’t attending school at that point, but his teachers arranged a birthday party for him in his classroom, complete with handmade birthday cards from all of his friends, cake, music, and even presents. Back at home we had a family celebration featuring his favorite dessert: cheesecake. 

Despite the tumor growing, Mister seemed to be improving. Some of the weight was coming off because we had been decreasing the steroids, he was able to stand on his own again, and seemed to be more cheerful. 

On December 19, we saw the local oncology team to run some tests and get him started on another clinical trial. He needed to undergo another MRI prior to beginning the study and had to get blood drawn and an EKG. Chris was such a hard stick, so they couldn’t get all the labs they needed that day. We were asked to come back the following day to finish things up.

On our way back to the hospital on December 20, we received a call from the doctor. I’ll never forget what he said next: “I have good news. Christopher isn’t eligible for this trial because his tumor shrank.” I was in disbelief. Not only did the tumor shrink, it was measuring smaller than at diagnosis! The doctor wished us a Merry Christmas and sent me the images via email. He was right. Yet another miracle. And boy did we ever have a Merry Christmas!

Mister was stable for roughly a month after we received those results. He was able to start walking again with the assistance of a walker. He went back to school for a couple of hours a few days a week. Things were … good. 

Then Chris started having trouble with his vision. He was dizzy and having trouble seeing out of his left eye, and his eyelid was drooping on that side. An MRI showed no real changes to the size of the tumor, but something was amiss. 

Then a couple of weeks later Mister’s right eye started rolling outward. This time the MRI would show that the tumor was progressing.

We were worried, but we had been here before and God had provided a miracle. We were confident He would do so again. We increased Chris’ steroid dosage, but it didn’t seem to help. He was still having blurry vision and dizziness. None of the medications were controlling his symptoms.

We got him started on another clinical trial in Cincinnati, but by that point, things had gone pretty far downhill. Chris had lost the ability to stand or walk independently again. He was having intermittent issues with incontinence, particularly at night. He was more sluggish.

Slowly, Mister continued to decline and was placed on Hospice. The process was not pretty. He started to have trouble feeding himself. Then he lost all function on the right side of his body. His breathing worsened and he was placed on oxygen. He couldn’t make it to the bathroom at all and was totally dependent on adult diapers. He could barely talk. Eventually he couldn’t even hold his head up anymore. 

Finally, in the early morning hours of April 8, 2020, I woke up to hear Chris struggling to breathe. It sounded like he had liquid in his lungs – like there was something he needed to cough up but couldn’t. I called Hospice and we tried various manipulations to make him more comfortable – propping his head up, increasing his oxygen intake, giving him medications to steady his breathing and relax him. At one point I asked Mister, “How are you feeling, honey?” and he said, “Good.” I told him I loved him and sat next to him stroking his hair for a bit, and he went back to sleep.

Around 9:30 a.m., I was sitting in the room with Mister when I heard him stop breathing. We called the paramedics and they worked on him for nearly an hour, but there was nothing they could do. Just like that, he was gone.

There are days when I wish I still didn’t know what DIPG is. That would mean that Christopher was still here; happy, healthy – alive. There is such an emptiness in our lives without him here. Our family feels incomplete. It’s an excruciating, unimaginable pain that no family should ever have to deal with.

In a perfect world, there would be no DIPG, no childhood cancer. In a less than ideal situation, there’d at least be a cure. But we’re a long way off from making that a reality. Still, we knew there had to be something we could do – some way we could help others and give purpose to this nightmare we’ve been forced to live. But how?

I talked earlier about miracles. Though we didn’t get the miracle we wanted, we received miracles nonetheless throughout our journey. The tumor shrinking, Mister returning to school, the trip to Disney, the access to treatment – those were all miracles for which we will forever praise God. 

In Matthew 5:14-16, Jesus said: "You are the light of the world.  A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven."

I believe Mister lived in this way. His light was so bright, and it shone on everyone around him. While Chris is no longer here, we can pick up his lamp and shine it for the rest of the world to see in the name of Jesus.

How do we do that?

By serving others and helping those in need, one small miracle at a time.

We do this in a number of ways:

- Food and toy drives

- Blessing bags for those experiencing homelessness

- Random acts of kindness

- Above all, living a life that embodies Mister's spirit of generosity

Chris loved to help people. He was selfless, compassionate, giving, and kind-hearted. It is a tragedy that we will never get to see the wonderful things he would have done; but to honor him, we can dedicate our lives to helping others one small Miracle at a time — for Mister.