When young, and especially into the teenage and young-adult years, most people tend to have a feeling of invisibility.
Nothing can or will ever hurt you and nothing will ever derail your plans for a healthy and prosperous life.
A little age and experience have a tendency to teach the fallacy of these thoughts, but these thoughts can sometimes creep back into one’s mind during parenthood: nothing can or will ever hurt my child or derail their plans. They will be perfect in every way.
Once again, experience tends to bring these expectations back down to earth as our children skin knees and bump heads on every table they encounter, and yet, we tend to hold onto these expectations when it comes to life’s bigger complications. We expect the best for our children and work hard to make sure they receive the best. We recognize that there are many things out there that could harm our children, but tend toward the, “That could never happen to my child,” attitude.
This was my view of life up until November 2016.
But this story isn’t about me …
In June 2016, life was good; one might even go so far as to believe life was perfect.
I was 27, and I had recently been hired for a new job that I absolutely loved, I had a beautiful wife and two beautiful children who were healthy and strong and loving life. We had just moved to a new town and were getting settled into a new home. Things were off to a great start and we made the most of a busy summer with my new job while my wife, a teacher, was off for summer break. We spent time with family, went on day trips to fun places, and spent lots of time playing with good friends.
Life was good.
Fast forward to October 2016, and we’re spending a day in Branson, Missouri, at Silver Dollar City with grandparents. As always, when you’re at Silver Dollar City, it was a long, but fun day, and the kids were thoroughly tuckered out. As we were walking up yet another hill toward the exit, my mother asked me if my 2-year-old daughter, Addy, was OK because she seemed to be walking a little funny. It was nothing extremely noticeable, but as I watched her, I noticed she had a little hitch in her step every once in a while. Not thinking too much of it, I chalked it up to being tired and having gone through a growth spurt recently. She was probably just still growing into her new height, I thought, but I decided to keep an eye on her over the next few days. Nothing could actually be wrong with my child, right? That just happens to other people’s children; not mine.
A couple weeks went by and that hitch grew into a missed step, a stumble, a fall. Almost daily, Addy was having more trouble walking.
Trouble walking grew into a tremor in her hands, and then she was having trouble feeding herself because all her food would fall off her fork or spoon before it made it to her mouth. A few more days passed and she couldn’t walk down the hallway without holding a hand or feeling her way along the wall. We were worried, to say the least, and made a point to bring it up with her doctor at her checkup the next week. I was scheduled to be at a conference three hours from home on the day of Addy’s appointment, so my wife took her and spoke of our concerns with our doctor, who has known each of our children since the day they were born. The symptoms he saw when he met with Addy that day concerned him greatly. He informed my wife that he was going to be calling Arkansas Children’s Hospital (ACH) to consult with them and that she would likely need to make the drive from Rogers to Little Rock for an MRI, but that he would call her to confirm that he had been able to make the appointments on short notice. For the time being, he recommended she take the kids home and pack a bag just in case. When my wife called to update me on how the doctor visit went, I could hear the fear and panic in her voice. We agreed that I should stay where I was since she would likely be making the trip to me, and then we waited to hear back from her doctor.
PRAY FOR AUBREIGH: World prays each day at 3:28
It didn’t take long for her doctor to call and tell my wife to get on the road to Little Rock because they were expecting us for an emergency MRI. She immediately loaded up the kids and started the three-hour drive. Once I knew she was on her way, I headed to ACH to see if there was any paperwork I could get done before they arrived so things wouldn’t be delayed once they got there; there wasn’t. So I sat, and I waited. Time never moved so slowly. It was about to slow down even more.
Once my wife arrived with the kids, we were checked in through the emergency room and placed in a private room to wait. And that’s exactly what we did. We waited and waited. And then we waited some more. Unfortunately, an emergency case came in and the pediatric anesthesiologist who was scheduled to help with Addy’s MRI was pulled to help with an emergency surgery. We were finally moved to an overnight room around 2 in the morning.
Later that morning, Addy was finally sedated and went back for her MRI. One again, we waited. The MRI went well and she woke up hungry as she hadn’t been able to eat anything since before she arrived the night before, and it was now nearly noon on Saturday, Nov. 12, 2016. Again, we waited.
We waited until that evening when a team of doctors came to our door with grim faces. We sat there and listened as they showed us images from the MRI and used big words and complicated phrases we didn’t understand at that time. The short version, they were fairly certain our daughter had a tumor growing in her brain stem, it was aggressive, there was no treatment and therefore no cure, and it was going to take our little girl from us in a matter of months. We spent the next week in the hospital hooked up to machines and wires being monitored and woken at all hours of the night by kind nurses just trying to do their jobs. Scans were sent to St. Jude’s for second opinions and we were released after a week with a two day reprieve before a scheduled biopsy. Our little girl was going to have brain surgery at the age of two to confirm that she had a monster in her head named Diffuse Intrinsic Pontine Glioma (DIPG).
Pontine Glioma (DIPG).
(Story continues below this emotional video of a mother saying good bye to her son)