The Pot Roast — Dr. Nace Lanier

“My boy lived while dying.”

Josiah showed no improvement during his newest clinical trial. There were new changes such as slurred speech which frustrated him and made my heart plunge to new depths of sorrow. I did not see the answers to the prayers that I and many had been praying.

April 4.13.16

Sunday morning did not start well. I woke to a muffled yet clear cry for help, “Daddy!” I jumped out of bed to see a look of desperation in the eyes of my boy as he clung on to the banister with his one good arm while gravity was taking the rest of his body downward. I grabbed him and held him for a second. He squeezed me back and then squirmed out of my arms to slide slowly down the steps.
I followed behind him thanking God that Josiah caught himself. There was nothing to profit in imagining what would have happened if he had not. I wondered how much longer should Josiah sleep upstairs.
“Breakfast?” I asked.
“No”, he responded quickly.
His appetite had been decreasing lately so I wasn’t surprised. So I made my coffee and got a bowl of cereal. He went into the office to begin the Sunday morning with a little Plants v. Zombies 2.
I normally would not have my kids start their days with video games. But it has been a while since the days seemed normal. Many months ago as the weakness progressed, he bemoaned not being able to play video games. He could not swim well, he could not skateboard, and he could not run around in the creek. So the quest to adapt his playing style began, he was going to play video games.
He has successfully learned to play with a two-handed remote control with one hand. He props the controller on his lap. His ability to maneuver the player with his index finger and press one of the four “fire” buttons with pinky is impressive enough. But to play a game like Plants v. Zombies you have to aim as well. So he uses the top of his palm to adjust where the plant aims to destroy the oncoming opponent. Like him swimming with half his body up and back in a pool, it is impressive to behold his tenacity, will, and skills.

Josiah wasn’t on the game very long Sunday morning. I looked over from my kitchen island to see him go into the bathroom. “I don’t feel well,” was followed by the unmistakable sound of vomiting.
After finishing up, he took one of the new nausea medications we got when he started the new clinical trial. It seemed to have worked but going to church was out of the question. He was able to take in a fresh fruit smoothie later on, so I was encouraged. Then when it came to pot roast for lunch, he went to town: two plates of carrots, potatoes, and roast beef. Things were looking up.
Right before 3 o’clock, I was about to pick up Becket who went to a friend’s house to continue martial arts lessons. (Side note: this has been a fabulous gift to us. His friend’s dad is a black belt and is teaching his son with two friends some beginning lessons twice a week. It is so very important for Ella and Becket to continue on in life in the midst of these days. We are so very grateful for our network of friends here in the neighborhood!) I convinced a very tired eyed Josiah, he was tired and he should take a nap. He begrudgingly went up the stairs and I tucked him in bed.
“Hey, if you are still awake when Becket and I get back, then you don’t have to lay down.” This appeased him and off to sleep he went. Remember ten-year-old boys don’t nap.
5:30 rolled around and he was still asleep. I was about to make dinner, so I woke him in order for cobwebs to disappear and his appetite to come back. But things changed quickly as sharp pains began.
I won’t go through all the details of our trip to Children’s Hospital Emergency room. He was suffering through some intense, excruciating stomach pains. His mother came over to care for Ella and Becket, then we were off.
He didn’t throw up until we were in the waiting room. The man beside us got to witness what a good cook I am as we got to see the chunks of unchewed contents of the yummy pot roast meal. He didn’t say a word, but I know he was impressed.
Josiah continued to spit up “stuff” for the next couple of hours. They picked a nausea med that was not on the “don’t use” list in liquid form and injected him. He was still in a great amount of abdominal pain. Even in the bed, his preferred position was doubled over.
30 minutes after his injection, Josiah had another big vomiting session. It was a bit scary. The nurse was not within earshot as I yelled for him to no avail. Josiah was convulsing in my arms as I held him up with one hand while holding the bag to his mouth. I kept asking him to pick up his head as it was limp on his chest. I was able to use my forearm that was reaching across him to push back his forehead. Boom, out came the gravy. Did I tell you he had two helpings?
After I cleaned him up, I went and told the nurse. The team came and checked on him. They offered him coloring pages. In my head, I was like, “Really? He just puked and that is what you offer him.” So, of course, Josiah says yes.
Within 10 minutes his color was back and his dry wit was on and the coloring continued. The ER team was laughing and smiling. All of us were grateful he was finally not in pain.
They gave Josiah a CT scan. They compared it to his last MRI and knew it was larger. I knew we were not making it back home that night.

After a couple of days of observation with a new MRI and another CAT scan, Josiah left the hospital on Tuesday. But things have changed. We really don’t know how much has changed. We were there mostly just in case it would turn back to bad as quickly as it came and went. He is currently stable. We will know more as we go back Thursday including a new path forward.
You may wonder how Josiah is doing. He is a brilliant child. He knows these events are not good. When I left on Monday night to pick up the kids and put them to bed, he gave me a look I will never forget. His big brown eyes were soft and kind. They were saying "thank you and I will be alright". He initiated a gentle hug by extending his right arm towards me. I bent down and held him tight. "I love you son." A soft "I love you too dad" was his reply.
There is a lot that we don’t know. But we do know the tumor has bled but seems to be contained within the tumor and the pool of blood does not seem to be growing. The tumor has increased in size over the past month. The vomiting was probably caused by the increase in size. His old symptoms of double vision, left side weakness, and drooling are worsening. He also is now having blurred vision, a stiff jaw, and much less energy. (He is taking a nap on his own right now at 10 AM.) He is also having trouble walking around the house without assistance.
His mother and I have moved a bed to the main level in each of our homes. We will not risk him falling down the stairs. We will do what we can do. We have a lot to figure out and prepare for. None of it is stuff any parent would want to consider less construct a plan. We will know more Thursday and how to appropriately communicate with our children. The doctors have alluded to the probability that Josiah is entering into the last stages of his journey.
Your emails, texts, Facebook messages, and posts encourage us. We may not return the communication but know that they are now welcomed. My prayers are changing. I do not want him suffering as he did for four miserable hours on Sunday night. I want him to know our Savior’s peace. Please continue to pray for a miracle. I need to focus my prayers on courage to be strong for my little ones and discernment when to allow myself to be weak. We are all in the Father’s hands. There is no other place I would rather be.

Josiah did not just “die” from cancer. It was not a moment. It was not a week. It was emotionally and physically suffering and struggling moment to moment for over a year.

When someone asks me how I lost my son, I feel wrong saying he died of cancer. But even being more descriptive to say that he died of DIPG does not do Josiah justice because people do not know what cruelty that description entails. Do I want people to know how miserable my son became? I find no pleasure in retelling this portion of his journey. My son struggled but now struggles no more.

I want to remember not so much the pain but his laughter in the Emergency room. After emptying his stomach without the strength to hold his own chin off his chest, he was bringing a whole room full of medical professionals joy. We were all chuckling.

I want to remember his tenacity to learn how to play video games with one hand. He could not walk without help. He could barely go to the bathroom by himself. But Josiah could play a single shooter game blasting zombies out of existence with one hand.

My boy lived while dying. In these last days, he could not raise his own chin off his chest to keep from choking on his own vomit. But he continued to press on.

How am I living this day? What struggles and anxieties are capturing my imagination, my vision for the future? What can reorient our minds?

I think of Josiah when I put him to bed. Those big brown eyes told me how much he loved me in the midst of my inability to save him. I could only do the little I could do. His eyes and single-armed squeeze told me and reminds me now that it was enough.

We cannot solve all of our problems. We do not have answers to the deepest, important questions. But knowing we are loved and that we are doing our best is remarkably empowering.

What else would we ask from a loved one? Why can’t that be enough for ourselves? Let us take one more step today. We are loved and all we have is today.

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