Needles and Pills
“I know that I did what I could do as I trusted God to do what only God could do. ”
Over the next few months, I will record memories that are now but a blur. They have merged into one long nightmare where the details can be fuzzy but the feelings are fierce. I will highlight but a few of the details. I have no real desire to visit these memories, but believe it is important to document this season. The last few months of Josiah’s life are some powerful stories that lie behind my living image of my courageous son.
DIPG is evil. It kills in one of the worst possible ways. The tumor that grew in the brain stem would slowly paralyze the extremes of his body until it reached his core, vital organs.
I pray that you, the reader, are courageous and continue to walk with me on Josiah’s journey. The next few months were difficult to live and thus hard to traverse even now. I believe we will all be better off as I recall what was and remember moving forward in the darkest of days.
Wherever this writing finds you, evil is real. The darkness can consume. You may be feeling the pain it brings: physically, emotionally, and spiritually. We are all affected by evil in different ways and times. You cannot avoid it. We all live with it.
How we live in these days when evil is permitted to exist will matter and be known throughout eternity. I believe evil, like cancer, will end. I believe Jesus Christ on the cross won the war but allows evil to battle on. Why is the mystery revealed by His love for us. But that discussion is for another time.
In the Spring of 2016, Josiah joined another clinical trial at and through Children’s National Hospital. We knew it was our last opportunity for God to work through medical treatment. This treatment was more like what you would expect from a cancer treatment: lots of blood work and pills.
March 21, 2016
Josiah is officially on a new medicine. He was able to avoid ingesting any sort of medical tablet for a couple of months. He has been off steroids since November but switched to anti-nausea medicine for a few months. It was great not having to feed him chemicals on a daily basis (even though I am extremely grateful for those anti-nausea meds… I HATE puking!).
We arrived in DC at 7:30 on Wednesday. He took his first dosage at 8:15.
Then we waited.
“How do you feel?” was the question asked often by many all day long. He hates answering that question any way on any day. Hearing it about 100 times did not increase his affections towards the subject one iota.
They put in an IV port from which they drew blood for our first four hours. They were testing his blood for how quickly the meds entered into his bloodstream. They had a TV there to distract us and I watched more Cartoon Network programming than a man over the age of 20 (not to mention 40) should be subjected to. But he was duly distracted and braved through the uncomfortable environment (nurses, syringes, his own blood, and nice strangers asking how he was feeling).
The last part of the day were more blood draws that did not end until 5:45.
Exhausted we crawled out of the building to get in the car to roll slowly home through DC rush hour traffic. Josiah said he would rather wait on dinner and go straight to Ella’s (6th grade students v. teachers basketball) game that started at 7. Somehow we actually made it there. But when Josiah saw the huge crowd, he turned right around and limped out.
It was just too much: the noise of a gym full of roaring elementary students, an unfamiliar school (the Junior High), an empty stomach, and a wonderfully crazy amount of people who showed up to the game. It was overwhelming. I told him I was sure we would find a place to sit, but too much is just too much. He was insistent about leaving as he got back into the car.
It was not hard for me to understand. It had been a very, very long day anyway. But as we pulled away, the tears really broke through the dam.
“Daddy, I’m so sorry! I know you really want to watch Ella play basketball. You should go. I’m so sorry.”
I told him he was right. I really did want to watch Ella play, but more importantly I wanted to be with him right then and there. No other place to be as some water affected my eyesight as well.
I assured him that I understood the factors and listed what he was up against to try to go to the game. It was not his fault. He didn’t want to be at Children’s all day. He didn’t want a needle stuck in his arm all day. He didn’t want to be graciously accosted by well meaning strangers all day asking him about his feelings. We all wanted him to be a younger brother that would have had to sit with his family to watch his sister in a basketball game. Then afterwards run after the basketball on the court showing the crowd that he could ball too.
But no, we went home and ordered dinner. Another 7:30 AM show time in DC awaited us the next AM. A wonderful neighbor picked up Ella and Becket the next morning as Josiah and I waited to be seen in DC. One quick blood draw and we were on the road back. And then the next day… same thing.
But on Friday I gave him his new medicine. It was an experience like no other. I pulled out the medication bottle and double checked the label’s bold red letters, “EXPERIMENTAL”. Yep, son, open up.
I am grateful for another thing to do… something to help. But nothing can prepare you to feed your beautiful son experimental drugs. How do you do it, with a smile?
How?
By the grace God gives you for that day, for that part, for that particular impossible thing. Even though God did not save my son’s life, He was there to give us the strength to make it each day. Every day was different. Every crooked path was unique. He was always there.
Missing my daughter’s 6th grade basketball game was tough. It was very important for me not to neglect Josiah’s brother and sister. I tried to be present with and for them at every opportunity, but I could not. I could not be everything to all my kids. Truth is, I still cannot.
I had to give myself permission to “fail” them so that I could be present with their brother. I hate failure. I especially hate failing my little ones who depend on me and need me. I can never go back and be there for my daughter’s 6th grade student/teacher game. That time has passed.
But I can receive their forgiveness. I can receive the grace they gave to me to love on their brother. They could not understand everything going on, but they did forgive.
Accepting someone’s forgiveness and receiving their grace is an essential part of struggling well. Seeing the experimental drugs as hope and not a last ditch effort is found in trusting the next right thing. I could not cure my son. I could only love him that day by doing the next right thing I could do to bring him closer to life.
Giving him experimental drugs. Driving him back and forth to the hospital. Being with him passing the day along with cartoons and iPad games. Being forgiven from missing a school rite of passage. It was enough for the day. It was my duty and privilege as his dad. I know that I did what I could do as I trusted God to do what only God could do.
I now continue to live each day trusting that God has dealt with evil. He is patient to allow it so that we have time to know and be loved by Him. I want Him to end evil, to end all suffering for I still suffer for the loss of my son.
The suffering of Josiah experienced was unbearable to watch much less be helpless to stop. I cannot fully comprehend how God allowed it. But I believe, somehow, it is for love.
The love of God was known and felt by Josiah. The love of God was known and felt by us, his family. The love of God is for you to know and be felt today.
Evil exists but will not always exist. The love of God endures forever. God has given enough grace for each of us each day.
Will we walk with Him?
Today.
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