Journey Home
In 2016, I knew our best chance of beating cancer was now behind us. Therefore I wanted to capture the ride home and the transition back to school. The day after my medical blog update in 2016, I sent out another to describe more about our last trip to Pittsburg.
February 28, 2016
How do you explain the ramifications of getting kicked out of a clinical trial to your ten-year-old son? Prayer, blood shot eyes, and warm tears.
The doctor turned to Josiah and told him that the tumor was growing, “You won’t have the vaccine anymore. You’ve been great. Give me a fist bump.” (Or something like that… my brain was toast and quite scrambled.) I told him thank you and shook his hand. I then help Josiah into the transport chair and wheel him out the door.
We pass by the first elevator. It is the one we always take to go down to take the vaccine. He asks, “Dad, why are we passing the elevator?”
“Son, we’re heading home. We are not getting the vaccine anymore. Remember?”
“Oh yeah, right.”
We go down the 9 floors and head to the car. Once we are in, we catch eyes. “Dad, I just want to play video games again!” He finally bursts into tears and we both sob.
We drove out of the hospital at noon. Normally we are racing out of there to get to the airport on time… skipping lunch. But now we have six hours to pass and neither of us is hungry. I suggest we go see a movie to pass the time. He nods silently in agreement.
We’re both quiet. I’m doing my best to hold in my emotions. But I know myself, so I confess, “I don’t do a very good job hiding how I feel do I?”
“Nope dad, you don’t.” Kind of hard to keep those dang drops of water in your eyes and drive at the same time.
I find a movie theater close to the airport. “Kung Fu Panda 3 starts in an hour and a half.”
“Sounds good to me.”
“I know you’re not hungry but the nurse said you should eat some dairy coming off the anesthesia. So let’s get a blizzard.” Josiah gave me an affirmative reaction, and we had an extreme chocolate explosion to take our minds off things.
After slowly drowning in our age appropriate liquid lunch, we decided to check out Barnes and Noble. It was the perfect escape. Big enough to hide so I could express some on my bursting heart and empty enough that I could easily keep tabs on him. Time blew by and Josiah found a fun book.
So then it was movie time… bottom line: good flick. (Note: a major theme was about being a good father so yes, more tears.)
I give you that breakdown to tell you the following: after we made it back in the car, Josiah then asks me how long he will have to be in the ICU with the tube sticking out of his head feeding him radiation. I shook my head. How long had he been thinking about that and what else had he been thinking? I told him there was no hospital stay in the future. We were not doing that clinical trial but the one using chemotherapy. He burst into tears.
Between heaps and sobbing he said, “I’m so relieved. I was so scared about having brain surgery again.”
I grabbed him and held him tightly. No more surgeries for you. I decided to go ahead and cry a little more… you know, just so he wasn’t crying alone. (ha.)
But the fact that he had held his fear in so long just saddens me more. He is so courageous and so brave but he also internalizes so much. I am thankful he got it out but wonder how much more he is stuffing down.
He can only hold so much in.
March 2, 2016
Fast-forward to today; it was a rough day at school. It wasn’t the teachers, the kids, or the school work. It was all the above plus the weight of the weekend on his mind. After a difficult morning, his awesome teacher asked if Josiah would like to see if I was available to give him a break.
(So grateful for a super flexible job and understanding employer!) I left right away and picked Josiah up. He looked at me sheepishly and actually apologized for having me pick him up.
“Dad, I understand if you have to take me back to the airport. I’ll just hang out in your office.”
No way. I affirmed that it has been a super tough week and we were getting a treat.
“But Dad, I don’t deserve a treat.”
I smiled at him. What do you say to that?
I kissed him on the head and told him he deserved far more than just a treat. But a treat was all I could give him.
We have a couple of appointments tomorrow morning at Children’s National. So I’ll have more information about next steps and expectations soon. So thankful they were able to move our appointment.
Thank you for continuing to walk this difficult journey with us. We are still praying for a miracle. Getting kicked off of the Pittsburgh trial will just go to prove that it was God who healed him. He has been and is our only hope for Josiah’s health.
We bend. We flex. We cry. We smile.
Before I move on from these memories, I would like to capture one more. After the movie and car confession, we drove to the Pittsburgh airport. I turned in the car and wheeled Josiah up to the terminal. We struggled through the metal detectors and made our way to our gate.
We had plenty of time to spare. I told him since this was our last trip to Pittsburgh, he should get a memento. The airport gave us plenty of options. As I wheeled Josiah through the shops, I suggested things that I thought he would like. We were looking for things that would help bring up the good memories of our time here. He had free reign to pick and choose.
Josiah knew the Dallas Cowboys are my favorite football team. We had celebrated and berated the team for years. So his young mind chose a new cord to make another memory together. He picked a Steelers thermal mug.
The hated Steelers. They have more trophies than us. They stole a championship from us. My boy glowed when he picked the mug. He shook off my displeasure with a coy grin.
“This is perfect.”
My retort, ever so eloquent, “Whatever dude.”
I love my boy. I hate the Steelers. So what a perfect memento to remember the celebrations and disappointments found in Pittsburgh.
#sporthate #sportlove #familyforever
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