Strong as Steel
“Strength for this type of journey is found in release not control.
I “held it together” for most of this trip. But the ability to do so was supported by many tears.”
Roadtrip
After considering all the different clinical trials for Josiah, we chose one that treated the cancer like a virus. I believe the body, mind and spirit are the most important factors in battling disease. A strong physical body, mind and spirit will give any person a better opportunity to defeat any ailment. The Pittsburgh Children’s Hospital trial had developed a “vaccine” that was injected so that the body could learn to fight the cancer on its own.
July 8, 2015 — Children’s Hospital of Pittsburgh
We began the trial right away. The following is my description in the blog:
He will have two shots in his leg. One will be the vaccine and the other is an immune system booster. For you nerds out there (you know who you are and you know I love you), the booster is called Poly-ICLC and it will be administered either in the leg or arm following the vaccine shot.
The main side effects are primarily localized soreness, bruising, and hard "lumps" at the injection site. If you remember how your arm and body feels after a flu shot, then this will be a very similar feeling for you. The biggest difference is the lump which can vary in size and stay for quite a while. So he should have about 2 days of discomfort with a decreased appetite. There are other possibilities of reactions but these are the most common.
Josiah will have the shot every 3 weeks for the next 6 months. At the end of 6 months, they will be able to know how well he is responding. (Although they should start seeing a response after the 3rd vaccine shot.) Until then it will be hard to differentiate between the tumor "dying" from radiation, becoming inflamed by either radiation and/or vaccine, or growing. If the tumor is responding, then he can continue getting the vaccine every 6 weeks for another 18 months.
They will be monitoring him by blood draws and MRIs. Josiah isn't a big fan of either and neither am I. They will do an MRI scan and draw blood on weeks 6, 15, and 21 to monitor how the tumor is responding. He did great on his last MRI unsedated but he would obviously rather not experience the scan. Be praying about his courage and patience with these visits in particular.
The trips to Pittsburgh are now surreal to me. It is hard to believe we went so many times. They too easily bleed into one memory. But I still vividly remember our first trip together.
We had to stay in Pittsburgh for a couple of days. The doctors wanted him close by incase there were any delayed side effects. Normally we just stayed overnight.
The following was my summary of the trip after his first treatment in the medical blog:
We then continued the "rest" piece of our schedule and went to see Minions. Not the greatest film, but it was just the laughter we needed. There is nothing better than the sound of Josiah giggling and right out exploding with laughter. Joy is healing to the soul.
Lastly, we headed over to PNC Park. A friend of mine from college (who is following Josiah's journey) got me in touch with a friend of his from medical school who practices in Pittsburgh. His friend, Jim, has a friend who works with the Pirates. So... he got us some great seats for the game. So blessed!
Driving to the park, Josiah fell asleep and had a good long nap. So once I found a good parking garage, I was able to have a good time of prayer. After journaling through my tears, Josiah woke up and we got some well needed exercise. Though it wasn't far, we took a good walk across one of the bridges that was shut down for the game. It was great to have some time working the vaccine through his leg after resting it for most of the day.
The game was terrific. We experienced a home run for the home team that set fireworks off at the stadium. We enjoyed the crowd and the beautiful view of the park. After the sixth inning, Josiah was ready (what a day!) so we walked back to the car. Then we headed home the next day.
Tucked within this medical blog post was me breaking down. Walking with my son through his first clinical trial to save his life took a toll. I don’t believe that stretches your imagination.
Strength for this type of journey is found in release not control. I “held it together” for most of this trip. But the ability to do so was supported by many tears. I was the positive and confident parent who modeled the desired behavior for my son. But I needed times of tears to be a source of strength for him..
The release of physical tears is only part of the story. For many years I have utilized a praise and thanksgiving prayer journal. I have never revealed anything I have written in it until now. I have found a better connection to God when I am able to write out these prayers:
July 10, 2015 – Prayer Journal
Father, forgive my insolence. How ungrateful I have been. What I would give to be tossing my children around the floor playing “tickle fight”. Instead I am here crying for my son… crying for me. Lord, may I soak in this time with Josiah… Your gift to me and my family. I long for him to run, jump, swim, and play. I thank You for the laughter you still give. He is Yours. I cannot make him breathe or walk or eat. I cannot rid him of what is stealing his life. May he and we experience the abundant life that you give for now and through eternity. Hold us fast. Give us strength and joy for this journey. You are Joy. You are life. You alone are worthy of my hope, glory and praise. Deo Optimo Maximo
Writing out the prayer held me in the moment and allowed me to release my emotions. I could focus on my hope in the midst of sadness. Keeping a journal that was private, until now, allowed me to truly release and not worry about filtering anything for anyone.
Living in this type of desert environment requires prayer. God is near the broken hearted and we need to feel His presence. Honest from the gut prayer is the way to experience the hand of Christ on your shoulder. He is the source of strength you need to see hope, life and the love that surrounds us.
I could be present with my son enjoying a baseball game in one of the most beautiful parks in the nation because I knew Who was holding us both. My son was always more God’s son because He gave Josiah to me. I needed to have his heart beat and I did not make it happen. I need him to breathe every second and I could never make his lungs work.
God is the only one to trust. He is the one who gave us those moments and memories. He gave us laughter in the midst of sadness. He gave us joy in the valley. He gave us moments to remember and treasure. I am forever grateful.