Iron Man - Day 48
How a theme song helps in hard times.
Today Shepherd wraps up his fourth round of chemotherapy. Every 14 days he starts a new “cycle” and it rotates between two days of treatment or five. They let him come home in the evenings, if mom and dad can pass a test to prove they can hook up his fluids and deal with any issues that may come up while he is at home. Believe it or not we passed! This was a five-day cycle, so since Thursday last week he has had tubes connected to the port in his chest. I would go crazy, but this sweet boy has figured out how to adapt.
If I am honest, he has dealt with every piece of news better than I would. The staff at Seattle Children’s has been incredible. They understand the crippling effect of the news they are often sharing, and deliver just enough to grasp what lies directly in front of you. In our case, there are no options, just forward progress.
I recall one meeting where I went full Charlie Brown. You know how in Peanuts the voices of adults were always just incoherent mumbling? It had never happened to me before. I could see the doctor talking, but I could not make out any of the words that were being spoken. We had moved from Shepherds diagnosis, to some of the long-term effects of his treatment plan. I wasn’t ready to hear them then, and I am still not ready to share some here. As words started to come back into focus I recall the doctor explaining that one of our next appointments was to have Shep’s port installed. No options, just forward progress.
I didn’t understand what the port was, so it was a welcome distraction to direct energy to learning. Apparently, there will be so many needles putting things into and taking things out of Shepherds body over the next year, that it is easier to just install a device in his chest that is plugged into his bloodstream. He will still get some shots in the arm, but the majority of his treatment can now be “accessed” through the easy button sticking out of his chest.
My friend let me know that when his daughter went through treatment a few years ago, she took pride in her port because she associated herself with Iron Man. So after the port was installed and Shep was getting used to it, we watched Iron Man for the first time. Not only did he like the movie, and feel especially connected to this superhero, he loved the music! For the next few days he kept asking Alexa to play Iron Man, so Ozzy Osbourne was regularly serenading the family.
All things considered, Shep has done pretty well with the port. He has also taught himself to swallow pills to avoid the taste of some of the medicines he must regularly take. Every day he seems to understand more about the fight that he is in. Ashley and I are wrestling with knowing how to help him process. We don’t want him living in fear, but our hope is that he can have ownership of his part in the fight, and when he beats cancer he can live with an understanding of his strength, instead of just recalling a weird year where mom and dad made him do terrible things. There is a lot to process for a seven year old.
There are still tantrums and skirmishes of resistance when it comes time to access the port, take medicine, get shots, or some days get out of bed, but he knows it must be done. It is tough for everyone when he puts up a fight. It is especially draining for Ashley, who has had to be there for every visit. The relationship between patient and mom is both sweet and strained. Early on (it feels like a year ago, but only a month) the scene was chaotic as I would have to hold him down and restrain his arms and legs so that he wouldn’t kick or punch the nurses or his mother out of fear. Over this round of chemotherapy he appears to have aged ten years. I don’t have to restrain him, but when Shep has a hard time and he needs the extra encouragement he looks at me and says “Dad…Music!” so I keep Black Sabbath cued up for Shepherd’s theme song!
I encourage you to go listen to Iron Man today and think of Shepherd doing the hard work!
What’s the Latest…
4 of 14 scheduled rounds of chemotherapy are done
MRI confirmed the tumor is responding to treatment
Grandma Gilchrist has moved back in for the rest of the month to help out
Bruin joined Shep at the hospital Saturday and Sunday and lifted Shep’s spirits
Shoutout…
Christine Somoza
We have been incredibly blessed by a support system of friends helping get kids from point A to B during treatment cycles. Christine has consistently helped with the house to school piece, and she has made this such a special part of Winnie and Bruin’s day. Getting kids out the door for school is usually such a chore, but on the days that Christine is shuttling, you can see the joy in Winnie’s face as she steps out the door to Christine’s warm smile. It is a true blessing to witness others loving your children.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. -Romans 8:28