Today is Roman’s birthday. The child that refers to himself in the third person as Shark Guy, Dino Man, Nice T-Rex, Mean T-Rex, or Baby Dinosaur is 3 years old. What a total joy he is, and at the same time he is a complete terror. All of you with 2-3 year old kids know what I’m talking about.
I was initially diagnosed when Roman was two weeks old so his birth in many ways is a bit of a demarcation in our lives. I can’t imagine life without our little Shark Guy. I imagine life without cancer all the time.
Here is a pretty irreverent picture of Roman that just cracks me up. It perfectly sums him up. The first thing you have to know about Roman is he’s a one layer guy, at his best. He will either wear underwear or he will free-ball wearing shorts, but he doesn’t do underwear AND shorts very often which can lead to wardrobe malfunctions like the one below. Life can be tough.
(Camilla “suggested” I take the photo down…it was epic, you’ll just have to trust me)
Roman either has a huge smile on his face that melts your heart or he is shrieking with anger that strikes fear into your heart that you’ll never get him to calm down. Some of my favorite Roman moments are when we are trying to take a picture and someone counts “1, 2, 3 cheese” and right before they get to “three” Roman yells out something like “boobs!” or “butt crack!“. Camilla and I try to reprimand him but how can he really take our scolding seriously when we are laughing out loud while doing it.
Not much new to report on the health front. I’ve spent the past month doing some different tests and had a lung biopsy performed. We are looking at different options and trying to look into that imaginary crystal ball for answers. We’ve “emptied the cupboard” on standard treatment of care so really anything we try from here on out will be experimental or will be drugs that should slow the growth of the cancer but can’t cure it. I have a few more doctors to talk things over with, maybe another biopsy or some additional tests, and then we’ll make a decision on the path forward. Feels like the most likely thing is to go on a light chemo drug that shouldn’t mess me up too badly or potentially look at one more clinical trial experiment and then go on the light chemo. It will probably be at least a few more weeks until we decide on a path forward.
Camilla and I had a great discussion last night about some things we’ve both been feeling recently. She is just so good.
She said something to me that I hope I never forget. We were talking about the choice we have during hard times to shrink and let the bitterness of the cup make us bitter in our outlook on life, or to instead look for what we might become through the experiences that stretch our souls (we’ll get to more on this in a future blog post but here is the source material). She said:
“We have to remember that we always get to choose. We can’t be fooled into believing that the choice to turn to God isn’t there when it get really hard. It is always a choice and the more I’ve gone through and the more I’ve turned to God, the more I’ve felt the impression that for me I just need to love more. That is the key for me right now, to find ways to love more and worry less about what I’m going through.”