July 30th will mark the third anniversary of my oldest son’s leukemia diagnosis. Three years since my entire world was flipped upside down. Three years since I thought my heart would literally break from the pain and that I would never be able to shower enough to wash the stench of fear off myself. Three years.
Three years ago, a six year old Hunter had just started chemo and his new life living as a cancer patient in the hospital.
Hunter is no longer taking any cancer-related meds. He’s graduated from occupational therapy. He’s playing catch up academically with his tutor and doing rather well most of the time. He’s making progress in physical therapy and hasn’t walked with a limp nor a cane in weeks. He appears to be pain free. He doesn’t have to return to the cancer clinic again until November when he has to undergo his thorough 3-years-past-transplant tests. They will last all day.
From the surface it might look like the cancer part of our lives is over. At least for now.
But there is so much beneath the surface. Lurking.
My youngest child Drayken, who, in theory, was too little to take in too much of what happened to his Bubbie, asked us if we were going to take Hunter to check up on his “blood cancer” on the way to Hunter’s last clinic visit. None of us have ever referred to leukemia as a blood cancer, which it is, around here. Somewhere, somehow, over the past three years he’s taken that in. What else did he take in?
My daughter, Ronin, has fears that limit her. Limit her from feeling comfortable with walking down the hall in the dark. Limit her from looking in all of the closets when we can’t find her older brother. Fears that leave her trembling and hysterical when we still cannot find her brother and end up calling 911. Because she didn’t look in the closets and was too scared to tell me that she didn’t look because she was scared of zombies. Her fears paralyze her.
And then, of course, there is Hunter who appears to be struggling on so many levels that I don’t even bother to try and list them all. But they are there and they are being dealt with as best they can be dealt with. And they lead me to believe he’s taken off in the night. And they lead me to feel scared and on edge most of the time.
When things get hard, I find it affirming to focus on my goals. To focus on the things that I want to do in this life before it’s over.
Recently we had a chance to preview a new film that is set to release in theater this Friday, July 19th. “Ways to Live Forever” is a story about life and a boy’s attempt to live as much of it as he can while he still has a chance. The main character in the film has leukemia so, needle
ss to say, many elements in the film hit home, deeply, for us. So much so that my daughter refused to watch and my son has turned down any request to watch it again (for the sake of capturing a genuine reaction from him for this article).
Sam made a list of things he wanted to do before he died and then set about doing them. In honor of the film, my children and I have also made a list of the things we’d like to do before we die. And in many ways we have also already set about doing those things. Some of the items on our list are goofy. Some are redundant. Some will possibly break your heart when you consider the source. Some were left unsaid for fear they couldn’t possibly come true (for instance, Hunter is no longer focusing on his option to marry and then adopt if his treatment proves to have left him sterile…instead he’s focusing on bachelorhood and cat ownership).
Here are some things we wish to do before we die:
Drayken, age 4:
Play lots of video games
Share with people who don’t have things
Eat a lot of ice cream sundaes
Become a man
Be a husband and daddy
Ronin, age 7:
Go to a Macklemore concert
Travel the world: Mexico, China, France, New York, Japan, California
Be a wife and a homeschool mom
Work with the FBI for at least a year
Be a lawyer
Go out in the woods and eat wild rabbit
Live to be 100
Never smoke or become a stripper (I think what she means here is to be honorable and decent and moral)
Go to college at age 15 (even taking one college course at this time would count)
Perform in a comedy act
Own a horse
Hunter, age 9:
Go to Mexico, Germany, Japan, France, Italy, and China
Be paid as an actor
Have a cat
Earn black belt (or at least a high bel
t) in karate
Mandy, age 35:
Perform in a real improv troupe in front of an audience
Pursue visual arts and create some stuff
Homeschool my kids as long as they want
Finally write that book
Stay married until “death do us part”
What’s on your list? I’d love to hear how you and your children plan to live forever! Post links in the comments!
Today they are healthy, happy children but still deeply affected by our cancer journey.
Opening weekend attendance is very important for a successful release when dealing with specialty films such as WAYS TO LIVE FOREVER. If you live in any of the following cities, please go out and see this beautiful and inspiring film about life. A certain portion of the total box office proceeds will go out to support various children’s hospitals, cancer-related charities and organizations. WAYS TO LIVE FOREVER will be showing in both Burbank and Orange, CA, New York, NY, Cherry Hill, NJ, Dallas, TX, Chicago, IL, Norfolk, VA, and Baltimore, MD.
Check out WAYS star Robbie Kay as he talks about his list of Ways to Live Forever.
To the cast, crew, producers, writers, and supporters of the film: Thank you for making this movie a reality. My prayer is that it educates and inspires a vast number of people to look at life differently and to keep fighting for scientific breakthroughs regarding childhood cancer and finding a cure. Well done!