In the early 2000s while counseling children and families in El Dorado County, I had the joy of working with Jennifer Hayes. As a supervisor, she taught me a great deal about children with attachment issues, compassionate care, and how to keep centered when collaborating with child protective services. We also share a love of writing. Jennifer now practices in Bingham Farms, MI. Her step-son Dan is currently battling leukemia. Because so many of my readers have a connection to loss, I asked Jennifer if she would share this experience, and how they are coping as a family. The following contains her lovely insights as she and her family walk through the darkness of cancer, and the moments of light that shine bright....
"When I write social media posts and blog entries I try to walk a hard to define line between offering a personal perspective and not revealing too much about myself. It is the ever present code of the therapist - keep your private life private. It binds us to silence and continually limits how and when we use our voice. Today I am going to take a risk and fully break that code.
Three years ago this April, the morning after his 16th birthday, my step-son Dan went to the ER with severe pain in his hip and odd, small red spots covering his ankle. Within a few hours they diagnosed him with Leukemia, ALL. Getting the news was literally breath-stopping. Since that day it’s been a lifetime.
If you’re going to get cancer, Leukemia is the one to get. In kids, the prognosis, especially for ALL, is excellent. You have a really awesome chance. An 80 - 90% survival rate.
So we felt lucky. Until we fell out of the awesome group. Last year on New Year’s Eve, Dan had a bad headache he just couldn’t shake. With cancer you learn, small things often turn out to be big things. Dan had relapsed. It was contained to his CNS instead of his bone marrow, which, again, had a very good prognosis. We had fallen out of the super star group, but we were still in a good one. Not quite as lucky, but still, lucky.
Two weeks ago, on New Year’s Eve, we found out Dan has relapsed again. So we keep getting kicked out of the lucky groups. We are way out of the lucky group now. Our odds are not as bright.
If all goes as planned, just in time for his 19th birthday, Dan will undergo a bone marrow transplant. If you really want to know what this means, google it. The short story is, it is a long, incredibly brutal process. I think it will make the 3 years of treatment he’s already been though look like child’s play. The year to come will be hellacious.
How do you walk through this? As my husband said, there’s no manual for this. We are looking into this dark room and we told life, “Please don’t make us go in there.” But life is not listening. How do we walk down this road? How do you send your child into this lion’s den?
You do it because you have to. Because you have no choice. Dan has no choice. The only choice in the matter is how we walk down it.
So that line resonates today. “Get busy living or get busy dying”.
We don’t know what this future holds. We don’t know if we are on the good road or the bad road. We will not know for some time. So we will live in the realm of uncertainty. Of waiting, always, for test results. To read the tea leaves of what those results mean. It’s a really crappy road to be on. We would like off. But we don’t get that choice. So we can only decide how we walk it.
What Dan has always chosen, in a stunningly compelling way, is to get busy living. Every single time cancer has come and hit him again, he has decided to live anyway. It’s not just the relapses, it’s the things he’s missed because he was too sick, it’s the bouts of shingles, losing the skin on his feet, a mouth full of sores, and spinal headaches. It’s the moment Dan, a passionate tennis player who lived for the game, found out his tennis days were essentially over because the steroids caused his hip bone to collapse. At 18 he needs a hip replacement.
Yet, Dan has always moved toward living. Toward what he can grasp rather than what he has lost. It is Dan doing pushups in a hospital gown while hooked up to an IV. It is Dan’s response to losing his hip and tennis in one fell moment. Within a day he told his dad, “I want to get a membership at the Y. I’m gonna start swimming.” Because that’s what Dan does.
There are so many ways, times, and points along this road Dan could have gotten busy dying. But he has not. He always, every time, choses to get busy living. He played in a state tennis tournament, winning an intense 2-hour match, the day after he got out of a particularly difficult hospital stay. He played a regional match on the collapsed hip, falling in pain at one point, only to get up and win that match. He got into the University of Michigan this year and got himself an internship working in a lab with Leukemic stem cells. It’s all he’s ever wanted. Just to get busy living.
Dan has never played the ‘cancer card’ to get anything. Despite my egging him on. Not even to get cuts in line at Cedar Point. Who does that? Dan, who is too busy focusing on living. He has been my role model in how to walk this road. Dan is the human spirit in motion.
We now face an uncertain future. Maybe we face an exceedingly dark road. And in the midst of that, Dan, as always, choses to get busy living. Just when he started his college career at The University of Michigan - which by the way he legitimately got into despite Leukemia and a relapse - he now has to withdraw in his second semester. To face an incredibly brutal journey. This is a wickedly hard and unfair hit for a kid whose done nothing but work everyday to get to where he is. But it is what he got. And Dan, as I write this, is making jokes with his dad over text. He stuns me every single time.
For me and my husband, what we know about walking this road is this. If you get busy living, if you go and do your life, if you still laugh and still feel the sun on your face, it helps. It normalizes you and grounds you. It pulls you out of despair and let’s you know you will keep on breathing.
The alternative is to get busy dying. To sit in fear and despair, waiting on what is going to come. When you are busy dying, everything feels so much larger and infinitely heavier. So even as the specter of death sits in the room with us whispering, really, the only option is to get busy living.
Your choices are to focus on what you have or to focus on all that you have lost - or may lose. Neither focus will change the outcome, just how you walk to that outcome. We can go living or dying. Either way, the outcome is the same. But your experience of the road will be vastly different depending on your choice.
I think this is all we can do. Choose living. Amongst this living we have our dark and desperate moments, believe me. But the living keeps us from drowning in that endless abyss. The alternative would only give all of this darkness a crushing victory. When the day draws long and you look back over your life, you will find that you either did it living or dying. You get one life. You get on chance. Don’t waste it on dying."
~To honor Dan and his journey to come, I am asking people to sign up for the bone marrow donor registry or to make a financial donation to the marrow organization. Signing up for the registry is easy and simply requires you to submit a cheek swab. The organization will mail a kit to you.
Every family going through this needs a donor. They do not do a bone marrow transplant if there are other options. If you become a donor you will give someone who is going to die a chance to live. Whatever donor we get will save Dan’s life. How do you ever measure this?
If you are an ethnic minority, please get on the registry. Due to a greater variation in tissue types, it is much harder for those patients to find a donor match, especially among African American patients.
If nothing else, please consider passing this post along to help get the message out.
Please go to http://www.marrow.org to find out more about how to sign up for the donor registry or to make a financial donation.