When I was diagnosed with chronic myeloid leukemia (CML) a few months ago, just before Thanksgiving, my first response was, “Crap”. Those of you who know me well might guess that a few other colorful words may have been included at the time. But one day my kids will read this, so that’s what I’m going with for now. My initial response was largely one of fear. Fear not so much for what the diagnosis might mean for me, but for what it could mean for my kids and my husband. I had long ago promised (one might argue "threatened" is a better word) all of them that I would be around for many more decades. I did not want this diagnosis to make me break those promises. I had, and still have, every intention of telling embarrassing stories at their future weddings. To be clear, I’m referring only to the kids’ weddings. Martin is stuck with me.
My knowledge a few months ago about CML was pretty limited. The last time I encountered CML was during the early stages of my medical training (a looooooong time ago as my kids would say). Back then, there wasn’t very much that could be done, and virtually all patients with this disease had only a handful of unpleasant years left. No medicine then available could offer anything more. But since then, critical research has changed that outcome. Just about 15 years ago, a new medication was developed that changed the future for patients with CML. A medication that targets the specific way this cancer works. And with it, most people with CML now not only survive, they can generally expect to live. And not for just a few years, most can now expect a normal life span.
One pill a day controls and shuts down my cancer. One pill. Every day. No IV chemo. No ports. No hospitalizations. No surgery. No pain. No bald head. Just one pill a day. Granted some of the “side effects” (otherwise known as “effects”) of the pill are less than pleasant, and there is a long list of “uncommon but super unpleasant things that could still happen”, it definitely beats the lack of alternatives from the past. The pill does not cure the cancer, but it controls it. While I’d prefer the term “cure”, I’ll accept the idea of “control” for now.
I’ve seen too many family members, friends and patients diagnosed with cancer in one of its many toxic incarnations. I’ve seen them go through their treatments. Their chemo. Their surgeries. Seen their pain and fear. Some have died. Fortunately, many have survived.
And that’s what this is about. It’s about survival. It’s about living. Not for me, I’ve been ridiculously fortunate to have developed one of the few forms of cancer that some brilliant researchers have already figured out how to control. It’s about working so that others can survive. That others who have, or may one day get, cancer have treatments that can cure it, or at least control it. It’s about working to make sure that others benefit from still needed cancer research.
For me as a father and as a pediatrician, I worry most about the kids who face this. If they face a cancer diagnosis, they should get the same good news I did: "We've got something that can treat this. Something that can take care of it and make you well again. And it's going to suck way less than you think it will. Oh, and it's not going to kill you. You're going to be around for a long, long time." My kids know I take a medicine every day because my blood forgot how to follow the rules and that the medicine keeps me healthy. That's what I want for everyone with cancer. But particularly for the kids.
So that's what this is really about. It's about kids. My kids. Your kids. Your grandkids. It’s about the kids or grandkids you might have one day. It's about the kids in your family. It's about the kids you know. It’s about the kids you’ll never know, in cities you’ll never visit. It’s about working so that if the Universe taps them on the shoulder one day with a bit of crap news about an unexpected cancer diagnosis, that someone, somewhere, has already completed the research needed so that there is a medication or treatment available to treat their disease. A pill. For them. To control it, and maybe even to cure it.
So here's why I’m sharing this very personal story, one that I would frankly otherwise not have been inclined to share on a large scale: on March 12, 2016 I will be having my head shaved (something that the old drugs would have done to me for “free”) to help raise money for the St. Baldrick’s Foundation for childhood cancer research. St. Baldrick’s has raised over $118 million for research for childhood cancer in the past ten years. Their research grants help fill crucial funding gaps at medical institutions where children are treated for cancer. They are world's first and largest volunteer fundraiser for childhood cancer research.
St. Baldrick's does an amazing job raising much needed money to support critical cancer research. And I want to help them raise even more money. I’d like to help them raise as much money as I possibly can for children’s cancer research.
Please help me do this. Help me by clicking on the "Donate" button, and make a donation of any amount you can afford.
To be clear, I have every intention of keeping my promises to my kids and my husband by being around for a very long time to come. The fruit of cancer research from the past is allowing me to keep those promises. Please help me help the researchers of today get the funding they need so they can develop the treatments and cures that will allow children with cancer, whether they have it now or in the future, the same long lives many of us, myself included, used to take for granted.
