The Birthmark

As I lay in semi-darkness in the Cedars-Sinai cath lab, waiting for the Versed cocktail to take full effect before a stent was snaked up my femoral artery, I noticed my cardiologist through a window in the observation room; he was engaged in an intense conversation with two doctors I didn’t know. Then he came out and stood over me.

“Alex, I’m afraid we won’t be able to give you a stent today. You’ll need a blood thinner for several weeks, but your platelet count is way too low for that. I’m very sorry.”

“…Um, what does that mean?” I fumbled. “You still have to clear the clogged artery, right?”

I think he nodded gravely, but my memory had started to short-circuit upon hearing this news. “Yes, we absolutely do.” He paused for a moment.  “We’re going to schedule you for bypass surgery tomorrow morning. It’s our only option.”

Thank god the Versed was kicking in. I probably would have panicked at the thought of having my chest cavity cracked open during a seven hour procedure and my heart placed on a tray as they replaced two major arteries and then closed me back up again. Instead, I was thinking I should have left my car in long term parking. I clearly wasn’t going home in the morning…

So as I recovered during the next weeks from this overwhelming procedure—you feel like you’ve been run over by the proverbial truck, which in this case backs up and runs you over again—I had to figure out what was going on with my platelets. It turned out that the bypass was just the warmup act for the real problem: I was facing a life-threatening blood cancer that had been stalking me for several years without announcing what it was. Until now. 

MDS (Myelodysplastic Syndrome)  prevents your red and white blood cells—and platelets—from being produced in the marrow, leaving you with about two or three years to live unless you undergo a stem cell, or bone marrow, transplant.  The survival rate of this grueling procedure—your marrow is destroyed with heavy doses of chemotherapy and radiation, bringing you inches from the abyss before introducing fresh, healthy stem cells from a donor—is around 35%, but it’s the only option. There is no other cure.

I’m here writing this seven years later, so I was one of the lucky ones. But this story is not about cancer, it’s about something way more powerful. My son Michael was my stem cell donor, and without him I wouldn’t be here. It is not an overstatement to say that he gave me back my life.

He was born with a dark red birthmark (known as a Port Wine Stain) under his left eye in the shape of a crescent. It was so visible on some days that, when he was two, an older woman stopped me in a supermarket as I pushed him in our shopping cart, and boldly asked if she should call Child Services on me for hitting him. I was so stunned I couldn’t get a word out. 

After this interaction, my wife and I were so concerned that he’d be teased in school that we went to a specialist at LA’s Childrens Hospital, who recommended a series of laser treatments to lighten the mark.  After three sessions of having to hold him down while the crackling laser did its work, Michael moaning and struggling the whole time, we threw in the towel. He’d have to learn how to live with obtuse comments from strangers and peers until he was old enough to ask for treatment on his own; this procedure was way too diabolical for a child.

An unforseen consequence of this was that he developed “white coat syndrome,” where he’d go into a shell whenever he saw a nurse or doctor approaching him. He became deathly afraid of needles, which had an unforeseen consequence:  At eleven, he became fatigued and depressed, sleeping twelve hours a night, but wouldn’t allow his blood to be drawn. We were too weary to put him through more trauma, so we acceded to his private school’s demand that he be put on an anti-depressant…and then found out several months later, after he finally allowed his blood to be drawn, that he had mononucleosis! We’d wasted months of his life on a major, completely unnecessary medication. Maybe it wasn’t her fault, but the next time I ran into that nosy woman, I confronted her.  Never raised my voice, but she felt so scorched after hearing what she’d inadvertently caused that she could barely mumble an apology. Now she runs whenever she sees me.  

Back to the transplant. First, a fifteen year-old boy with white coat syndrome had to allow a medical team to insert the biggest needles you’ve ever seen into each of his arms for several hours over two days as they harvested his stem cells. Then he had to deal with the possible outcome of his father dying, and blaming himself, a common fear among donors, especially related ones. 

He rolled up his sleeves without hesitation for the first part, and then watched anxiously as I progressed over the crucial first year, ending up back at City of Hope several times with severe complications. Finally, after I made it past two years, the transplant remission period, he was able to relax.

My DNA at this point is comprised almost totally of my son’s. After six months, my blood type changed from my type-O to his type-A, which is predictable. But something totally unexpected began to appear three years later.  It leaves even my doctors gobsmacked. They have no explanation for it.

At age seventy, a faint red crescent materialized under my left eye. It became darker and more pronounced until, two years later, it was undeniable what it was.

I had inherited the greatest gift I could ever ask for.  My son’s birthmark.