Thursday, October 20, 2016


It's not like I didn't realize that a relapse was possible, or that I was unprepared for bad news. I had spent the days leading up to the PET scan trying to not give in to the feelings of anxiety and dread.

Anticipating a possibility and experiencing the reality are not the same, it turns out.

The sentence that I can't get out of my brain is that the treatments are "not curative."

Not Curative.

I had let myself begin to believe that Alex had a future; that he had fought cancer an won.

Now I can't breathe.

We were told that Alex was "lucky" in the cancer lottery; Hodgkin's is the "good cancer."

There's no such thing as a "good cancer." Cancer changes you and those around you. They say that when someone has cancer, the family has cancer. That is so true.

In the beginning, we were so hopeful. Six months of chemo and then Alex would be one of the 80% who were in remission and, hopefully, could eventually be considered cured.

That was not to be. So we prepared ourselves for the next battle. Salvage chemo and a stem cell transplant. And we made it through. Alex got a clean PET scan in February, and started consolidation chemo - brentuximab, a newly approved drug to keep him in remission.

This week was a routine PET.  A new spot lit up in his chest. They showed us the scan. They started talking about what to do next. They outlined two choices - a clinical trial or a newly approved immunotherapy drug.

That's when the doctor uttered the words, "neither option is curative, but some patients have stayed in remission for a long time."

We're taking the clinical trial. It also an immunotherapy. The rational is that at some point this drug will either not work or it will stop working and then we'll move to the already approved drug. If we start with the FDA approved drug the trial won't be an option once the other drug fails. This way, we have two options.

We were afraid to ask what "a long time" means.

The reality of Alex's cancer is washing over us in waves - waves of fear and grief and loss.  Grief and fear because now we know what our son will die from. He will die from Hodgkin's Lymphoma. We just don't know when. We don't know if he has weeks or months or years. Somehow we have to come to terms with this reality, we have to shore ourselves up to continue the fight, and we have to live in the time we have left.  Juggling all of those realities seems incomprehensible at this moment.

We're not just Alex's parents, we're his legal guardians, the legal decision makers. We've been making decisions on his behalf for his entire life. Now we're faced with the reality that we'll be making his end of life decisions. I don't know how I'm going to help my son die, and I don't know how I'm going to survive.

In the meantime, we have to be strong for him. We have to support him through this. We have to be hopeful and pragmatic at the same time. We have to put his needs before our own fears.

And we have to live life in the meantime. It's truly "bucket list" time. But Alex's life never looks like someone else's, so even the bucket list idea is fraught with complications. What does he want? His life is actually pretty simple. He likes time with his family. He likes rides in the car, and watching movies, making cookies, and going out to eat. We've decided to rent a motorhome and drive around Lake Michigan.  The family trip to Disney that we were planning for next fall as an "I kicked cancer's ass" celebration may need to be moved up. I don't know if we can wait a year. Will this be our last family trip to Disney? Or will he be around long enough for another one? I don't know. He's not one for grand gestures or lots of commotion. We have to figure out how to make more family memories while we have the chance.

We've been strong for two years. We've been strong for 24 years, I guess, since he was diagnosed with autism. Always looking at the positive. Pushing aside the "what ifs" and the grief and the jealousy of what other people's kids could do. Learning that there are lots of ways to live a life of value. But at this moment, all I can see is that Alex got dealt a pretty crappy hand. His life has not been easy. But we, and he, forged a pretty great life. We've always tried to figure out "what's next" and help him reach whatever he could.

But now there's no "what's next." I'm sad, and I'm angry, and I don't have the energy to put a brave face on it for everyone else's sake.

I know I can't stay in this place. Alex is here today. And the options aren't exhausted yet. But it's hard to stomach the fact that the fight is only to buy some time, and an uncertain amount of time at that. I've always worried about what Alex's life as an old man would be, and what would happen if he outlived Jessica. Now....

None of these words adequately express the depth of my feeling. When I was in high school I worried about having to "be brave." I don't even remember what I thought I had to be brave about. Years later, my mom would remark that we didn't know just how brave I'd end up having to be. I know that one of the main reasons she was so upset when her healthcare power of attorney was enacted, putting me in charge of her medical decisions, was that she thought I had enough to worry about with Alex.  She saw Alex a few days before she died, and he was in remission and doing well. I'm glad she's not here to go through this.

I just don't know how we're going to do this - other than doing it as a family, as we've always done everything. It's time to figure out how to meet the greatest test we've ever faced.


  1. I believe you will find a way.
    I keep thinking about Alex's confirmation--how he responded, touched by Grace. It is still there.

  2. Wow, Carrie. So sorry to hear this! You write with passion; I could feel all the emotions as I read this. It's clear that you'll do everything you can for Alex to make the time he has here the best it can be. As a mom, I can't imagine going through what you're going through. Thoughts and prayers are with you and your family.