September

September is pediatric cancer awareness month and it’s not letting me forget that. It’s bringing on PTSD as if immersion therapy is the only way to save my soul. Cancer has been a prominent part of my family for seven years now. So I have plenty of memories for September to prey upon.

When my daughter Grace was getting a bone marrow transplant in 2017, she and I lived in an PICU room in the bone marrow transplant ward for two months straight. All of the rooms are slightly-more comfortable versions of living inside a bubble. The children getting transplants have no immune systems. Everything had to be sterile.

We weren’t allowed to bring blankets from home like we could in the regular pediatric cancer ward. She was allowed a limited amount of toys and they had to be clean at all times. No flowers. No fresh fruit. No dog therapy visits. No children visitors. Limited adult visitors. I would stay with her almost all day, almost every day, until I forgot what the outside world was like. 

Needless to say, I went a little batty from the loneliness and the sensory isolation. Thankfully the hospital provided a psychologist who held group therapy for the parents every week. Three other moms and I went somewhat regularly. I didn’t realize it until just now, but I’m the only mom from that group who didn’t lose her child to cancer.

One of those moms was bereaved as of today. Her four year-old son Jacob* passed away after a four-year fight with cancer. He was cancer free for a only few months of his life. She was the mom I wrote about, in this group, when I was inpatient with Grace in 2017.

“...today as I ate my crappy microwave dinner in the parent kitchen I met a mom whose seven month old son has a brain tumor. I just didn’t have the heart to tell her she’s my neighbor in real life. That she lives within ten miles of a nuclear meltdown near our homes. I started mapping kids with cancer in our community after my daughter had cancer the first time, because I realized that kids will keep getting cancer unless we fight back. Because no child should suffer like my daughter…”

I wrote that almost exactly four years ago. Somehow it feels like a full circle but without any satisfaction. What frightens me is that I didn’t cry as much as I would have expected, when I learned of Jacob’s passing today. Granted, I have been grieving slowly over the last few days when his mom first announced he was dying. And I didn’t cry as much as I expected a few weeks ago when another child who was in treatment with Grace died. Again, there was plenty of warning. 

But I’m worried I wasn’t devastated because maybe children dying of cancer is becoming normal to me. There have been twelve children, who were in treatment with Grace, who have passed away. 

More likely I’m not grieving like I should because my psyche won’t let me. I might wake the emotions I’ve buried. I would be again swimming in that freezing-water-feeling I had knowing that Grace was statistically slated to die. I think my subconscious is trying to protect me from what September is refusing to let me forget.

Maybe this is the type of situation where superstitions are born. Next year, if I offer alms to the god of September, if I host fundraisers and decorate my car in gold ribbons and wear pediatric cancer foundation shirts, maybe next year it’ll be appeased and not take any more children with cancer from our community. 

I wish it was that simple.

Most of you know about the Santa Susana Field Lab, the nuclear meltdown site I mentioned four years ago. It’s dangerous. It won’t give every child cancer, but for those it touches, it devastates. The solution itself is simple. A complete remediation of the site to remove all the toxic and radioactive contamination. It was promised to our community by the California EPA and the Department of Toxic Substances Control (DTSC) to be completed by 2017. 

The California EPA and DTSC were supposed to enforce the cleanup. Maybe if they had kept their word, Jacob wouldn’t have known cancer. Obviously that’s a speculation, but it’s not unjustified either. They have failed us. They failed Jacob. 

I wish I could have done more, that I had some magic wand that would have forced our government agencies to do the right thing back before Jacob was diagnosed. I have no training as an advocate for cleaning up contaminated sites. Some days everything I do feels completely futile, like I’m stumbling in the forest among wolves. Some days I see a glimmer of hope, that not only our site would be cleaned up, but that it would set a precedent for the comprehensive cleanups of toxic sites across America.

It’s my goal that one September, maybe not many years from now, we can celebrate what was once Pediatric Cancer Month. 

*I changed Jacob’s real name in order to protect his family’s privacy.