Pray, Love and Remember What DONE Feels Like

30 Sep

This is the last day of September, and therefore the last photo I’m posting from Jackson’s cancer journey. I hope maybe I’ve introduced some of you to what pediatric cancer looks like.

Research has made headway over the years, but if you were sat down today and told your 13-month-old had 30-40% chance of living…you’d want better options for future kids and their parents too.

Things have to get better for kids diagnosed with cancer.

What have we learned? Never take a day for granted. Our February 15, 2009 (day of diagnosis) is somebody’s today.


This photo was taken on May 8, 2010, exactly one year after Jackson’s surgery in NYC and the day of his “DONE” party. As you know, Jackson didn’t have much vocabulary during treatment. He had Mama, Dada, Hi, Bye, Uh-Oh and Done. So many times we would be in the middle of something Jackson didn’t want to do during treatment and he would look at me and say “Done.” Sitting still for blood pressure readings for the third time in a row? “Done? Done.” Cleaning out his airway after his vent came out, a very hoarse and teary “Ahh Dahhn.” Day 5 of a chemo hospital stay? “DONE. Go ByeBye!” I can still hear him say it.

So on that gorgeous, windy Spring day in our lime green shirts, we celebrated what “Done.” should really look like with a bounce house, face painting, balloon animals, snow cones and a visit from the firetruck. We were surrounded by great friends and family. I could feel God’s blessings for Jackson in the wind. It felt magical. 

But this isn’t a fairy tale. Even after such an amazing celebration and knowing Jackson’s treatment was finally over, I wasn’t near done myself. I was forever, painfully changed. How could I just go back to how we used to live before cancer? That world may well have been lived on another planet.

And so began one of the toughest transitions I’ve had to make as a mom. We were kicked out of our weekly trips to the hem/onc clinic. Go live your life, they said. You did it! But we’d grown accustomed to being at the hospital and seeing all our friends/nurses/doctors, getting reassured that things were okay. This had become, weirdly, our comfort zone.

Instead, I filled my days with taking care of Jackson, researching options for relapse and following CaringBridge and Facebook pages for our little friends still fighting. My heart, which I’d ignored for nearly 15 months, could no longer hide behind appointments, treatment, trips to the pharmacy and hospital stays.

With cancer, the body always heals much faster than the heart.

I was damaged goods. I couldn’t make the switch yet. Even though the staff had encouraged us to find our “new normal,” (one of the worst phrases ever) I didn’t know what that looked like!

If I’m honest, it took a long time. After Jackson’s first three-month checkup, great labs and clean scans, I started looking ahead and thinking about what it’d feel like to be six months off treatment and still cancer free. When would he be one year post-transplant or two years post-surgery? When was that five-year mark where we could start to relax? I needed binoculars to see it.

Then Jackson started preschool. He stayed the night at his grandparent’s house. He had Halloween without a central line or antibiotics. As each milestone came and went, my white-knuckled grip loosened. I knew what I had to do: I needed to remove myself from thinking, talking and reading about the pediatric cancer world until I could heal. I’d come back when I was ready.

And then of course…there came Abby. These sweet little miracles.

This blog, these stories, are a sign of healing. Sure at times, the thought of relapse still takes my sleep in the middle of the night. When Jackson tells me his elbow hurts or his tummy hurts, I have to calm my inner turmoil to get his labs checked. I doubt that will ever go away.

But as we’ve learned the hard way, enjoy life while it’s good and follow Jackson’s lead.

Pray and love and remember what DONE feels like.

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