The New Normal: Nothing’s Normal

Jono Stories

Written by Monica Fochtman

Monica, the mom of two boys and proud partner of Sean, is a coach, consultant, writer, and speaker. Among these, she is also an advocate for childhood cancer patients. Today, she shares her experiences with son, Luke, who was diagnosed at 3-years-old with stage four cancer.

On December 12, 2008, our then 3-year-old son, Luke, was diagnosed with stage four cancer. He followed a 54-week treatment plan that consisted of various chemotherapy agents and right in the middle, six weeks of daily radiation. The treatment plan itself was a photocopied Word document. A single piece of paper became our tether and our lifeline.

When we first got the plan, we counted out 54 weeks, circled “the end” in red ink, and wrote the date above it with exclamation points and smiley faces.

As treatment progressed, we crossed off each week. It was a visual reminder of what Luke had endured and all that was yet to come. We victoriously crossed out the “I,” “E,” “V,” “D”, and “C” letters that represented different drugs Luke received.

But, as Luke got further into the treatment plan, the cumulative effect of chemo took hold and there were delays.

At diagnosis, Luke’s doctors told us, “We will take him to the absolute brink, and then bring him back.” They were right.

Fifty-four weeks stretched into 60, then 65, then 70. With each setback, the finish line became smaller and farther away. Seeing “the end” change, and change again, getting written over, whited-out and re-written became too much to bear. We finally started using pencil to mark the protocol and stopped planning on when “this will all be over.”

Although Luke’s treatment was grueling and it wreaked havoc on his body and our spirits, it was an active form of fighting back. It was tangible. It was a plan. Off-treatment was a new kind of terror; we were unmoored, weightless. With one final dose of chemo and an MRI, we were sent into the off-treatment abyss and false starts at a “normal” life. To go from the isolated and structured safety net of treatment to the freedom of off-treatment was almost as jarring as Luke’s initial diagnosis. Almost.

Off-treatment is a dance of hysterical vigilance and blissful denial. In the childhood cancer world we call it “the new normal.” The normal for us is that nothing’s normal and it’s never over. The sooner you accept the fact that your new normal is nothing like your old normal, the better off you’ll be. If Luke experiences a common childhood ailment- nosebleeds or growing pains- my first reaction is to think:

“It’s back.

It’s. Back.

This is it. We have to do this. Again.”

Fortunately, the science worked for Luke, and at this point the chances of him having a recurrence are small. It is much more likely that the chemotherapy and radiation that were used to save his life will cause growth delays, heart problems or a secondary cancer. But as his mother, there will never be a time when recurrence isn’t my first thought.

Now that Luke is more than five years cancer-free he is considered to be in remission. He is part of a “long-term survivor follow-up clinic” and will be seen by various specialists until he is 18. It’s weird to be glad that there are teams of people who will be part of your life long-term and who you look forward to seeing once a year. But, that is the reality of survivorship, the new normal that we have embraced and for which we are incredibly grateful.

Every child should get the chance that Luke did. Research will continue to save lives and make a difference in prognoses and long-term survival rates. Thank you for supporting Children’s Cancer Research Fund and making that chance possible.

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