Thriving Through My Son’s Brain Cancer Diagnosis

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Re-blogged from The Huffington Post:

I recently heard Arianna’s call for “thrive” stories from readers. I knew I had to respond because this word has been an anchor for me, my family and a growing community of parents who, like us, are fighting for their children’s lives.

My son Max was diagnosed with brain cancer on August 5, 2011 at just 4 1/2 years old. As he was rushed into emergency surgery after a diagnostic MRI, we were told only that there was a mass protruding from his brainstem, filling the pocket in the back of his brain that is normally filled with fluid. This was causing severe swelling in his brain, which in turn was causing all of the balance, speech and memory problems that had led us, finally, to this MRI.

Following the surgery (which left significant portions of the tumor in tact) and the formal diagnosis of cancer (mixed-grade glioma), we found ourselves caught in the middle of a battle between this life-threatening cancer and our team of doctors. We had no place in this fight, but to follow directions, fill prescriptions and make appointments. From our vantage point today, this was a state exactly opposite of thriving. Disempowerment, weakness, depression, anxiety. Whatever we call it, we felt as though the ground beneath us was giving way, and there was nothing to hold on to. I don’t have the adequate language to express how hard this is, how devastating it is to hear the words “your child has cancer.”

In addition to the formal cancer diagnosis, Max was unable to walk, speak clearly or move the left side of his body after the surgery. And by our second week in the hospital, we became exhausted with the feeling of helplessness. We, of course, would agree with whatever plan of treatment our medical team advised, but we also needed to be active participants in this battle. We didn’t know how we’d do it, and we didn’t know what the future would hold, but we decided in that hospital room that we weren’t going down without a fight.

When we left the hospital nearly a month after the first surgery, we decided that childhood cancer would not be a tragedy that happens to us. It would be our defining mission in life. We could never make this wrong right — no child should ever have to go through cancer treatment — but we could make this wrong count for something.

We began with diet and sleep. Or rather, we began by helping Max eat and sleep well again after the hospital experience. When we arrived home, Max found his darkened bedroom at night to be too frightening for sleep. Having just read about the importance of sleep for healing, I bought a turtle-shaped nightlight that he could control and turn different colors. The next night, he flipped through the colors until he got to green. We had been telling him how powerful the color green is because our favorite “superfoods” were green. He held the turtle up to his still bandaged head and said in his slurred speech, “Look mom, I’m healing.”

Within a month, the company that makes those turtles, Cloud b, had donated a garage full of them to us so that we could bring them to our hospital and send them out to other families we’d met online. In order to raise money for the shipping costs, we started a 501c3 nonprofit called the MaxLove Project. And, as we became more active in Max’s treatment, through diet, massage therapy, acupuncture and physical activity, we began to thrive ourselves and find ways to support other families to do the same.

Today, we’ve delivered almost 4,000 Twilight Turtles around the world, began funding our hospital’s complementary-alternative medicine program and a nutrition/cancer research fund with the St. Baldrick’s Foundation, and created a comprehensive nutrition program called the Fierce Foods Academy. Our main goal has always been to do whatever we can to help our baby boy survive and thrive against cancer. But we quickly learned that in order to truly thrive, we needed to reach out be a part of something bigger.

I never thought I’d find gifts in my son’s cancer diagnosis and treatment. It’s hard to even suggest that there is good embedded in the pain. Of course I’d trade it in a moment to take away all Max has endured. In the beginning, I wasn’t even able to utter the c-word. But today we are here and, in my mind, my choice is either to thrive against the odds or succumb to them. Today, because of this terrible diagnosis, I have made the deepest and most profound connections with my son, my daughter, my husband and thousands of moms around the world. My previously safe life simply didn’t provide space for any of this. Through cancer, we began to thrive as a family and as a community. Max’s thrive story became my thrive story, my family’s thrive journey and something that’s rippled far beyond us. It is a paradox, and one that can be quite uncomfortable to express, but we’ve been given the gifts of perspective, learning how to take life head on take very little for granted, finding purpose and fulfillment in giving back, building community and making a difference.

I now believe that we are all built to face adversity, pain and tragedy; it’s in our DNA. The problem is that many of us rarely do in our or privileged society. We spend most of our lives avoiding even the slightest discomfort so that when real disaster comes along, we are left stunned and immobilized. That was us three years ago. I still don’t know why or how, but we eventually chose to run head-long into our disaster, turning the devastation into empowerment and purpose.

The writer Andrew Solomon said in a recent TED Talk, “We cannot bear a pointless torment, but we can endure great pain if we believe that it’s purposeful.” The key to our own thriving has been to discover in the torment of cancer something that is purposeful and meaningful. This isn’t anything profound. It’s simply a matter embracing rather than avoiding the struggle against cancer. We do this not only by diving into our son’s treatment and becoming full participants; we do it also by opening up and becoming deeply involved in other families’ pain, tragedy, loss, and often, healing. We thrive in communities, together, against disempowering odds and with purpose. For this, I am forever changed by cancer and grateful for the transformation. Though I would change the circumstances that bring me here in a moment but, since I am here, I will never give up on the quest to thrive and help others do the same.

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