What I want you to know about having a child with brain cancer

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Audra, Max's Momma.

August 5th, 2011 is a painful anniversary. On that day our four-year-old son, Max, was diagnosed with brain cancer. My family was thrown into a new world. In this story I want to convey how much alike we are, you and I. No matter who you are, we likely have something in common simply because we read this amazing blog, we care about issues, diverse perspectives, and parenting. And before that day in August two years ago I knew as little about childhood cancers as everyone else.

Childhood cancers. You're probably thinking that this is an extremely rare occurrence, something akin to a lethal lightning strike. But one in 330 American kids are diagnosed prior to their nineteenth birthday, so it’s likely that a student in your child’s elementary school will be diagnosed. 46 kids each school day are diagnosed with cancer in the U.S. It’s rare, but not rare enough. 

This is one reason why it catches everyone off-guard. We know it could happen, but probably won’t. Well, here’s how it happened to us. Max started to regress a bit physically at the beginning of the summer of 2011. He lost balance slightly and soon became fearful of stairs. Prior to this he had a number of episodes of early morning headaches and vomiting, but that was all explained away by a bad sinus infection or a virus going around.  Eventually that summer Max started skinning the same knee over and over again. He was falling more, holding onto things, not making it to the bathroom on time, and much more. He was rushed to the doctor from school because he appeared "drunk" and couldn't walk without falling over. After some challenges and a scary incident where he couldn't get up, we got Max in for an MRI.  We planned on seeing a movie afterward. I was sure he had a sinus infection and maybe, at the most extreme end of the realm of possibilities, he needed surgery for some related complications.

I remember being told I could come back to the recovery room. Max was still coming out of anesthesia. The anesthesiologist asked me to step aside into another room. He asked me to sit down. Sit down? That kind of sit down? The bad kind? The kind of request that I’ve only seen in movies or ER-style television shows. The doctor looked worried, all of the nurses had gathered outside of Max's room. I was told that Max has significant water on his brain and had to be rushed to another hospital immediately. Surgery was immanent to relieve the pressure on my baby's brain. The condition is called hydrocephalus and, at that point for Max, was life-threatening.

I sobbed silently and, if you've ever been in that unfortunate position, you know how hard it is to suck it all up and put a smile on your face. I walked into the room where Max was coming to, holding back tears, shaking. "Don't let him see your pain," I reminded myself. I was shaking harder.  I couldn't see straight to text my husband who was teaching at the time. How do I do this? I stroked Max's hair, kissed his sweet forehead, told him it'll be okay, even though I had no idea what was happening. The pediatrician was on the phone. He told me it's a brain tumor. I ask, "is it going to be okay?" He responded that he didn't know. Honest, at least. I signed papers and more papers. We were escorted into the ambulance with a chaplain on hand for comfort. Max is still out of it, I sob quietly up front. I texted my husband after what seems like an eternity of handling the news alone. He asked me what's going on I respond with only one word, "tumor."

We moved from the ambulance to the PICU to brain surgery immediately in the morning.  We spent days with our intubated son, post-surgery.  He then learned to talk, walk, and use his hands again.  We got a crash course in critical care management, our health care system, and cancer.  Max had a direct line port-au-cath implanted. We started a 1 ½ year chemo protocol three weeks later.  People tried to help, telling us about every option, every alternative clinic they've every heard of.  We received all of the forwarded emails about there being a cure to cancer but the media and government won't tell us about it (blah blah). If you can avoid sharing this stuff with cancer families, I recommend it.  

The most striking thing we learned being confronted head-on (so to speak) with cancer is that cancer is the #1 disease killer of American children. Worldwide, a child is diagnosed with cancer every three minutes. We had no idea.  One in five children diagnosed in the U.S. die. Half of all children diagnosed worldwide die. Again, no idea. Childhood cancers have not been cured. Far from it.

These diseases are incredibly violent, borne of our own mutated cells that kills by rendering our internal organs, whichever are most affected, incapable of sustaining life. Scientists and doctors don't actually know what causes kids' cells to mutate into cancer. That’s not hyperbole. They literally do not know!  We asked, why Max?  We were told that no one knows. Could we have prevented this? We don't know. Why do we know so little about the #1 disease killer of our kids? This we know.

We know so little because we devote the bare minimum of federal research dollars to childhood cancer research. 98% of the U.S. National Cancer Institute's cancer budget goes to adult cancers, leaving 2% for children (and that’s for all 12 forms of childhood cancers). Does it trickle down, you ask? No, unfortunately we have learned that childhood and adult cancers are different and, when kids are treated with adult answers, the results can leave children in bad shape. 3 out of 5 childhood cancer survivors suffer late-effects of their treatment, which include secondary cancers, learning delays, organ failure and sterility. I had no idea, until I had to.

Here's where our hope lies: WITH YOU!  Yes, you can help. We cancer-families often feel invisible, cast away to battle this disease on our own.  No one talks about childhood cancers perhaps because it's tough to even think about a child suffering from this disease.  We have no major celebrity backing or visibility. It's easier for many people to turn away and remain silent, changing the channel when the small bald headed child asks for support. But at the same time, there are many who choose to join us. They take our hands and won't let go. They stand with us, showing up when we need them the most. And that is precisely what we need. We need allies who will stand with us. 

Today, just over two years later, Max has been off treatment for over eight months. We've been attacking this with all we have: chemotherapy, nutrition, acupuncture, Traditional Chinese Medicine, physical therapies, and other complementary therapies. We can do this because we have a community supporting the extra costs, and organizations like Lucy’s LoveKai’s Village, and Gabe’s Chemo Duck. Because of all this, Max is doing well and the residual tumor(s) have just now started to progress again, so we enter a second phase of his battle. You can follow his journey on Facebook. He’ll get this, but science needs to catch up to ensure that he can win this battle for good. You can help push science further by advocating and raising money for a great childhood cancer research organization, like the St. Baldrick’s Foundationthe McKenna Claire Foundation, Max’s Ring of Fire or the Ty Louis Campbell Foundation .

You are empowered to support hope, today. Max’s continued healing has been inextricably linked to his access to complementary therapies, what is called integrative medicine. Without aggressive nutrition therapy, acupuncture, massage, physical activity, healing narratives, and the therapeutic resources we mentioned previously we know Max would have endured a much tougher course of treatment, higher associated risks, as well as earlier post-surgical cancer progression. To extend these essential healing therapies to all kids thriving against the odds, Max’s dad and I and a group of wonderful friends started a nonprofit organization, MaxLove Project, as well as a social entrepreneurship initiative to support the nonprofit, MaxLove Brand. Please join us on Facebook and learn more about how non-toxic and natural remedies support children in treatment and beyond. We need help advocating for integrative protocols for all hospitalized children.

Please be an ally. We need for you to know that when those water cooler and play date conversations go down, you can help, your voice matters. Read this post and mention that cancer kills and hurts our kids. Share on Facebook and Twitter. Raise awareness, one friend at a time. Advocate for one of the wonderful organizations I mentioned when your PTA send out calls for service opportunities. Host a neighborhood lemonade stand or a charitable garage sale. Don't look away. When you see us, take our hands. When you see a child facing cancer in your child’s school, be relentless in your support. Build a community of hope. Together we’ll make a difference. Together we’ll change the odds for all kids facing life-threatening illness. Love heals.

Thanks for your time and opportunity to share what I’d most like for you to know.

Audra, Max’s Momma

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