Monday, September 24, 2012

Go Bo! The Bravest Boy I Know

The boy with the addictive grin in the photo is Bo who is the son of my friend Annika. Together they have spent the last year battling a very rare and extremely aggressive form of Extramedullary Acute Myeloid Leukemia (EM ALM). This is just a fraction of his inspirational story. It's not an easy story to write or an easy story for you to read, but I must share Bo's story.

My kids and I first met Bo five summers ago at one of his favorite haunts in Door County, Wisconsin. On a hot and sunny summer day on the shores of Green Bay at the Ephraim beach, hanging out with friends and his Mom, Annika. Bo was just like any other 8-year old boy, enjoying a July day at the beach. So much has changed for Bo and Annika since that sunny day. Now at the young age of 13, Bo has spent months in the hospital and fought unimaginably hard against a rare and incurable form of cancer. Bo has recently returned home to Door County to live out the final days of his life.

I'm not going to recite the extreme pain and agony Bo endured throughout his medical treatments. I'll not share the unfathomable emotional roller-coaster ride of going in and out of remission or divulge the detailed account of his months in the hospital. Annika has lived all of that and shared it diligently with everyone on Bo's CaringBridge site as well as on Facebook and now through the new Go Bo! Foundation.

It all started on Labor Day weekend 2011 with a jet skiing accident when Bo broke his pelvis, and he wouldn't heal properly. Early in October 2011, rounds of tests finally revealed that Bo had Acute Myeloid Leukemia (ALM). This triggered the first of numerous rounds of chemotherapy, too much time spent at the Milwaukee Children's Hospital of Wisconsin, and the inevitable side effects of the rounds of chemo.

But Bo is strong. His fight is strong and his spirit remains positive. In February 2012, Bo's tests came back clean. No cancer was found in Bo's bone marrow. He went home to Sister Bay, Wisconsin and into the loving and supportive community that had painted Door County orange and plastered the county in orange ribbons. (Orange ribbons are the symbol for supporting the fight against leukemia.)

In April, Bo and Annika took a much needed vacation to Florida where they visited Disney World, went fishing, relaxed as much as they could, and lived in remission. Bo was then able to take a 4-day trip to Washington, DC with other 7th and 8th graders. He was fine until on the third day of the trip, Bo discovered a lump on his elbow. Annika's stomach dropped when she heard. On May 6, 2012 Annika updated Bo's CaringBridge site from the "HOT unit chair that I thought I was never going to use again." Bo's ALM returned on his 13th birthday.

After more chemo and setbacks, on June 21 Annika found no comfort in the words uttered by Bo's doctor: "We have never seen this before." It was her worst nightmare confirmed. Bo's leukemia was not in the bone marrow but growing on the actual bone itself. The diagnosis was Extramedullary Acute Myeloid Leukemia (EM ALM)—a cancer that will not respond to chemo.

Survival chances from this extremely rare and aggressive cancer are slim. Even surviving the treatments is difficult. Bo was given three choices and one evening to talk this over with Annika and make a decision.
  1. Palietive Care. Go home and let the leukemia run its course while making him as comfortable as possible.
  2. Do a double cord blood transplant and hope the ALM doesn't return.
  3. Total Body Radiation (TBI) with Chemo. Hope TBI attacks and kills the bone leukemia that the chemo doesn't kill.
This unbelievably calm and brave boy, who should be choosing which friends to hang out with or which bat to use at his baseball game, had to make a life choice. Bo knew the odds were not in his favor, and he knew the TBI would be very painful. But Bo is a fighter. He doesn't give up easily, even to cancer. Most importantly Bo loves his mother, his family, and his friends. He loves life so very much that in the end he chose the small and extremely painful shot at life. One last brave try, and Bo chose life.

Bo's story continues in my upcoming post. Watch for it in a few days. Until then Go Bo! To learn more about Bo, Annika and the Go Bo! Foundation please visit:

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