Thursday, September 27, 2012

Go Bo! The Final Fight

Bo's story continues . . . I left off with Bo deciding to go through with the Total Body Irradiation (TBI) which game him his last shot at life. However Bo's Extramedullary Acute Myeloid Leukemia (EM ALM) leukemia has no medical research or clinical trials to rely on for information. Nothing to back up if this will work or not. The TBI was a shot in the dark. Bo went ahead with the TBI in late June and into July. Despite allergic reaction, fevers, suffering a Grand Maul seizure, and taking so many different kinds of meds, Bo new cells from his cord blood transplant started to grow at a rapid rate. Even exceeding all expectations, giving Bo and Annika a shimmer of hope.

By early August Bo was regaining his strength, eating everything he could, exercising, and on the right road to recovery. He was able to move out of the hospital and into the nearby Ronald McDonald house. His blood work and tests were all good until on August 11 he spiked a fever and ended up back in the HOT until of the Children's Hospital with sepsis (an infection of the blood).

Unfortunately things got progressively worse for Bo even though his tests were showing no signs of EM leukemia. On August 15—day 44 of his cell transplant—his doctors found a mass on his CT scan that looked like an infected tooth. It wasn't a bad tooth. The EM ALT was confirmed in his right jaw on August 26. Overnight Bo had too many painful EM spots popping up all over his body that he could not fight it off any longer, eventually becoming impossible to eliminate the aggressive EM ALM. The EM ALT had taken over and there was nothing more that could be medically done to help Bo.

As a mother, I cannot even imagine how Annika felt hearing there was no more hope for Bo. Somehow through all of this Bo remained strong and came to terms with his destiny. He told his mother when he was completing one of his final rounds of radiation the song Somewhere Over the Rainbow came on the radio. It's one of his Papa's (Bo's grandfather the late Al Johnson) favorite songs. As Annika shared on Bo's CaringBridge site, "it puts him at peace. He now knows where he is going and that he is going to be okay."

In early September Bo came back home for the last time, setting up his hospital bed in the living room of his grandmother's house that overlooks the sparkling waters of Green Bay. Visitor hours were set and Bo was flooded with friends and family. Through the Make a Wish Foundation, Bo was able to spend two days at Lambeau Field with his favorite team—the Green Bay Packers—living out the dream of meeting the players, visiting a practice session, and watching the home opener from a sky box.

When he was feeling up to it, Bo in his wheelchair went to the high school football game, out onto the dock to watch his friends jump into the bay, and over to the performing arts center to give an inspirational speech to his friends and the community.

In his last days Bo wants to teach us not about death, but about life. He wants to Pay It Forward and help others. In Bo's words:

Love each other. Help each other, have your neighbor's back, have your friend's back. If you see someone who needs help, even if they are a stranger, Help. This world can be a better place if we care, love, and help each other. I know that we cannot fix the entire world, but if we can start right here in our school, and in our own community, it would mean so much.

Bo has established the Go Bo! Foundation to help others in need and to help find a cure for cancer. If you are touched by Bo's story, his inner strength, and desire for a better world, visit the Go Bo! Foundation link on Facebook.

As I write this post tonight, I am sad to learn that Bo Johnson has just been moved into hospice at the local hospital. He does not have much time left in this world. If you believe in prayer, please pray for Bo and his family tonight. If you believe in positive energy, please send Bo and Annika an abundance of positivity. Go Bo!

September 28, 2012 (10 am): The Go Bo! Foundation posted on Facebook that Bo's pain ended when he passed away early this morning. Annika's pain continues though without Bo. In honor of Bo, do something kind today. Buy a coffee for a stranger, help someone in need. Pay it Forward.

To donate to the Go Bo! Foundation:

The Pay Forward Forever Wish
Associated Bank of Sister Bay, WI
PO Box 507
Sister Bay, WI 54234

Here are additional links to Bo's story:

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