Hello Friends,
Bo lost his brave battle with leukemia very early this morning. Although he has left us, his spirit has not. The Go Bo Foundation will continue to grow and carry out his wish to cure childhood cancer. Please ‘like’ and follow The Go Bo Foundation on Facebook, and continue to support all the little warriors in the world. My husband put our connection to Bo very clearly on a Facebook post:
RIP Bo. You were an Angel here are Earth and I’m sure God has a high place in Heaven for people like you. Bo Johnson, a brave young man, who despite his own illness, got up out of his hospital bed, and came to comfort my daughter in her time of need, a little girl he had never met, yet could hear crying out in agony in the middle of the night. Bo passed away last night at about 3AM. God bless you and keep you Bo. Please join me in sending love and peace to Bo’s Mom Annika who has lost her only child. And please comfort all of Bo’s family and friends.
It feels trivial to write about the little things going on in our lives right now, but I know you are also anxious to hear what has been happening. It’s strange operating in these two worlds; cancer-land and ‘real-life’. I sometimes feel like I have my feet on two different islands. I’m towering above them like a giant, but also held down and cemented into the earth, arms outstretched to find balance, trudging slowly forward to form steps. I no longer feel that my worlds are colliding … nor are they merging. They are coexisting.
After Lulu’s heart tests, we are relieved that her heart is healthy and strong. Her hernia will need surgery, but the docs want to wait 18 months until she is finished with her therapy, to lessen the risks. Luckily, the hernia doesn’t bother her at all. Unless that changes, she should be fine to wait. My hernia turned out to be something I can wait on as well. Apparently, I was experiencing searing nerve pain from the irritated hernia. It has since subsided, much to my relief. No mother-daughter hernia specials needed yet.
Lulu has been exhibiting some new behaviors that we looking into. She’s started to show tendencies towards OCD. It’s not diagnosed or labeled, just something we are going to address sooner than later so that it doesn’t turn into something more serious. It’s certainly understandable, under the circumstances. Children have very little control over their worlds at age 5, and throw in the year she’s had filled with upheaval, stress and uncertainty, and these symptoms can develop. It’s her way of controlling SOMETHING. Even if it’s where we stand, how we kiss and hug her goodbye, wave out the window just so, and say exactly what she needs us to say before we leave. It’s become more and more apparent that the family as a whole has had to act around these behaviors. We are going to learn how to parent under these circumstances, how to give her a sense of control, and help her feel secure in her world as much as possible. She’s still doing very well in school, and this has not impeded her lifestyle day to day. We are confident it will just be a matter of time before these rituals dissipate.
Again, these problems feel small right now, in light of the news on Bo. Please keep Annika and their whole community in your prayers. The ripple effect Bo has had on so many is nothing short of astonishing. Thousands of people will be mourning today, but also lifted up by this wise young man.
GO BO. YOLO (You Only Live Once)
Love,
a.l.l. of us
a.l.l. of us 
Stephanie Raffelock
/ September 28, 2012Sometimes I read your posts, and it feels trite to try and respond to the enormity and intensity of your world. . .but respond I must today as reading your blog this morning I got a healthy dose of perspective and a strong infusion of inspiration. I hold you and your family in a tender place in my heart that breaks open each time I read about Lulu and this tribe of cancer children. They must be teachers and angelic messengers in order to make some sense of it. . . Sending you love and biggest of hugs this day.
T. Marie
/ October 17, 2012Hi Stephanie,
I think this ordeal gives me daily perspective. It’s amazing how quickly we can forget though, and get caught up in ‘life’. I spent the day at the hospital yesterday, and as hard as it was, it gave me peace again too. You are so right in calling these kids angelic messengers. Well put, as always.
Hugs to you too,
T
Plehn, Shelly (GE Healthcare)
/ September 28, 2012What a sad day. Prayers for everyone.
Sent from my iPhone
T. Marie
/ October 17, 2012Thanks Shelly, I will pass them on.
moneyprovidesfreedom
/ September 28, 2012Sincere sympathies for the family and friends of Bo Johnson. Childhood cancer is so unfair. My thought and prayers for you.
Cancer is the second leading cause of death for children between the ages of 1 to 14. Let’s hope and work for a cure.
T. Marie
/ October 17, 2012Thank your for your sympathies, the community there is moving forward with Bo’s motivation to find a cure through his fund. GO BO!
complicatedfabulous
/ September 28, 2012Praying for Bo and his family, and all the families like yours and theirs. You are so strong and courageous!!
T. Marie
/ October 17, 2012Thank you! I didn’t know strong and courageous until I met Bo and his mother, they are truly heroes!
Thanks for reading 🙂
T
John R. Rookey
/ September 28, 2012Hi, T, This is Dad sending his love and thanks for your Bo story. You are right in saying he has affected all of us.. My tears, prayers and hope go out to you–and a.l.l. who are involved in this situation. Love, Dad
T. Marie
/ October 17, 2012Aw, love you.
Kim Utech
/ September 29, 2012My heart is breaking for Annika, and the rest of Bo’s family right now. Thank you for sharing Bo’s, and Lulu’s, stories with all of us. What brave hearts they have. They have taught me to appreciate every day and try to live each day to the fullest. The quote that I think of when I hear about stories like this is “It’s not the years in your life that count, it’s the the life in your years.”
T. Marie
/ October 17, 2012Kim, you know so much better than most do… I LOVE that quote~!
Love you, too.
Life and all things love
/ September 29, 2012So sorry to hear about Bo. I imagine he was a wonderful young man who will be missed by many. On a brighter note, hooray in the no mother/daughter hernia repair!
T. Marie
/ October 17, 2012Thanks so much, he is truly missed. His second memorial service is today. There were so many people, they had to hold one for the kids and one for everyone else, inspiring!
-and yes, thank goodness no 2-for-1 specials needed yet!
jameljk
/ October 3, 2012As I waited in the carpool line to pick up my son today I randomly came across a previous post about Bo. I sat, in line, watching middle school children shoving and teasing each other and could hardly keep it together. Today was Bo’s funeral. His day to be loved and appreciated and remembered. I will never forget his life or story. Thank you T for showing me and my family his life. He will forever be a part of mine.
T. Marie
/ October 17, 2012Karin, your posts are so touching, I think you must write more. Thank you for your thoughts, and for taking the time to leave this comment. Every time I think about stopping this blog, comments like this keep me going.
love you,
T