Go Bo.

ImageHello 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

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