Nearing the Finish Line

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Hello Friends,

I just had to post again as I vacillate between giddy delight and emotional overwhelm. It feels like we’re all just holding our breath … unbelieving that it’s really almost here: MARCH 6TH, and MARCH 11th: Lulu’s last day of chemo and last surgery.

It’s been a special week. I was honored to have my children’s book The What If Book featured with our story for a fundraiser for Ridin’ For Research. It was SO powerful. The pages of the book served as a backdrop while video of our story was woven between moving narration. I was really choking back the ugly cry as pictures of Lulu came onto the two ginormous screens; reliving the story in bold face as it played out. We went on stage and passed out rainbow bracelets to everyone there which read: “Never stop wondering WHAT IF?” I can’t thank presenter Kim enough for her hard work on this event, her attention to detail and the research and respect she paid to our story, as well as Bo Johnson’s. Carol, the illustrator, and I did a book signing afterword and Lulu also signed each and every book, adding in a special bit of art with her signature. It was adorable and she stole the show as usual :-). I’m very proud to have been a part of it, and the event raised over $70,000 for cancer research!!!

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Max kicked some major bootay at Forensics this week, finishing his first season with 5 blue ribbons in solo comedy, culminating in the Power Rounds where he went up against 7th and 8th graders to walk away with the overall first place trophy! I continue to be amazed with how well he’s done despite his sister’s illness. He’s quietly and deeply affected by it, while managing to be there to make her laugh when she needs it, and still an imperfect enough big brother to remind us all to appreciate some normalcy.

Lulu is literally checking off the days on her calendar, also giddy and sensitive. She’s vomited the last 2 days in a row from her chemo, and feels ‘floppy’ but also extremely excited to give the nasty chemo dragon a permanent goodbye. It’s a lot to digest for all of us. We’ve been running into the wind for 2.5 years, heads down, completely focused. The thought of that force of air being cut off and calm seems almost unfathomable. I expect a tidal wave of emotion may come from behind us to fill that stillness …

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with love,

a.l.l. of us

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So Close and Yet So Far

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We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder.  Since I always like to get the bad news out of the way first, I’ll start with that.  It’s been an eventful week with lil Lulu.  We ended up in ER again, this time with 103.7 fever, headache, vomiting and wicked-scary cough (the biggest concern with leukemia patients since this could turn into pneumonia).  Our good friends took Max so Jimmy and I could both go in with her.  You know the drill by now: total panic and desperate crying from Lulu when she finds out we’re going to E.R., the usual tests, prodding, poking, fluids etc. … We ease the pain and much as we can, and ever since the infamous 4-nurse and 6-missed port pokes, we ask for someone to come down from H.O.T. to access her difficult port.  We were SO lucky to see our dear Linda come down.  This is the nurse that Lulu once told me if she could have another mommy, she would want it to be Linda.  It was like seeing family when she came and helped tremendously.  Hours later, her counts came back high enough that we could leave for that day.

Day 2, fever returned.  I took her in so Jimmy could stay home to protect Max from seeing his sister go through it all.  Repeat of above plus heightened anxiety and, luckily, another great nurse from H.O.T.  She was additionally given Tamiflu and antibiotics.  Her fever finally seemed to break.  We left at 11pm only to return to clinic the next morning.  This time for surgery consult (for hernia and port removal), chemo, bloodwork, and nose swabs.  That’s 3 days in a row of port-poking and rollercoaster anxiety.  I must tell you though, that as petrified and Lulu has been (literally shaking and crying with fear at times), she always pulls it together and finds what we call her ‘brave spot’ to get through the actual procedures.  She truly amazes me and I continue to be impressed by her sheer will and tenacity.  She even seemed to be bouncing back and so much better that afternoon.  We also had an unexpected visit from Bo’s mom Annika, which brightened our day immensely!  She and her crew were donating a $10,000 check to the MACC clinic from The Go Bo Foundation.  We just love them and the work they are doing.

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(Elephant to color on from Annika)

Long story short-ish, we’ve found out she has Human Metapneumonia virus and, as the name would indicate, one that can turn into pneumonia.  We also found out that her IGG (immunoglobulin – important component of the immune system) is low, which may be why she’s been getting sick more often and severely.  She will need and infusion of this, which can be risky.  Allergic reaction is possible (we NEVUH want to go through that again) and because the product is harvested from over 10,000 blood donors there is risk of contracting serious viruses.  Of course, we’ve consulted with the nurses and doctors, read the information and feel this is a necessary risk.  She will receive the infusion over 4-8 hours tomorrow.   Please keep her in your thoughts.  We are so close to the finish line!

Which brings me to the good news that’s really great news: March 6th will be her VERY LAST DOSE OF CHEMO!!!!!!!!!  That’s right, a mere 3 weeks away!  She will have a highly anticipated day at Children’s where she will ring the bell, signaling the end of her treatment.   We’ve heard just a few others ring it, and it’s the best sound you’ll ever hear.  Both Jimmy and I get choked up just thinking about it.  She is scheduled to have her hernia surgery and port removal on March 11th, barring any illness or low blood counts.  The light – no, the rainbow— at the end of the tunnel is brightening, just have to move through these last storm clouds.  We have decided to homeschool her until she is finished with therapy.  Her doctors and teachers concurred, knowing there is strep and flu prevalent in the school right now.

The first year off therapy she will have monthly blood work and checkups.  Year 2 will be bi-monthly, I’m foggy on the rest, but I believe years 3-4 will be every three months, year 4 will be every four months, and year five will be every 6 months.  After year 5 we use the word CURED.  Have you ever seen a prettier word?

I’ll try to keep updating you in shorter spurts over the next few weeks.  Thank you for your continued support, love and good juju for lulu — and a.l.l. of us.

SUNSHINE AND RAIN

SUNSHINE AND RAIN

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(Lulu & Mrs. B)

Hello Friends,

Wow, it’s been almost a month since I’ve written. You’ll see why after you read this entry …

Much like the weather in the Midwest this year, our lives have been full of rainbows, storms, sunshine and rain … sometimes all in one day!

Ours began full of hope, as Lulu was set to ‘graduate’ from Kindergarten. She was SO excited, and had been chattering on and on about the program all week. She was going to sing choreographed songs with her class, and give a little speech along with a few other chosen students. She practiced her two lines diligently, and had them down pat before the big day.

Proud as punch, she was the last and tiniest to march down the aisle, chest held high, with laser-like focus and broad grin. The program was cute beyond words, especially the dance-moves! I must admit, I used to think Kindergarten graduation was kind of a joke … really, we need to graduate K5? This year, however, there was cause for celebration, pomp and circumstance. Lulu missed almost all of K4 last year, having spent most of it in the hospital. This year she missed 45 days of K5, yet graduated with a perfect report card and took home the most coveted trophy; the Eagle Award. This award is given to the child in each class who demonstrates the best spirit and behavior all year. – No mean feat while on daily chemo and monthly steroids!!!

I’ve never seen Lulu so proud of herself, holding her trophy and her teacher who has become part of our extended family. It was the perfect distraction after what had been a horrible day. My husband’s father was scheduled to move into a hospital 5 blocks from us when he passed away graduation morning. Jimmy’s mother was visiting us when she got the news, and I recognized the awful sounds emanating from her room as the phone call came in. She had known Mike since she was 15. Jimmy was on his way back from an out-of-town job, and was devastated. I think the whole family was in shock, and the impact of Grandpa Mike’s death was felt more deeply than any of us would have predicted.

Somehow, Jimmy sat down at his computer, and over the next few days wrote the most thoughtful, respectful and historical eulogy I’ve ever heard. He read it aloud through sobs and tears, but each word was heard and felt by all present. I’ve always had a lot of respect for my husband, but his words, and grace surrounding this event raised the bar. He even arranged and led a Harley caravan to all his father’s favorite haunts. The funeral concluded with full military honors and a 21-gun salute and formal flag ceremony; well-deserved after fighting in Vietnam, a war that effected Mike and his family ever after.

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Lulu spoke of death with an understanding that only one who’s lived so close to it can. She asked if Grandpa was up in heaven with Bo now, and was content my soft yes. She spoke of my mother, whom she’d never met but feels a connection with. She’s often talked about building a time-machine when she grows up, and the first thing she is going to do is bring back my mom, and Bo. Now Grandpa too.

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We are all getting back into our summer routines, Lulu and Max in camps off and on, Jimmy and I hard at work. I’ve gotten so used to giving her oral chemo that I can tell the bottles apart by sound alone: Methotrexate is a high-pitched light sound like tic-tacs, 6MP has a duller, lower sound, and Bactrim is low but has more of an echo when shaken. I’ve only broken down once recently, when I had to wake her to give her pills, and one hung from her lip as she slept. I wondered what am I doing to this poor baby girl? But it must be done.

She’s tolerating things extremely well, only occasionally nauseous and enjoying the summer quite like a regular kid (full head of hair and all!). We are counting down the days to March 2014 when we can ring the bell at Children’s, meaning she is cured and finished. There will likely be more unpredictable weather along the way, but we’ve found out our family is remarkably resilient. Thank you all for being a part of our umbrella.

Love,

a.l.l. of us

What if … ?

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Hello Friends,

I’m very excited to write to you today. I have a big announcement to make! I am finally sharing my children’s picture book “The What If Book”. I use the word finally, because this Little Book That Could has had quite a journey:

I started taking notes on a someday children’s book while my son was only 3. He inspired me with his relentless ponderings while in the back seat of my car. That age begins an important time for kids to start wondering about the world through their own eyes, and asking a lot of “what if” questions. My tiny notebook sat for a few years in the ‘someday projects’ category until 4 years ago. I sat down, put finger to keyboard and put my own twist on this theme to create The What if Book, a picture book for ages 3-7. It carries the reader through a modern, whimsical journey laced with a simple but powerful message; remember to dream.

Working in the industry of fashion photo shoots and film, I tend to meet a lot of amazing, creative and talented people. One of these people is Carol Curley, an art director I’ve had the privilege to work with for many years. I had seen a bit of Carol’s art here and there, and had the strong intuition that she would be able to bring my book to life in the modern, edgy way I had envisioned. Carol was very excited about the project and began sketching away. Over time, she used the book as a creative outlet, finishing the remainder of the illustrations by sheer will and want. I am SO in love with what she’s created, and feel so lucky to have her on this project.

We were thrilled with what we had accomplished; a finished, fully illustrated book! Lulu and Max loved the book, as did the kids and teachers at the schools and daycares where I tested it. I hit the ground running to find a publisher. I began with my close circle of friends to see who might have a connection. One of my best girlfriends Carrie looked at me, almost cross-eyed, and said, “em … JODI!”. Jodi was an author I had met years ago on a job in NYC and had connected with immediately. I had forgotten she was an author, and had a stronger memory of her wonderful energy. Duh, and she was a famous author. Her name is Jodi Lynn Anderson. I didn’t even know if she would remember me. I took a chance and sent the book to her. She responded that of course she remembered me, and that she really loved the book! I still can’t believe that. If you’ve never read a Jodi Anderson book, do yourself a favor and RUSH out to buy one. She writes in the young adult category, but her writing appeals to a broad range of ages. Tiger Lily is her latest masterpiece: http://www.harperteen.com/books/Tiger-Lily-Jodi-Lynn-Anderson/

Here is a link to her bio and other works: http://www.harperteen.com/author/microsite/about.aspx?authorid=22853

I can’t express how talented, generous, humble, full of wit and grace this woman is! After really getting to know her over the last couple of years, she really has become one of the most inspiring people in my life. I’m so proud to call her my friend. Now, I hope this won’t have people sending her their manuscripts! She did make it clear to me that she doesn’t usually help fledgling authors in this way, but something about my book appealed to her and I’m so grateful.

So … long story longer, Jodi gave me a quote for my query letter, and I sent it off. I received a few form letters back, a few nice responses that went along the lines of “We are only accepting one (or two) new picture books this year, but we really like your book!” I got one tough rejection letter and a co-publishing offer (at 50% profit, I turned it down). The children’s picture book category is the most difficult category to break into these days, especially if you’re not a celebrity: http://www.nytimes.com/2010/10/08/us/08picture.html?pagewanted=all&_r=0

I think I sent about 30-40 letters out and 10-15 copies before Lulu was diagnosed in Fall 2011. And that was the end of that. The book, with all the time and love that went into it, sat on the shelf to collect dust. I thought about the book from time to time, and how the meaning of the book was so perfect for kids like Lulu, who needed a reason to dream, a little something to give them hope and inspiration. I decided that if I ever got the book published, I would use the profits for something related to our ordeal. I decided if (no, WHEN!) the book is printed that the profits would be split between The Go Bo Foundation; in honor of our friends Annika and Bo, and the loving message they continue to put into the world, and Love 4 Lulu; to help with her medical bills and to give to Childhood Cancer Research and support.

Fast forward to last week. On a whim, I attended a seminar suggested by a friend on self-publishing through Kickstarter. I met some wonderful women there who were authors and illustrators. They were so encouraging regarding The What If Book, and one of the most impressive figures there took me aside after, and told me NOT TO GIVE UP. She thought I had something really great, and that it would be published.

Well, meeting those women lit a fire under me, and I started a Facebook page the next day. I was told it is very important to gain a following. The page got 325 likes the first day! Over 400 by day 2, and still growing at 500 on day 3 today! I hope you will ‘like’ and share this page as well by following the link here: http://www.facebook.com/whatifyouaskedwhatif?fref=ts I will post the book’s progress on that page often.

I must give a very special thanks to Carol Curley, who has generously decided to donate all her time and talents in illustrating this book to support our causes. She is a true gem of a human being and thank you doesn’t begin to cover it. But thank you Carol.

It seems like the little-book-that-could, was just waiting for the right time and reason to be introduced … and so it begins.

I must wrap up with a big thank you to Max and Lulu, who keep me believing, dreaming and asking … What if?

Carrot Juice or Chemo?

They say there are two things you should never talk about at the dinner table: politics and religion.  I beg to differ.  I’d argue that food has become almost as controversial as politics or religion.  Think of all the nutrition information out there, and how confusing it is, yet everyone has a strong point of view on the subject:  Lean meat protein is good. No, meat is bad.   If you know where your meat comes from, it’s ok to eat it.  No, plant based protein is the only healthy option.  Fish is healthy. Fish is toxic, etc.  Then, there are the confusing terms and labels like farm raised, free-range, grass fed, omega 3 added, organic, fortified, ‘natural’, and on and on and on …

I have gluten sensitivity (celiac), which can be tricky in a social environment.  Although I always try to be subtle when asking the server for gluten-free options, I inevitably end up in a conversation about gluten.  People always like to know how it affects you.  Well, if you look up the main symptoms, it doesn’t exactly make pleasant dinner conversation.  For me, it was throwing up.   Yackity-yak-yacking after gluten-filled meals.  Mostly, people get BAD gas.  I’m not talking garden-variety gas; I’m talking peel the paint off the walls, asphyxiating green gas bombs!  Do you still want to know the symptoms?  The worst affect is the villi in your stomach lining get damaged and lie flat, which doesn’t allow proper absorption of vitamins and minerals.  This can lead to a host of other ailments, including fibromyalgia which I suffer from.

Since I’m not a big pill-taker, I prefer to find natural alternatives whenever possible.  This has led me to have a fascination with the link between food and wellness.  I’ve done some research on various therapies including The China Study, which is a plant-based vegetarian diet said to reverse heart disease and cancer.  The Gerson Therapy, a very controversial cancer therapy that involves heavy juicing, coffee enemas and the like.  I’ve also looked into Ayurveda, veganism acupuncture, etc.  I’m not endorsing or following any particular protocol, but I like learning about different approaches.

At our house, we strive (don’t always succeed) to eat organic and local products, within the balance of a fast-paced lifestyle, and a love of good restaurants and eating out.  Yes, that means we eat fast food sometimes.  I’ve had great success with keeping my symptoms at bay when I’m eating well.  This means clean, mostly organic whole foods.  However, I’m not doing so well with that this year and wow, can I tell the difference!

So … when Lulu was diagnosed with cancer, it made me question a lot of things including the food she eats.  She’s a notoriously picky eater, and has battled our food choices since I can remember.  I’m sure having an undiagnosed infected appendix affected her digestion as well.  I’m sure it wasn’t any one thing, but I’d like to try control the elements I can to help her heal.

That being said, people have suggested we try some alternative therapies including heavy vitamin therapy, juicing, and even ingesting silver as of recent.  I like my alternative therapies to have science backing them up, but with the amount of free-floating information out there, it’s more than confusing.  What I know for sure is that Lulu’s cancer was so fast moving there was NO WAY we would ever consider an alternative therapy.  If we hadn’t gotten her started on chemo immediately, she wouldn’t be here today.  Within a week after diagnosis, her bone marrow had been so overloaded with leukemic blasts that she couldn’t walk and was in extreme pain.  Do I wish I could give her some carrot juice and a coffee enema to cure her?  YES!  But the science simply isn’t there.  Do I hate giving her toxic medication every single day that may cause long-term harm to her?  YES!  Do I worry she won’t be able to conceive?   That her OCD is mostly caused by the drugs?  That she may never be the same little girl we had before?  You guessed it, yep.  It’s awful feeling like you are poisoning your own child with the very thing that is saving them, knowing there is no alternative to treat her.  Aside from horrifying cancer itself, it’s devastating to see children die from the side effects of the drugs, not the disease.

What I hope for the future of medicine is that we can help fund studies to incorporate some less toxic alternatives into cancer treatment.  Nutrition related or not.  It’s not simple, it’s tragically difficult, and I truly believe in the sincerity of our caregivers. I’m not preaching, but I am wishing, hoping and believing.

We’ve been honored to find some brilliant scientists right here in our own state that are doing just that.  Yesterday, we donated the $3000 from Lulu’s lemon-aid stands to The Blood Research Institute.  They are on the brink of a huge discovery, which could make enormous strides towards a cure, and in reducing toxins during treatment.  We know that our donation is small compared to what they need, but we hope it will inspire others to do the same.  With kids like Lulu (Love 4 Lulu), Bo (Go Bo Foundation) our new friend Emma Rose (Emma Rose, A patient Helping Patients) and others, these gestures can add up to some real change.

Who knows, maybe in the near future we will take our chemo with a carrot juice chaser?

Love,

a.l.l. of us

Lulu’s journey through pictures

Today marks one year since Lulu’s diagnosis.  I found it too difficult to put the year into words, so I’m  wrapping it up in pictures, and Lulu’s art.

Thank you to the staff at Children’s Hospital, who saved our daughter’s life on multiple occasions over the past year, and continue to treat her, and us with love, respect and compassion.  Thank you to our community, whom we believe wholeheartedly gave us the strength to get through this year.  Thank you to those who employed us, and for the new opportunities that await us.  Thank you to all those we have left unthanked, but made a difference in our lives.  Thank you to my amazing husband and incredible son who are the strongest men I’ve ever known.  Thank you to Lulu, who’s had to deal with life beyond imagination, and has used her own, to cope with a world that defies explanation.  I love you. I love you. I love you.
One more year, five months and counting. Here’s to a.l.l. of us!
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Go Bo.

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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

Bo Johnson article: Teaching us How to Live

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Hello Friends,

Lulu had another lemon-aid stand today at our church.  We are so proud of our little one for inspiring these donations. We will do exact calculations, but we should have close to $3000 from our 3 lemon-aid stands, which will be donated to The Blood Research Institute.    Thank you to all who have given to this cause, especially now, during Childhood Cancer Awareness month.  If you wish to donate, please click on this link: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HWVDDTBWNFYDE

In lieu of my usual updates, and in honor of our fellow warriors, I am sharing an article about our friend Bo.  He is at home in hospice now.  He has not only touched our lives, but the lives of so many.  I think you will find it very uplifting, moving and inspiring:

Bo Johnson: Teaching Us How to Live

The lessons of a mother and her boy’s fight

September 06, 2012

On Monday, August 27, Bo Johnson chose to come home to die.

For nearly a year he battled valiantly against an extremely rare, extremely aggressive form of Extramedullary Acute Myeloid Leukemia, also known as EM AML (read “Bo’s Battle,” for more). That Sunday, his doctors told him there was nothing more they could do for him – that he will die from his disease.

Bo didn’t want to die in the hospital. Bo wanted to come home.

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Bo Johnson, shortly after he shaved his head during chemotherapy treatments for Acute Myeloid Leukemia.

The 13-year-old Sister Bay boy with the humble smile has called the HOT Unit (Hemotology, Oncology, and Transplant) at Children’s Hospital of Wisconsin in Milwaukee his home for most of the last year.

His battle began with a Labor Day jet-ski accident and a broken pelvis that wouldn’t heal. On Oct. 8, 2011 doctors discovered he had Acute Myeloid Leukemia (AML), and within days he was prepping for chemotherapy. By the time he started treatment, his schoolmates had painted northern Door County orange – the color of the ribbon to show support for leukemia patients.

They made orange GO BO! ribbons, wrist-bands, t-shirts. They bought orange shoes and orange shoelaces. They painted orange ribbons on their cheeks and GO BO! on everything they could find.

“It’s been overwhelming to see all that support,” Bo says from the hospital bed his family set up in his grandmother’s home in Sister Bay. His voice is slowed to a drawl by the pain in his jaw, but not enough to hide how happy he is to be home among his friends. His bed faces out a wall of windows toward the water, just a few steps down from the beach where he yearns to play with his friends. “I don’t know what to think. People I don’t even know; you just feel so appreciated and comforted.”

Bo recognized right away that he was lucky. He had his mother Annika at his side, friends begging to visit, cards pouring in, and Facebook and Caring Bridge pages blowing up with messages from friends, family, and strangers.

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The Gibraltar Cross Country team showed their support for Bo Johnson at a meet Aug. 29, wearing orange ribbons and painting GO BO! on their calves. photo by Joy Manweiler.

But on his floor in the hospital he saw other kids suffering, some of them seemingly alone. Many would become his friends, his mentors, his teammates in the fight against terrible odds.

“They taught me a lot,” he says. “They gave me advice. Jack and I would go along the floor pulling pranks on nurses. They showed me that it’s not all doom and gloom in there.”

Jack Bartosz was one of those who taught him how to fight. The nine-year-old battled neuroblastoma for seven years, and his “I Back Jack” campaign raises funds to support research for new treatments. But there’s a heartbreaking risk in making friends in the HOT unit.

Jack died the day Bo got the news that there was nothing more they could do for him.

“Bo has had to see a lot,” Annika says. “He has watched other children die. Watched his friends die.”

In the face of such trauma, Bo struggled to remain positive where others could not.

“Some of the kids refuse to come out of their room,” Bo says. “They keep their windows shut, blinds shut. It’s pitch dark in their room all day. But you’re not gonna get anywhere doing that.”

Did he ever want to do that?

“Oh yeah,” he says, rolling his head toward his Mom, “but she wouldn’t let me.”

He says that every note, every card, every ribbon helped him answer the bell each day. The flash mob at Fall Fest, the GO BO! group photos at the school and the Sister Bay Bays game. The notes and updates on his Facebook page and the school assembly when Dr. Phil Arnold talked to the students about his disease. The candlelight vigil in Sister Bay’s Marina Park turned into a video by Chris Miller for Bo to see.

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A single orange ribbon waved from the Gibraltar School sign the day Bo Johnson returned home to Sister Bay. By the next day, orange ribbons waved from nearly every Northern Door sign, mailbox, and tree. Instagram photo by Myles Dannhausen Jr.

Learning that he had cancer was a shock, of course, but he says it wasn’t the worst moment in his ordeal.

“I just figured it is what it is,” Bo says. “I thought I would beat it. They told me it was going to be chemo, six months of treatment, and they said it was going to hurt…I didn’t know it was going to be this hard. They weren’t lying.”

He says this from his bed, his feet sticking out from beneath a Wisconsin Badgers blanket. His hands are too weak to shake, so when family friend Doug Bensyl arrives, Bo opts for a fist bump instead.

It is futile to try to imagine what it must be like for a boy who loves baseball, basketball, and football, to be confined to his bed, his body slaughtered by this disease. It is more futile still to try to comprehend how his spirit remains so strong.

There was a time Bo and Annika thought they had beaten his leukemia. He came home last February, his chemo complete. He returned to school on a limited schedule, put on 20 pounds, and was on his way to recovery.

They took a trip to Florida together, and when they returned Bo went to a Cal Ripken baseball practice and even ran the mile, beating his goal of eight minutes by two seconds.

“Well, what can we say!?!” Annika posted in their Caring Bridge journal in March. “Bo has never been happier than to be home with all his friends and familiar faces.”

Then he joined his classmates on the annual trip to Washington D.C. in late April. Near the end of the trip his arm swelled.

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Bo was inspired by 9-year-old Jack Bartosz, who he met in the HOT unit of Wisconsin Children’s Hospital. Jack died Aug. 27 after battling neuroblastoma for seven years. Photo by Annika Johnson. photo by Annika Johnson.

On May 3, Bo’s 13th birthday, they learned that his leukemia was back. This time chemo was not an option. He needed a bone marrow transplant (also referred to as a stem cell transplant).

They always knew this was a possibility. It’s not uncommon for an AML patient to relapse in the first year after treatment. They prepped for the transplant, but on June 21, Dr. David Margolis, the program director for blood and marrow transplant at the Children’s Hospital of Wisconsin, entered Bo’s room and delivered news they couldn’t possibly be prepared for.

“We have grossly under-estimated Bo’s burden of leukemia,” Dr. Margolis, told them. “It’s not just bone marrow-loving. It’s bone-loving. We’ve never seen it like this, and we don’t know how to treat it.”

This is when they learned Bo had Extramedullary AML, meaning that the cancer doesn’t confine itself to the bone marrow, but attacks the bones throughout his body. That’s why it kept coming back, why Bo couldn’t get healthy. The chemotherapy was successful in fighting the AML, but chemo doesn’t kill the EM AML.

“Is this rare?” Annika asked him, through tears.

“Dr. Margolis practically fell off his chair and on top of Bo’s bed,” Annika remembers.

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Bo’s schoolmates have shown their support in every way they can – ribbons, fundraisers, t-shirts, even special team shoes. photo by Paula Hedeen.

“It is so rare,” Dr. Margolis told them. “We have never seen a biological make-up like yours. Your whole chemistry is unlike anything we’ve seen before. You don’t function like a typical AML patient, and we don’t know why.”

They learned that his chance of beating the EM AML were extremely low, perhaps as low as three percent. It was the most difficult moment of Bo’s ordeal.

“I didn’t really have anything to say,” Bo recalls. “I just sat there with my eyes closed, waiting to hear what they said next.”

Annika thought they were talking about the wrong boy. She couldn’t talk; she could only cry.

His best option was Total Body Irradiation (TBI). It is not pleasant, and for the first time, his doctors gave him the option of palliative care.

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On his second night home from the hospital Bo’s friends showed up to take him to one of his favorite “hot spots,” the Sister Bay beach. Pictured (left to right): Casey Weddig, Connor Brennan, Quinn Jacobs, Ian Chomeau, Seth Johnson, Andrew Iding, Ernie Erickson, Ava Erickson, Hannah Helm, Kara Caldecott, Shannon Martin, Adele Steebs, Mariah Davis and Bo Johnson (center). Photo by Chandra Johnson.

“You don’t have to do this,” Dr. Margolis told Bo. “This is going to be terribly painful, and it is very likely that it won’t work. Nobody will question your fight if you choose to go home.”

Annika left the decision to Bo. He had been through so much already. She had watched him writhe, heard him scream, in pain. It was up to him to go through it again.

Bo chose to put the gloves back on, to go another round against a disease that had him by every measure – a foot taller, a hundred pounds, an arm’s length. He would take its devastating blows one more time, in hopes of sneaking in one lucky punch.

Dr. Margolis told Bo that he had to be 100 percent sure that he could do it. That he couldn’t make any excuses, play possum for the nurses, which he was so good at, or beg out of walking laps around the floor. He gave Bo a motto.

“Just do it,” he told him, and he drew a swoosh on the white board of his door.

“I went by that the whole time,” Bo says. “You don’t want to take a bath? Well just do it. You don’t want to walk laps? Well just do it.”

The TBI decimated his tissue. He suffered from mucositis, which left him with open sores on his tongue, throat, and intestines that felt like shards of glass were slicing through his body.

For four weeks he couldn’t eat. The only thing he could swallow were the Cyclosporin pills to help his new stem cells grow. The pills were “three big horse pills,” Annika says, and Bo had to take painkillers just to swallow them.

• • •

When Bo chose to come home, his only regret was leaving his “second family” behind. The nurses at Children’s Hospital were incredibly personal, he says, helping him through every difficult day.

“It’s hard to be away from the hospital because you feel so safe there,” he says.

Annika has a great deal of respect for Dr. Margolis. He didn’t shield Bo from reality through this process, didn’t sugarcoat any news. In fact, he reminds Annika of a stubborn old Swede she knew.

“Dr. Margolis doesn’t hold back, he spits it out. He reminds me of my Dad,” she says, referring to her late father, the restaurateur Al Johnson.

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The GO BO! ribbon has become a ubiquitous presence in Northern Door County.

Last week Dr. Margolis delivered the hardest truth.

“Bo is going to die from this,” he told them.

Dr. Margolis asked Bo what he wanted to do.

“I don’t want to die in the hospital,” replied Bo, who in a world without cruelty would instead be choosing a new pair of shoes for the coming school year, not where he wanted to die.

“I came home because I wanted to see everyone, to remind myself what Door County even looked like. I love the sunset every night,” he says. “I just didn’t want to go through the treatment again knowing I could have the most painful death out there. I wanted a peaceful death.”

Bo does not cry as he says this. He says it almost bluntly, as if it’s patently obvious. He is surrounded now by about a dozen of his friends, part of the growing stream that are coming to see him. He is happy to be with them, they are happy just to have him back, asking when they can take him to the beach, the favorite of the “hot spots” he wanted to get back to see.

• • •

Before he got leukemia, Bo and his mother would lay in bed and he sometimes asked her – “What would I do without you mom?”

“Don’t you worry,” she told him. “I will always be there to look after you.”

She never expected the tables to turn. Now they lie in his bed and he puts his arm around his mother. He tells her that he’s not scared, that she’s going to be okay.

“I don’t want you to sit in your house and cry all the time,” he said to his mother recently. “I need to know that you will be happy.”

Bo spent a lot of time over the last year thinking about what he would do if he could get healthy again. He thought of becoming a nurse, to pay forward what his nurses have done for him. This summer he came to grips with the idea he might not make it that long.

“I wanted to live a decent life as long as I could,” Bo says. He hoped not for a long life, but for another year or two. “I could do a lot in two years.”

“He could just be with his friends,” Annika says, “and do what they do every day. Go to the beach, the football games, the basketball games.”

That evening his friends wheeled him down to the pier where they used to leap into the bay. The next night he made it to Gibraltar’s varsity football game.

“He wouldn’t stop talking about it!” Annika says. She wants to take him to the first Packers game Sunday.

More than anything, Bo says he hopes that the support and love that his friends and community showed for him will not dissipate when he is gone. His mind turned to the small gifts that meant so much to him.

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Bo Johnson with his mother Annika.

“I wanted to help people if I made it out,” Bo says. “I would just like to go to the hospital, even to [Scandia Village] just to help. Or take a spare $25 that would help a family up at the HOT unit. Donate food to the nurses. Just to help anyone I could in that kind of way.”

At the end of our conversation we talk about one of those small gestures, the orange ribbons that sprouted up on signs, trees, and telephone poles when the community learned Bo was coming home. He talks about what the outpouring of support has meant to him, what his friends have meant to him.

“I want them to know that they were my friends,” he says. “They’ve been supporting me. I’d just like to thank them. It means so much.”

Now, he wants people to remember him, but he wants them to continue supporting others the same way. After he got the news that there was nothing more the doctors could do for him, Bo gave his mother a mission.

“I want you to run every run, walk every walk,” he says. “It doesn’t matter who it’s for. Raise money, and go back to the HOT unit to give families a little money or a gift certificate. Anything.”

• • •

On Monday, August 27, Annika announced that Bo was coming home to die. She had it wrong.

On Wednesday, August 30, Bo Johnson came home to Sister Bay to teach us how to live.

View images.