Counting Down!

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One week from today is Lulu’s LAST dose of chemo! 5 days after will be her port removal and hernia surgery. WOW, It’s really almost here. I wish I could report an uneventful week, but never a dull moment ‘round here …

Jimmy got a horrific flu, which was passed on to Max. I’ve never seen either of them that sick before. And why is it that boys can’t seem to hit any sort of receptacle, be it potty training or vomiting? He erupted like a volcano, all over himself and me, in every nook and cranny of the bathroom floors, walls and grout, while I looked over at the view of the pristine toilet. We spent the night on the bathroom floor together – after I cleaned up the first round and he got his rhythm and aim going! He got to be a downright expert, getting lots of practice every 15-30 minutes for over 8 hours.

While that was bad, we knew we had to protect Lu from getting it. Since I was likely exposed and Jimmy was recovering, I stayed home with M. This is one of those times I wish we had an adopt-a-family program. With nowhere else to take her, off she went to a hotel with Daddy for 2 nights. They had a great time though, and Lulu swam like a fish in the pool as often as possible. 4 days later today, Max is back to school, albeit a waifier version of himself. Seriously, the two skinny guys get the flu and here I sit with my extra lbs of what I’m calling ‘stress weight’? What’s the saying, I’m one stomach flu away from my goal weight? Ok, not really worth it… the gym awaits.

The good news is that Lulu is doing really well, and fingers crossed she will not get this flu so she can get through this last leg of treatment and surgery smoothly!!! She just LOVES homeschool. Her favorite subjects are Recess where she plays outside in the snow, Math – on a great app for addition and subtraction, Reading – her favorite book series Ivy and Bean, and P.E. which consists of chasing mommy around the house and scaring each other into screams by flying out from around any hidden corner. Oh, and Lulu told me Jimmy got to ‘sub’ the other day while I was working. I had to chuckle when she told me about her favorite new class called OPEN GYM. Apparently, this was free time, where you can choose whatever you’d like to do; Lulu made art and Daddy took a nap.

Cheers to 3pm March 6th. Keep your ears open for that bell, if you listen closely, you just might be able to hear it!

Love,

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

Standing in the sun

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It’s like standing in the sun, feeling the healing warmth of it, when someone grabs you by the back of the neck and throws you into a meat locker. But now this place has become familiar. You’ve started to count on being there from time to time. You’ve stashed a parka, some snacks and a book in the back. You know this place and you know you’ll get out. Suddenly, you’re back in the sun, blissful again, a little giddy. You have a secret knowing; this won’t last forever either, but you rejoice in it fully while you’re here, and ask no more of it.

Upon our return from Palm Springs, we headed directly into a spinal tap with intrathecal chemo for Lulu, IV chemo, and the rest of the usual monthly torture. It’s always difficult to shift gears from bliss to this, but we’ve become very familiar with it. Lulu still has a hard time with many aspects of the procedures, but she is light years ahead of where she used to be. Her coping skills improving, her understanding growing … which is good and bad, as she has become more vocal about it: “Mama, why did I get in this awful mess to begin with?” “I HAAATE LEUKEMIA!!!” “I HAAATE taking these pills every day!” And my very least favorite: “WHY did I get leukemia?” I can explain almost all the questions except that one. I wish I had an answer.

Life has been so great lately that I almost forget we are still in this crazy cancer world. The reminders pop up though. When I give her chemo every single night. When I see a picture of her before treatment. When I recently read a touching story Sarah, a little girl from her school, wrote about her. But the lows are not as low as they used to be, and the highs feel higher. I’ve been continuing to take in and feel all the blessings that have been coming our way, and there are many: Lulu is doing well overall, going to school more consistently, learning to read. The What if Book is getting some buzz and likely published soon, as well as another big what if I’ll tell you about if it happens. Then there’s the Make a wish trip to Hawaii. I have an editorial that will be published internationally. Jimmy’s indie film in an international film festival nominated for 3 awards, Hawaii. Max landed a role at a professional children’s theater. We continue to feel loved and supported by our friends and community in so many ways. Hmm, have I mentioned Hawaii?

Lulu had her Make-a-Wish party last week, and we surprised her with it. I’ve included some pics below. I had gotten the rough draft of the speech from Sarah on the way to the party, which somehow set the tone. Her assignment was to give a speech about someone who had inspired her. She is 11 years old in 6th grade. Please read:

Lulu, a 6-year old girl, has fought many battles and continues to do so everyday. Lulu attends my school. Last school year on November 7, 2011, just days before her 5th birthday, she was diagnosed with A.L.L., acute lymphoblastic leukemia. In an instant, Lulu and her family’s lives changed forever. The journey Lulu and her family have been on has taught them many lessons. These are lessons that Lulu can teach us.

Since her diagnosis, she has spent days, weeks and months at Children’s Hospital of Wisconsin. Lulu has endured chemotherapy, its side effects and a burst appendix. Lulu is now in remission and is going through months of maintenance chemotherapy. Her mom T, her dad Jimmy and her brother Max have played a big role in Lucia’s fight against leukemia. Lulu’s mom has maintained a blog to provide family and friends with the latest updates. The blog has connected all those touched by Lulu’s amazing story.

I’d like to share a few examples of her courage and wisdom. One night in the hospital, when her liquids were restricted for medical reasons, Lulu was very thirsty and kept asking her mom for water. After not getting any, Lulu shouted: “My tummy is a desert, and there are animals there! And it’s hot and dry and they’re gonna die if they don’t get some water! ALL THE ANIMALS!!!” Then after her two sips of water, Lulu with a knowing smile said: “The desert is now a garden”.

Lulu’s mom has described their journey as a roller coaster or marathon. One day Lulu described their journey this way to her mom by saying: “I know Mama, storm, rainbow, storm, rainbow”… while drawing an invisible rainbow in the air with her finger.

Lulu continues to share her wisdom with her family and with all of us. One time telling her mom: “Mama, just because we can’t see something doesn’t mean it’s not real. We can’t see air or the wind, and that’s real. We can’t see God, but that’s real too.”

On another day, her mom is talking to her and tells her how proud she is of her and that she is going to grow up to be a strong, wise and beautiful woman. She looked at her mom with big green eyes and says, “So, I’ll be just like you, Mama.” A greater compliment was never given.

Lulu has met many extraordinary families battling cancer while she was at Children’s Hospital. Lulu wanted to help them and had the idea of starting a lemonade stand to raise money for Children’s Hospital and cancer research. With two lemonade stands last summer, she raised over $2,300. I was fortunate to go to Lulu’s house and donate money to the lemonade stand. I got to see Lulu. We talked and played in the sandbox that day. I could see that Lucia was getting better every day.

Our school has been with Lulu on this journey, too. For the last two years, we held a Pennies for Patients drive to raise money for the Leukemia Society, raising over $3,000 in Lucia’s honor.

Last year, Lulu was in K4 for two months prior to her diagnosis. She wasn’t able to return to school last year but did visit them in May. Her mom tells the story: When we entered the classroom, a hush fell over the room. The kids were instructed not to touch Lucia to avoid exposing her to germs. Lulu was beyond excited, bouncing up and down. Gingerly, the little ones approached. One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”. The kids were curious, but completely respectful. Happily, Lulu has returned to school this year joining the K5 class.

Lulu is an extraordinary person and her story is worth telling to the world. I hope someday to be wise and courageous like Lulu and her family.

What a reminder of how much our little one has gone through. How much we have all gone through… We went to the party and Lulu was bubbling over with excitement … and if she can revel in these moments after everything she’s been through, shouldn’t we all?

Love,

a.l.l. of us

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Highlights (mostly!)

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Hello Friends!

Wow, it’s been a while since my last entry.  Thanks for your patience.  I’ll hit the highlights and lowlights to catch you up to speed.  Luckily, this will contain mostly the former!

We ended up spending the holidays in a much more quiet fashion than anticipated.  We were just too exhausted to make the 6+ hour trek to my BFF’s house.  Staying home turned out to be a fantastic choice.  We just needed some R&R after 2012!   As my grandmother used to say, my get-up and go, got-up and went…  We took the kids to Children’s Hospital Christmas Eve.  I know, you’re thinking: “Really?  You CHOSE to go to the hospital?”  We did.  We were so grateful not to be there, that we figured we’d bring some cheer to those who were, while teaching our kids to give back, and be grateful for all that we have (This does not mean that they were cured of their American spoiled-rottenness, but a step in the right direction nonetheless!).

We saw some of our favorite nurses, and our social worker that introduced us to a family who had been diagnosed only 2 days prior.  All it took was one look into their eyes and I was hugging and crying with the mom, while Jimmy did likewise with the dad.  Their shock, grief and overwhelm was palpable, and all too reminiscent.  I think seeing Lulu there, bouncing up and down like a caffeinated bunny was reassuring to them.  Their 4-year-old son also had a.l.l.  Max and Lulu each gave them the $10 they had received from their “aunt” Carrie, to buy a gift for their son.  It was very tender, and the parents took a picture of our kids in their laps, to show to their son later.

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I’ve gone back to working on more photo shoots, and after a rough first day, felt back in the swing again.  The first day was just tough because I had to return to the ‘scene of the crime’, in a way …  I went back to the photo studio where I found out Lulu had cancer, and it was much more difficult than I had anticipated.  I was actually shaking as I drove there, and couldn’t even walk past the station where I had learned the life-changing news.  Ugh.  I was lucky to work with some wonderful models and crew though, and one photographer even brought me a beautiful bouquet of flowers to welcome me back.  That gesture was really big for me somehow.

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After that week, I spent left on my first work trip in over a year.  I went to NYC to work with a new crew, with the exception of my art director/friend.  It ended up being the perfect trip, with a fantastic crew who dressed up every day including a pajama day, hip-hop day (see above – I’m so gangsta, ha!), and pirate day!  Who does that?!?  We all hit it off and ended up going out the last night and having a lot more fun than my head would have asked for the next morning :-).  Oh, and my friend and I even caught a show!  We saw Chicago, and it was her first big show ever.  I swear I had more fun watching her delight than I did the performances!  There’s nothing like your first Broadway show.  She went from 36 to 6-years old as she sat on the edge of her seat, her hands moving from her open mouth to her heart over and over again.

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Lulu missed Mommy lots, but got through the week well.  I was so relieved.  It was very difficult to leave, but it was also much needed time for me to be … me again.

I entered a whirlwind upon my return as we prepared to have a film crew to our house the next day.  Do you remember the poster Lulu was in for Jazz Pharmaceuticals?  After meeting with them, they asked us if we’d be interested in doing more education with them.  They are the company that had the alternative drug to PEG-asparagenase, the drug Lulu almost died from when she had an allergic reaction to it.  We are glad there are companies out there who are looking for alternative and solutions to problems like these, and were happy to work with them.   I can’t say that about every drug company, but they really have a culture of integrity that has been consistent in every person we’ve met there.

They spent about 6 hours interviewing us, and made us feel very comfortable while discussing difficult topics; not an easy job.  Jimmy and I went first while the kids were in another room, then Lulu went solo and didn’t want to perform.  She was so shy you could barely hear her, which cracked me up because she is usually so loud and boisterous!  We all made sure the questions weren’t too pointed for her, as we really don’t want her to recall all the detailed horrors of her journey.  Max had the final interview, and of course nailed it.  That kid!  He answered the questions in his wise-old-young man way.  It was actually good for us to hear him sum things up and know his understanding even surpassed what we thought he comprehended.

More good news!  We will be flying to Palm Springs to speak at the National Sales Convention for Jazz Pharma.  The four of us will be featured on stage as well as in a break-out room for more in-depth q&a.  They want their company to see real faces of cancer, to keep what they do in tangible perspective.  I think we will serve as both a warning and an inspiration.  As we discussed during the taping, we never thought this would be our story, but cancer is indiscriminate.  We feel honored to participate in this way, and feel strongly about raising awareness about childhood cancer.

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This leads me to the lowlight portion of my entry.  Jimmy’s mother recently underwent two back surgeries, finding out shortly after, that he leg had broken just below the hip.  She had another surgery with pins and screws to fuse her leg back together.  She is recovering, but still in tremendous pain and we appreciate any good juju, thoughts and prayers you might send her way.  Her name is Sharon.

Overall, life is feeling hopeful again.  Jimmy is off on a work trip; Lulu is home with a cold, but nothing more.  Hopeful … for the first time in a long time.   I’m trying to stay in the moments, and feel them fully.  I’m doing my best not to think about the last year too much, or the fears of the future.   I’m remembering my previous entry on this topic:

Sit in the moments like a jazz musician sits in the pocket, never before or after the beat, behind or ahead of it.  Enjoy the sweetness of each note as it plays out.

Did I just quote myself?  What a dork.

Love,

a.l.l. of us

 IMG_2322 Oh, Mom …

Silver Lining (plus recording of Lulu singing)

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Hello Friends,

Since my last entry, Lulu’s counts dropped even lower, which was unexpected.  We had taken her off of her daily chemo, but she was still getting Bactrim two days a week and methotrexate once a week.  The first is to keep her from getting infections, and the second is another chemo drug.  These proved too much for her already falling counts, and her ANC (fighter white and red blood cell counts) dropped into the low 100’s.  A normal ANC is over 1500.  Needless to say, she was quarantined until further notice.

I was 3 days into a healing cleanse, our winter launch was a few days later, and Jimmy was deep into work.  My usual response to an unexpected storm cloud like this is slight panic, wondering how I’ll work, what we’ll do at home, how I’ll get to the grocery store, etc.  But Lulu was absolutely thrilled to be on lockdown, and spend time at home.  Her attitude must have been contagious.  Instead of my usual coping through the 5 steps of grieving, I jumped right to acceptance.  There was something in her heart that reached out and touched mine in a way only a parent can understand.

We were instructed to take her off all medication.  She was home for 3.5 weeks.  The most interesting thing about this time, was watching my little Lulu return to me.  Every day she was off the medication, I could see the fog lifting.  Slowly but surely, her sweet spirit was fighting its way back!  The relief and joy in seeing the ‘real’ her again, combined with precious time together turned out to be the best Christmas gift I could ever have asked for.  I was falling in love with my Lulu all over again.  My little girl was still in there after all.

There was even a shift in her voice, which went from almost foghorn to tinker bell.  The OCD dissipated into near nonexistence.  Her babbling became less manic, and more bubbly: “Everybody makes up words Mama, China people, Mericans, even people who can’t talk!  They make up words with their hands.  You and me too, we make up words!”   She is fiercely funny, and can deliver a line in such a dead-pan way, you’d think she was a 25 year-old comedienne.  After asking her to clean up her art area (she’s since learned the word chaos) she says: “I just cleaned up this mess, am I the maid here?  I don’t think so.  I don’t want to have to clean this mess up again.  Good grief!”  You may be thinking she’s mimicking me here, but she’s not.  She ends with a knowing smirk on her face, fully aware of how funny her faux tirade is.

We watched girly movies, cuddled, made art instillations and stayed in our jammies for 3 days in a row, just because we could.  Jimmy’s schedule let up the last week, and he and the kids bedazzled and holidazed the house magnificently.  I didn’t grow up in a house where we decorated for the holidays, and I truly appreciate that Jimmy cares so much about making this a tradition for us.

Lulu returned to school late last week, just in time for her holiday concert.  As the three of us sat in the audience, I fought back the big ugly cry that snuck up on me as I watched her on stage.  There was my beautiful little girl with her newly sprouting hair, dressed in a green and black vintage-y dress, with a huge black flower in her headband singing her little heart out.  I thought back to where we were last Christmas, and where we are now.  The feeling of gratefulness washed over me as if someone had dumped buckets of warm water over my head.   Thank you, thank you, thank you God and universe for saving this precious soul.

The holidays are upon us, and we couldn’t be happier.  Maybe every cloud really does have a silver lining.  Maybe we can forget the misery but remember the lessons.  Maybe we can minimize the suffering and expand the laughter.  Maybe, just maybe, hope will reside in us permanently.  For now, maybe feels pretty grand.

Enjoy this audio clip of Lulu singing her Christmas song through the link below (If Cindy Lou Who could sing, this is definitely what she would sound like!)

Lastly,  I’ll leave you with a very important piece of advice from Lulu:

“Never, NEVER run with your hands in your pockets!”

http://chirb.it/g42rDv LULU SINGING CHRISTMAS IS A TIME FOR LOVE

Love, and Happy Holidays,

a.l.l. of us

LYRICS – Christmas is a Time To Love

Christmas is a TIme, Christmas is a Time, Christmas is a Time to Love

We often start to worry, and people get upset when things don’t all go right on Christmas Day

What we should remember, in all the push and shove is Christmas is a time to love

(repeat chorus)

Maybe things don’t sound right, or look the way they should

and maybe they’re not perfectly in tune …

It really doesn’t matter, let’s keep our eyes above

’cause Christmas is a time to love

(repeat chorus)

To my Big Boy on Thanksgiving

Hello on this special holiday!

There are so very many things to be thankful for this year.  But I’m dedicating this Thanksgiving to my son, who sits by the sidelines while his sister receives positive and negative attention. As she is showered with gifts, he resides quietly in grace. He thrives despite stress, and brings his gift of laughter to the worst of situations.
I love you ‘Bugs’, you are an amazing unsung hero, wise beyond your years, and I’m so thankful to be your mom.

Happy Thanksgiving to all the unsung heroes out there!

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.

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No news is GREAT news!

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Hello patient Friends!

It’s been a whirlwind lately, and I feel like a Tazmanian devil!  – a whirling dervish of new life is unfolding with camps, activities, work, change, new med schedules, work, friends, auditions, callbacks, tae Kwon do, dance class and did I mention work?  Whew!  Notice housework was NOT included in that list…

We officially started Maintenance Therapy 2 weeks ago.  After the spinal tap and IV chemo in clinic, Lulu was quite sick for a few days.  We thought uh-oh, is this what maintenance is going to be like?  She was taking about 16 pills/day including steroids, daily chemo, and counteractive drugs.  A couple of days in, she developed a fairly sever rash on both of her arms.  We called the H.O.T. unit to see if we’d have to make a trip to the dreaded emergency room.  They had us wait it out, to see if it worsened or she developed a fever.  NOPE!  No trip in!  YAY!  – and that seemed to set the tone for the remainder of the two weeks.

Each day, Lulu has been getting stronger, happier and busier.  She’s been going to a 2.5 hour daycare/camp and is in her glory!  We’ve even had a couple of play dates and each day, her excitement seems to grow exponentially.  At bedtime, she looks forward to the next day so much that she sets all her clothes out neatly, and has me write up a list of all the things we are going to do the next day.  Here is an example:

-Wake up

-Get dressed

-Eat

-Make a few changes in the bathroom (my little artiste, she decorates the bathroom with her little trinkets and moves the soap dish over)

-Go to the park

-Get ice cream

-Cuggle with Mommy (Cuggle is my kids’ family word for cuddle-snuggle)

-Make art

-Watch a show

-Play with my brother

It absolutely brings tears to our eyes to see her having so much joy!  We’re doing our best to wean her off of as many drugs as possible, while still keeping her comfortable.  ‘Sybil’ is still rearing her ugly head here or there, but Lulu is winning out and trying her best to cast out that evil hold steroids can have over.  The more distraction and engagement she has, the happier she is, and she asks every day if she can go back to school yet.  I just can’t wait until she goes back to see her teachers and friends.

Max has been having an exciting summer, and just auditioned for the professional children’s theater here.  Over 600 kids audition at the generals.  He did such a good job that he was called back on the spot, even though the callbacks aren’t until September!  He had his first callback yesterday, and has another today for a different show!  I’ve NEVER seen him so happy and excited about anything … not even football.  It was so cute, and former-performer mama is proud as a peacock.  We’ve had so much fun preparing his monologues and audition material, what a great bonding thing for us to do together.

For Jimmy and I, life on Planet Multi-Task has been interesting.  He’s been traveling and working and working and overworking, in desperate need of a vacation.  I’ve been carting the kids around, and working a lot more in preparation for the launch of the E-com startup I’ve been working on.  I’m still enjoying it, despite the revved-up pace.  If being busy is the biggest problem I have, then life is grand.  Now, if only I could get a personal assistant who also did laundry and cooked…

Great news on our friends too:  BO has made an unbelievable turn-around.  He fought his way out of ICU and back to the H.O.T. unit.  He’s been doing everything asked of him and more, and the doctors are blown away by his progress.  His strength is nothing short of Olympic, and all these kids deserve a gold medal!  Kate too, has made great strides and is also in maintenance, and just celebrated her 4th birthday – at home!  Kaylee is healing well from her burns, and was discharged shortly after admission.  All those thoughts, prayers and good Juju are really working friends!

We also found out Lulu qualified for Make-a-Wish!  Now, the wish-granters begin finding out what her wish will be.  So far, she’s been telling us she wants to see the rainbows in Hawaii.  I guess that could work … J

With that, I’ll leave you with Lulu’s quote of the week:

“Love is the most important thing, because it brings power to other people”.

Indeed.

With love and gratitude,

a.l.l. of us

p.s.  A very special thank you to my BFF Jen and her girls walking in Relay For Life on Lulu’s behalf.  Here’s a video link of their efforts:  http://www.youtube.com/watch?v=wqjaDYJH-HY

An eventful day

Yesterday turned out to be an eventful day.  I got a phone call from my Dad, who had gone back home for a while.  He told us his wife’s granddaughter, Kaylee, had been severely burned in a campfire accident.  Apparently, one of the kids at the bonfire had thrown a large log onto the fire, which in turn threw a large burning log onto Kaylee.  Somehow, she had the presence of mind to jump into the lake, and the kids put wet towels on her.  She was burned on her thigh, side and chin and sent to the hospital.  It looks like she will make a full recovery, minus some scarring.  We are keeping her in our prayers.

Then late to clinic for Lulu’s spinal tap and chemo, we were bumped back.  This meant we’d have to wait even longer before she could eat.  After a minimally dramatic port access, we waited for her blood work to come back.  An announcement came over the loudspeaker calling out a CODE BLUE on the H.O.T. unit.  Oh no.  I thought I recognized the room number.  Maybe it’s familiar because we were right next to Bo’s room last time?  That’s it, right?  I asked the nurses and doctors, realizing full well they couldn’t disclose information about another patient, and I was putting them in an awkward position.  I continued to ask anyway, hoping to see some glimmer of confirmation or denial in their eyes.  Let me tell you these guys would all make for great poker players; not a twitch or a tell to be found.  I texted his mom, but no response.  Must wait.

Lulu’s ANC was only 250, so there’s no way we were starting treatment that day, and probably shouldn’t have set up a play date and dance class for the week!  I practically threw a bagel at Lu, who started devouring it.  Sometimes it still seems strange to see her eat!  After exam, learning the new protocol to come, and getting prescriptions called in, we are told we can go, and come back Monday for treatment.

I knew I was on the visitor list for Bo, so I casually asked at the security desk which room he was in.  My fears were confirmed.  Shit.  He’s been moved to ICU.  We later get a text from his mom that he’s had a seizure and they are doing a cat scan.  They’ve found something in his brain, but have to do an MRI to find out what.  I can imagine the terror his mom and he is feeling.  I was praying he might be sleeping during all of it.  They have to wait to find out the results, and are hoping it’s not leukemia in his brain.  Oh, that waiting for MRI results … brings me back to when Lu was so sick when her appendix burst, but we didn’t know yet.  Waiting is absolute agony.  I got another text at almost 10:30 pm from Bo’s mom sharing the news that it’s a complication from his medications that cause extremely high blood pressure.  It may be reversible, and they are treating it.  We were relieved, but still concerned, and continue to send them as much strength as possible.

Most of you don’t know Bo personally.  But I share his story because I feel like he’s everyone’s child.  He has the kind of beautiful spirit that makes you feel like you know him, he reminds you of your own precious child, or the one you hope you have.  He’s kind, sweet, strong and loving.  These kids really are all of our children.  I used to think this stuff happened to other people.  How naïve, and how superior!  It really can be any of us, at any time.  We’re all in this together.  If this sounds a bit maudlin or preachy …  I can’t help but be moved to by this year and the events that continue to unfold.

Lulu was shaken up as well, and I wish I could protect her from this madness … and that I would have been better able to hide my own emotions.  We are careful about what we say, but these situations have become a part of our everyday lives.  She said she was praying for Bo, and worried about him.  She wants him to be able to go home soon.

We are still trying to put emotion into action and had another successful lemon-aid stand, this time at our church.  We raised $600 in 2 hours for children’s cancer research.  Thank you for those of you who donated online as well, that helped a lot!  Jazz Pharmaceuticals donated $1000 to the MACC clinic at Children’s on our behalf, for Lulu’s photo shoot.  Many of you are raising money in races, biking, walking, running, swimming, and we are so touched by your efforts, and proud that you wear LULU on your shirts as you race.

Thank you, also, to the wonderful doctors and nurses at Children’s.  I neglected to mention Lulu had a party at clinic on her last day of delayed intensification.  It was her official last day of shots, and Bonnie, along with the other nurses, made a huge sign for her with balloons, candy and presents to celebrate.  THANK YOU.  I’m continually impressed with the care and thought you all put into your jobs.  You are still by our side for every scream, every tantrum, every hug and every giggle.  I don’t know how you can deal with the love and the loss your jobs entail, but I am grateful to have you.  And humbled by the strength you have to keep on loving, despite the risks to your own hearts.

Thank you all for reading, acting and sharing your hearts with not only Lulu, but with all of the Kate’s, the Joshua’s and the Bo’s of the world . . .

Love,

a.l.l. of us

Reaching Bittersweet Maintenance

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Hello Friends,

It always feels difficult to get started on these entries, but once the words begin to come, they do seem to pour out.  Today, I’ll start where I finished last; the lemon-aid stand.  I think we’re all still feeling the joy from that day.  We got up early, wiped the sleepy dust from our eyes and started cleaning, peeling and juicing to make the lemon-lime-strawberry concoction. We couldn’t just have regular ol’ lemonade … it had to be PINK!  We made gallons of it, and it was tasty!  As Jimmy documented every move on video, we somehow opened promptly at 10 o’clock.  It was hot but bearable outside, eased by the cloud-cover overhead.  Customers were ready at the wait, and came in droves throughout the day.

We had special guest appearances by little Kate, who looked positively beautiful, and Toussaint from the ‘Seeing in Believing’ May blog entry!  Neighbors, friends, church members and blog readers came and populated our front and back yards with kids in tow (who generously brought money from their piggy banks).  Our local news even came out to do a story on us, which I’ll try to post soon.  They did a lovely job, and played it at both the 5pm and 10pm news with Lulu lead-ins during the Olympic trials.  We felt our community holding us up once again, and wished we’d had more time to talk to every person who came.  I actually lost my voice by the end of the day!  I’m thrilled to report that with your help, our little 3 1/2-hour lemonade stand raised $1,725.14 for childhood cancer research!  We are planning another one July 15th at our church and, by summer’s end, hope that we can really make a difference in either the H.O.T. unit or the Blood Research Institute.  We’re speaking to people now to find out where the money can best be utilized, and not be lost in the red tape of donationland.

We spent the 4th of July at the hospital, because, ya know we like to spend every holiday there ;-).  We happened to be right next to Bo’s room, and I felt terribly that he had to hear Lu screaming through her shots while he was already having a hard time.  He’s in a torturous pain from mucositis, but got his double-cord transplant successfully after multiple rounds of total body radiation.  Please keep the good juju coming for him that all goes well.

We talked about getting to Maintenance Therapy with the docs, and what it will entail for Lulu.  It’s not as easy breezy as I had hoped, and the conversation left me a bit deflated.  She will start off with a spinal tap with intrathecal chemo, and a lot more chemotherapy to follow.  She will get one chemo drug at home EVERY SINGLE DAY for 20 MONTHS along with others received regularly and intermittently.  She will also get steroids 5 days every month (hear inner scream) and more spinal taps.  Wow.  The good news is that we won’t have to go into the hospital nearly as much as of recent.  If all goes well, she will only go in once/month!  Now that’s huge!  Her beautiful blonde hair will start growing back, and she can go back to school in the fall.  Halle-freakin’-Lulu-ya!!! We have the end date penned into our calendars: March 6, 2014.

On the home front, Lu is still a little spitfire, but showing flashes here and there of her old sweet self.  I’ve sworn to move out when she is between the ages of 12-16, and return after.  I’ll still call, and skype.  – Maybe even have a weekend visit and holidays … just kidding (mostly)!  I really do adore her and she is my little Tinkerbell.  They make ‘em cute for a reason, right?  Jimmy is, well, Jimmy is … hmm, too many words to fit in here.  He’s been working harder than I’ve ever seen him work in my life.  I must track down his swim coaches and thank them, because I truly believe his training in college has prepared him for this both mentally and physically.  You see, Jimmy was a world-ranked distance swimmer, in the 800 and the mile.  Can you even imagine swimming a mile!?!  I’d be happy to jog a mile these days!  I think you’d have to be incredibly tough on all fronts to do this, and do it for years.  So, coach Bob and Jack, thank you.  Sports really do shape a person.

Oh, and I must include his biggest news:  He had a personal dream come true last week!  His favorite band in the entire world is the Foo Fighters, and he got to film them at a live concert!!!  He was just adorably giddy about it, really unlike him who plays it very cool most of the time.  I loved seeing that side of him and he wholly deserved it.  At one point while he was shooting, Dave Grohl almost knocked him over when he came flying up to his camera.  I think Jimmy told me about it at least 5 times.   – Love it!

I’ve been continuing to work part-time on my consulting job, and loving every minute of it.  Thanks Grandpa, for holding down the fort while I’m working at the coffee shop, which the family now knows as my c’office.  I feel like I’m overflowing with pent-up work energy, like a runner crouched in the starting position on the track before the gun is fired.  I’ve needed this outlet, and am so grateful to have it.  It adds balance to me, to Lulu and to the whole family dynamic.  Max has been taking a theater camp, and he too, seems to be bubbling over with enthusiasm.  He’s actually super talkative at the end of the day!  I get to ask him all kinds of questions and actually get a response, well, except when I ask him about girls.  That’s still off limits.  I guess he’s not interested yet (yay!).  On the contrary, Lulu already talks about her little friend Franklin saying things like “Mama, sometimes I fink I wuuuuv him!” followed by a cheeky giggle.

Well, dear Friends, we are getting there.  Wherever ‘there’ is.  Getting to Maintenance, getting to the new normal and whatever that will mean.  I’m hoping the forecast is light on rain, and heavy on rainbows.

Love,

a.l.l. of us

Lemon-Aid

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Hello Friends,

I finally have a minute to give you an update.  Lulu is getting a blood transfusion at the hospital, and after getting some Benadryl, is heading off to what I hope will be a nap.  It’s quite peaceful here right now, the lights are dim, the nurses don’t have to check on us quite as often as usual, and I’m in my favorite lazy-boy recliner with laptop on my lap top.

It’s been a stressful time, although Lulu is doing amazingly well.  I feel a little guilty complaining because this course has been SO much better than expected.  Physically, Lu is kicking booty, hasn’t gotten sick once, is continuing to eat (junk food), and has enough energy for a thousand men.  I don’t know how someone can have so much energy on chemo.  It seems impossible.  I swear they’re slippin’ in some speed or amphetamines of some kind into the mix!

This brings me to what’s been harder to deal with; her mood.  ANGER has seriously set in, and it comes out hard, fast and often.  Her tone is as disrespectful as a teenage girl’s during puberty.  I think it’s a combo of all the drugs coursing through her veins, as well as a general feeling of ‘this sucks and I’m sick of it’.  She says things like “I wish I NEVER got sick in the first place!”  “Why do I have this and other kids don’t!?!”, and “YOU’RE lucky YOU’RE not sick!!!”  Can’t blame her.  We all feel the same way, including Max who also seems more affected than usual these days.  He’s been dealing with her anger as well, but luckily has camps to keep him distracted during the day.  It feels like this all should have been over a while ago, yet we go on and on with treatment.  She has to endure more shots in the legs, more pills, more chemo…  We spend a lot of time in the hospital: 4-5 days this week, and 3-4 next to get treatments. She also got an ear infection, which can make anyone crabby. I’m feeling slightly relieved that she needed blood today, since being low in reds makes you extremely irritable.  It feels like a partial answer at least.

I just had to take a break because, ironically, she threw a HUGE tantrum after taking a liquid pre-med she didn’t like.  She slammed her fist into her juice box, which exploded all over the room.  Of course the nurse and doctor were there to witness the event for maximum impact.  It’s hard not to be embarrassed by her behavior, and it’s even harder to keep my own temper under control as of late.  I’ve failed on a few occasions, but try every day to stay calm.  Dad and Jimmy have both been gone again, which makes it harder.  My dad had to go to help out with some flooding up north, and I know he is needed there.  Jimmy’s been all over different states working and we’ve been two ships passing in the night.

I have to tell you about a little escape I wriggled in.  I went to NYC for 2 days with the consulting job I’ve been working on.  Somehow, I’ve been juggling a fairly heavy load of work with caretaking (how does Jimmy do it?), and have truly been enjoying the distraction work brings.  The day I left, Jimmy got home at midnight from the airport, and I flew out at 4 a.m.  The trip seemed guided by fate from the get-go.  I ran into a model/friend whom I adore on the flight (I work in the fashion industry), and we ended up sharing a cab together and catching up on the way.  That seemed to set the tone for the whole trip.  My worlds kept merging in unexpected ways.  On more than one occasion, I would be in a meeting with someone who would share how cancer had touched their lives, or they were dealing with it now, or had dealt with it in the past.  No one knew of my situation, the information came organically.  Those of you who have children know what it is like to meet other parents and instantly be in the so-called Parent Club?  Being in the Cancer Club seems to create an even deeper and more instant bond.  I had a potential vendor hugging me with tears in her eyes, and shared an unspoken connection with a former colleague that went beyond the moment.  His partner had been just 2 years out of Cancerland.

This strange kismet continued into the evening.  A very good friend of mine is a famous Broadway percussionist and was performing at The Carlyle the night I was in town (brag, brag).  Luckily, my colleague Joseph was up for it, and we headed to the show.  We got the last two seats in the 75-person capacity room, and ended up moving over to what was a perfect spot for the show.  It was in intimate four-person cabaret act with Laura Osnes who sang the bejeezus out of every song.   She dedicated one song to her mother who had recently passed away.  I fought back the tears and hoped my colleague didn’t think me completely unprofessional.  This was juxtaposed by a shout-out that came as a surprise even to me when I all-too-loudly said ‘That’s Joel Freakin’ Gray!!!” as he stepped onstage to do a number with Laura.  Did I mention Tommy Tune was only a few feet away from us? It was an overwhelming blessing after not being out in so long.  We met my dear friend Larry after the show and talked with Laura.  She told me her mother had died of breast cancer, and I told her about my daughter.  More tears.  Sheesh.

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The next day went very well, I kept it togethuh, and we flew out later that night.  Well, we flew out after our cab ran out of gas DURING RUSH HOUR ON THE FREEWAY IN NYC.  – And it felt like it was 115 degrees outside.  Something in me just knew we’d be ok, and I felt totally calm.  Sure enough, another cab pulled up within two minutes even though he was headed in late to a shift.  We got to the airport, waited for them to fix a leak, and landed home safely that night.

Back to reality; hardcore reality.  I know many of you are not only following Lulu’s progress, but have gotten to know a little about our friends Joshua, Kate and Bo.  Joshua is declining rapidly, but seems to be enjoying every minute he can with his family, traveling and meeting his idols.  Kate is starting to walk again, and eat a bit, but still has a long journey ahead.  Bo and his family got the devastating news that not only has his cancer returned, but it is difficult to treat, and a kind the docs have never seen before.  Long story short, they were given a couple of options.  They could do palliative care, which means just making him comfortable with no more treatment, or total body radiation and chemo and fighting like hell into the unknown.  He and his mom are choosing to fight!  Percentages of survival don’t matter if you’re in the right part of the equation, and I believe Bo is capable of being the exception.  Lulu and I visited him yesterday, and although I could see the sadness in his eyes, I could also see someone just pissed off and determined enough to fight.

As I hugged his mom, an amazingly strong and gregarious woman, I could feel her pain.  She loved seeing Lulu, but I know it’s difficult too.  When your child is very sick, it’s bittersweet to see other children doing well.  You’re so happy for them, but you also feel other emotions.  Not envy, but rather a deep longing.  You long for the blissful ignorance of having a healthy child, one you can take home and hug and love forever.  Having been on both sides of the coin, I’ve felt all these emotions, and know how other parents feel when they’re in similar positions.  It’s all just really hard.

I’ve been in tears daily since we got the news on Bo, and I know all of you as humans are affected by reading this.  While I ask for your continued thoughts and prayers for these families, I hope to call you into action as well.  I’ve realized my own tears, and feelings of sadness aren’t tangible; they don’t make any difference in the real world.  We want and need to DO more.  Lu had the idea of starting a lemonade stand to help other kids.   We will open Lulu’s Lemon- Aid Stand this Sunday (and as many days as we can) in front of our house, all donations to go to Children’s hospital and cancer research.  Even though this is a small gesture, it is something.  We plan to do much more in the way of donations after we get through our own medical bills.  I want to ask each of you to do whatever feels right to you, big or small.  Maybe it’s visiting someone who has cancer, sending a gift, making something to donate, giving blood or platelets which are always needed, making a meal, or donating in a monetary way, even buying local produce to help reduce pesticide use, whatever floats your boat.  Post it here to help inspire others, or keep it close to your heart.  If we all turn our empathy into action, maybe there will be less Lulu’s Kate’s Joshua’s and Bo’s in this fight.  The little things really do make a difference.  Lulu offered a woman a potato chip on the elevator yesterday.  A potato chip.  The woman crouched down, thanked her and gave her a hug.  She said she really needed that today, and broke down in tears.  I had seen her with her little boy earlier, knew what she was going through, and how that tiny chip and that big hug affected her.

We are only two weeks away from beginning our 20 months of Maintenance Therapy, and are pushing through in anticipation of a new normal.   Thank you, as always, for riding along with us for 8 long months and onward.  I know we’ve had readers come and go, but the majority of you have strapped in, read everything, and continue to keep up on the rainbows and storms of our journey.  We really wouldn’t be as strong without your support.

Thank you sincerely,

a.l.l. of us

Image

Lulu’s Ad

Lulu's Ad

Here it is! We are so proud of our little firecracker. Yes, she is Spirited indeed …

We are a bit in the weeds this week, but I will write asap! She’s doing pretty well, and we are all hanging in …
a.l.l. of us

Allowing Abundance in

Hi Friends,

Thanks for your patience; this week has been incredibly busy!  There’s so much good stuff happening that I’m trying to be conscious of allowing it in, not questioning it, or feeling overwhelmed by it.  After the year we’ve had, this is not an easy task.  I’ve been waiting for the other shoe to drop more than I’ve been allowing  abundance in!  Yet, that is what I aim to do.

I’ll start with no news is good news on Lulu.  She’s the squishiest, cutest and chubbiest she’s ever been, and a whopping 42 lbs. after this week of steroids!  She’s still craving foods like a pregnant woman in her third trimester, but to see her actually eat more than a couple of bites of something is just remarkable.  Her blood counts are next to nothing this week, so she is delayed for the last big-daddy round of chemo.  She might need a blood transfusion or platelets this week, but that feels like a mere pause at a pedestrian crossing compared to the sadistic marathon we’ve been on.  She’s feeling good, drawing rainbows and enjoying the summer!  I too, love summer so much; it makes me feel like a kid again.  Riding bikes, sitting on the porch, having water balloon fights in the backyard … it’s all so filled with life.  Max is excited too, although he’s melancholy over leaving his elementary school.  Well, he’s genuinely forlorn, actually.  But how amazing to love school so much at his age that he doesn’t want it to end?  I don’t recall having that same feeling … do you?

Realizing this will likely sound trivial, I must tell you that Lulu tied her own shoe for the first time.  I think parents with children who are life-threateningly ill subconsciously stop looking at things like comparison charts, growth charts, and expected milestones.  Every time I get one of those “Your Preschooler this Week” emails, I delete it instantly, for fear she may not meet some silly standard listed there.  Before treatment begins, the doctors give you a list miles long of the physical, mental and behavioral problems that can happen due to chemotherapy.  As you sign the documents declaring your understanding of the risks, you force your eyes to blur the words together on the page while holding your breath.  The normal expectations just don’t matter now; all that matters is that she’s healthy.  So, it took me by surprise when she tied that shoe, and how beautifully on par it was.  She was giddy with delight over her accomplishment and both Daddy and Mommy were there to share in that joy with her.

Things with the rest of us have been pretty good too.  After deciding not to work for these 7 months, the perfect opportunity seemed to land in my lap.  I’m doing some freelance consulting, mostly from home.  I could tell you more but then I’d have to shoot you, as I signed a non-disclose J.  Suffice it to say, I’ve had to wake up that fat lazy hamster who’s been couch-potatoin’ it up in my brain.  He didn’t get any warm-up either, just had to clear the cobwebs off his wheel and start sprinting baby!  He’s hanging in there though, after a little WD-40 and some unconditional love.   It’s been a little stressful, but also a welcome challenge, and I think good for Lulu to see me doing something that’s normal to her, too.  Jimmy’s work has thankfully been flowing in like a raging river, and he’s using all his great stamina to keep being the rockstar he is.  He’ll be travelling again very soon, which brings me to the good news that my dad is staying with us for a while!  We’re busy turning our bedroom-turned-closet back into a bedroom for him so he can have his own space.  We are all glad to have him here.

But wait, there’s MORE INCREDIBLE NEWS!  Lulu and we were chosen to do a photo shoot for an international drug company.  Apparently, quite a few caregivers from the hospital referred us to the company that makes one of the life-saving drugs Lulu is on.  This was a real compliment since they wanted a family who was still (mostly) thriving during this ordeal.  (We just found out the divorce rate for a family going through this is 70 percent!!!).  Ironically, the ad is for Erwinase, the drug I wrote about recently that requires shots in Lu’s legs.  They flew in a crew from L.A., and we did a photo shoot at the lakefront, and in our house (OMG, yes, we had to deep clean for that!)  We didn’t know how the day would go with Lu weaning off the effects of the steroids, and being a wee 5 years old.  Well, that little hambone tore it up!  The shoot was supposed to be 3 hours for two locations and ended up being 5.5 hours!  She was eating up every single minute, and you would have thought she’d been doing this for years.  The crew was amazing, kind, and absolutely fell in love with our little princess, hence the extra pictures.  Jimmy, Max, Grandpa and I ended up in some shots too, and had to sign releases.  Lulu told me how happy she was, and that she had “awlways, AWLWAYS” wanted to do something like this.  She had, in fact, been begging me to let her model before she was diagnosed, and I was considering giving in.  It was wonderful to see her celebrated, bald-headed and all, in this way.  Apparently, each person in each of their campaigns is given a word that describes them.  The word for Lulu: “Spirited”…  a perfect fit!  I’ll be sure to put the ad in the blog when it comes out.

So yes, we are allowing abundance in this week, or for however long it is here.  And I’m trying not to feel a sort of survivor’s guilt during this time.  Our friends Kate and Bo are still struggling and we think of them every day along with others at the hospital.  Kate has made huge improvements and is receiving mostly homecare now, but it’s still extremely difficult, and exhausting for her and her parents.  Bo has had some setbacks, but is in line for a bone marrow transplant now and luckily only had to endure one big round of chemo to knock his counts out before being eligible.  I know they’re happy when any of us are doing well, just as we are for them, so I hang on to that.  We go to visit the H.O.T. unit every chance we get, and are donating the proceeds from the photo shoot to that unit.  Please continue to keep all those kids in your thoughts and send them some good juju when you can.

Jimmy and I recently got to go on an impromptu afternoon date, on what was pretty much the perfect day.  As we drank a mojito, ate delicious food and sat in the sun, we felt so grateful.  Grateful for our family, and for you, our friends (even virtual).  Grateful for the beautiful day and the love that surrounds us.  Grateful for this moment in time, right here, right now.  Thank you for not forgetting us, even though life is full and time has marched on.  We welcome and appreciate your love … and abundance!

a.l.l of us

Presenting …. The Amaaazing Lulu!

Lulu.  She’s amazing to me.  She’s been hanging so tough this last couple of weeks.  Although this round has been better than expected so far, it hasn’t been easy on a little 5-year old.  She’s taught me so many things throughout this process.  I’ve learned through her wise words, as well as by what I’ve had to teach her to help her get through this ordeal.

Some of my favorite Lulu quotes of the week seem to develop out of the mist.  She might be sitting in the car, or going for a ride in her stroller, or waiting in the hospital, but they are always preceded by a soft silence:

“Mama, We’re all made differently, I’m supposed to look just like this.  Not like anyone else.  Just like this (smiles). ‘Cause this is how I was made.”

“You know what would be the worst villain ever?  A flower-making villain who shoots flowers out of a gun.  Now that would be lame.  The good guys would be, like, ‘really Dude?”

“Mama, just because we can’t see something doesn’t mean it’s not real.  We can’t see air or the wind, and that’s real.  We can’t see God, but that’s real too.”

“You know what?  Girls can rap too.”

Every week she’s had to endure painful shots in her legs, two at a time, 3 days/week.  Because she had a horrible allergic reaction to one of the chemo’s a while back, she must endure 24 shots of a similar, but different strain of chemotherapy.  Can you imagine being 5 years old and having 3-4 nurses come in, dressed in full chemo gear, holding you down and poking two 2” needles into your legs simultaneously?

So … we’ve been working hard on self-talk.  We have to put numbing cream on the spots 1-2 hours before injection, which gives plenty of time for the total fear and anxiety to build up to near hysteria.   Therefore, we’ve developed an inner dialogue worthy of a scene from The Help:  “I am brave, I am strong, I am tough, I am LULU!”  I whisper it in her ear over and over again, until she starts breathing more deeply.  I’ve taught her about her “brave spot”, which she says is sometimes hiding in her toe, and one time it was even hiding in her bum!  I physically roll the brave spot all the way back up into her heart and have her hold it there. We talk about how many times she will have to endure this, how amazing she is, and what a beautiful strong woman this is going to shape her into being.  She really understands and tries mightily to overcome her fears.

The nurses are as kind, gentle and patient as they can possibly be, and allow Lulu to have her one bit of control over the situation, which is allowing her to count to 5 before they give the shots.  She makes them promise over and over again to do it quickly pweeze, and put the band-aids on wright away.  Pweeeeze Pweeeze! After a few rounds of that, she gathers herself, closes her eyes and says “o.k., o.k. I’m doing it.  I’m doing it.  O.K.  She likes to watch everything that happens, so she chooses one of her legs to look at, then, as fast as humanly possible, she says “onetwofreefourfive!”  The injections come, and even with the numbing cream, the chemo going into her thighs burns.  She screams operatically, and squeezes our thumbs as hard as she can.  She really, really likes both Jimmy and I to be there, and the days Jimmy can’t be there are always harder.  After a few minutes she recovers, and always says “That was the ONLY storm for today, right?  Now it’s rainbows for the rest of the day! RIGHT?”  Yep.  Rainbows the rest of the day, I promise honey.   We have two weeks off from these, then two more weeks on.  Good grief.

Other than the shots, Lu’s been tolerating her treatment extremely well!  The steroids haven’t been nearly as bad as the first round, and I think we’re trying to see the lighter side of her dramatics as well.  Just don’t laugh at her when she’s mad!  Ooh, it’s so hard, she’s so funny!!! Everything is theatrical. “NO, MAX IS BUUUUGGGING MEEEEE!!”  “WHY won’t Max PWAY WIFF ME?!? I WUUUUV HIM!!!”  These sentences could be said within 5 minutes of each other.  You get the picture.

She’s been nauseous a few days, but is STILL EATING!  I’m afraid to even write this down, that I might jinx it somehow, but she is OFF OF HER FEEDING TUBE!!!  Oh, it’s glorious to see those two little soft cheeks again.  She looks so beautiful, and is overjoyed at getting that darned tube out of her nose and throat.  We’re praying she doesn’t need it again, but the docs know it’s a possibility if she doesn’t eat enough, or starts vomiting.  Her counts have just begun bottoming out and the hardest drugs begin next week, but one day at a time …  I know this little girl can do anything she sets her mind to.  She is truly one of the most determined people I’ve ever known.  If she will only use her powers for good, how amazing she will be in the world!

Oh, and know that Lulu fully realizes how special she is, as she demonstrated the other day:

“Do you want to see that I am special?” (gets up from her chair, turns around with her back to us, then whips her head around) “Look!!!  I can see my own butt!”

It’s been a rainbow-liscious week, which wrapped up with my big boy playing the lead in The Jungle Book, and my hubby and baby girl going live on the radio.  Max was adorable in his little red loincloth and fake-bake.  He was bubbling over about it, and told me that if he had a second middle name, it would be Actor.  A ham is born.  Daddy and Lulu were on the radio yesterday to raise money for Children’s Hospital.  To say I’m proud of them doesn’t begin to cover it.  All got to listen to my articulate, obviously moved husband and the sweetest voice you’ve ever heard from Lulu, who knowingly wraps things up beautifully in the end of the segment.

Love,

a.l.l. of us

Unexpected Kudos

Hello Friends,

As I was responding to the comments readers had made on my blog this week, I was delighted and surprised to find this:

“It’s an odd little community of bloggers–those of us on-line writing our mind and heart. And then to stumble upon you and the Grace and courage conveyed … remarkable. I read your blog, because it breaks open my heart each time I do and it reminds me what truly matters in life. As Billy Joel once sang “I have been a fool for lesser things.” I nominated you for the Very Inspiring Blogger Award.  I want you to know that you and Lulu have a wide touch…beyond family and friends…into the internet ethers, inspiring and blessing people like me who bear witness to this sacred dance you do with your daughter. You and Lulu are in my heart and I am grateful to follow your story and to bear witness to its awful tenderness.”  

Stephanie Raffelock  http://callingoftheheart.wordpress.com/

  

Wow.  What a wonderful surprise.  I’d like to thank Stephanie for nominating me for the Very Inspiring Blogger Award.  I didn’t know if my blog would really reach people beyond the cancer story … I just hoped that it would.  The award is truly lovely, but the words from Stephanie are the real trophy to me.  Her writing is soothing yet inspiring, and reminiscent of my mother’s ideology.  I’m so grateful that she found me, and that I found her writing.  I hope you will visit her site often:  www.callingoftheheart.com

To receive this award, I must list 7 interesting things about me, and tell you about some bloggers that inspire me, so here ya go!:

7 Things:

1.  I used to be an opera singer.

2.  I (very) occasionally snort when I laugh.

3.  Between singing jobs, I once did a national tour where I played a dancing Sesame Street-type character.  The costumes were 40lbs, and difficult to see out of.  At one of the shows, I fell off the stage onto the unsuspecting first row of children.  No one was hurt in this horrifying incident :-).

4.  I grew up painfully shy, and although you wouldn’t guess it if you meet me, I still struggle with it.  Now it just comes out as intermittent moments of social awkwardness. Nice, huh?

5.  Mad Men and Smash are my drugs of choice.  I’m totally addicted.  I even dressed up as Joan for Halloween.   I stuffed a padded size F bra into a tight red dress.  Men still stopped me to ask if they were real.    Oy.

6.  I rowed crew for a summer 3 years ago.  I was in the best shape of my life and always long to get back to it.  I loved the peacefulness of being on the water and the camaraderie of the women.  Of course, there was that time this duck took a paddle to the head … He came out of nowhere, I swear!

7.  Having a daughter with cancer has almost wholly cured me of the disease to please.  I find it easier to speak my mind, write, and say no.

Although the rules suggest I nominate 7 bloggers, these days I don’t truthfully keep up with 7.  With that in mind, here are my 4 nominations:

Fancy Feet:  www.heidicave.com

A tragedy turned triumph led this woman to share her message of hope, love and courage with us.  She is currently publishing her first book, based on her blog.

An Inch of Gray: www.aninchofgray.blogspot.com

Thoughtful and self-depracating, Anna See takes us on a visceral ride through her life.

Chase your bliss: www.toussaintmorrison.blogspot.com

If you read my entry “Seeing is Believing”, you will know why I am nominating Toussaint.  His young, raw talent is blossoming into a strong voice that will have an impact on this world.

Glamaross:  www.glamaross.wordpress.com

Sharie Ross found me by chance over the worldwide webs.  I just like her.  She combines glamour with reality and humanity.  She reminds me of the fashion industry I recently worked in, and that motherhood and glamour are not independent of each other.  She is also a cancer survivor, and therefore, in the club.

Thank you to these, and other bloggers whom I have yet to discover.  I’m simply a newborn to this world, but feel excited, connected and supported by it already.  As the award states, you are all “keeping the blogosphere a beautiful place”.

Gratefully,

T. Marie

Normal is underrated

Normal.  It’s a word I’ve never really identified with.  Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or tango with Average, and can hardly utter the word… Ugh… Mediocre.  Routine? – the bane of my existence, and solid was a word I’d like to hear only in reference to my backside.  I always pictured myself living a more glamorous existence, chasing the tail of life, and filling it up with adventure.  I’ve discovered, however, that normal is relative, and certainly not bad.  In fact, I would even say I now crave normal.

This past week was surprisingly just that, with a daughter who was functioning as a wonderfully average five-year old.  Lulu is off of chemotherapy for almost two weeks, and our regular-ish little girl has reemerged.  What most people find to be ordinary, we now find extraordinary.  Her fighter blood counts were so high we were able to do crazy things like go to the grocery store!  We got ice cream one day, and went to a park – WITH other children!  We sat at the dinner table together and shared a meal where Lulu actually ATE!  It was only yogurt and one bite of chicken, but we could have been dining at The Four Seasons, it felt so good.  I had a business meeting that I’m not sure how it went, but who cares!  It was a normal thing to do, something I haven’t done in 6 months.  I met a good friend who is going through a hard time and I was able to listen to someone else’s problems. Wonderful! My dad is in town and we actually went out on not one, but two dates!  I mean, come on, this is pure gluttony.

The icing on the cake was a visit to Lulu’s K4 class.  She had only attended for 2 months before her diagnosis, but her school has been surrounding us with love ever since.  When we entered the classroom, a hush fell over the room.  The kids were lovingly and cautiously instructed not to touch her due to exposing her to germs.  We hadn’t been able to tell the teachers of her improved status for this week.  Lulu was beyond excited, bouncing up and down, overwhelmed into smiling silence and eyes so happy they squeezed almost shut.  Gingerly, the little ones approached.  Jimmy, my dad and I watched from a distance, letting go of any control over the situation.  One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”.  Wow, thank you God.  The kids were curious, but completely respectful.  I wanted to grab each one of them and squeeze their little cheeks off, then send a letter to their parents thanking them for raising such gems.  Her principle read a story to her class as Jimmy and I held hands, being sure to keep the other hand free to wipe the tears that were escaping rapidly.

Yes, Normal is relative. I remember when Lulu had an undiagnosed ruptured appendix on top of her leukemia, which caused her excruciating pain and multiple surgeries.  There were times when we thought to ourselves: can’t she just have normal shitty cancer?   Bo, a boy we met in the hospital during this time, is one of the sweetest, most kind-hearted boys I’ve ever met.  He was recently given his walking papers; remission.   He rang the bell at clinic, meaning his fight is over, he’s won, and his new normal can finally begin.  We felt lucky to be there that day.  He had adopted Lulu when she was at her worst.  Bo saw the little fighter in her, and just took to her, even when she was too sick to even know he was there.  He’s been her big brother from down the hall, making her little presents and always keeping her in his prayers.  Bo just celebrated his 13th birthday yesterday, and his present?  He found out his leukemia is back.  Please pray for him and his family. Normal has now moved into divine.

-and, Hey Normal, we know we only have you committed for two more days, but please stay for a while… and visit Children’s often.

A.L.L. of Us

Seeing is believing

I have two crazy stories to tell you this week.  Crazy good, with crazy-amazing moments …  The first story came out of the blue:  I have to take Lulu into Children’s for bloodwork weekly, and put numbing cream on the insides of both of her arms, to give them a better shot at finding her teeny tiny veins. It’s always traumatic, no matter how much cream and self-talk I teach her.  As we sat in the waiting room last week we were, as usual, surrounded by other children with their parents.  You can tell immediately which are which; the sick from the healthy. Sometimes it’s obvious in the children themselves, but you can always tell by their parents.  Some just cry outwardly, others simply glaze over, lost in their own pain, overwhelm or denial.  The healthy-child parents give these sad, pitiful looks to the rest of us, or avoid eye contact completely.

A robust little girl came over and started speaking really obnoxiously to Lulu.  She kept asking her about her feeding tube, why her hair was gone, poking at her, your basic nightmare.  She wouldn’t give up, and her mom was M.I.A.  She kept trying to touch Lu’s feeding tube, and at one point, she tried to grab it.  Lu was so calm about all of this, but I had a secret desire to take this small child and do more than talk to her!  Down Mama Lion.  Of course, I didn’t act on this fleeting thought, her mom returned and we had a peaceful few moments before going in for the poke.

I started reading a friend’s Caring Bridge, filled with sadness for her, and so much empathy.  I didn’t have time to finish reading it before our names were called, and I brought that energy silently into the lab room.  Lulu started sniffling immediately upon entering, and I sat her in my lap as the nurse came over to do the deed.  The techs there are usually very disconnected,  getting the job done, ignoring all the pain/fear/screaming/hysteria they deal with from these little tykes.  How else could they get through the day?  But our nurse was different, completely present.  As Lulu was obviously terrified, yet trying her very best to be brave, the nurse seemed moved.  She kept saying, “I just feel awful, I just don’t want to do this to her.  I don’t know what it is, but I just don’t want to do this.  I’ve never felt this badly before”.  I could tell she was sincere.  It was as if she could tell how much worse Lulu’s been through, how much worse she has yet to endure, and how this little poke was just one too many insults to her little body.  The blood was drawn, the kleenex came out and as I wiped the rivers of tears and snot from Lu’s face I looked up to see the nurse who also needed a tissue.  We exchanged a look that reached beyond the moment, when you really see someone.  She took Lu by the hands and apologized to her profusely, looking her straight in the eyes.  She apologized over and over again in a heart-wrenchingly touching and surprising way.   As she looked up at me, eyes still brimming with tears, she said she’s been doing this for 24 years and never wants to do it again.  She’s never been so upset, and just doesn’t ever want to poke another child again.  Ever.  I thanked her for not being numb to her job, to us.  I haven’t seen her there since.

The other story came just as unexpectedly.  As you know, Lu and I have been largely sequestered for months, due to low blood counts and susceptibility.  She had been asking me for weeks to go to Alterra, our favorite coffee shop, so she could get hot chocolate.  It seemed like such a wonderfully normal thing to do.  Finally, I just said “let’s do it!”. I actually showered and put a touch of makeup on, threw on some jeans with my favorite jacket and off we went.  She was bubbling with excitement as we stood in line.  The place was packed and I immediately started doubting my decision.  There was no turning back now, though.  We got our goodies and were forced to sit at the, oh no, COMMUNITY table!  Ugh.  Germs everywhere! Ok, let’s just make this snappy and get outta here.

But Lu was actually eating something, her favorite poppyseed bread, a sip of hot chocolate.  Ok, we can stay a couple minutes.  The guy sitting next to her says hello, and Lulu is having a ball playing as I plan an escape-route in my head.  There’s something about this guy next to her, he keeps chiming in on our conversation, wanting to engage somehow.  This is already atypical for us, as we more often encounter the opposite reaction from strangers.  He looks like the usual eastsider:  young, plaid shirt and jeans, but there’s something more there …  Lu must have sensed it too, and after chewing on the broken-off piece of bread for a while, she turns around to the young man and says “do you want some?”  She reaches out, offering this obviously goobed-on-by-sick-girl crumb and the guy takes it, thanking her, and EATS IT!!!  He gave us a beautiful gift in this small but mighty gesture.  My eyes connected with his and there was a strong energetic moment of what I’ll again call “seeing” past our physical selves.  We exchanged first names, and although I wished we could talk more, I have to get Lulu out of there.

The encounter really stuck with me.  I couldn’t shake it.  I just had this strong intuition about it.  I decided on a whim to google him.  His first name was Toussaint and I knew where he was from, how hard could it be?  It proved to be incredibly easy, as if fate had stepped in once again.  I found him within a few minutes.  He had a band, and a blog.  I stopped there.  I knew he would write about us, about Lulu.  I don’t know how, but I just knew.   I started checking the blog every few days until … There it was.  The entry was called “Coffee and Chemo”. Here is the link to the full story: http://www.toussaintmorrison.blogspot.com/2012/04/coffee-chemo.html . You’ll chuckle at his misinterpretation of me (“Jesse”), but I can understand it from his point of view.  He was, however, spot on in his impression of Lulu.  I ended up emailing him, explaining my preoccupation, thanking him, and introducing my family to him and letting him know that Lulu was doing well.  It turns out that his mother works in oncology and had been battling some health issues of her own.  He was very generous in his email, and I think we will forge some kind of friendship from this.  He also writes beautifully, and I’d like to invite you to follow his blog: http://toussaintmorrison.blogspot.com/

I still can’t get over it.  How powerful a moment can be, a small gesture, a little empathy.  How connected we all are, how powerful it is to really SEE someone, and be seen.  Isn’t that what all of us really want and need in this life?

Please reply to this and share your thoughts, or a time when you’ve felt seen.

T. Marie and a.l.l of us

“Rise”

I am with Lulu at Children’s this week for more treatment. She’s been the life of the party here, and hosted her own rainbow fiesta at rounds this a.m. One of our favorite docs brought supplies for her to decorate her room in a rainbow theme, and she made each doctor a rainbow drawing. She also gave away bead necklaces and leis. It was so cute and, although the toughest round is still ahead, it reminded me how very far we’ve come in 6 months.

Hubby Jimmy’s gone for 3 days this time, so he will get back tomorrow when we hope to be released. I have friends stopping by with dinner each night we are in the hospital, which helps tremendously in passing the time. If everything continues to go well for Lulu, we are planning a little family camping getaway this weekend. Cabin camping, no roughing it for us right now!

Max has become an adopted family member in some of our friends’ homes. We are eternally grateful for their generosity. He’s still very quiet about what’s happening with his sister, and I sometimes worry that he’s stuffing it all. – but he surprised and touched me last week when he told me there was a song that always reminded him of Lulu. He quoted some of the lyrics which proved just how deeply he understands. I bought and played the song on the spot. It is called “Rise” :

I used to be afraid of giving up
The road was just too tough
Out here on my own
My path was so alone

But now I see clearly
Everything within me
Is reaching out to the sky
I can see the world with open eyes

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

That’s what left your head up to the sky
And find yourself asking why?
Never see them out at night
With the hardships of life

But faith is where my heart is
Let energy replace my doubts
Won’t my trials get the best of me
I’m marching forward towards my destiny

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

You can try to hurt me, doubt me and desert me
I feel the will of kings, with my mind I’ll build the sea
And you know a tree will grow and take me in
To safety’s arms, I will descend

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

Yeah, I was tearing up too. Jimmy listened with us, and it was one of those moments when our bodies were pulled powerfully to the earth, and we were completely grounded and accepting.

I’m feeling, dare I say it … Hopeful? Please knock on wood as you read this! I think hope is the difference between thriving and existing. In any circumstance.

Love,
a.l.l of us

Tootsies and Trips

This morning began with foot in mouth. I’m not speaking figuratively; said something stupid, embarrassed myself or someone else … I’m talking 5 tiny pink painted toenails inserted ever-so-gently inside Mommy’s drooling, agape craw. No, there was no adorable little princess sock protecting me, no pink tights smelling of fabric softener. Just skin on skin contact featuring upside-down duckling-headed five-year-old and finally sleeping mama. Blech! Ptu-Ptu!!! That’s it. We’ve gotta get this girl back into her own bed! I must say, it was the best night’s sleep I’ve had in a long time, much needed after the events of this week and I finally feel motivated to do something today. Perhaps it will be getting Lulu’s little-girl bed out of the attic again, since she can’t maneuver her big-girl bed with her feeding tube. Or maybe I’ll have Jimmy do that while I go to the gym?.

Yes, hubby’s back after another trip. He was only gone 3 days this time, but of course, everything seems to happen when he’s away. The night before last, I dragged myself up the stairs at 11:30 after taking a benadryl, hoping for some deep Z’s. I crawled into bed, next to, HEY, there are TWO kids in my bed! Oh well, there’s room without Jimmy in the king-size (yes, I know it’s an issue and we need to work on this. Don’t call Dr. Phil). I pulled the warm covers up. Really warm covers. Too warm. Shit, Lulu’s got a fever. Shit shit shit! It’s over 101 which means I have to take her in to E.R. Panic. Can’t leave Max here alone, or can I? He’s 9. He’ll sleep. What if he doesn’t? What if he wakes up and starts freaking out. Don’t want to take him to E.R. at midnight and mess up his whole school day tomorrow, let alone have him go through the trauma of being there with screaming Lulu. Who can I call this late? No answer from Jimmy. Call BF in Minneapolis. Ok, I’m not thinking clearly, but she has 2 kids who are older than mine and will know what to do. Sure enough, she says leave him a note, he’s ok to stay, but might not remember talking to me and call a neighbor. I didn’t want to do that to my neighbor, but that was the permission I needed to make the call. Ring. She was so gracious, came right over and slept on the couch.

Lulu and I got into the car and she asked if she’d have to get poked. Of course she would, and without numbing cream, her port would have to be painfully accessed. “I’m not sure baby. I’ll ask when we get there”. She’s still freaking. As I arrive carrying her through the doors on the way to her room, I hear “T, is that you? You look beautiful!”. This is the weirdest thing I can ever imagine hearing right now. Me, in the hospital, stressed-out bed-headed in sweats juxtaposed with this statement. I turn to see a long lost dear friend from high school whom I’ve been trying to find for years. “Laura?” Wow, how nuts is that!?! It turns out she had taken care of Lulu the last time Jimmy brought her to E.R. and that they had clicked instantly. He had spoken to me of the great nurse they’d had that night as well. I long to speak with her and catch up, but between the docs asking questions (yes, she has A.L.L. em, yes she’s on some medications…), Lulu’s screaming and me fighting the effects of the benadryl, all is lost. She leaves me her info and we promise to get together soon. Lulu gets her blood drawn, is poked and prodded, given antibiotics and after 4 hours we are released. She likely has a cold.

Aaah, just another day in Cancerland.

A.L.L. Of Us