Full Circle

Image

(pic above, car ride to the Hospital for Lulu’s surgery)

Full Circle

http://chw.wistia.com/medias/1ebjs89ldn (Bell Ringing Full version- Professional Video from Children’s Hospital)

Today was a big day:  Lulu went back to school.  It’s a strange feeling and it’s still sinking in.  I feel on the verge of tears.  I’d hoped to feel elated and bouncing off the walls, but I mostly feel … gosh, I can’t even find the words to describe it.  I think it will take a while to process the 2.5 years living in Crazy Cancerland to moving back into a new normal.

Lulu’s surgery went well, but was more complicated than predicted.  The surgeon called us into THE ROOM” that you never want to go into, which brought back a flood of emotion and memories of her multiple shredded appendix-on-heavy-chemo surgeries.  Our zen-master 6-foot tall & beautiful female doc calmly informed us that the port removal was easy, but they had found 2 instead of one hernia, both of which were larger than anticipated and interlaced with omentum (fat the leaks through hernias).  Lulu’s recovery proved that point true, as she struggled to move at all the first two days and didn’t stand or walk until the 3rd day.  But our Little Tough bounced back quickly after that, reminding us of the incredible healing powers children have.

While at the hospital, I felt so lucky to have seen two nurses that have been a special part of our journey.  First Leann — who was there in the darkest times when we were in ICU — a girl I know I would have over for dinner, walks and java on the front porch if we lived closer to each other.  She called me while we were in the waiting room, bubbling with excitement to have us on her docket in the recovery room.  I showed her the long version of the bell-ringing video (Link included at the top of this entry), and then Becki, another fave nurse, bounded over to give us hugs.  I replayed the video for her, Lulu still asleep between us, and she couldn’t stop the tears from continuing to roll down her instantly wet cheeks.  It made me count our blessings once more, that we’ve had such amazing care at Children’s Hospital, that so many nurses and doctors care so much for each of their patients, and have really become a part of our lives.  That was clear form the turnout at the bell-ringing too, seeing so many caregivers take the time to attend, watching them cast their eyes down as they shed tears of relief and joy for their special patient as the bell rang out.

We realized how powerful this moment must be for them, as well as for us.  As many times as we’ve been to that hospital and clinic, I only remember ONE other bell-ringing ceremony.  That’s a shame.  I’m sure the doctors and nurses don’t experience this powerful full-circle moment enough either, especially those that work on the H.O.T. unit, ICU, or other wings of the hospital.  I’m so grateful to have this special video to share with them, and others, to signify this success story and the journey and the hope that it inspires.

As I write this, I think the word that best describes how I’m feeling right now is humbled.  — So grateful to be one of the lucky ones, hoping and praying it holds, and never forgetting all the other children we’ve met along the way that we will continue to fight for.  Thank you all for being a part of this journey, holding us up when we’ve needed it, walking beside us when we’ve needed a hand to hold, catching us when we’ve fallen.  We’ve learned so much about love, the power of a community and how much difference ONE person … or one little girl … can make.

Thank you.

a.l.l. of us

Nearing the Finish Line

Image

Hello Friends,

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

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

Image

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

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

Image

with love,

a.l.l. of us

Make-A-Wish Hawaii – Chasing Rainbows

IMG_2844

I think most of us play it too safe. There’s so much fear around standing out, being different or not being cool (gasp!). We live in a world mostly void of color. This is something I’ve been giving more thought to recently as I had been letting my own enthusiasm bubble over. For so long, I’ve been feeling scared, sad, depressed, worried about Lulu and her health. As I prepared for our trip to Hawaii I described it to the Make-a-Wish director as packing madly and anticipating wildly. She responded with a huge grin, writing how much she loved that description and image. – and it was a whirlwind, as packing can be with kids. You have to throw in everything but the kitchen sink while squeezing in as much work as possible before taking off!

As we scuttled through the airport, I noticed people lighting up and grinning at us, some laughing out loud as they passed by. One man even took a picture of us. You see … Lulu isn’t a gray/beige sorta gal. She shows up to the airport with a pink polka-dot suitcase, wearing bedazzled tennis shoes, purple dress and rainbow lei! She rides on the back of her spotted case, while Jimmy pulls her like a caddy with a built-in passenger. She is a stunningly bright contrast to the desaturated surroundings … her energy spilling out in giggled staccato. She is contagious, and can instantly change the disposition of those she encounters.

A limo picked us up at 4 a.m. to begin the long trek (I know, so fancy!). The flight was long, but not as painful as we had anticipated. Two flights, 11 hours in the air, and 14 hours total travel time. But what greeted us at the airport was simply astonishing: There it was … a rainbow ON TOP of the airport! I’ve never seen one so close to the ground before, but there it was for Lulu, to welcome her to Hawaii and fill her spirit. I wish I had videotaped her reaction, but you can imagine the overabundant delight, joy-babble and jumping that took place in seat D14!

We got to our rental car and headed off to the hotel, seeing no less than 7 more rainbows before we arrived!!! It was unbelievable. Her wish had come true already. Jimmy and I have been to Hawaii a few times before, and never seen anything like this. The rainbows were so close to the ground, so close to us, it literally looked like we could reach out the car window and touch them! Lulu was busting at this point, her shrill giggles reaching epic proportions as her bounding grew into full-on bronco bucks.

Image

The hotel was right in the heart of Waikiki, with 4 full-sized beds in one room (yeah, not so sexy). It had a wonderful view of both the ocean and the volcano, much to Max’s delight since he has a ‘thing’ for volcanoes. We crashed pretty hard that night and got up bright and early the next morning to start exploring. There was so much crammed into our stay that I’ll just hit some of the extra-special highlights for you.

Image 13

Team Make-A-Wish planned 3 excursions for us and the first was a glass-bottom boat tour. It was a great novelty for the kids. But the most special part of it was meeting the other family who was with us. We were sharing some friendly banter when I looked down and saw 3 familiar buttons on their kids’ shirts. I blurted out “Are you on a trip through Make-A-Wish too?” They were, and their 9-year-old boy Hunter had also been diagnosed with a.l.l. What are the chances … seriously?!? They were such a lovely family, and Hunter reminded me so much of Max in the way he spoke and carried himself. I know they would be instant friends. I got a few moments alone with his mom back at the hotel and soon into the conversation, her eyes welled up with tears. I wrapped her up in a warm hug, sharing something only two moms with kids with cancer can know. Those of you who are parents know you enter a sort-of ‘parent club’ after you have children, having an innate knowing about parenting’s trials and tribulations that you share even with strangers. When you are in the ‘cancer club’ (a club you never hope to belong to) that understanding is magnified a thousand fold. To passers-by, we looked like two friends who hadn’t seen each other in a while, but beneath our chic sunglasses we shared pain and sorrow at a deep level. Our paths didn’t cross as much as we would have hoped, but I know we will keep in touch with that special family.

Image

Image

We spent most of our time at beaches outside of the hub-bub, driving up the coast to the North Shore where things were more peaceful. We swam with the dolphins at The Cove, and Lulu had a special job feeding and tickling the massive, slippery-soft and gentle creature. Jimmy and I loved it just as much as the kids did. What a special animal!

Image

Image

The highlight of the whole trip, however, was the Luau. I wouldn’t have expected that, but things just lined up for a special evening. The bus ride out was waylaid by traffic, which ended up being a blessing in disguise since fussy Lulu needed a nap baaaadly. She peacefully slept in my lap the whole way, accompanied by the beautiful sunlight that streamed through the windows of the humming bus.

IMG_2907 Image 3 - Version 2

When we arrived, we were greeted by dancers and given flower leis and tropical punch. The temperature was perfect as we headed over to the flower-making table, where Lulu donned a princess headband filled with yellow flowers, made only for the most special females.

Image

There were art activities and canoe rides and drinks. Although, I almost didn’t get my drink when I arrived without I.D. I guess that tropical air really is magical because I had to do quite a song and dance show to get mine, including showing my 10-year-old son to the bartender to convince her I was legal! That’s a compliment at this point, and it was really nice to feel a lil fresh and pretty again, since I caretaking generally does not include this notion …

There was a loud clanging of a bell, signaling us to gather together to watch some hula dancing and check out the suckling pig, pulled out of the ground (EEEEW!!!) for us to observe and give thanks to before chowing down on it. There was a wonderful show with singing and dancing from talented and scantily clothed beautiful people. Lulu insisted she wanted to go up to learn the hula on stage, so when the time came, she ran up, but dragged me with her after a sudden attack of shyness. She was very serious and focused front and center, the breeze in her whispy blonde hair echoing the swaying of her hips. Max and Jimmy got a huge kick out of seeing their girls up there, shaking what our mama’s gave us!

Image

We left the next day, having seen about 20 rainbows in all! Jimmy, being the great dad that he is, sought out a special prism so that Lulu could actually catch a rainbow to bring back with her! She reached her arms out to the rainbow with open belief as she captured its bright colors. She placed it in a jar, eyes wild with glee.

The trip was really magical for all of us, and more needed than we realized. Jimmy and I have been feeling like we’ve been walking against the wind for a long time, trying to keep focused and determined, forgetting how exhausting this trek has been, and continues to be. Hawaii gave us time to sit in some silence … time to reflect. There were no deadlines, no bills, no housework, and no hospital visits. Our bodies truly let down, probably for the first time since November 7, 2011.

Image

We’re still having a very difficult time transitioning back into reality, craving more sun, more fun, but not able to take it. Needing precious time together as a couple … things that are robbed of the whole family by cancer. But I’m happy to be writing about this trip now, as a wonderful reminder of those feelings. I hope we can all keep adding a little more color to our lives, chasing rainbows with Lulu wherever we may be, and under whatever circumstance.

Thank you Make-A-Wish, for making our special little girl’s dream come true, and giving us a vacation we never would have taken now. You are an amazing organization, and we are very blessed to have experienced your generosity!

Love,

a.l.l. of us

Image

IMG_2860

Standing in the sun

Image
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

IMG_0137 - Version 2 IMG_0123 IMG_0125 IMG_0122 IMG_0124 - Version 2 IMG_0121 IMG_0128 - Version 2 IMG_0140 - Version 2 IMG_0138 - Version 2 IMG_0132 - Version 2 IMG_0130

Jazz Hands

Image

(pic from a.m. rehearsal)

“Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand – and melting like a snowflake. Let us use it before it is too late.” – Marie Beynon Ray

Life has been opening up again. Personally, I feel like a canary that’s been let out of her cage. Hope is now blossoming into full-on optimism. Although we have 13 more months of treatment, I think we are all starting to live in a new way; unapologetically and unabashedly … squeezing the joy out of every plausible moment. This is what can happen when you almost lose life, and witness loss. There is a renewed appreciation for all things good, whether big or small.

We had an incredible experience last week, when the four of us appeared as guest speakers at a convention in Palm Springs. We added a few days to the beginning of the trip to spend much needed time together as a family. The warmth and sunshine were like happy-juice to us! The resort was everything our lives have not been: perfect, lush, accessible, relaxing, and comfortable. – A soft place to land after a hard day, or in this case, a hard year. We hung out together, swam, walked, played, relaxed, and had some actual downtime. Jimmy and I even sneaked in some quality time (wink, wink!).
Image
After a couple of days of this, it was time to think about why we were brought there: Jazz Pharmaceuticals. This is the company that had the alternative drug (Erwinase) for Lulu after she had a horrifying allergic reaction to PEG-Asparagenase (see excerpt from Caring Bridge below). They also took a pic of Lulu for their website, which we found out has served as a huge inspiration to their company in its entirety. We met the MC for the event, so full of kinetic energy and persona I thought he was gonna throw a jazz-hand out at any given moment! It was like looking directly into the sun. He was a Broadway actor and we both swore we had met before, perhaps from my performing days. He was at once comforting and startling, reminding us that we had a job to do there.

The four of us were featured at two sessions, the general session with a few hundred people, and a more intimate breakout session with about 50-60 people from the Oncology department. We had a rehearsal the day before, as well as one in the morning with the CEO Bruce, who would interview us on stage.IMG_2539 - Version 2

(pic from tech rehearsal)

The theme was ‘Bringing Value to Life’, and our story would kick start the multi-day event, to set the tone for the rest of the conference. What an honor. I won’t kid you, it was a bit nerve-wracking to speak on stage to that many people, but any nerves I felt in anticipation were totally gone by the time we went on. Jimmy and Max were cool as cucumbers too. Lulu got quite shy right before, and instead of her solo spot, we ended up all going on together. We entered the stage to a standing ovation, and surprised and delighted faces since most of the attendees hadn’t been told she/we would be there. Lulu was asked a few questions about her upcoming Make-a-Wish trip, and what rainbows meant to her, and was whisked off stage so we could get into the tougher subjects.

As those of you who have been reading this blog for a while know, I have a bittersweet relationship with medicine. Our whole family does. Pharmaceuticals are not on the short-list of aspirational adventures, but this company is truly different. The people we’ve met and come to know through Jazz have been consistently sincere, kind and enthusiastic about their work, a rare combination in any field, let-alone pharmacy! We’ve been in contact with multiple employees over these past few months, and developed a great report and, in some cases, a lasting friendship (you know who you are!).

After meeting CEO Bruce Cozadd, I understood why such a unique culture had been created. He shared with us a very personal story about his family, and I feel he has turned a tragedy into a journey, and that journey into a mission through his company. You can feel it in the way his employees speak of him: “Oh, just wait until you meet him, you’ll love him!” “He is so easy to be around, so compassionate”, “He’s such a great guy!” It went on and on and my B.S. detector didn’t go off once! He also admitted things aren’t perfect there (love that honesty) and it was clear he was genuinely concerned about it. After our interview with him, I could see how wonderfully down-to-earth he was, brilliant but humble, and deeply grounded. I also understood how he had developed such an amazing team; like attracts like.

Following the general session, we had a Q&A with the Oncology team. Many of whom have been touched by cancer personally and/or have battled it themselves. The questions were so pertinent, and insightful. Matt, a new friend with a permanent place in our hearts, surprised Jimmy by having the whole team wear Triumph motorcycle t-shirts. Jimmy has been wearing his in honor of Lulu, and Matt thoughtfully remembered this! That initiated the mood as the four of us were ushered on stage. Max continued to steal the show with his old-soul wisdom combined with his cute cheeks, and we all held it together fairly well until I started talking about what Lulu has learned though this. I talked about her generosity, the lemonade stands, and then went into her deepened empathy. She had recently spoken to me about Bo, our friend who lost his battle with cancer and deeply touched our lives. I choked and stopped. After what seemed like an eternity, I continued in this pathetic crying voice to share what Lulu told me last week: “Mama, when people die, they don’t go away forever, they just move into your head” She pointed to her heart on stage and I said “And your heart, right Lulu?” She nodded calmly; relieved I had understood her message. I’m convinced she is connected to the afterlife in a very different way than most of us are. Matt handed me a tissue, and we finished up with Jimmy telling the story of his first father-daughter dance that had happened right there the night before (and that Lulu had asked him!) Well, there wasn’t a dry eye in the house after those two stories.

Image 4

The attendees flocked around us after, regaling us with stories of their own, sharing lives they had lost and personal battles fought. I wished we could have talked to each one of them for the rest of the night. I felt so drawn to this work we were doing, so invigorated and energized from it. I long to do more.

So … life is really, really good right now for all of us, relatively speaking. Right now is all that matters. Lulu is sick infrequently, the OCD diminishing through our guidance, but more so through her own sheer will. I’m almost giddy with excitement and relishing every moment. Don’t be surprised if I shoot a jazz hand out your way the next time I see you …

Love,

a.l.l. of us

Image

Caring Bridge entry from February 11, 2012

Hello,

I write to you today excitedly, to share some great news: Lulu actually ATE yesterday!!! I’m not talking a mouse-like bite out of a cracker, or a single grape. She ate for REAL. The docs gave her an appetite stimulant last week, and it seems to be working. Yesterday, she woke up and told me she wanted pancakes! Of course, she wanted them from Beans and Barley, so I bundled up, shoveled off my car and headed out in the snowstorm. Baby wants pancakes, Baby gets pancakes! Apparently, I missed the breakfast menu by 15 minutes. Argh. I actually pulled out the sympathy card and explained the situation, that my daughter has cancer, hadn’t eaten in over 9 weeks, etc, but to no avail. I think the guy almost thought I was making it up! Dude, your pancakes are good, but not THAT good. So, I headed over to The Original Pancake House to get her second favorites. Success. She was so excited when I got back, and she ate almost 1/2 of one! Then she wanted banana yogurt, some water, her favorite rice puffs, then pretzels. I just could not believe my eyes! She kept it all down and asked for more at dinner. Some baby sweet potatoes and a chocolate cupcake brought over from a good friend. I didn’t care how much sugar, fat, whatever was in anything she ate, she was eating! More this a.m., with yogurt and a pancake. Granted, there were some issues in the middle of the night, but expected with the new stuff coming at her long-empty tummy. Please keep those prayers coming, if this keeps up, we an get her off IV and maybe even tube feeds in the future. :-)!

More good news; her temperament has been almost normal for the last few days. She has 6 days off chemo, and what a difference that makes. I’ve come to understand the multi-faceted and diverse effects drugs can have on children. Each child reacts uniquely, and chemical imbalances are nothing to sneeze at … When she’s in Sybill-mode, there is no amount of good parenting that will change the outcome of her behavior. I can no more control her moods than I can stop a truck from barreling down the highway with my outstretched hands. Again, it gives me empathy for parents with kids with ADHD, ADD, all the levels of autism that can’t be seen with the naked eye, etc. I won’t be so quick to judge that bratty child at the checkout counter, or their parents. Who knows what they’re dealing with, what medications they might be on, or what is going on in their home.

Speaking of medications, I bet you’re wondering about the tornado. Well, we couldn’t let a whole week go by without a little drama, could we! I jest, but it was actually terrifying. On Tuesdays clinic visit, Lulu was scheduled to get a couple of chemo drugs that we don’t give at home. One of which, can cause allergic reactions, so the nurse stays in the room with you. Lulu has gotten this drug a couple times before, so the nurse and I were chatting it up while the med started. Within seconds, things went very, very wrong. Lu started screaming that her tummy was burning and that she felt really sick and awful. A couple seconds later, her entire face turned dark red and she started vomiting profusely and screaming ” HELP ME! PLEEEAAASSE HELP ME!!!”. Her face swelled up, including her eyes, lips, then tongue and throat. Omg. I’m freaking inside but staying calm for her. 4 nurses and 2 doctors are in our room with the kind of calm that’s full of electricity, extreme focus and intention. Lulu glossed over and stopped responding. She went sheet-white. She got IV benadryl, epi-shot, steroids and 2 other drugs. Finally, she became stable and fell asleep. I sat back in my chair and the tears started rolling down my cheeks like a waterfall. Dammit! Can’t she just have a normal week of totally shittty cancer? She had only gotten .9 of 50 units of this med. Thank goodness it wasn’t more. Even after the shot, meds, she started swelling again. Her eyes were super puffy and her lips were full enough to qualify her for an audition for The Real Housewives of Milwaukee. So, more meds were given, and we were checked into the hospital for the night. Obviously, she can’t ever get this medicine again, so now we get the added bonus of going in 6 times instead of one. Thank goodness at least there is an alternative drug. It’s called Erwinase. She will get two shots simultaneously in each leg Mon, Wed, Fri for two weeks. The risks are less with the smaller, more frequent doses, but it will suck seeing her held down, screaming while she gets these “pokes”. Poor baby girl :-(.

Jimmy was on the plane headed to LA during all this fun, and had emailed me with a strong prediction that something was very wrong. At the time, we were having a great day, and I told him all was well. Wow. I hated to tell him how right he was. Worried sick, he carried on and did a fantastic job on his production. He amazes me. Maybe its best he missed it, as I hope to never see anything like that again, and have had nightmares the past few nights over it. Kids make you feel so vulnerable … your love for them is so deep and strong, the mere thought of anything going wrong can make you catch your breath.

A.L.L. ALL of us. Acute Lymphoblastic Leukemia. When one person in the family gets sick, the whole family gets sick, just in different ways. All are effected, even Lulu’s classmates, friends, relatives, ALL feel it’s effects, its burdens, its lessons, its inspiration. There are so many ways Lulu and A.L.L. are teaching us. I’m being more open and honest about this than I ever thought I’d be, feeling strongly drawn to write about it, and share with ALL, in hopes of something good coming out of the bad. I’m soaking up all the lessons for myself, including how to ask for help, taking care of myself, developing deeper empathy, helping others more, remembering true priorities, the list goes on and on. Now don’t go expecting me to be some perfect version of myself, no way Jose Eber! -but I know I will be a better version, and will realize more quickly when I mess up:-).

When I see the letters A.L.L. Now, I’m reframing them to stand for:

A

Luscious

Life

Good will come of this.

Things are getting better. We have 4.5 more months of hard-core treatment then 2 years of maintenance treatment, which is likely easier. I was recently introduced to another parent whose prognosis isn’t as good. His beautiful 10-year-old boy has brain cancer, and after almost a year-long battle, only has 2-4 months to live. I’d like to ask you to pray and send love to Josh Garcia and his family, as there is nothing harder on this earth than this. Also, please pray for Madi Drayna, who is recovering from a serious car accident. Her mother works at Lucia’s school.

I hope for more good reports on our end, and no more tornadoes. Just blue skies and lots and lots of rainbows!

What if … ?

sA9xZz - Version 2

Hello Friends,

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

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

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

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

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

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

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

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

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

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

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

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

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

Highlights (mostly!)

IMG_2174

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.

IMG_2133

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.

Image

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.

IMG_2207
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.

IMG_2318

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 …

A Little Nitty Gritty

Image

Hello Friends,

I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family.

Although she’s still doing well overall, we’ve had a bit of a detour this last couple of weeks.  Her ANC (basically, her immunity measured in blood cells) was rising to slightly beyond protocol.  The docs like to keep her counts between 500-1500 during Maintenance Therapy, to ensure that the leukemia doesn’t have a chance to come back.  Lu’s ANC was climbing into the 1600, then 1700’s.  To counteract this, they upped her chemo dose by 25%.  Unfortunately, this made her nauseous, and she started vomiting again Ugh, just pulling out the ol’ puke buckets made us feel a bit sick too. We added some more anti-nausea medicine to her regimine, which mostly did the trick.

But then we discovered that her ANC had been knocked down WAY too far.  The week of her 6th birthday, she had her usual in-patient spinal tap and IV chemo where they also check her bloodwork.  Her ANC was down to the low 100’s.  This basically meant she’s on lockdown until her counts rise.  She had been looking forward to, and talking about, her birthday party at Chuck E. Cheese for, oh, the last 6 months?  Some of the docs and nurses said we could probably go ahead with the party, weighing out the costs/benefits.  My gut told me not to, as disappointed as I knew she would be.  I couldn’t feel good about her having a fun party, but possibly ending up in the hospital the week after.

Bonnie and the nurses brought  a cake and presents to her in clinic, which at least felt like a bit of a celebration.  We also decided to make a quick trip to her school, after I had her teacher promise to flea-dip the kids in antibacterial gel.  We brought rainbow-colored cupcakes, and her class was beyond precious (see silly faces pic below)!  We couldn’t be luckier to have her teacher and school on our side.  They’ve been incredibly loving, patient and flexible with our ever-changing circumstance.

Lulu was more understanding than I ever would have guessed she’d be about missing her birthday party, but we were still so disappointed for her.  Her counts ended up not rising as expected, and the week after she was only in the low 200’s.  At least we knew we had made the right call to cancel her party.  This meant we’d also have to forgo Thanksgiving with friends.  But we made the best of it, instead, staying home and eating Jimmy’s delicious chicken with prosciutto over pasta.  YUM! We reminded ourselves of last year, when we spent every single holiday in the hospital, and counted our blessings to be together in our home this year.

Her OCD – like behavior continues to be an issue, and we’re doing our best with that with what we know and are learning.  It can be VERY trying sometimes and we try to keep our patience.

Max is continuing to excel in school and sports.  Luckily, he’s been staying healthy.  That is, until one Monday morning … Suffice it to say I was taken unawares when my son became suddenly ill on the way to school.  Well, he did tell me he didn’t feel well in the morning, but I pretty much told him to suck it up, eat some breakfast and get to school.  I regretted those words wholeheartedly a few minutes later.  After ALL the puke I’ve dealt with over the past year, you’d think I’d have emergency bins in the car.  I used to, and still bring them when Lulu has to travel, but my son is never sick!  He gets a bit carsick, but never actually GETS sick in the car, so when he told me he still felt icky in his tummy I continued to chalk it up to a little nausea.

Then, it began …  The best way I can describe it, is that he threw up like a boy.  It just came out without any focus or finesse.  Lulu gives me just the right amount of warning, and we’ve never missed the bucket.  Max just exploded all over.  It hit his chest first,  then all over his lap into the crook of his legs, which spilled between and under his butt and onto my back seat.  There was nowhere to pull over, so I told him to try to find something to throw up into.  Onto his shoes it went, and I started yelling “open the window, and puke out the window!!!”.  He faced the window, and full on puked into it, while it was still rolled up. Into the crack of the window and the door it went, dribbling onto the floor.  He finally started unrolling the window, but the damn back seats have the childproof windows that only roll down halfway, so more volcanic eruptions onto the side of the window.  I finally pulled over to a closed gas station, where I got him out and started dry heaving myself, as the smell of him wafted up and overwhelmed me.  I’m sure it was quite a site for the passers by.  And not a wet wipe or a kleenex to be found.

Luckily, it was just a 24 hour flu, but I now feel like I’ve been on an episode of Sienfeld, as I will NEVUH get the smell out of my car, and may have to sell it!

In the scheme of things, these are such small trials.  Jimmy and I are so grateful to continue on the work path, and working on finding some quality time together as well.  I’m heading back into doing more photo shoots as my consulting job ebbs for the time being.  Jimmy’s working from home for the holidays and I can’t wait to put up the Christmas tree this year, to circle round it together and celebrate all of our health and good fortune.  Even if there might be a puke bin hidden underneath the pine branches …

Love,

a.l.l. of us

Image

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

Carrot Juice or Chemo?

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

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

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

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

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

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

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

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

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

Love,

a.l.l. of us

Bo Johnson article: Teaching us How to Live

Image

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.

• • •

l.OxVlCRImdXNdtZuw
shadow
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.

CC_Team_Go_Bo
shadow
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.

• • •

photo
shadow
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.

Bo_Jack
shadow
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.

111411GoBoGo_26
shadow
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.

287163_4306551389690_11
shadow
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.

301221_100764486702367_
shadow
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.

229904_3962809596066_84
shadow
Bo Johnson with his mother Annika.

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

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

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

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

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

• • •

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

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

View images.

No news is GREAT news!

Image

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

Image,

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

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

Dun Dun Duuuuuhnnnn . . . Delayed intensification.

We just began the toughest round of chemo for Lulu yesterday.  There’s a reason for the name:  Delayed Intensification.  It’s just loaded with all the ingredients for an intense drama including 9 kinds of chemo, and, ooh our favorite thing:  steroids!!!  I don’t know how many of you have a spirited 5-year-old girl, or have met one, but ours walks the razor’s edge between charming and bratty on a daily basis.   She’s a creative force, so full of life it seems impossible that it could be contained in this 35 lb. package.  She also has the wit of a teenager; including the sarcasm.  Even the word Mom can be delivered with more varied intention and meanings than previously thought possible.  Depending when you meet her, she will sweep you off your feet and climb into your heart in the most charming, playful and engaging way, or drive you crazy with endless chattering and obnoxious demands for attention.  So … let’s put this on steroids!  Based on our last experience, I will be calling often, tag-teaming with Jimmy and Grandpa if he’s still here, telling lots of stories-that-will-be-funny-later, and planning my occasional escapes to gather myself enough to go back into battle.

That’s the easy part.  The 9 kinds of chemo are more challenging.  I’ve been running through a lot of emotions based around this leg of treatment.  I’m hopeful since it’s our last giant hurdle to cross before starting maintenance for 2 years, and it feels like there might actually be a light at the end of the tunnel.  The hold-your-breath scary part is there are no guarantees.  This feeling of unsure footing has been amplified by recent events.  We made a few friends on the H.O.T. (high risk) unit during our long stays at the hospital.  I was just thinking about how well everyone was doing, and how lucky we all are.  It starts to feel like you’re having coffee or beers with your friends, and forget you have children who are all literally fighting for their lives.  I told you about Bo, who had the rug pulled out from under him and his family when his leukemia came back.  He and his mom are at the hospital again, finding their strength and gearing up to fight once more.  We have another friend who is a mere couple of weeks ahead of Lulu.  She’s almost 4, and one of the cutest things I’ve ever met with huge blue eyes surrounded by thick wings of black lashes.  She and Lulu hit it off immediately.  After doing as well as our little one, she is suddenly in the fight of her life.  The drugs, not the disease, are tearing her tiny body up.  After starting delayed intensification, the toxic drugs broke down her intestinal wall, allowing bacteria to enter causing typhlitis, and her lungs have filled with fluid from an unknown origin.  She is on a ventilator in ICU, just had surgery and I can’t stop crying for her.  I’m so worried, and hope she finds every bit of little girl magic and chutzpah to pull through.  I find myself wanting to hate these drugs with every ounce of my being, but I can’t.  If they don’t kill her, they will save her (and my daughter’s) life.

I haven’t really asked the big WHY question too much during this time.  I am now.  I know both of these families have as many people loving and praying and thinking of them as we do.  I’m not overly religious, but I do believe in a God, a force and an energy that created everything.  I’ve heard, “this is God’s will” and I just don’t buy it.  I don’t think God would ever choose to take one child’s life, and save another.  It can’t be.  Can it?  I’m not losing faith, I’m just wondering.  Maybe God doesn’t really work on that level?  Maybe we were all just given free will and we’ve messed up this earth so much that we are creating all these diseases of the body, and mind.  Our food and environment polluted … Cancer; rampant, cure; toxic.

I’m feeling pissed off, confused, scared yet hopeful.  Maybe it’s been left in our hands with God to guide us, not fix it for us.  If so, we need to change it.  Quickly.  We need to change the way we eat, purchase, process, work, live.  We need to start wherever we can, in big and small ways.  We must be part of the positive change, and not the toxic buildup.  We need to stop filling our minds up with entertainment that thrives on hate, food that poisons us, work that kills our souls and our earth.   I certainly don’t have all the answers and solutions, but I hope this will start a conversation.  Maybe if we begin with ourselves, we can create some peace within that can be shared with all.

Please send prayers, good juju or whatever you’ve got to Bo, Kate, Lulu and everyone at Children’s, especially the HOT unit.

Thank you,

a.l.l. of us

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