As the World Turns

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I almost have to laugh … there conyinue to be so many highs and lows, our lives playing out like a soap opera; filled with glamour, drama, tragedy and triumph.

Shortly after my Make-A-Wish blog entry posted, I was contacted by the Foundation. Someone had shared it with the board of directors and President of Make-A-Wish. Lulu was made the featured wish child, and they used part of the entry and pictures on their site. I soon received another call asking if I would be comfortable speaking at a fundraiser at the yacht club (I told you, GLAMA!). Of course I lied and said yes, knowing I would be very UNcomfortable beforehand, but fine once I hit the stage. Jimmy and the kids have also gotten used to these events, and I suggested we all go up together.

Lulu was unexpectedly crabby that day, and I got a phone call from her teacher letting me know Lulu was really tired and a little warm. I picked her up immediately, so grateful to be working at a nearby c’office. I got her home, laid her on the couch and wondered what we would do about the speech that evening. She had been very excited about the event and I had been throwing her a few random questions throughout the week, in preparation for her part. She perked up and was determined to participate, grabbing her rainbow piñata to bring along … somehow grasping exactly what was expected from her.

Jimmy and I volleyed the highlights of the wish trip. The kids stole the show as usual, Max with his old-soul eloquence and charm, speaking with his hands in the most natural way. Lulu chimed in, sharing excitedly her dolphin encounter, and telling the crowd that she loved Hawaii so much that it felt like she went home. We received a warm standing ovation, and felt so grateful to be able to give back to such a wonderful organization.

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Lulu ended up with a fever that night, unfortunately over that magical 101 degree mark, meaning we had to go to the hospital. This would mark the beginning of more unexpected trips to Children’s, as Lulu battled the recurring flu, and multiple ear infections. The flu is much more serious and harder to treat with kids on chemo since their immune systems are compromised. She’s been on two rounds of strong antibiotics and two rounds of Tamiflu, but her fevers have continued to return.

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Of course, Max got the flu too and I was scheduled for two jobs in NYC, a few days apart. To make matters worse, Jimmy’s dad had an emergency. I’m going to give you a cringe alert here, so skip this paragraph if you’re squeamish. After a routine procedure, he pulled out his own catheter accidentally. YEEEOUCH!!! He went septic and was rushed to the hospital and placed in ICU. It was touch and go for a few days, and the doc said if Jimmy’s sister hadn’t gotten him in immediately, he would not have made it.

I felt helpless in NYC, and it was strange to be the one who was working while Jimmy was dealing with the crises. My dad had happened to be coming through town heading north from Florida, and helped out. I was grateful to be able to bring home some bacon, and it was easier than I would have thought to be distracted by work. Lulu had a reprieve while I was gone, making it more palatable to be away. I was also with one of my favorite crews, people that have become my friends over the years. Lulu had generously given me her favorite bunny to ‘keep me company’ and we all had a blast taking pictures with Purple Bunny.

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I got to see a friend in a Broadway show and was able to meet a couple of college buddies for a drink. One offered me free tickets to another show the next night, and I learned my college was having a reunion while I was there! I couldn’t believe my luck! That was, until … I got the flu. O. M. G. I got SO sick (cringe alert 2). I threw up about 10 times throughout the day, each time sneaking off to a (public, ugh) bathroom, and popping gum in my mouth to continue working. It was awful! My model could not have been sweeter about it. I was so grateful I had an assistant on set, and I would have her watch things as I would disappear to ‘take care of business’ throughout the day. There would be no reunion or show for me, no dinners or shopping, but I was still grateful to be there.

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The studio had a great view of Freedom Tower and on my last day there, the spire was placed atop the building. What an inspiring symbol of resilience, determination and strength. A perfect reminder that it’s not how many times you get knocked down, it’s how many times you get back up.

I flew back home as Jimmy’s dad ended up back in ICU with breathing problems. I spent Saturday night in the ER with Lulu, who had 104 degree fever (she has bounced back once again, and was back in school yesterday). Jimmy is frantically catching up with a huge edit, and in pre-pro for a major film he’s working on this summer. We have been asked to be the featured family in Make-A-Wish’s Annual campaign. The What If Book will be published soon, proceeds going to the Go Bo Foundation, and our Love for Lulu fund. Oh, and our house has been turned upside down as Jimmy turns our attic into a home office and we get the carpets cleaned!

So, it’s best to laugh at the craziness, and only occasionally break down. We are rolling with the punches, appreciating the highs and getting through the lows, seemingly stronger and prepared by last year, which was spent in an even more dramatic fashion.

And so you have it: These are the days of our lives …

Love,

a.l.l. of us

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Make-A-Wish Hawaii – Chasing Rainbows

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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.

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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.

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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.

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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!

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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.

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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.

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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!

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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.

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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

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Standing in the sun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

a.l.l. of us

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No news is GREAT news!

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Hello patient Friends!

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

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

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

-Wake up

-Get dressed

-Eat

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

-Go to the park

-Get ice cream

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

-Make art

-Watch a show

-Play with my brother

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

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

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

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

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

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

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

Indeed.

With love and gratitude,

a.l.l. of us

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