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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Jazz Hands

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(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!).
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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.

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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

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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 … ?

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Hello Friends,

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

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

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

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

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

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

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

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

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

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

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

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

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

Carrot Juice or Chemo?

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

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

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

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

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

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

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

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

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

Love,

a.l.l. of us

Lulu’s journey through pictures

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

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

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Hello Friends,

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

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

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

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

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

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

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

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

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

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

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

Thank you sincerely,

a.l.l. of us

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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