All posts tagged community

As the World Turns

I almost have to laugh as I think about the last month. There have been a lot of 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. Apparently, it had been read to 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.

I opened the speech, and 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.

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.

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.

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.

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

6 Comments

by T. Marie on May 23, 2013 • Permalink

Posted in Uncategorized

Tagged A.L.L., chemo, childhood cancer, community, Freedom Tower, Go Bo Foundation, inspiring, leukemia, Love 4 Lulu, make-a-wish, The What if Book

Posted by T. Marie on May 23, 2013

http://all-ofus.com/2013/05/23/as-the-world-turns/

Standing in the sun

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 6^th 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

1 Comment

by T. Marie on February 23, 2013 • Permalink

Posted in Uncategorized

Tagged A.L.L., Cancer, chemo, childhood cancer, community, inspirational, inspiring, leukemia, make-a-wish, Motherhood, parenting

Posted by T. Marie on February 23, 2013

http://all-ofus.com/2013/02/23/standing-in-the-sun/

What if … ?

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?

12 Comments

by T. Marie on January 23, 2013 • Permalink

Posted in Uncategorized

Tagged A.L.L., Bo Johnson, Cancer, childhood cancer, community, Go Bo Foundation, inspirational, inspiring, Jodi Lynn Anderson, leukemia, Love 4 Lulu, Maintenance Therapy, picture book, query letter, The What if Book, What if

Posted by T. Marie on January 23, 2013

http://all-ofus.com/2013/01/23/what-if/

Highlights (mostly!)

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.

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.

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.

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.

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

Oh, Mom …

16 Comments

by T. Marie on January 15, 2013 • Permalink

Posted in Uncategorized

Tagged A.L.L., allergic reaction, Cancer, chemo, childhood cancer, community, erwinase, erwinia, inspirational, inspiring, jazz pharma, jazz pharmaceuticals, Maintenance Therapy, Motherhood, peg-asparaginase

Posted by T. Marie on January 15, 2013

http://all-ofus.com/2013/01/15/highlights-mostly/

Silver Lining (plus recording of Lulu singing)

Hello Friends,

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

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

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

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

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

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

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

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

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

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

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

Love, and Happy Holidays,

a.l.l. of us

LYRICS – Christmas is a Time To Love

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

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

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

(repeat chorus)

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

and maybe they’re not perfectly in tune …

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

’cause Christmas is a time to love

(repeat chorus)

6 Comments

by T. Marie on December 12, 2012 • Permalink

Posted in Uncategorized

Tagged A.L.L., chemo, childhood cancer, christmas, community, inspiring, leukemia, Maintenance Therapy, Motherhood, OCD

Posted by T. Marie on December 12, 2012

http://all-ofus.com/2012/12/12/silver-lining-plus-recording-of-lulu-singing/

A Little Nitty Gritty

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 6^th 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

16 Comments

by T. Marie on November 25, 2012 • Permalink

Posted in Uncategorized

Tagged A.L.L., Cancer, chemo, childhood cancer, community, inspirational, inspiring, leukemia, OCD, parenting

Posted by T. Marie on November 25, 2012

http://all-ofus.com/2012/11/25/a-little-of-the-nitty-gritty/

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

3 Comments

by T. Marie on November 22, 2012 • Permalink

Posted in Uncategorized

Tagged A.L.L., Cancer, childhood cancer, community, inspirational, inspiring, leukemia, Motherhood, siblings

Posted by T. Marie on November 22, 2012

http://all-ofus.com/2012/11/22/to-my-big-boy-on-thanksgiving/

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

8 Comments

by T. Marie on November 20, 2012 • Permalink

Posted in Uncategorized

Tagged A patient helping patients, A.L.L., Bo Johnson, Cancer, celiac, childhood cancer, community, Emma Rose, fibromyalgia, Go Bo Fund, inspirational, inspiring, leukemia, The Blood Research Institute

Posted by T. Marie on November 20, 2012

http://all-ofus.com/2012/11/20/carrot-juice-or-chemo-2/

Lulu’s cameo in a music video

Lulu has a cameo in the end of this music video (click on link below). The This Time Tomorrow Foundation has been a wonderful supporter of Lulu, and other children with cancer. We are honored to have her take part in this work.
Thank you!

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!