All posts tagged inspiring

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/

Jazz Hands

(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!).

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.

(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.

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

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:

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!

14 Comments

by T. Marie on February 12, 2013 • Permalink

Posted in Uncategorized

Tagged A.L.L., Cancer, chemo, childhood cancer, erwinase, Go Bo Foundation, inspirational, inspiring, jazz pharma, jazz pharmaceuticals, Love 4 Lulu, PEG-asparigenase

Posted by T. Marie on February 12, 2013

http://all-ofus.com/2013/02/12/jazz-hands/

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/

Calling of the Heart

Hello Friends,

I have to share something with you this week. It’s not my story. Well, it is … but it isn’t. I’m so touched by the friendship I’ve found through a fellow blogger. I didn’t expect it, but I surely cherish it. I’ll let her words tell the story:

Stephanie Raffelock’s blog “Calling of the Heart”

You can fall in love on a blog. Honestly you can. I have fallen in love with a family. There’s a mom, who is the blog writer. Her name is T and she is the reason that I came to know them all. There is a father who is strong, brave and very kind. There is a big brother, that if God would let you choose a perfect big brother, this is the kid you would choose. They call him “Bugs.” And then there’s Lulu. Lulu is a hero to a lot of people and she is winning a battle with cancer at a tender age when no one should have to fight such battles, but fight she does and I am convinced she is winning. I follow this blog so that I can keep up on Lulu’s progress, Bugs’ inspiring support, and mom and dad’s amazing, horrible/beautiful journey.

Recently Lulu was in a Christmas program and I heard her little voice singing straight to my heart over the magic of the internet. I was inspired to write a Christmas story just for Lulu and her brother, Bugs and my Labrador retriever, Jeter. I like to put Jeter into a story when I can, and as you will see, he is crucial to the outcome of this tail, er, um, I mean “tale.” So here is my story, dedicated to a family that I have fallen in love with. It’s called How Lulu, Bugs and Jeter Saved Christmas“ Note, since this posting, Stephanie has taken a break from her blog. We miss her writing very much. She has given me a copy of the story which I will post below.

Thank you Stephanie, you’ve made our holidays brighter!

Love,

a.l.l. of us

How Lulu, Bugs and Jeter Saved Christmas

Lulu was a very special little girl with a really special big brother, affectionately known as Bugs. Lulu was sick sometimes so she knew all about what it was to hurt and not feel good. This made her heart very big and very sweet. She could so easily see other people’s hurt and knew how to love them back to feeling better. The big brother knew how to be caring because loving his little Lulu the way he did, his heart too was very big from all the selfless kindness he had learned.

Lulu and Bugs were looking forward to Christmas, when Bugs got an email one day from Santa. It read:Dear Bugs and Lulu, I am running late this year and I need a couple of great kids to help me or there may be houses I cannot get to on Christmas eve. I know that you two are very good at helping others, so can you help Santa this year? I need you to take over gift delivery for the west coast. I will drop off a bag of presents with addresses next week. Look next to your fireplace in the morning on Tuesday.”
Love, Santa

Now of course Bugs printed out Santa’s email and showed it to Lulu right away. “How are we going to help?” asked Bugs.

“We are going to have to find away to fly around the sky and deliver packages to the children on the west coast,” said Lulu.

“I wish we had some reindeer,” said the big brother. “That would make everything perfect. We could fly around and get gifts to all the kids in time for Christmas morning.”

Then Lulu had an idea, an absolutely brilliant and wonderful idea. “There is a Labrador retriever that lives not too far from here named Jeter. The owner is always saying how Jeter doesn’t walk anywhere, he flies.”

“Ummm, the owner might have meant that differently than you are taking it, Lulu.”

“No, she said, shaking her head. “I believe that Jeter the Labrador can fly and he is just the dog for the job! We can make him a reindeer costume and that will help.” So Lulu excitedly ran off and found a brown bath towel and some old felt in her art area, and she started making a costume for Jeter, so he could fly like a reindeer.

Tuesday morning there was a big bag of gifts next to the fireplace, just as Santa had said. Attached to the bag was an envelope filled with names and addresses…and on the envelope was a small note that looked like it was written in Santa’s own handwriting: Don’t worry, your mom and dad cannot see this bag. It is invisible to everyone but you. Thanks again for your help—Santa

“Well that’s a relief, “said the big brother after he read the note. Now I hope we’ll find a way to get all these presents delivered.

Lulu rolled her eyes. “I told you, Jeter can fly. We just need to dress him up in some antlers and some other stuff so that he looks like a reindeer. Look at what I made.” Lulu pulled out the brown doggie cape and antlers from under the couch and smiled proudly as she held them up for Bugs.

“We have to figure out how to get Jeter without actually stealing him from the yard,” said Bugs.

“Why don’t we just offer to walk him on Christmas Eve?” So the plan began to take shape. Lulu and Bugs had a reindeer costume for Jeter and a way to get the dog for Christmas Eve. And next to the fireplace was a bag of gifts that they were going to deliver to all the kids on the west coast.

Bugs walked over to the bag. “This is going to be really heavy.” But just as he said that the bag rose a couple of inches off of the floor.

“OMG,” said Lulu, “looks like all we will have to do is guide it.

Later that afternoon their mom was serving them soup and crackers for lunch. The kids spoke in whispers and were carefully hiding a list that they were making. It was a list of everything that they would need to do Christmas Eve in order to get the presents delivered.

“You two seem like you have a little plan going,” said mom.

Quickly Bugs put the list in his pocket and grabbed a cracker. “There’s no plan. We were just talking about Christmas and how cool it’s going to be.”

The mom smiled. “Well, don’t let me interrupt,” she said, and she returned to rattling around the kitchen or whatever it is that mothers actually do in the kitchen.

It seems like the days couldn’t go fast enough between the now and Christmas Eve and Lulu and Bugs had never been so excited. They had moved all of the gardening tools out of a large wheel barrow in the garage and decided it was big enough to hold them and the bag of presents. They rigged up a harness for Jeter so that he could pull the wheelbarrow across the sky, though Bugs wasn’t too sure about a Labrador retriever actually flying. Lulu was convincing though.

On Christmas Eve day, Lulu wasn’t feeling too well. It happened sometimes She had good days and not so good days. Bugs was afraid that maybe they wouldn’t be able to go. Life could be up and down like that at his house. One minute you have exciting plans and the next minute Lulu’s needs become the centerpiece of the family. By afternoon though, Lulu was feeling strength flowing into her body and her heart and she called out to Bugs from her bed. Bugs sat on the edge of Lulu’s bed and Lulu broke into a big, mischievous grin. “Let’s do this. Come and get me after mom and dad have gone to bed.”

A light snow was falling and a winter moon hung low in the sky when Lulu and Bugs quietly and secretly snuck out the front door. The two kids wheeled the wheelbarrow down the street with the bag of presents inside, along with the reindeer costume and harness for Jeter. They knocked politely on the owner’s door, with the wheelbarrow out of sight, of course. “Hi,” said the two angelic little faces. “We wondered if we could take Jeter for a walk?”

“It’s awfully late for you two to be out, isn’t it?

“Well,” said Bugs “We are so excited for Christmas that we can’t sleep. I think if we can take Jeter for a walk and then put him back in your yard, we will all sleep better.”

The owner handed Bugs the leash and told him to go get Jeter from the yard. Lulu and Bugs smiled and waved, calling out Merry Christmas before they ran like the wind through the gate and into the back yard where a yellow Lab sat waiting as if he knew exactly what they were there for. No leash was necessary because Jeter was already following the two out of the yard and into the bushes where the kids had hidden the wheelbarrow with the presents.

Lulu pulled out the reindeer costume and put it on Jeter. “I know you can fly and if anyone sees you, just tell them you are a reindeer.”

“He can’t talk,” said Bugs.

“We don’t know that for sure,” replied Lulu as she fastened the reindeer costume around Jeter’s neck and straightened the antlers so he would for sure look like a reindeer.

Bugs harnessed Jeter to the wheelbarrow and the kids crawled inside with the big bag of presents in their laps. “Okay Jeter, this is it. Giddy up.” And with that Jeter began running faster and faster and suddenly they were airborne. Bugs mouth fell open and it took a minute to catch his breath. Lulu smiled a smug little smile and said “Told ya.” Off into the night sky they went, snow swirling around them, lights twinkling below them.

“How do we know when we are on the west coast?” asked Lulu.

“The lights will stop at the ocean and we’ll see the outline of the coast.”

Lulu got a worried look on her usually confident little face and said “How do we get the presents into the houses? Do we just drop them through a chimney? What if there are no chimneys? Do we use the front door?” And just as she was getting truly worried, they saw the coast up ahead. Jeter acted like he had been flying wheelbarrows across the sky his whole life and he dipped down low to the roof line of a row of houses and turned his head and barked three times.

“I think he wants us to drop a present,” said Bugs. So he picked a package. “I hope this is the right one for the right address.” And as he dropped the package it turned to golden glittering light and swooshed into the house under the door. So, he picked another package and again, it turned to golden glittering light and found its way to another door. Lulu picked a package and dropped it watching it swirl under the doorway of yet another house. The kids started laughing and picking and dropping packages at a very rapid rate. Jeter howled and wagged his tail with delight. It seemed as thought Santa’s bag held an inexhaustible supply of gifts. Up and down the coast they went, dropping packages and watching them find their way into homes in the form of glittering light.

As Lulu and Bugs flew about the sky in the wheelbarrow pulled by Jeter the flying Labrador retriever, they started to sing:

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

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

The singing made everything very easy and pretty soon all of the packages were delivered and they were flying toward home. As Jeter landed he knew in his doggie heart and mind that he had two very tired passengers. He pulled the wheelbarrow to their yard and just like his mother had done with him, he gently picked up each child and managed to get through the front door and tuck them each into bed, nosing the covers up over them. Afterward, Jeter went to his own home, jumped over the fence climbed through the doggie door and fell into a deep and satisfying slumber.

Before the sun was up, Jeter’s owner padded downstairs to make a pot of coffee and noticed the dog sleeping in front of the tree. “What in the world? Where did you get this reindeer costume?” she asked as she bent over to untie the brown towel and antlers. “Those kids are something, I’ll tell you.” A tired Jeter looked up and wagged is tale before putting his head back down to sleep. “That must have been quite the walk, Jeter. I don’t think I’ve ever seen you so mellow. Have a good nap. You’re a good dog.”

In another house a couple of blocks away a light glowed in the bedroom window of one Lulu. Kneeling by her bed was a jolly old man with a long white beard in a red suit. “Thanks for helping me out kid.” Lulu was still half asleep but she nodded at the old guy and said “You’re welcome.”

“Hold out your hands, “said Santa. I have something for you. A special gift for a special girl. Lulu held out her hands and was amazed. Santa had placed a light in her hands. “Oh my gosh,” exclaimed the little girl. “What is this?”

“This,” said Santa “is an inexhaustible supply of beauty, love and hope. Whenever you need or want those things, or want to give them to others, just place your hands over your heart.” With that the old man kissed Lulu’s forehead and tip toed out of the room, as she had already fallen back to sleep…with her hands held to her heart.

Santa moved on to Bugs room and quietly opened the door. “Hey buddy,” he said. “You guys did a really good job out there tonight. Thank you for all of your help.”

“You’re welcome, Santa.”

“I have something for you, Bugs.” Santa handed Bugs a small bag.

“Thanks what’s in here?”

“This is what I like to call portable compassion. You can take it anywhere.”

“What’s portable compassion?” Bugs wanted to know.

“Compassion is when your heart quivers because someone else is hurting and by your heart being open to them, you help to heal the hurt. And portable just means you take it with you anywhere and everywhere. I know Bugs that sometimes Lulu gets all the attention, because she gets sick. And I know that sometimes you feel invisible. But please know, your parents see you. Lulu sees you and all the world sees you and your goodness. You’re a really special guy. Remember to carry compassion with you. Give it away freely and make sure that you always keep a little bit for yourself.”

Then Santa patted him on the back, because that is what guys do. And with that, Santa was gone and Bugs was rubbing his eyes as mom and dad walked into his room.

“Are you up? they both said in their cheeriest Christmas voices. Am I up, thought Bugs. Oh mom and dad, if you only knew!

“I’m up,” said Bugs and as he put on his bathrobe, he reached for the little bag of compassion and made sure he placed it in his pocket.

Christmas morning was filled with surprises and delights for all of the children on the west coast and in one home in one living room in one part of a very large country, the life of Lulu and Bugs was also filled with wonderful surprises and delights.

As they sipped on hot chocolate and opened their Christmas presents their dad gazed out to the front lawn. “How in the world did the wheelbarrow get into our front lawn?”

“Maybe Santa needed it to haul presents,” said Lulu. And Bugs and Lulu exchanged knowing glances, holding onto Santa’s special gifts that would always, from this day forward save Christmas in their hearts.

2 Comments

by T. Marie on December 22, 2012 • Permalink

Posted in Uncategorized

Tagged A.L.L., chemo, childhood cancer, inspiring, leukemia, uplifting

Posted by T. Marie on December 22, 2012

http://all-ofus.com/2012/12/22/calling-of-the-heart/

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

a.l.l. of us

All posts tagged inspiring

Standing in the sun

Jazz Hands

What if … ?

Highlights (mostly!)

Calling of the Heart

Silver Lining (plus recording of Lulu singing)

A Little Nitty Gritty

To my Big Boy on Thanksgiving

Carrot Juice or Chemo?

Lulu’s cameo in a music video

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