(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:

A

Luscious

Life

Good will come of this.

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

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