Lulu Rings The Bell!!!

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Hello Dear Friends,

At last, the day finally came and our little warrior princess got to ring THE BELL!
I wish i had more energy to write about the incredible day yesterday, but if a picture is worth a thousand words, this video is worth a million!!!
Enjoy:

https://www.youtube.com/watch?v=J7K6NIEPKtg
Please keep us in your thoughts as Lulu goes in for her last surgery Tuesday.

Gratefully,
A.l.l. Of Us

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SUNSHINE AND RAIN

SUNSHINE AND RAIN

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(Lulu & Mrs. B)

Hello Friends,

Wow, it’s been almost a month since I’ve written. You’ll see why after you read this entry …

Much like the weather in the Midwest this year, our lives have been full of rainbows, storms, sunshine and rain … sometimes all in one day!

Ours began full of hope, as Lulu was set to ‘graduate’ from Kindergarten. She was SO excited, and had been chattering on and on about the program all week. She was going to sing choreographed songs with her class, and give a little speech along with a few other chosen students. She practiced her two lines diligently, and had them down pat before the big day.

Proud as punch, she was the last and tiniest to march down the aisle, chest held high, with laser-like focus and broad grin. The program was cute beyond words, especially the dance-moves! I must admit, I used to think Kindergarten graduation was kind of a joke … really, we need to graduate K5? This year, however, there was cause for celebration, pomp and circumstance. Lulu missed almost all of K4 last year, having spent most of it in the hospital. This year she missed 45 days of K5, yet graduated with a perfect report card and took home the most coveted trophy; the Eagle Award. This award is given to the child in each class who demonstrates the best spirit and behavior all year. – No mean feat while on daily chemo and monthly steroids!!!

I’ve never seen Lulu so proud of herself, holding her trophy and her teacher who has become part of our extended family. It was the perfect distraction after what had been a horrible day. My husband’s father was scheduled to move into a hospital 5 blocks from us when he passed away graduation morning. Jimmy’s mother was visiting us when she got the news, and I recognized the awful sounds emanating from her room as the phone call came in. She had known Mike since she was 15. Jimmy was on his way back from an out-of-town job, and was devastated. I think the whole family was in shock, and the impact of Grandpa Mike’s death was felt more deeply than any of us would have predicted.

Somehow, Jimmy sat down at his computer, and over the next few days wrote the most thoughtful, respectful and historical eulogy I’ve ever heard. He read it aloud through sobs and tears, but each word was heard and felt by all present. I’ve always had a lot of respect for my husband, but his words, and grace surrounding this event raised the bar. He even arranged and led a Harley caravan to all his father’s favorite haunts. The funeral concluded with full military honors and a 21-gun salute and formal flag ceremony; well-deserved after fighting in Vietnam, a war that effected Mike and his family ever after.

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Lulu spoke of death with an understanding that only one who’s lived so close to it can. She asked if Grandpa was up in heaven with Bo now, and was content my soft yes. She spoke of my mother, whom she’d never met but feels a connection with. She’s often talked about building a time-machine when she grows up, and the first thing she is going to do is bring back my mom, and Bo. Now Grandpa too.

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We are all getting back into our summer routines, Lulu and Max in camps off and on, Jimmy and I hard at work. I’ve gotten so used to giving her oral chemo that I can tell the bottles apart by sound alone: Methotrexate is a high-pitched light sound like tic-tacs, 6MP has a duller, lower sound, and Bactrim is low but has more of an echo when shaken. I’ve only broken down once recently, when I had to wake her to give her pills, and one hung from her lip as she slept. I wondered what am I doing to this poor baby girl? But it must be done.

She’s tolerating things extremely well, only occasionally nauseous and enjoying the summer quite like a regular kid (full head of hair and all!). We are counting down the days to March 2014 when we can ring the bell at Children’s, meaning she is cured and finished. There will likely be more unpredictable weather along the way, but we’ve found out our family is remarkably resilient. Thank you all for being a part of our umbrella.

Love,

a.l.l. of us

Allowing Abundance in

Hi Friends,

Thanks for your patience; this week has been incredibly busy!  There’s so much good stuff happening that I’m trying to be conscious of allowing it in, not questioning it, or feeling overwhelmed by it.  After the year we’ve had, this is not an easy task.  I’ve been waiting for the other shoe to drop more than I’ve been allowing  abundance in!  Yet, that is what I aim to do.

I’ll start with no news is good news on Lulu.  She’s the squishiest, cutest and chubbiest she’s ever been, and a whopping 42 lbs. after this week of steroids!  She’s still craving foods like a pregnant woman in her third trimester, but to see her actually eat more than a couple of bites of something is just remarkable.  Her blood counts are next to nothing this week, so she is delayed for the last big-daddy round of chemo.  She might need a blood transfusion or platelets this week, but that feels like a mere pause at a pedestrian crossing compared to the sadistic marathon we’ve been on.  She’s feeling good, drawing rainbows and enjoying the summer!  I too, love summer so much; it makes me feel like a kid again.  Riding bikes, sitting on the porch, having water balloon fights in the backyard … it’s all so filled with life.  Max is excited too, although he’s melancholy over leaving his elementary school.  Well, he’s genuinely forlorn, actually.  But how amazing to love school so much at his age that he doesn’t want it to end?  I don’t recall having that same feeling … do you?

Realizing this will likely sound trivial, I must tell you that Lulu tied her own shoe for the first time.  I think parents with children who are life-threateningly ill subconsciously stop looking at things like comparison charts, growth charts, and expected milestones.  Every time I get one of those “Your Preschooler this Week” emails, I delete it instantly, for fear she may not meet some silly standard listed there.  Before treatment begins, the doctors give you a list miles long of the physical, mental and behavioral problems that can happen due to chemotherapy.  As you sign the documents declaring your understanding of the risks, you force your eyes to blur the words together on the page while holding your breath.  The normal expectations just don’t matter now; all that matters is that she’s healthy.  So, it took me by surprise when she tied that shoe, and how beautifully on par it was.  She was giddy with delight over her accomplishment and both Daddy and Mommy were there to share in that joy with her.

Things with the rest of us have been pretty good too.  After deciding not to work for these 7 months, the perfect opportunity seemed to land in my lap.  I’m doing some freelance consulting, mostly from home.  I could tell you more but then I’d have to shoot you, as I signed a non-disclose J.  Suffice it to say, I’ve had to wake up that fat lazy hamster who’s been couch-potatoin’ it up in my brain.  He didn’t get any warm-up either, just had to clear the cobwebs off his wheel and start sprinting baby!  He’s hanging in there though, after a little WD-40 and some unconditional love.   It’s been a little stressful, but also a welcome challenge, and I think good for Lulu to see me doing something that’s normal to her, too.  Jimmy’s work has thankfully been flowing in like a raging river, and he’s using all his great stamina to keep being the rockstar he is.  He’ll be travelling again very soon, which brings me to the good news that my dad is staying with us for a while!  We’re busy turning our bedroom-turned-closet back into a bedroom for him so he can have his own space.  We are all glad to have him here.

But wait, there’s MORE INCREDIBLE NEWS!  Lulu and we were chosen to do a photo shoot for an international drug company.  Apparently, quite a few caregivers from the hospital referred us to the company that makes one of the life-saving drugs Lulu is on.  This was a real compliment since they wanted a family who was still (mostly) thriving during this ordeal.  (We just found out the divorce rate for a family going through this is 70 percent!!!).  Ironically, the ad is for Erwinase, the drug I wrote about recently that requires shots in Lu’s legs.  They flew in a crew from L.A., and we did a photo shoot at the lakefront, and in our house (OMG, yes, we had to deep clean for that!)  We didn’t know how the day would go with Lu weaning off the effects of the steroids, and being a wee 5 years old.  Well, that little hambone tore it up!  The shoot was supposed to be 3 hours for two locations and ended up being 5.5 hours!  She was eating up every single minute, and you would have thought she’d been doing this for years.  The crew was amazing, kind, and absolutely fell in love with our little princess, hence the extra pictures.  Jimmy, Max, Grandpa and I ended up in some shots too, and had to sign releases.  Lulu told me how happy she was, and that she had “awlways, AWLWAYS” wanted to do something like this.  She had, in fact, been begging me to let her model before she was diagnosed, and I was considering giving in.  It was wonderful to see her celebrated, bald-headed and all, in this way.  Apparently, each person in each of their campaigns is given a word that describes them.  The word for Lulu: “Spirited”…  a perfect fit!  I’ll be sure to put the ad in the blog when it comes out.

So yes, we are allowing abundance in this week, or for however long it is here.  And I’m trying not to feel a sort of survivor’s guilt during this time.  Our friends Kate and Bo are still struggling and we think of them every day along with others at the hospital.  Kate has made huge improvements and is receiving mostly homecare now, but it’s still extremely difficult, and exhausting for her and her parents.  Bo has had some setbacks, but is in line for a bone marrow transplant now and luckily only had to endure one big round of chemo to knock his counts out before being eligible.  I know they’re happy when any of us are doing well, just as we are for them, so I hang on to that.  We go to visit the H.O.T. unit every chance we get, and are donating the proceeds from the photo shoot to that unit.  Please continue to keep all those kids in your thoughts and send them some good juju when you can.

Jimmy and I recently got to go on an impromptu afternoon date, on what was pretty much the perfect day.  As we drank a mojito, ate delicious food and sat in the sun, we felt so grateful.  Grateful for our family, and for you, our friends (even virtual).  Grateful for the beautiful day and the love that surrounds us.  Grateful for this moment in time, right here, right now.  Thank you for not forgetting us, even though life is full and time has marched on.  We welcome and appreciate your love … and abundance!

a.l.l of us

Radio interview with Lulu

Many of you have asked to hear the recording Lulu and my husband did for Children’s Hospital, so here it is in all it’s beauty.  I’m SO proud of them both.  Lulu’s voice dapples sunlight throughout, and shines ever-so-brightly in the end. 
Thank you for taking the time to listen, and to our dear friend Tabb for getting this recording to us.