Presenting …. The Amaaazing Lulu!

Lulu.  She’s amazing to me.  She’s been hanging so tough this last couple of weeks.  Although this round has been better than expected so far, it hasn’t been easy on a little 5-year old.  She’s taught me so many things throughout this process.  I’ve learned through her wise words, as well as by what I’ve had to teach her to help her get through this ordeal.

Some of my favorite Lulu quotes of the week seem to develop out of the mist.  She might be sitting in the car, or going for a ride in her stroller, or waiting in the hospital, but they are always preceded by a soft silence:

“Mama, We’re all made differently, I’m supposed to look just like this.  Not like anyone else.  Just like this (smiles). ‘Cause this is how I was made.”

“You know what would be the worst villain ever?  A flower-making villain who shoots flowers out of a gun.  Now that would be lame.  The good guys would be, like, ‘really Dude?”

“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.”

“You know what?  Girls can rap too.”

Every week she’s had to endure painful shots in her legs, two at a time, 3 days/week.  Because she had a horrible allergic reaction to one of the chemo’s a while back, she must endure 24 shots of a similar, but different strain of chemotherapy.  Can you imagine being 5 years old and having 3-4 nurses come in, dressed in full chemo gear, holding you down and poking two 2” needles into your legs simultaneously?

So … we’ve been working hard on self-talk.  We have to put numbing cream on the spots 1-2 hours before injection, which gives plenty of time for the total fear and anxiety to build up to near hysteria.   Therefore, we’ve developed an inner dialogue worthy of a scene from The Help:  “I am brave, I am strong, I am tough, I am LULU!”  I whisper it in her ear over and over again, until she starts breathing more deeply.  I’ve taught her about her “brave spot”, which she says is sometimes hiding in her toe, and one time it was even hiding in her bum!  I physically roll the brave spot all the way back up into her heart and have her hold it there. We talk about how many times she will have to endure this, how amazing she is, and what a beautiful strong woman this is going to shape her into being.  She really understands and tries mightily to overcome her fears.

The nurses are as kind, gentle and patient as they can possibly be, and allow Lulu to have her one bit of control over the situation, which is allowing her to count to 5 before they give the shots.  She makes them promise over and over again to do it quickly pweeze, and put the band-aids on wright away.  Pweeeeze Pweeeze! After a few rounds of that, she gathers herself, closes her eyes and says “o.k., o.k. I’m doing it.  I’m doing it.  O.K.  She likes to watch everything that happens, so she chooses one of her legs to look at, then, as fast as humanly possible, she says “onetwofreefourfive!”  The injections come, and even with the numbing cream, the chemo going into her thighs burns.  She screams operatically, and squeezes our thumbs as hard as she can.  She really, really likes both Jimmy and I to be there, and the days Jimmy can’t be there are always harder.  After a few minutes she recovers, and always says “That was the ONLY storm for today, right?  Now it’s rainbows for the rest of the day! RIGHT?”  Yep.  Rainbows the rest of the day, I promise honey.   We have two weeks off from these, then two more weeks on.  Good grief.

Other than the shots, Lu’s been tolerating her treatment extremely well!  The steroids haven’t been nearly as bad as the first round, and I think we’re trying to see the lighter side of her dramatics as well.  Just don’t laugh at her when she’s mad!  Ooh, it’s so hard, she’s so funny!!! Everything is theatrical. “NO, MAX IS BUUUUGGGING MEEEEE!!”  “WHY won’t Max PWAY WIFF ME?!? I WUUUUV HIM!!!”  These sentences could be said within 5 minutes of each other.  You get the picture.

She’s been nauseous a few days, but is STILL EATING!  I’m afraid to even write this down, that I might jinx it somehow, but she is OFF OF HER FEEDING TUBE!!!  Oh, it’s glorious to see those two little soft cheeks again.  She looks so beautiful, and is overjoyed at getting that darned tube out of her nose and throat.  We’re praying she doesn’t need it again, but the docs know it’s a possibility if she doesn’t eat enough, or starts vomiting.  Her counts have just begun bottoming out and the hardest drugs begin next week, but one day at a time …  I know this little girl can do anything she sets her mind to.  She is truly one of the most determined people I’ve ever known.  If she will only use her powers for good, how amazing she will be in the world!

Oh, and know that Lulu fully realizes how special she is, as she demonstrated the other day:

“Do you want to see that I am special?” (gets up from her chair, turns around with her back to us, then whips her head around) “Look!!!  I can see my own butt!”

It’s been a rainbow-liscious week, which wrapped up with my big boy playing the lead in The Jungle Book, and my hubby and baby girl going live on the radio.  Max was adorable in his little red loincloth and fake-bake.  He was bubbling over about it, and told me that if he had a second middle name, it would be Actor.  A ham is born.  Daddy and Lulu were on the radio yesterday to raise money for Children’s Hospital.  To say I’m proud of them doesn’t begin to cover it.  All got to listen to my articulate, obviously moved husband and the sweetest voice you’ve ever heard from Lulu, who knowingly wraps things up beautifully in the end of the segment.

Love,

a.l.l. of us

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14 Comments

  1. Carol Curley

     /  May 25, 2012

    Lulu, you are one beautiful little girl with a soul as colorful and bright as any rainbow could ever be!

    Reply
  2. Julie Zamborini

     /  May 25, 2012

    The Amaaazing Lulu…is my hero! xo

    Reply
  3. jenrotty

     /  May 25, 2012

    This made me so happy to read. What a week indeed. I heart all of you. Love and stormless days ahead for you. Only rainbows

    Reply
    • Yes Jen, rainbows with a scoop of rainbow ice cream. Miss you so much, looking forward to August.

      Reply
  4. To your strong and beautiful rainbow bright! Lulu is right.. God is everywhere and it’s the wisdom of our little ones who often guide us closer to him 🙂 Also the ability to see her butt is something that she should be very proud of! Hey, I just tried it, and I couldn’t!! hahahaha… Please post your husband and Lulu’s radio podcast so we can listen to it all the way over here please please pretty please…. an inspiration as always I think a children’s book is in order “The adventures of Lulu: painting the world one rainbow at a time”…
    Raising the roof from HK my xoxoxo

    Reply
    • Love the children’s book idea. Hmmm, one more project to add to the list of inspirations… 🙂

      Reply
  5. Linda

     /  May 27, 2012

    This post reminds me why I love working with children. They say and do the most amazing things. I loved all the things Lulu said and did. I love that you are remembering them and writing them down. One of the favorites I remember from one of my kids was, “Hey Mom, look, all the letters in my name are in the alphabet!” I saw the lineup for the radio program but did not see Lulu and Jimmy on the list. I am disappointed to have missed it! T and Jimmy you are doing such a great job as parents. Helping Lulu through A.L.L. of this. Helping her find her brave spot, to have positive self talk, to give her control when possible. You are so available to her (and Max as well). Keep it up, your in my prayers, ’cause- “We can’t see God, but that’s real too.”

    Reply
    • So glad we got a copy of the program to share. Giving her control has been harder and harder these days, hence the frustration she’s feeling lately. My mantra these days: Let go and let God…

      Reply
  6. Stephanie Raffelock

     /  May 28, 2012

    In the face of such open courage, there are no words, just a swelling in the heart for Lulu and her Lulu wisdom. Sending love. . .

    Reply
    • You are amazing, you manage to move me to tears with one sentence. So grateful to have found you.

      Reply
  7. Jenny Mendenhall

     /  May 31, 2012

    I continue to think of your family all the time. I just read a column in Sports Illustrated. The girl in the story Bebe reminded me of Lulu, the journey your family is on and the wisdom of these strong fighters. Here’s the link:

    http://sportsillustrated.cnn.com/vault/article/magazine/MAG1199047/index.htm

    Hope this week is going well for Lulu. Jenny

    Reply

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