Full Circle

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(pic above, car ride to the Hospital for Lulu’s surgery)

Full Circle

http://chw.wistia.com/medias/1ebjs89ldn (Bell Ringing Full version- Professional Video from Children’s Hospital)

Today was a big day:  Lulu went back to school.  It’s a strange feeling and it’s still sinking in.  I feel on the verge of tears.  I’d hoped to feel elated and bouncing off the walls, but I mostly feel … gosh, I can’t even find the words to describe it.  I think it will take a while to process the 2.5 years living in Crazy Cancerland to moving back into a new normal.

Lulu’s surgery went well, but was more complicated than predicted.  The surgeon called us into THE ROOM” that you never want to go into, which brought back a flood of emotion and memories of her multiple shredded appendix-on-heavy-chemo surgeries.  Our zen-master 6-foot tall & beautiful female doc calmly informed us that the port removal was easy, but they had found 2 instead of one hernia, both of which were larger than anticipated and interlaced with omentum (fat the leaks through hernias).  Lulu’s recovery proved that point true, as she struggled to move at all the first two days and didn’t stand or walk until the 3rd day.  But our Little Tough bounced back quickly after that, reminding us of the incredible healing powers children have.

While at the hospital, I felt so lucky to have seen two nurses that have been a special part of our journey.  First Leann — who was there in the darkest times when we were in ICU — a girl I know I would have over for dinner, walks and java on the front porch if we lived closer to each other.  She called me while we were in the waiting room, bubbling with excitement to have us on her docket in the recovery room.  I showed her the long version of the bell-ringing video (Link included at the top of this entry), and then Becki, another fave nurse, bounded over to give us hugs.  I replayed the video for her, Lulu still asleep between us, and she couldn’t stop the tears from continuing to roll down her instantly wet cheeks.  It made me count our blessings once more, that we’ve had such amazing care at Children’s Hospital, that so many nurses and doctors care so much for each of their patients, and have really become a part of our lives.  That was clear form the turnout at the bell-ringing too, seeing so many caregivers take the time to attend, watching them cast their eyes down as they shed tears of relief and joy for their special patient as the bell rang out.

We realized how powerful this moment must be for them, as well as for us.  As many times as we’ve been to that hospital and clinic, I only remember ONE other bell-ringing ceremony.  That’s a shame.  I’m sure the doctors and nurses don’t experience this powerful full-circle moment enough either, especially those that work on the H.O.T. unit, ICU, or other wings of the hospital.  I’m so grateful to have this special video to share with them, and others, to signify this success story and the journey and the hope that it inspires.

As I write this, I think the word that best describes how I’m feeling right now is humbled.  — So grateful to be one of the lucky ones, hoping and praying it holds, and never forgetting all the other children we’ve met along the way that we will continue to fight for.  Thank you all for being a part of this journey, holding us up when we’ve needed it, walking beside us when we’ve needed a hand to hold, catching us when we’ve fallen.  We’ve learned so much about love, the power of a community and how much difference ONE person … or one little girl … can make.

Thank you.

a.l.l. of us

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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

Nearing the Finish Line

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Hello Friends,

I just had to post again as I vacillate between giddy delight and emotional overwhelm. It feels like we’re all just holding our breath … unbelieving that it’s really almost here: MARCH 6TH, and MARCH 11th: Lulu’s last day of chemo and last surgery.

It’s been a special week. I was honored to have my children’s book The What If Book featured with our story for a fundraiser for Ridin’ For Research. It was SO powerful. The pages of the book served as a backdrop while video of our story was woven between moving narration. I was really choking back the ugly cry as pictures of Lulu came onto the two ginormous screens; reliving the story in bold face as it played out. We went on stage and passed out rainbow bracelets to everyone there which read: “Never stop wondering WHAT IF?” I can’t thank presenter Kim enough for her hard work on this event, her attention to detail and the research and respect she paid to our story, as well as Bo Johnson’s. Carol, the illustrator, and I did a book signing afterword and Lulu also signed each and every book, adding in a special bit of art with her signature. It was adorable and she stole the show as usual :-). I’m very proud to have been a part of it, and the event raised over $70,000 for cancer research!!!

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Max kicked some major bootay at Forensics this week, finishing his first season with 5 blue ribbons in solo comedy, culminating in the Power Rounds where he went up against 7th and 8th graders to walk away with the overall first place trophy! I continue to be amazed with how well he’s done despite his sister’s illness. He’s quietly and deeply affected by it, while managing to be there to make her laugh when she needs it, and still an imperfect enough big brother to remind us all to appreciate some normalcy.

Lulu is literally checking off the days on her calendar, also giddy and sensitive. She’s vomited the last 2 days in a row from her chemo, and feels ‘floppy’ but also extremely excited to give the nasty chemo dragon a permanent goodbye. It’s a lot to digest for all of us. We’ve been running into the wind for 2.5 years, heads down, completely focused. The thought of that force of air being cut off and calm seems almost unfathomable. I expect a tidal wave of emotion may come from behind us to fill that stillness …

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with love,

a.l.l. of us