Miracle Marathon video and letter

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http://fox6now.com/2014/05/22/find-out-how-you-can-help-childrens-hospital-of-wisconsin/

Hello Friends,

As we reach the last few hours of Miracle Marathon, I wanted to share a tv interview we did with the kids, where their words were eloquent and insightful beyond their years (link above). I am also sharing a letter wrote in the middle of the night last night for Miracle Marathon. Co-host Carole from The Dave and Carol show just read it beautifully, through tears, on the WKLH 96.5. I don’t know how she and Dave do what they do, but what an impact they are making. Here is the letter:

Hello Dave & Carol,

 

I woke up with a burning desire to say more, to do more … even after our on-air interview. So here I am, writing to you at 3:45 a.m!

 

We talked a lot about how wonderful Children’s Hospital is, but we left out an important and unique element; the caregivers themselves. One can read the statistics and know they will receive state-of-the art medical care at Children’s, but it is the staff there that will remain in your hearts forever.

 

Having spent so much time at the hospital over Lulu’s 2.5 year treatment for leukemia, we became very close with many of our caregivers like Dr. Towers, Dr. Roberts, Dr. Kelly, and Dr. C. and the nurses there, who live with you in the trenches every day, like Bonnie, Linda, Lauren, Leann, Sal, Kim, Deb, Becki and so many others … Not only do they care for you as they would their own family, they LOVE YOUR CHILD … even at the risk to their own hearts. It’s not an easy business working on the H.O.T. unit, or in the MACC Clinic, where tragically, not all of your patients make it. We spent enough time there to lose friends, amazing children like Bo Johnson who has forever touched Lulu’s and our heart, Jack Bartosz, Corey Batz, and most recently, Superman Sam. It takes an exceptional person to work with these kids and families EVERY SINGLE DAY with love, and Children’s has an abundance of exceptional caregivers.

 

There were many times when we didn’t know if Lulu would make it. Children’s Hospital literally saved her life on at least 3 occasions. First, when she was diagnosed with leukemia and placed on a 2.5 year intense protocol. The second time was when her appendix burst during treatment, adding major complications, surgeries and months in the H.O.T. Unit, and the third, when she had an allergic reaction to a chemotherapy drug (peg-asparaginase) and went into anaphylactic shock. We never forget how lucky we are to have our beautiful Lulu with us, so full of life, light and love.

 

We are humbled by our experience at Children’s Hospital and will never stop fighting for all the children that have lost their battle with cancer. We try to live and teach our children that if you have the ability to help someone, you have the obligation to do so. Having sympathy and empathy in hearing someone’s story simply isn’t enough. We must ACT. It is only through action that change is made. So PLEASE, those of you listening today, take action by picking up the phone, or making a donation online to Children’s Hospital. You can save a child’s life by taking action right now, today.

 

With love and gratitude,

 

a.l.l of us

 

If you wish to donate, please call 414-337-9554 or visit http://fox6now.com/2014/05/22/find-out-how-you-can-help-childrens-hospital-of-wisconsin/

 

Paying it Forward

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Hello Friends!

I wanted to share a very special blog entry I co-wrote with my 11-year old son for Children’s Hospital of Wisconsin (link below).  Lulu has become the ‘face’ of the Miracle Marathon for 2014, which is an amazing 2-day on-air radiothon by WKLH Dave & Carol that raises $1.3 million for our very own Children’s Hospital of Wisconsin!  We will be on-air May 22nd at about 8:15 if you’d like to listen.  You can donate in Lulu’s name if you wish, or for any of the other little warriors still being treated at Children’s.  Their goal is to raise $1.5 million this year, and we are so pleased to be such a big part of this effort.  Lulu’s face has been plastered all over the hospital, websites, mailers, etc.  She just celebrated her 2-month ALL CLEAR check-up and I’m thrilled to report she has been feeling fantastic, full of life and happiness!!!  We are so very grateful for the treatment and care we received at Children’s Hospital and feel honored to be able to pay forward some of our good fortune.  

Please take a minute to read the blog entry through this link, and you can also watch the video of our story at the top of the page.  

http://blog.chw.org/2014/05/lulu-story-miracle-marathon/

With love and happiness,

a.l.l. of us

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