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A Little Rain
Chemo, the double-headed dragon, continues to both protect and punish our little girl. Lulu’s been sick more often and severely as of recent, vomiting and experiencing periodic, but intense pain in...
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Out Like a Lion …
(pic above: our 2-year holiday card) Out like a Lion … 2013 left us with a microcosm of the ups and downs of the year wrapped up in one day. Looking back, it seems fitting … but I’m glad that it’s...
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So Close and Yet So Far
We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder. Since I always like to get the bad news out of the way first, I’ll start with...
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Quick update
Hello Friends, Just a quick update to let you know all went well with the Immunoglobulin transfusion! Besides a horrific tantrum that came out of nowhere (caused by combo of bad reaction to benadryl...
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Counting Down!
One week from today is Lulu’s LAST dose of chemo! 5 days after will be her port removal and hernia surgery. WOW, It’s really almost here. I wish I could report an uneventful week, but never a dull...
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Nearing the Finish Line
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...
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Lulu Rings The Bell!!!
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...
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Paying it Forward
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...
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Miracle Marathon video and letter
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...
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A Little Bit Of Courage
Hello Friends, Jul 19, 2014 1:05 PM Hello Friends, I know firsthand, from writing about our journey so publicly, that it’s not always easy to press that ENTER button… There have been many times I’ve...
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Tootsies and Trips
This morning began with foot in mouth. I’m not speaking figuratively; said something stupid, embarrassed myself or someone else … I’m talking 5 tiny pink painted toenails inserted ever-so-gently inside...
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“Rise”
I am with Lulu at Children’s this week for more treatment. She’s been the life of the party here, and hosted her own rainbow fiesta at rounds this a.m. One of our favorite docs brought supplies for her...
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Seeing is believing
I have two crazy stories to tell you this week. Crazy good, with crazy-amazing moments … The first story came out of the blue: I have to take Lulu into Children’s for bloodwork weekly, and put...
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Normal is underrated
Normal. It’s a word I’ve never really identified with. Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or...
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Dun Dun Duuuuuhnnnn . . . Delayed intensification.
We just began the toughest round of chemo for Lulu yesterday. There’s a reason for the name: Delayed Intensification. It’s just loaded with all the ingredients for an intense drama including 9...
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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...
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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,...
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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...
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Lulu’s Ad
Here it is! We are so proud of our little firecracker. Yes, she is Spirited indeed … We are a bit in the weeds this week, but I will write asap! She’s doing pretty well, and we are all hanging in …...
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Lemon-Aid
Hello Friends, I finally have a minute to give you an update. Lulu is getting a blood transfusion at the hospital, and after getting some Benadryl, is heading off to what I hope will be a nap. It’s...
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Reaching Bittersweet Maintenance
, Hello Friends, It always feels difficult to get started on these entries, but once the words begin to come, they do seem to pour out. Today, I’ll start where I finished last; the lemon-aid stand. I...
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Update and Lemon-Aid tomorrow
Hello, Just a quick update today. We will be doing another lemon-aid stand at our church, all proceeds go to childhood cancer research: Sunday (tomorrow) July 15 from 11-1. To donate to Love for...
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An eventful day
Yesterday turned out to be an eventful day. I got a phone call from my Dad, who had gone back home for a while. He told us his wife’s granddaughter, Kaylee, had been severely burned in a campfire...
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No news is GREAT news!
Hello patient Friends! It’s been a whirlwind lately, and I feel like a Tazmanian devil! – a whirling dervish of new life is unfolding with camps, activities, work, change, new med schedules, work,...
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Lulu describes … (recording)
http://chirb.it/MHh6LN Click on the link above to hear a recording of Lulu Recording transcribed: “His nose is a flower, and I think that his legs are tree trunks, and I think that his arms are...
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Bo Johnson article: Teaching us How to Live
Hello Friends, Lulu had another lemon-aid stand today at our church. We are so proud of our little one for inspiring these donations. We will do exact calculations, but we should have close to $3000...
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Go Bo.
Hello Friends, Bo lost his brave battle with leukemia very early this morning. Although he has left us, his spirit has not. The Go Bo Foundation will continue to grow and carry out his wish to cure...
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Lulu’s journey through pictures
Today marks one year since Lulu’s diagnosis. I found it too difficult to put the year into words, so I’m wrapping it up in pictures, and Lulu’s art. Thank you to the staff at Children’s Hospital, who...
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Lulu’s cameo in a music video
Lulu has a cameo in the end of this music video (click on link below). The This Time Tomorrow Foundation has been a wonderful supporter of Lulu, and other children with cancer. We are honored to have...
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Carrot Juice or Chemo?
They say there are two things you should never talk about at the dinner table: politics and religion. I beg to differ. I’d argue that food has become almost as controversial as politics or religion....
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To my Big Boy on Thanksgiving
Hello on this special holiday! There are so very many things to be thankful for this year. But I’m dedicating this Thanksgiving to my son, who sits by the sidelines while his sister receives positive...
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A Little Nitty Gritty
Hello Friends, I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family. Although she’s still doing well overall, we’ve had a...
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Silver Lining (plus recording of Lulu singing)
Hello Friends, Since my last entry, Lulu’s counts dropped even lower, which was unexpected. We had taken her off of her daily chemo, but she was still getting Bactrim two days a week and methotrexate...
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Calling of the Heart
Hello Friends, I have to share something with you this week. It’s not my story. Well, it is … but it isn’t. I’m so touched by the friendship I’ve found through a fellow blogger. I didn’t expect it, but...
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Highlights (mostly!)
Hello Friends! Wow, it’s been a while since my last entry. Thanks for your patience. I’ll hit the highlights and lowlights to catch you up to speed. Luckily, this will contain mostly the former! We...
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What if … ?
Hello Friends, I’m very excited to write to you today. I have a big announcement to make! I am finally sharing my children’s picture book “The What If Book”. I use the word finally, because this...
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Jazz Hands
(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...
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Standing in the sun
It’s like standing in the sun, feeling the healing warmth of it, when someone grabs you by the back of the neck and throws you into a meat locker. But now this place has become familiar. You’ve...
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Make-A-Wish Hawaii – Chasing Rainbows
I think most of us play it too safe. There’s so much fear around standing out, being different or not being cool (gasp!). We live in a world mostly void of color. This is something I’ve been giving...
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As the World Turns
I almost have to laugh … there conyinue to be so many highs and lows, our lives playing out like a soap opera; filled with glamour, drama, tragedy and triumph. Shortly after my Make-A-Wish blog entry...
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SUNSHINE AND RAIN
SUNSHINE AND RAIN (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...
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