Twinkle Twinkle Little Star…

Two years ago today.

My house, my heart and my LIFE were so full of love I could’ve burst. I was truly the happiest I have ever been in my entire life. Family and friends in town for a celebration of life, victory and health….two years ago today was Kate’s “No More Chemo” party.

I will never pretend to understand why we were given this remarkable gift only to have it ripped away. While selfish, I know I could have handled her cancer again. I could have handled her relapse. I could handle anything thrown our way…but not this. Not what happened.

And yet, I know how lucky we were. I KNOW there are families who never even got the OPTION of this day. Because there is no “done.” There was no “better.” For this reason, and because she deserved a LIFETIME of this right here…I celebrate my beautiful, precious, smart, kind and LOVED little girl.

I love you my angel. I loved this day two years ago and I loved every single minute I spent planning, crafting and talking about it with you. I imagine heaven is just as full of pink and gold glitter, sparkles, painted faces and balloon lady bugs. I imagine you and your beautiful, perfect friends playing on heaven’s playgrounds for hours.

Twinkle, twinkle little star…do you know how loved you are?

Sick Day, PTSD…and Target

“I’m here at Target so I’ll be home a little late. Tell Katie I’m on my way. I’m picking up the prescription and anything they sell that will get her better. Enough is enough.”

I asked my mom whether I should buy the cute little elephant humidifier or the one that you can use with those Vicks vapo tab thingies.

“Cute is cute, but get whatever will WORK!” she replied. She then added “get those pads you put in the shower to steam up her bath time, too!”

It was “some day” in January and I’d been logging Kate’s symptoms, eating habits, bowel movements and sleep patterns for days. We’d seen the oncology team and pediatrician and thought we were onto something when he prescribed nebulizer treatments for likely asthma. That cold she caught in November hadn’t gone away.

I didn’t know that on that “some day” in January, Target didn’t sell what she needed.

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A Kegs & Corks Recap

Kegs & Corks for Kids’ Cancer is very quickly becoming our favorite. It was SO. MUCH. FUN. Lots of work? Definitely. Totally worth it? Without a doubt.

Beer + wine + great friends + football + cute kids + a good cause = one amazing way to spend a Sunday.

Kegs & Corks for Kids’ Cancer started four years ago and was founded by Kate’s beloved nurse, Sarah. Never one to sit back and watch the world of childhood cancer pass by without being ACTIVE, Sarah found a need to give back (as if her contributions to our kids and families wasn’t enough.) This year, Sarah decided she wanted Kate’s Cause to benefit from the monies raised and the dream partnership of Sarah + Lindsay was created and Kegs & Corks for Kids’ Cancer Benefiting Kate’s Cause was born. Continue reading “A Kegs & Corks Recap”

Why I Failed CureFest

I so wanted to come to this place after a weekend of awareness and activism with dozens of photos of the events that unfolded and new friends we’d made. I wanted to feel I’d made a difference…raised my voice. I wanted to make Kate proud – so many of these organizations there are just overwhelmingly awesome with what they accomplish and how they raise awareness.

But. I didn’t.

I failed at CureFest this year.

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I’m Sorry it Didn’t Stay Gone

I shared most of this post a year ago today when it had been one year. Today is mind-numbing to me that it has been two. A friend shared a post of her own last night that said “September is my season” referring to the season of way too many emotion-flooded days relating to special anniversaries, memories and of course, childhood cancer awareness month. I told her that September is my season too, and today is really the reason.

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Childhood Cancer Awareness Month – Day 5

So this downright boggles my mind, friends. Children are the future, eh? Not judging by these figures!

What people often fail to realize is that there is no “trickle down” effect when developing drugs for adults, assuming that kids will benefit. We cannot continue to keep treating our children as just little adults. They are different! They are developing! But it’s not even just that!

In almost every instance, the types of cancers that develop in children are different from those that develop in adults. Childhood cancers are often the result of DNA changes in cells that take place very early in life, sometimes even before birth. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors.

WE MUST do better for our children. WE MUST develop new medications that are safer and less toxic while we beat down every door looking for the cure.

I promise I will fight for exactly this. Will you? Because on August 14, 2013, I wasn’t a cancer parent either…

Childhood Cancer Awareness Month – Day 4

A few days ago, I shared a statistic about ALL being the most common type of pediatric cancer. I shared about how I was made aware about childhood cancer before it came beating down our door. I want to tell you all how grateful I am to YOU for sharing your own stories and am humbled by how many of you stay with us here to learn and to share.

Continue reading “Childhood Cancer Awareness Month – Day 4”

Childhood Cancer Awareness Month – Day 2

I became (truly) aware of childhood cancer on August 15, 2013 when my baby, my beautiful Kate Olivia was diagnosed with high-risk pre-b acute lymphoblastic leukemia at the age of 2 years, 2 months and 10 days old.

I have to say that I “knew” of childhood cancer before that…my sister’s friend had a daughter that had battled cancer before (and had been re-diagnosed just days before Kate.) I’m sick over the fact that my reaction was something to the effect of “oh no, how sad” and “I’ll pray for them.”

I had no idea what the family had been through. I had no idea what we were about to face.

BUT. I would come to learn the harsh, painful realities of the woefully underfunded research, the treatment effects and just how devastating and wide-spread this disease REALLY was. Rare? No. No, absolutley not.

So tell us. When did YOU become aware? Will you spread the word and help others learn the truth, too?

#katescause #untilchildhoodcancerisextinct #notrare #gogold #morethan4#childhoodcancerawarenessmonth

Childhood Cancer Awareness Month – Day 1

Today is September 1st and the first day of Childhood Cancer Awareness Month. I know that for many bereaved parents (those in treatment too) struggle with this month. Screaming, shouting, turning everything in our lives as gold as we can possibly make them…we feel frustrated at the lack of movement. The lack of awareness.

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Kate & Kylie

The post below is from Facebook one year ago today. I read it this morning after (again) waking up far too early with these beautiful children on my  mind. Mine included. But ironically, Kylie too.

It is once again the eve before Childhood Cancer Awareness Month and I could think of nothing better to write than what I’ve already said. So here it is again.

With love to all of the families I’ve “met” on this journey since this post was made. There are far, far too many and my heart is with you all.

Continue reading “Kate & Kylie”