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Guest Post: Until Childhood Cancer is Extinct

Kate Olivia Rhoades was a sweet and clever little bird who I never had the honor of meeting but we loved regardless of distance.  She was diagnosed with leukemia when she was 26 months old.  And when Kate died, we mourned for the little girl whose smiled cracked the world right open.  Since Kate’s death, I’ve watched my friend Lindsay advocate through the pain of losing her child, determined to make a difference for kids diagnosed with cancer.  Today, Kate’s beautiful mom is visiting SixUntilMe to share the story of Kate, her cause, and how we can step outside of our diabetes bubble for a few minutes to make a difference in other places.

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I am so grateful to my friend Kerri for inviting me to share my story on Six Until Me. While not my first guest post here, it has been quite a while and quite a lot has changed for me since I last wrote.

Like Kerri and like many of you, I myself am a type 1 diabetic and I blogged several years ago about the struggles and joys of achieving “optimal pregnancy wellness” to carry a baby safely and to term while dealing with the pesky and high-risk nature of a diabetic pregnancy. I’m proud to say I (ok, WE) were successful and a safe baby was had.

But. My story doesn’t end there and diabetes is not the only disease that would invade my home or my family. Because after having that healthy, perfect baby (girl!) just about six years ago, cancer came calling. Childhood cancer, to be exact. Like a thief in the night, childhood cancer invaded our worlds by taking over the body of my 26 month old precious Kate Olivia.

When Kate was diagnosed with leukemia in 2013, my eyes were opened to the harsh realities of pediatric cancer, the severe lack of government funding and the overwhelming mis-informed public. Childhood cancer is NOT rare and our children were being diagnosed and dying at an overwhelmingly alarming rate. Nor is childhood cancer cute bald kids celebrating at Disney World with celebrities like Jennifer Aniston and Drew Barrymore cheering them on from the sidelines. No. Childhood cancer was nothing at all like it was pictured in the St. Jude’s commercials or the Light the Night ads. Childhood cancer was my two year old learning how to say “chemo” properly instead of “juice box.” Childhood cancer was my baby vomiting from the toxic poisons we pumped in her blood to save her before she’d even gotten her first cold. Childhood cancer was fever-watches, missed play dates, canceled holidays, fear, more sedations in her two years of treatment than most people will get in a lifetime and WEEKLY chemo for two years.

And then … once again like a thief in the night, cancer came calling again when my daughter DIED from a relapse of her cancer four months after completing treatment and just 15 hours after we learned it was back. My eyes were opened once more … this time to a purpose and a calling that we, her family must fulfill.

Kerri asked me here today to share my story and to raise awareness about childhood cancer … and to represent our smart, clever, funny, beautiful and forever four year old Kate Olivia Rhoades, our sweet girl who had a highly treatable type of cancer yet died anyway. I am writing to you all today to represent the countless number of her friends currently in treatment and who have also died because our government, our society, and our leaders don’t find them worthy of better, less toxic treatments. I “go gold” and raise awareness in the month of September, officially recognized as Childhood Cancer Awareness Month, to represent the countless children worldwide, but right here in our very own back yard, who are dealing with adult strength chemotherapy, life-threatening side effects that can last decades after treatment is done and the toll it takes on their precious young lives and futures.

Childhood cancer is NOT rare and it’s NOT fair. It is the number one disease killer among children and one in five children diagnosed will not survive. And mostly…I am writing today to plead with you to learn more about the countless types and varieties of cancer that make up childhood cancer and learn more about itswoefully underfunded past. And then? Get involved … help us raise awareness. Help us make noise so that we can be that change we wish to see in this world to re-direct its future.

Because our children deserve our best, not our leftovers.

Until Childhood Cancer is Extinct.

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Kate’s Cause lives here.  And Kate lives forever in the hearts of those who love her.  September is over but the need to raise awareness and change the future for kids with cancer is a life-long pursuit.

5 Comments Post a comment
  1. Katie S. #

    I am so sorry for your loss. She’s such a beautiful little girl. You’re right that in our daily struggle against diabetes, we often forget that there are other things out there that can wreak havoc.

    10/2/17; 11:16 am
  2. Natalie Sera #

    Cancer sucks big time. And you’re right — chemo used in adults might not be appropriate for tiny ones. We’re in a tough period right now with a federal leadership which doesn’t want to spend money for health research but fritters it away on ineffective projects and unnecessary tax cuts. But please keep up with your task — it’s important.

    From Natalie, who was treated for breast cancer this year.

    10/2/17; 12:20 pm
  3. Louise #

    Beautiful little kids with cancer, like Kate, as well as adults suffering with cancer, are what make me thankful every day to have type 1 diabetes – a disease with treatment options that, while certainly not perfect, give me a decent quality of life. On days where I feel like diabetes burnout is creeping in, I never let myself look at a perfectly healthy person and think “life’s not fair.” Instead I let stories like Kate’s remind me of how precious life is, and how lucky I am. I’m a scientist, and while I knew I could devote myself to type 1 diabetes research, I chose to go into the field of cancer immunotherapy research because cancer patients young and old need a cure more urgently than I do. I hope my research can make a difference some day!

    10/2/17; 5:46 pm
  4. Susan #

    Lindsay – thank you for sharing Kate’s story. Sadly I can relate all too well. I’m a a fellow type 1 who’s son was diagnosed with brain cancer at 27 months of age. He is almost two years post treatment but as you know, cancer never really goes away or leaves your family. We live each day on tenterhooks, grateful for the ones we’ve shared together and hopeful for many more. Much love and strength to you x

    10/2/17; 8:35 pm
  5. Debbe #

    Hi Lindsay…Kerri’s Mom here. I have heard about your Kate since she was little. Kerri talked about you and Kate all the time. She spoke to me the day Kate became an angel which was a very tearful conversation. All mother’s can relate to you and even if we did not meet you or Kate….we shared your grief. Along with supporting JDRF, childhood cancer will be supported as well. Heartfelt hugs to you and your husband. ❤️

    10/3/17; 6:07 pm

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