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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.

In the KNOW … Foods.

I was asked to review a box of KNOW foods, and I did that.  Forced to try waffles and muffins?  Twist my damn arm.

Actually, I didn’t do it alone, as the review process became a neighborhood taste-testing party.  We made a chart.  It was a thing.  Check out the review over at A Sweet Life!

The One About the Stupid Pumpkins: A Photo Essay

(And if you want to make your own fabric pumpkins and then get your own tetanus shot, here’s the blog post with directions.)

Creature of Travel Habits.

In going through receipts to submit for work travel last week, I realized I had one or two for the exact same order:  iced coffee and a banana.

Maybe more than one or two.

I’m sensing a theme.

Turns out this traveler with diabetes defaults on the regular to the same snack.

Which is fine because repeat snacks have predictable effects (one super yellow banana seems to hit me as the 10 carbs, which means that it’s a unit of insulin to cover it, and the coffee doesn’t seem to require any insulin these days) and I like predictable travel snacks because my blood sugar response to the stress of airplane travel can be decidedly unpredictable so bananas are awesome and AND HEY WAIT OMG I CAN WIN A BANANA COSTUME?!!!!!

Do you find yourself eating the same sorts of things in order to attempt to predict blood sugar response?  Also, do you like dancing bananas?  I DO.

GTFO.

“Normally, I can roll with the punches. But today diabetes caused me to miss a conference call because I was sitting in a parking lot for a full hour waiting for my blood sugar to come up. Dizziness and the unwelcome low-crying jags dominated while I tried to entertain my son as he sat in the car wondering why we weren’t going anywhere and why mom kept saying, “It’s okay, it’s okay” somewhat to him but mostly to herself. Diabetes can GTFO today.”  @sixuntilme

A week or two ago, my endo suggested I move my active insulin time from 3 hours to 2 hours to help with some stubborn highs.  I forgot to implement his change for a few days, but remembered last week to update my pump.

“You might notice that you’re going low.  If that happens, change it back to 3 hours.  Just be careful,” he said.

I promised to pay close attention.  I meant to.

But the lows hit hard and fast and my brain immediately went empty.  It took me three full days of severe hypoglycemic episodes before I realized that I was low constantly.  Honestly, it was the brain fog of all those lows that kept me from changing my active insulin time back.  It wasn’t until a friend suggested I look at that number that my low-addled brain let some logic leak through; “Hey … Kerri.  Stop being low for five seconds and update that active insulin time.  Do it right now.  Or else you’ll consume your own weight in raisins and juice boxes.”

Yes, brain.  Will do, brain.

Changing that number (from 2 hours back to 3 hours, but I ultimately ended up going to 3.5 hours because the lows were persistent) helped so much, but experiencing so many back-to-back extended low blood sugars knocked me for a total loop that took several days to recover.  I’m older and more worn out than I was a few years ago (thank you, natural aging process and also hey there, new little baby person), making the hangover from hypoglycemia more pronounced these days.  So much so that I wasn’t good at processing normal thoughts, like, “Hey, when did the baby last eat?” and “Hmmm, what was I going to write in this open email draft?”

But after a solid day without a low blood sugar, my brain reclaimed “active” status.  And I’m no longer leaving post it notes stuck to the cupboard that say, “Pants:  Put some on.”  Clearly my brain is not any good without proper sugar content on board.

I have a new respect for low blood sugars and their ability to sneak up on me and tie my mental shoelaces together.

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