Kate’s Story

How to put her life into words…her joy…her love. To write her life’s story in a page…it’s just not right. It should have been a novel.

Kate was born on June 5, 2011 at 4:04am after labor set in quickly and early. She weighed 7 pounds, 4 ounces and was 19 1/4 inches long. She had a head full of dark hair and was as sweet and content as any baby could be. Katie was our one and only and the only local grandchild for four doting grandparents. She spent her early days enjoying time with her Grandma, visiting the local library for story time, JW Tumbles for play classes and play dates with her friends. She loved swimming & splashing in her pool, the farm and swings, and her enthusiasm for books was something to behold. There was almost never a time when she wasn’t up for a snuggle and a story.

Just after she turned two, she started bruising in odd places. Kate was adventurous, but certainly not to the extent that she should be bruising as much as she was. It didn’t take long for us to suspect something was wrong. We took her to her pediatrician for some simple bloodwork, thinking maybe she had anemia. The very next day, on August 15th, 2013, she was diagnosed with high risk Pre-B-Cell Acute Lymphoblastic Leukemia at 26 months old.

The first 9 months of treatment were brutal for her sweet little self. Kate was on-study with her treatment protocol through Dana Farber Cancer Institute. Her plan involved 9 months of high doses of steroids, weekly chemo(s), regular spinal taps, a study drug and countless tests. The steroids were terribly rough on her, and she struggled with side effects caused by Vincristine and appetite issues from Oncaspar. After the 9 months passed, she went into 17 months of maintenance therapy.

It was supposed to get easier, but really, I think we just got more used to it.

Despite the weekly (!) doctor visits, countless pokes and chemo, Kate was amazing. She was so brave and so strong, and while she never got used to it, as many told us she would, we appreciated her fighting spirit. She screamed just as loud with her last chest pokie as she did with her first.

Even at such a young age, she knew there was something wrong with this picture – kids shouldn’t have to do this! – and man, was she right!

In the following years of her life, Kate blossomed into the funniest, smartest, most precocious child. She made people laugh daily with her clever chatter and “Kate-isms.” She had a truly tender-hearted nature about her. She loved animals and her family and she was inherently aware when someone was sad or not feeling well. She wanted to be a nurse or a veterinarian when she grew up and practiced daily. She played with toys more than any kid we’ve ever known, and she had a memory as keen as they come. She loved to make up games, play pretend and boss us around. Kate was known for her knowledge of dinosaurs at the tender age of two and a half. She could tell you their names; correct you on the pronunciation; and tell you whether they were herbivores, omnivores, or carnivores. She absolutely loved her dinosaurs and that love lasted most of her life. Ask anyone who knew her and they’d tell you of her love of her little (okay, huge) collection of collectibles – Shopkins, My Little Ponies, Littlest Pet Shop – all “guys” as she called them. She also had a big collection of stuffies and spent a lot of time carefully selecting who would be the “guy” of the week (or day) and be the one she’d cart around to and fro. However, none was loved like Lovey Bear, her constant companion and best friend.

To know Kate is to know these three things: dinosaurs, her “guys” and Lovey.

After 25 months of treatment with very few complications and zero chemo delays, Kate had her last dose of IM Methotrexate on September 14, 2015. She had just started school for the very first time and was making her own friends and spreading her wings of independence. She absolutely LOVED her school and teachers and watching her live a normal life like all of her friends gave us nothing but hope. Kate had the most glorious time after treatment ended. We took our first trip to the beach. We took her Make-A-Wish trip to Disney World and spent our very first real family vacation together in the happiest place on earth. We celebrated the holidays – Halloween, Thanksgiving and Christmas. Life was so, so good. We felt so fortunate and while we knew we’d always look over our shoulder and furrow our brow with every fever, we never had any thought to worry. Her monthly post-treatment bloodwork remained normal. “Great,” even. There was never a blip on our radar. There was never any indication that she wasn’t going to leave cancer swirling in the dust, in the rear-view mirror of a long and happy life.

And then she relapsed on January 11, 2016.

Just 15 hours after we learned the leukemia she beat 4 months earlier was back, she died in the PICU from sepsis and multiple organ failure in the early morning hours of January 12, 2016. She was four years, seven months and seven days old. The relapsed leukemia had completely taken over her little body. She never even had a chance to try to beat it again.

Kate’s cancer has a reputation for being the “good cancer”…the most treatable and with the best prognosis. With an overall 5-year survival rate of 90%, we expected her to be okay. We only later learned that the 90% is just the survival rate for five years…not a lifetime. Kate didn’t get a lifetime and the only way we can live each day is to push for more awareness. To push for more funding. To push for a cure. Kate’s life and spirit will never be forgotten by those who love her, and Kate’s Cause will work to ensure that her name and her legacy will never be forgotten by anyone.

Kate deserved more than FOUR months off treatment. She deserved more than FOUR years of age. And she deserved more than FOUR percent of the federally-funded National Cancer Institute’s annual budget for research for childhood cancers.

With you in our hearts, Kit Kat.

We love you. We miss you. Best friends forever. We promise.