Lilli's Story: Dum Spiro, Spero

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Kristin Trippe

On the Eve of Christmas Eve, Lilli danced in the aisles of the Nutcracker, twirling as fast as she could, standing on her tippy toes, just like the Sugar Plum Fairy. Dirty looks from hoity-toity ballet patrons flew in our direction for the entire second act. But I didn’t care. Tears ran down my cheeks, joyful, thankful tears, remembering where we had been a year ago.  How lucky we were to be here.

Two days later, Lilli’s leukemia returned. Even if we had been home in our pajamas, enjoying the yuletide, it wasn’t the present we wanted to unwrap. Over a year had passed since Lilli’s stem cell transplant and I had just sent an anonymous letter thanking her anonymous donor for the fourteen billion cells that saved Lilli’s life. For a year, she received nothing but glowing physicals and perfect blood counts. For a year, everything was perfect. And then, for the second time in her short life, everything changed.

Lilli was first diagnosed with a rare cancer before she could walk, talk, or chew. At eight months old, her cancer came suddenly and with a terrible prognosis. Babies aren’t supposed to get cancer. She didn’t smoke or drink or use a cell phone. She didn’t get formula from China or eat too much tuna. All of her sippy cups were BPA-free and her baby food came certified organic. Unlike older children that are diagnosed with leukemia, infants do not respond well to traditional therapies and often relapse after treatment. Our best hope, our only hope, was a bone marrow transplant. After Lilli survived her transplant, we thought that we had won the battle, that she was the small percent that survived the transplant, that didn’t relapse, that didn’t die. We were wrong.

On Christmas Day, we left the hospital, we ate Chinese food, we went home and pretended that we didn’t know Lilli’s prognosis. We didn’t talk of things like second transplants or chemotherapy. We just pretended that Christmas was the next day, and went to sleep. Christmas Redux was one of the most beautiful days I remember. Lilli opened her play kitchen with all the pretend pizza and pans and plastic fruit, walked around it several times and smiled a smile as bright as the sun. She didn’t have to share it with her friends at the hospital, we didn’t have to visit the toy store to play with one, I never had to tell her it was time to put it away. It was her most prized possession and the look upon her face in that moment, the one that said “I OWN that” is a look I will never forget.

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Lilli’s leukemia wasn’t normal, and her relapse was even stranger. Instead of showing up in her blood, her leukemia showed up as little tumors in her belly. Little lymph tumors that blocked her intestines, that blocked her urethra, that blocked her bladder. There was no road map for treatment. So we guessed and went for the most aggressive treatment we could think of, another bone marrow transplant, from a different anonymous donor. Lilli’s Hickman line, the tube that came out of her chest to administer her chemo, had been removed eight months prior. To start treatment she needed a port, a direct and semi-permanent line into her circulatory system. A simple, easy, quick procedure that happens several times a week. But nothing was simple, easy, or quick for Lil.

Medical mistakes happen all the time. The wrong medicine is given, the wrong leg cut off, bad judgments made in times of stress. For Lilli, when they placed her port, they missed and put a hole in her heart and lung. She died on the operating table. See, cancer was just the big thing that Lilli had to face. The small things, the sedations, the medications, the steroid fits, the effects of all these things, were just the shrapnel that flew from the bomb that went off. This particular piece of shrapnel killed her. For at least a few minutes. And then by some miracle, she came back. Her heart started to beat, her lungs began to rose and fall with breath. Two weeks later, she died again after a massive infection invaded her lungs. Again, she returned to us. Four months later, we were discharged from the hospital. Lilli had to relearn to walk, to eat, to talk, to throw a ball, to dance. To recover from the shrapnel before the bomb went off again.

Finally, after all this time, Lilli figured out that she was sick. That other kids didn’t have to cart around oxygen tanks or have feeding tubes in their noses. But, like her kitchen, she owned her cancer and would happily explain to other children that this is my picc line, this is my nose tubey.  One day, another child asked her what had happened.  With a straight face Lilli said “Well, one day I ate a chicken nugget and I got sick”. I’m not sure why she said it, but I bet that poor kid hasn’t eaten another chicken nugget since.

The next year was filled with moments of pure beauty interrupted by treatment, transplant, another relapse, and finally, a terminal diagnosis. But through all of it, Lilli remained a child. She played her little purple guitar and her mandolin, she went on walks every day and picked up snakes and bugs and tried to give all the salamanders baths. She picked up rocks and put them in our pockets. She wore elaborate costumes to her radiation appointments. She danced and danced and danced and sang her own song. And we were so incredibly proud of her.

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Despite all the treatments, all the second opinions, Lilli’s cancer didn’t respond to treatment. We had several glorious moments where tumors receded. And several others with news that crushed our spirits. That made me vomit. I wore a charm around my neck that read “Hope for Lilli” and another inscribed “Dum spiro, spero”,  in English meaning “While I breathe, I hope.” And even though the doctors said there was no chance for survival, we never thought she would die. Life without her seemed impossible. But again, we were wrong.

It wasn’t tragic that Lilli died or even that she had cancer. The tragedy was in the lack of treatment, the lack of options. That she was too young, or too small to qualify for experimental drugs. That there weren’t any experiments to experiment with.

Lilli died the morning of July 5, six days before her fourth birthday. Just hours before she left we heard the fireworks from the city below. We pretended that the fireworks were for her. She kissed me and she kissed her dad, and she told us she loved us. We sang her favorite songs. Three hours later she took her last breath. She wore her shirt that said “And though she be but little…she is fierce.” It was heartbreaking. We miss our Sugar Plum Fairy in the deepest most profound way.

But her spirit lives on. Her legacy grows. Her hope remains. Love lives forever.

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The Chelsea Hicks Foundation sponsors a program that provides costumes and opportunities for children to play dress up during clinic appointments and during hospital stays. Lilli loved to play dress up and have tea parties.  You can donate here.

If you're looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

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