A Lifetime Lived in Three Years

Julia is one of those patients you know that you will remember for the rest of your life.  I met Julia in May of 2005 when she came to Children’s Hospital with a very swollen abdomen and a very frightening ultrasound study in hand.  We found that a massive tumor, a hepatoblastoma, had filled most of her liver and had spread to her lungs.  Amazingly, all of this happened with very few symptoms and so at the time her tumor was diagnosed, it was not possible to operate on her safely.  Despite very poor odds, Julia’s parents agreed that we should try the only option available to us, chemotherapy, to shrink the tumor.  We hoped that if we could shrink the tumor in the lungs completely, she could possibly undergo a liver transplant. 


When Julia was first admitted to the hospital, the tumor was so large, she could barely sit up.  Her appetite had vanished, and she was unable to walk on her own.  Needless to say, she was not a happy little girl, and she was not particularly thrilled with any of us.  However, as the chemotherapy began to work, and the tumor began to shrink, Julia began to return.  Her sense of humor began to show, and she started to laugh and smile again. 


Despite the long hospitalizations and unpleasant side effects, Julia’s stunning personality shone through.  It was a rare visit to her that didn’t leave me stripped of my pager, phone, stethoscope and hospital ID, all of which found their way into Julia’s hands.  There was simply no more charming site than watching her hold my pager to her ear, thinking that it was a cell phone, to “call her Daddy”.  By the time we got to the third cycle of chemotherapy, Julia was an old pro.  She would help her nurse Amanda to flush her port, she invented a song about her feeding tube, and ultimately honed her medical skills enough to wield the syringe shown in the picture above.  With every passing day, this beautiful little girl worked her way deeper and deeper into my heart.


Julia received four cycles of treatment and while the tumor initially shrunk in response to the chemotherapy, ultimately it started to grow again.  When we realized that we were not going to be able to cure her disease, her parents chose to make the remainder of her time as special as possible.  Without a doubt, Julia’s Make-a-Wish trip to Disneyworld was one of the highlights of her life.  In her last few weeks, those who were around her would delight in watching her light up when the video of her trip was played, and hearing her laugh aloud to her videotaped adventures - a laughter that was music to our ears.  Julia’s death, almost six months to the day after diagnosis, was a stunning reminder of how cruel and capricious childhood cancer can be.  Despite all of our successes, we still have a great deal to learn about these diseases, and a long way to go in designing new and effective treatments.


Today, it is possible to look past the pain of her loss and fully appreciate the gift of her life.  Knowing this amazing little girl and her equally incredible parents made me a better doctor and a better person, especially when I had the privilege to witness her parents caring for Julia at home for the last months of her life.   Their generosity and compassion for other parents has prompted them to establish a foundation in Julia’s memory to provide financial support for other families who are battling this terrible disease.


Please click here to make a donation today in honor of Julia and her remarkable life. 

 

Julia E.

A Message from Julia’s Parents

As strange as it may seem, we now feel that the most rewarding time of Julia’s development has been the six months during her treatment.  Like a wildflower growing in the harshest desert climate, Julia continued to develop and thrive notwithstanding the physical toll inflicted by her disease and toxic chemotherapy.  While her treatment was ultimately unsuccessful, it gave us the opportunity to enjoy many more precious moments with Julia.  We got to see Julia’s language develop to the point where she began speaking in sentences and asking “why?”.  We are amazed at how much Julia matured in the last six months of her life given all that she went through.  Even more amazing was Julia’s ability to cope and adapt to her illness and all of the unpleasant aspects of her treatment.  The first few weeks after her diagnosis were very difficult.  Julia would cry anytime someone entered her hospital room.  She became extremely agitated even during simple interactions, such as a nurse taking her temperature or blood pressure.  However, over time Julia grew to accept the routine of a cancer patient - the vital signs, the feeding tubes, the frequent blood draws and the daily injections in her thigh to boost her white blood count.  By the end of her treatment, she was very cooperative and actively participated in her care.  Words such as “tubie,” “ouwie” and “special juice” became part of her vocabulary.  She even made up her own song when her NG tube came out of her nose.  We all know that cancer is a terrible illness that can happen to anyone at anytime.  But there is nothing more unfair in this world than when a child is stricken by cancer.  The grace and dignity with which Julia handled her treatment should be an example to us all.  She put up the fight of her life and her spirit was never broken.  Just two days before she passed, Julia woke up and played with her stuffed animals and birthday balloons and asked to watch our home video from Disney World.  She gathered the strength to talk to us and give us kisses.  Julia was determined to enjoy her life to the very end. 


We had so many hopes and dreams for our little Julia.  While we are heartbroken to know that those hopes and dreams will remain unfulfilled, the memories that we made with Julia will always be with us.  We will always treasure these last three years as the most fulfilling and happy years of our life.  We would rather have three years of something wonderful than a lifetime of nothing special.