to mutate, adapt, and grow. Then every child responds differently to the disease, as well as to the various treatments. Emilie had radiation at St. Jude in Memphis, immunotherapy at Benioff Children’s in San Francisco, then more radiation in Shreveport, followed by immunotherapy at Texas Children’s in Houston before her fight came to an end. Throughout most of the journey, most people could not tell she was even sick because outside of a lazy eye and a drooping mouth, she functioned like every other normal kid. She went to school In a most serious and grounded when she could manner, she asked me, “Don’t you and kept up with just wish this was all a dream?” swim practice. Because of her seemingly normal demeanor, some of her schoolmates about how that one lucky kid magically responded to treatment against all odds. had a hard time understanding that she was even sick, but they didn’t see I hoped that Emilie would be the one. The crazy thing about our story is the in between times when her life was that there weren’t many signs pointing anything but normal. We were lucky toward cancer. All I knew is that my in that the immunotherapy available daughter started having headaches, had very little side effects, but even which we called the doctor about, so, Emilie’s daily routine was often but they were attributed to possible uprooted with a nomadic quality of traveling back and forth from hospital dehydration. It wasn’t until she to hospital hundreds of miles away. complained about having headaches One incident far from home with flip turns at swim practice that regarding an expired vaccine set us on we decided this problem needed to be edge wondering if Emilie was going to addressed because Emilie had found her receive the treatment when she needed passion, and we weren’t going to let that it or if we were going to have to wait love for swimming go to the wayside until a new batch came in. Our room over headaches. When we saw the doctor had a large window that looked out over and she pointed out Emilie’s lopsided San Francisco. I can remember my chin smile, I was dumbfounded. I suppose I on her shoulder and my arms wrapped was so close to her all of the time that I around her while she was kneeling didn’t even notice what was right there backwards in her chair, looking out over in front of me, nor did I even begin to the city. In a most serious and grounded comprehend the fight ahead. Cancer manner, she asked me, “Don’t you just in general is difficult to understand. wish this was all a dream?” Oh how Not only does it have so many different I wished with all of my heart that all mutations that can affect so many parts of the blood draws, long, drawn-out of the body, but cancers such as DIPG shots, midnight ER runs, surgeries, adjust to treatment and find other ways year after diagnosis. Unlike my husband, who soaked up every bit of information he could, I could not look too far outside of our family bubble. The cancer community has a mantra: Minute by minute. I had to take life minute by minute -- make sure she went to her appointments, took her medication, and received the rest that she needed. Always, like most cancer parents, I hoped that the next treatment would be the miraculous answer we needed. We heard so many stories
steroid side effects -- rage, constant hunger, sleepless nights, lost energy -- and that horrific tumor that never stopped completely growing -- that all of it had been a nightmare that our whole family could have woken up from at that very moment. Unfortunately, it was a harsh reality that smacked us in the face every single day, and all we could do was put one foot in front of the other. Emilie definitely did that, and when she could spontaneously sing and dance while facing the hard truth in front of her, she did. In her last few weeks, she would often say, “Mom, you know what is stuck in my head?” and I would answer, “Let me guess, a song of some sort?” and she would break out singing the chorus to “Fight Song,” or something from Moana. She had an endless playlist in her head that changed with her mood, but reflected an amazingly strong outlook regardless of the fact that her body began to shut down. It wasn’t until the summer of 2017 that her balance began to waiver, and by the end of the summer, she was using a walker. DIPG attacks the computer center of the brain, shutting down all gross and fine motor skills. The child eventually becomes bedridden, where the parent has to bathe, feed, and change the child because she can no longer do for herself. We were lucky that the last stage only lasted a couple of weeks, and thankfully, we believe Emilie did
November-December 2018 | LOLA MAGAZINE | Page 93