Lily's Garden - Weeding Out Childhood Cancer

Home
Lily's Story
Lily's Book
Lily's Garden Endowment
$1,000,000 Goal
How You Can Help
Information about ALL
Photos

Lily's Story

Lily's symptoms began in mid-November 2008 when Lily was seven years old and in second grade.  The most severe symptom was intermittent back and leg pains.  She described the pain as feeling like her back was broken. Over the course of two weeks she saw her pediatrician and had two emergency room visits.  Each time the diagnosis was either a bladder/kidney infection or a pulled muscle.  She was given antibiotics.  The pediatrician and the emergency room doctors initially dismissed her pain as a pulled muscle from gymnastics. At one point they thought she might have a kidney stone, and a CT scan was done to rule that out.  The emergency room doctor told the family that they had "ruled out the bad stuff."  Though she had many tests and saw several doctors,up until December 1st, no blood tests were done.  In addition to the pain, she also grew quite pale and was fatigued easily.

On the Monday after Thanksgiving, December 1st, when the pain didn't abate and she started running a fever, their pediatrician had them come in.  Concerned by Lily's continued symptoms of fatigue, fever, pale skin, dark circles under eyes, and pain, they decided to do a blood test.
 
When the doctor looked at the results, she sent the nurse to play with Lily so that her mom could come to a private room to talk with the doctor.  She said she was 90% certain Lily had leukemia, and for them to take her immediately to Vanderbilt Children's Hospital.  Later that night, December 1, 2008, the definitive diagnosis was given.  Lily had leukemia - Pre-B acute lymphocytic leukemia.
 
The next day Lily began chemotherapy.  She had a port-a-cath surgically inserted in her chest to make it easier for her to have blood withdrawn for testing, and to receive IV injections and chemo.  She missed the rest of second grade and the first half of third grade, lost all her hair, and endured over two years of daily chemo and finally took her last chemo pill on February 21, 2011. 
 
The first year after ending treatment, she went to clinic each month for blood tests.  The second year she went every two months. The third year every 3 months.  Then twice a year.  After five years, she was to attend survivors' clinic once a year for the rest of her life. However, at five years, 7 months and 6 days, the leukemia came back.  On September 26, 2016, she began treatment for relapsed leukemia.