This is Lily's Story from a her mother's perspective. This is why we Run 4 Lily!
Lily is 5 years old and is my husband, Lee, and I’s only child. Up until her third birthday Lily lead a pretty normal life. She went to daycare at our church, in Oxford, Mississippi where we live, and was a very happy and social child. Just weeks after she turned 3 she developed strep throat which oddly would not go away with antibiotics. Days later she developed a fever that climbed to 105 degrees and was throwing up everything that she ate. We took her to the ER, they said that she probably just had an ear infection and sent us home with antibiotics. The next day she was unable to keep the medicine down, threw up multiple times, looked as pale as a ghost and started going in and out of consciousness. We took her back to the ER, this time they did blood work and all that we were told was that her levels were extremely low and that she needed to be transferred to LeBohner, the children’s hospital in Memphis. Upon arrival to LeBonheur’s ER Lily was immediately given multiple blood transfusions. My husband and I were so confused and utterly terrified. We were not told much besides “there are abnormalities in Lily’s blood counts” and that a hematologist at St. Jude was being consulted. An ambulance then picked lily up from Lebonher and took her to St. Jude. As I rode with her in the back of the ambulance, the paramedic looked at me and said “I am so sorry, I can’t even imagine”. Right then I knew that something was horribly wrong. We were taken up an elevator at St. Jude and when the doors opened on the 4th floor I saw a sign that said “Leukemia unit”. My head was spinning and I thought that this had to be a mistake. The next day, March 14th 2017, Lily had a bone marrow biopsy that confirmed our worst fear. Lily has Leukemia. We were told that although Lily’s specific type of Leukemia, B-cell ALL, had the highest cure rate, it required the longest duration of treatment. Two years and seven months. The pain and hopelessness that we felt in that moment is indescribable. Lily was also in pain. Every needle poke, every doctor, not being able to go home.....she was scared and did not understand. Within days she had surgery to insert a port on the upper left side of her chest to be used to transfuse chemotherapy for the duration of her treatment. On Lily’s first scheduled day of chemotherapy, March 23rd 2017, something else went terribly wrong. As we sat in a waiting room at St. Jude (coincidentally the same waiting room that Lily and I are sitting in right now as I type this) I started experiencing intense labor contractions. I was 22 weeks pregnant with Lily’s twin brother and sister, Emil and Ella. I went to the restroom, felt water rush out of me and literally screamed out loud “Please, God, please, no!”. I had to leave Lily with her Grandmother as she received her first dose of IV chemotherapy as my husband and I rushed to the women’s hospital. We lost our twins that day. I wanted to die. Lily’s diagnosis followed by the loss of the twins left me in the darkest most painful place that I have ever been in my life. But there was no time to grieve, no time to cry, we had to be the strong and positive parents that Lily needed us to be during this frightening time. Especially because things were not done getting worse. About two weeks into treatment we noticed that Lily’s left leg was swollen and a purplish color. Her Oncologist ordered an ultrasound of the leg. Even though an ultrasound is a pretty benign procedure, Lily was beside herself terrified. She had to be held down and was screaming “please get off of me, please get off of me, why are you doing this to me, please stop!” and crying so hard that I thought she couldn’t breath. I couldn’t take any more. I remember pleading with God “If you are going to take her, just take her now, make this suffering end”. The ultrasound revealed a massive blood clot that extended from her left groin all the way to her foot. This clot formed as a side effect of one of the chemotherapy drugs. Lily was taken to surgery, an interventional radiologist ran a catheter into the large vein of her left leg and ordered continuous TPA (a very strong blood thinner/clot buster that can easily cause bleeding anywhere) to be run through the catheter for 5 days. Because she was 3 years old and there was no way that she could hold her leg still for 5 days she had to be paralyzed and put into a medically induced coma. Like everything else, this was terrifying. She was on a breathing machine, and all of her nutrition and medicines were given through an IV. I found a radio and played classical music next to her bed hoping that it somehow gave her comfort then quietly fell apart in the adjoining parents room. 5 long days passed then, Praise God, the treatment worked, Lily’s leg was saved and she was woken up. She was too weak to speak but just looked up at us and smiled. Once she was stable enough to leave the hospital we spent about a month at the Ronald McDonald House. We had to visit the hospital daily for chemotherapy and Physical therapy. The muscles in Lily’s left leg had gotten so weak from being paralyzed that she could not flatten her foot or walk on it. She literally had to learn to walk again. It was tough, but this kid was tougher. Nearly 3 months after her diagnosis we were finally allowed to go home to Oxford, Mississippi. This marked the beginning of 120 weeks of outpatient treatment. This consists of daily oral chemotherapy, antibiotics, anti nausea medicine, pain medicine and twice a day shots in her belly to prevent another blood clot. Then once a week, on Thursdays, we spend the day at St. Jude for Lily to get her port accessed, labs drawn, to visit with her oncologist, get IV chemotherapy, then have her port de-accessed. Her life pretty much revolves around medicines and St Jude visits. What has been hardest for Lily is the isolation. She is such a people lover. The chemotherapy keeps her immune system low and unable to fight off any kind of illness so she was no longer allowed to go to day care with her friends. She has spent nearly every day of the last two years in our house with a nanny or her grandmother. Her weekly blood counts dictate what she can or cannot do the following week. If her counts are too low, she has to be isolated in the house with little to no visitors, if they’re kind of ok then she can go out to public places but with a mask, when her counts are high- we live it up. We can go to public places and be around people but just have to watch out for anyone that looks sick.
I know how hard this must be to read, trust me I am having a hard time even writing and re-living it all, but I want you to know that today, we just finished week 96 of 120, and can count more blessings that have come from Lily having Leukemia than hardships. Lily, over the last two years has grown so beautifully mature and strong in Christ that it humbles me. She has a heart to give, love, and praise and starts and ends each day with a smile on her face. And In all honesty, she is helping me survive her cancer. All the way up to about week 75 Lily tolerated her treatment very well. We had a few fevers with unplanned trips to St. Jude for IV antibiotics but over all I believed with all of my heart that Lily was going to survive and that God was not going to take my baby. I thought it would be smooth sailing to week 120. Then just over 3 months ago, Lily got sick. Real sick. She got a rash on her leg that turned out to be the shingles virus. That virus quickly spread to her spinal cord and then her brain. She experienced encephalopathy (brain swelling) and high fevers. She became confused and combative and the antiviral medicine was not working. So, we went from smooth sailing to “she’s about to die” in a matter of days. Long story short, we spent most of the month of December in the hospital fearing that this was the end but once again God took care of Lily and she pulled through. Her infectious disease doctor later admitted to us “I wish that I could take credit for Lily surviving this but I can’t”. Lily, as usual, has completely bounced back and is as happy as can be. I, however no longer have that “we’ve got this” feeling and have had to come to terms with the fact that God can take my child whenever he wants and that this cancer rollercoaster isn’t over till it’s really over. October 10th 2019 is Lily’s week 120 and she will receive her very last dose of chemotherapy EVER on that day. It will be over and I will be able to breathe again. St. Jude will throw her a “no mo chemo” party that day and she will walk out those doors, no longer a patient, but a survivor!
Together, our team wants to do more than run. We want to work to support the live-saving mission of St. Jude Children's Research Hospital.
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