I recently wrote this letter to briefly tell Mary's cancer battle and to try and gain support for the Target Pediatric AML Project. If you are ever curious about our story, why we fight and where the money we raise goes please read this letter. Currently we give 100% of all the $ we raise to this project because we earnestly believe it is the best research available for AML, one of the most underfunded childhood cancers. We also hope the research will benefit other childhood cancers as well. I will add a direct link to this project and you may also give directly to it if you feel as passionately about it as we do. I encourage you to watch the video in the link for yourself. Our United for a CURE fund has been able to give $350,000 and we will keep giving as long as we can, as long as we believe in this study and until there is a cure.
The spring of 2014 was like any other. We were on the beach enjoying Spring Break at our family's favorite spot on the Georgia coast. Mary Elizabeth, our oldest daughter and 11 at the time, wasn't feeling quite herself. She was not eating well, looked extremely thin and seemed to have no energy. During our Spring Break getaway, she complained of headaches and stomachaches, and even slept while out on the beach. Prior to our trip, I had taken Mary Elizabeth to the pediatrician on several occasions only to be told her symptoms were caused by allergies or her ADD medication. I knew something just wasn't right with her, and other family members concerns regarding her appearance and apparent decline in health reinforced my suspicions. My intuition, and other family members' concerns, prompted us to cut our vacation short and head back to have Mary Elizabeth further evaluated. We headed straight to children's urgent care center near our home to have her evaluated, including labs and
blood work. Initially, we were told that she may have Mono. The doctor who evaluated Mary Elizabeth felt confident that she did not have cancer as he knew this was our primary concern. I think it's always every parent's deepest concern when their child's health is in question and the reason isn't clear. The Mono test came back negative; however, the doctor told to us not to worry as she was more than likely at the tail end and probably on the rebound. I tried not to worry and truthfully was somewhat relieved with the diagnosis of Mono as this condition is temporary and her health would soon improve. It all kind of made sense or at least that's what I wanted to believe. Unfortunately, April 10, 2014 would be our last day living in happy ignorance before the horrific phrase "your child has CANCER" entered our lives and began its relentless torment forever. I miss those days of ignorant bliss before knowing about pic lines, chemo, radiation, biopsies, spinal taps, PICU, dressing changes, BMT's, and so much more. I wish our family didn't have know the horrific reality of childhood cancer. The next day, a nurse from the urgent care clinic called me to check on Mary Elizabeth. After I shared several continued concerns about her symptoms, additional lab tests were run on Mary Elizabeth's blood samples. A few hours later I received a call from an oncologist to immediately take Mary Elizabeth to the ER at our local children's hospital as they suspected our daughter had leukemia. Words I never fathomed I would hear. Literally, my worst nightmare had become reality. Truthfully, I had no idea the actual nightmare to come. In that instant, my world started spinning and I had to hold onto the wall just to stand upright. At that exact moment, my husband walked in the door from work. All he had to do was see the look on my face and he just knew. Everything from that moment on is one gigantic blur. We began the process of educating ourselves on the new world that we had been thrust into. My nature is to research and find answers so I did and learned all I could about leukemia even though we were advised not to. We soon learned we didn't have the most common form of childhood leukemia, ALL. We had the worst of the worst-Acute Myeloid Leukemia (AML). The information I gathered about AML was bleak at best. But our daughter was positive and strong. When we were in hysterical tears, including the doctor, trying to
explain to her that she had leukemia, Mary
Elizabeth told us very bravely that we needed to stop crying. She stated that she was going to be fine. She said she was the one with cancer and she was the only one allowed to cry. She was right. We had to suck it up and be strong for her. It was hard to stay strong. I did cry. A lot. I cried outside, into my pillow at night, in the hall or in the shower. I tried to keep my promise not to cry in front of my strong and beautiful fighter. She would sometimes ask me if she was going to die. I would tell her "No, we are going to do everything in our power to keep that from happening." And she would say, "Fine then, let's keep going. I'll do whatever it takes to beat this." And she did. I've never seen any human, male or female or adult fight like this child of God fought to live. She fought through multiple ICU visits, three BMT's, near paralysis, indescribable pain, GVHD, fungal infections, two lung bleeds, two intubations, surgeries, painful chemo burns over 90% of her body, affects of radiation treatments and so much more. Things only conceivable in nightmares, but sadly it was our reality. Things no one can imagine unless they unfortunately have to live it. As a mom, it was the worst thing you can imagine to have to witness. This includes agreeing to daily torture of your child, sleepless nights, living in the hospital, being physically separated from your other children and family, PTSD, insurmountable stress, and much much more. All the while having to function and think as a sane and normal person because your child depends on you to be there no matter what. You are doing everything in your power to ensure their daily survival. That is your sole purpose in life. The day before Mary Elizabeth passed she still was able to eat her favorite food at the time which was deviled eggs. She was weak and didn't want to speak to the doctors, but when they asked if she wanted to keep fighting and if she wanted to continue with cancer treatments she played them Rachel Platten's "Fight Song" from her iPhone. When she was on more pain medicine than I've ever seen a person take, very sedated and close to the end, I whispered into her ear that it was ok for her to go to Heaven to be with her friends. She told me "I can't". Those were her last words to me. She was a fighter. She never ever gave up! She still had work to do. Now Our family must continue with that unfinished work. We talked constantly about fundraisers and how we would work endlessly to end childhood
cancer if we were ever able to get out of the darn hospital. That's why we don't stop. Why we can't stop. That's why we work tirelessly to raise funds for research. Someone has to, and if those who are passionate don't do it no one else will. These innocent children have been neglected for far too long. In fact, forever. What I wish I knew about AML before Mary Elizabeth was diagnosed are many things. Mostly, I wish I had known that AML existed in my own back yard and that it isn't rare. I wish I had cared more and been involved in the fight. That is why we spread information to others so that Mary Elizabeth's life, and our family's continued struggles, aren't in vain. I believe people want and need to know the truth. I believe people want to make a difference. They just don't know how. This is why we chose to open up our lives to the public and let people see the truth and the horrific reality of childhood cancer. It needed to be seen. I wish I had known the facts, the honest facts. Let's be real, the stats you are told are complete BS. Looking back, I don't think we would have done anything different. Of course you always wonder and play the "what if game." It's a horrible game and everyone who plays it loses. Mary Elizabeth had very few treatment options. Her options were the same as those available 20, even 30, years ago. While there are still limited treatment options leading to a cure, we have hope in the research and projects on the horizon. We are excited about the possible break throughs that will come out of the Target Pediatric AML (TpAML) project currently underway. TpAML gives us hope, real hope for a future cure. I hope more people will also believe in TpAML, share available information on TpAML and donate to the TpAML project. It is time to make a difference. Do it for Mary Elizabeth and every child that didn't deserve to suffer, their life forever altered or cut short because we didn't do enough or care enough.
Thank you.
Mandi Paris
Mother of Mary Elizabeth Paris
Forever 12
2-5-03 9-2-15
Target Pediatric AML
united
for a CURE
