Family Creates Non-Profit Organization Project Maisie Hugs
By Laniesa (Maisie’s Mom)
Maisie was a normal, healthy little girl until she was almost three-years-old. In June 2009, Maisie started to vomit, occasionally. Then, she began complaining of headaches. She was only two-years-old, so I never really thought much of it. The turning point was when she started having problems walking. Her right foot would turn inward and she would lie down and cry, saying her leg didn’t work. I thought she just wanted me to carry her, so I was never too concerned.
One evening she was dancing and her foot turned in. She grabbed her head and screamed in pain. I will never forget that gut wrenching feeling that something was wrong, really wrong. I took Maisie to the emergency room the next afternoon. The doctor ordered tests. When she was done with the tests, I could feel the uneasiness in the room. The nurses were moving quickly and they all had such a sad look on their face. The doctor came in and said to me, “I’m sorry to tell you, but you’re daughter has a mass in her brain.” I didn’t have much time to think. They loaded her in a helicopter and she was off to a children’s hospital. Maisie had her first brain surgery three days later.
A couple weeks after surgery, we went to St. Jude’s Children’s Research Hospital where Dr. Amar Gajjar first introduced me to the CERN Foundation. Maisie had four rounds of chemotherapy and took it like a champ. If she got sick, she just cleaned herself up and continued doing whatever she was doing before it happened. After she completed her chemotherapy, she had another brain surgery to remove the remaining 20% of her tumor. Then we moved to Jacksonville, Florida to do proton radiation. She was sedated every single weekday for her radiation treatments. On the weekends, we traveled to the beach or to Georgia to explore the sites. We returned home two months later and did oral chemotherapy. She had her last dose of chemotherapy on her fourth birthday, September 8, 2012. Maisie now has yearly MRI’s at St. Jude.
Maisie came away from all of the treatments virtually normal. She has no learning or cognitive problems. She has a slight weakness in her right leg, but you would never know it by looking at her. She was a driving force for her family, especially me, during her treatment. It brings tears to my eyes now to think about how little she was and how much she went through. There were days at St. Jude that I could have just stayed in bed and cried all day, but Maisie wouldn’t allow it. She got me up and made me take her to the zoo or playrooms. She carried me through her sickness. She made me laugh on days I wanted to cry and made me smile on my worst days. She has no idea how strong she really was and still is to this day. Maisie was so little she didn’t understand that this wasn’t normal.
Maisie is so full of life and loves everything about it. She has a different way of looking at the world than most kids. She often asks if she is special because she had cancer and God gave her a miracle. She instantly feels compassion for any bald person or any disabled child. If she hears of someone that has cancer she immediately says, “they need to get to Judy’s” (Judy’s is what she calls St. Jude).
My Advice to Others
You are your child’s advocate, but don’t forget they are just children. As scary as it is, you must let your child remain a child and have a childhood. Don’t get caught up in the medical aspect and don’t get so stressed out that you can’t function. Also do not believe statistics that you read on the Internet. There are so many new treatments being discovered that you cannot judge 5-year or 10-year survival rates. Don’t lose hope! With the efforts of the CERN Foundation, there is still hope for a cure. I am thrilled at the leaps and bounds in research the foundation has made.
Project Maisie Hugs
Having a child with cancer really opened my eyes. I never heard much about childhood cancer until it hit my own daughter. Now, just knowing the statistics is heartbreaking. I feel an instant connection to any parent that has a child with a medical problem, and want to help fight in any way possible.
I am now working at a cancer facility in my hometown and have also started a non-profit organization, Project Maisie Hugs, with the help of my mom, Gayla. The organization gives special dolls to sick children and their siblings who are separated during treatments for catastrophic diseases. During treatments, Maisie was separated from her brother and they missed each other terribly. She named a stuffed animal Bubba and always wanted to take it to the hospital. It made her happy to be able to say, “Bubba went with me today!” We knew other kids felt the same way and wanted to find a way to help.
Our goal is to give comfort to these children by giving them special dolls to remind them of a family member or friend. Each doll provides a place to put a photo, giving these children a tangible way of relating to the one they are missing.