In May of 2010, my friends, Bev and Brian, began to worry about their 11-month-old daughter, Lucy. She had been lethargic and started vomiting almost daily. Typical toddler things like ear infections and teeth were blamed, but when Lucy's symptoms didn't improve, further testing was performed. When tests for really scary stuff like leukemia were negative, we all breathed a sigh of relief. Even the doctors were a bit perplexed at first and were convinced it was a virus that Lucy would shake on her own. Finally, two days before Lucy's first birthday, a doctor ordered a scan of Lucy's brain, the culprit behind her symptoms was alarmingly clear: a huge brain tumor had taken over. On the day she turned one, her day began with a team of surgeons and nurses singing 'Happy Birthday' to her and was followed by 6 hours of surgery to remove the tumor. Lucy pulled through like a champ, was smiling as she was wheeled out of surgery, and a follow-up MRI showed that the tumor was virtually non-existent. However, a few days after surgery, once the tumor had been examined, it was found to be an extremely rare, highly malignant form of cancer called AT/RT. This cancer typically strikes kids under 3, like Lucy. After she was healed up from surgery, Lucy underwent a procedure in which stem cells were harvested so that they could be used later when her body was weakened by her upcoming chemo treatments. Lucy then began an aggressive, 6-round chemotherapy protocol which included stem cell transplants after rounds 4, 5, and 6.
Lucy received her treatment at Children's Mercy Hospital in Kansas City, which was local for her parents, and they were able to set up hospital and home shifts so that they could keep things as routine as possible for Lucy's older sister, Lilli, who is 3. Around this time, a group of friends formed Team Lucy and began selling purple wristbands imprinted with "Team Lucy". Purple was chosen mostly because of Lucy's dad's passion for all things Kansas State, and the Team Lucy logo was designed, which was a Goose pull toy with a purple ribbon around its neck - a nod to Lucy's nickname of Lucy Goosey, or just Goose. The first 500 wristbands flew out the door and people were amazingly generous in their contributions to Team Lucy, which were to go toward Lucy's expenses. Team Lucy got bigger, and bigger, and bigger. Her CaringBridge site visit count went up, and up, and up. The Team Lucy Facebook page started with a few members and grew, and grew, and grew. Everyone who heard of her story was moved. Everyone. People didn't get just a little bit involved. Everyone jumped on board and stayed on board. There was something about the little red-haired girl that drew people in. Team Lucy shirts were ordered, and re-ordered, and re-ordered again. People walked in the Head for the Cure Foundation's 5k as members of Team Lucy. A Beer Dinner and Silent Auction raised $25,000 in one evening. A donated Harley Davidson was raffled off. Team Lucy even came out in full force to play racy adult Bingo and raised a quick $4,000. Individuals and businesses stepped up to deliver meals, do yard work and house cleaning, run errands, service cars, do dry cleaning, cut hair, donate birthday parties, and the list goes on and on. The countless events continued as Lucy fought through round after round of chemo.
Lucy had ups and downs through her journey, but she always had a smile for everyone. In the hospital, she would get in her little walker and go up and down the halls offering smiles to nurses, doctors, parents, visitors, and the other kids she grew to know and who became her friends. Lucy's family consistently asked for prayers not just for Lucy, but for all of the other children and families at Children's Mercy, which became their home away from home. They were always thinking of others, even as they themselves were watching their daughter battle this awful, awful disease. Bev once said that she would wake up from a horrible nightmare and want to go back to it, because waking up to reality was way worse than anything she could dream.
Lucy's chemotherapy was proving to be effective in fighting her cancer. Unfortunately, it was showing success in wreaking havoc to the rest of her little body as well. Following her final round of chemo and final stem cell transplant, Lucy was in the hospital waiting for her counts to recover. Her kidneys, which were wiped out, were not processing her fluids, which got backed up and eventually led to low oxygen levels. At the same time, Lucy was diagnosed with VOD, a liver disease which is not an uncommon side effect of this chemo. She was admitted to the PICU on a Tuesday and put on dialysis and a ventilator. During this time, she was sedated and paralyzed in order to keep her blood pressure and other vitals as stable as possible. On Saturday, November 20, Lucy's parents came to the saddening reality that Lucy was not going to be healed here on Earth. They made the decision no parent can even fathom making. They unselfishly allowed Lucy to finally be at peace, and in the process, took on the pain of grief themselves. Lucy earned her angel wings in the arms of her parents while wrapped in a favorite blanket with a lullaby playing softly in the background. Lucy was buried in Wichita next to her grandpa Kenny, and hundreds (I would venture to guess close to 1,000) purple balloons floated up to her in Heaven in the days after she arrived there. I hope they made her giggle.
Every day I was amazed at how many people had heard Lucy's story and were following her journey. She garnered a lot of news coverage on TV, radio, and in newspapers. I also found that through Lucy, the world got a lot smaller. I can't even count the number of connections that were made between various people that were following Lucy and were connected to each other in some other way. I am convinced that through 5 degrees of separation, everyone in the world has heard of her story! Team Lucy was made up of friends, neighbors, co-workers, CMH patient families, church prayer groups, innumerable strangers, Kansas State fans (and even KU Fans who would ONLY sport purple if it were for Lucy), news stations, newspaper reporters, business owners...and eventually Dick Vitale. He was made aware of Lucy through the Kansas State Athletic Department, and on the day of Lucy's funeral service, Brian got a personal call from Dick, who expressed his sincere condolences and asked to talk about Lucy in his speech which was to be aired at halftime of the 2nd game of the 2010 Jimmy V Classic. He also extended an invitation to Bev and Brian to attend the 2011 Jimmy V Foundation's Gala in May.
Lucy's legacy is just beginning, and just like the first days of Team Lucy, I don't think we have any idea how big it will become. She has changed so many people for the better. I miss Lucy terribly and my heart aches that she's not here, but I am comforted to know that she is healed and in wonderful hands. Her purpose on Earth was fulfilled in a short 17 months, and she got to move on. We must all now strive every day to exemplify what she taught us, which is to be more compassionate, loving, kind, caring, patient, accepting, and definitely more generous with our time, money, and talent to help others in need. I have no doubt in my mind that Lucy will help to raise many, many dollars for the Jimmy V Foundation.