A Cancer Journey
It sounds cliche, but it’s the words no parent wants to hear: your child has cancer. Marlee’s cancer journey began in April 2015 when she was diagnosed with Alveolar Rhabdomyosarcoma, a very rare and aggressive soft tissue sarcoma. The Pack family, Bill, Shelly and big sister Meredith, would learn that Marlee’s cancer journey would be their cancer journey.
It started simply enough. Shelly found a small bump on the top of Marlee’s left foot after a soccer game. Moderately painful but annoying, the Packs decided it warranted a trip to the doctor. The journey accelerated quickly from there. An MRI revealed a tumor in the soft tissue of the foot, an aggressive tumor that would best be eradicated and stop potential spread with amputation. In less than two weeks, Marlee went from precocious 8 year old and soccer star to a pediatric cancer patient being fitted for a prosthetic leg and facing 43 weeks of chemotherapy at Children’s Hospital Colorado. She never stopped smiling.
Soon after her treatment ended, the Pack family relocated back to Texas. A relapse followed. The cancer was found in the lymph node bed in her inner left thigh. She then had extremely intense inpatient chemotherapy both at Texas Children’s and later at MD Anderson, as well as Proton Radiation Therapy at MD Anderson. In what would eventually drive the Marlee’s Smile mission, she was treated with outdated toxic drugs, one of which was invented using nerve agents from WWII, Doxorubicin, known in cancer circles as ‘The Red Devil’. It has significant, long term side effects especially affecting the heart, so only so much can be given over a lifetime. She once again achieved remission. She never stopped smiling.
Marlee then entered a clinical trial at Texas Children’s using her re engineered T-Cells to kill any cancer cells that may be left. Shortly after she finished the T-Cell infusions, she relapsed again. This time a small tumor in her left buttock was found on a routine MRI. As with many hard to treat pediatric cancers, Marlee ‘s medical team tried again with the best available drugs. She once more received intense outpatient chemotherapy and Proton Radiation Therapy at MD Anderson paired with chemotherapy drugs developed for adults. One of the medications she received, Cyclophosphamide, requires 2 hours of fluids before getting it and 24 hours of fluids and a tandem drug after getting it so that it does not eat holes in her bladder. In what was becoming too familiar, Marlee again achieved remission and received T-Cells from Texas Children’s in an attempt to keep another relapse at bay. She never stopped smiling.
Yet another relapse came in October of 2018. It was a major relapse, as she had tumors throughout her abdomen, one wrapped around the main artery to her liver. She’d had three rounds of chemo when it was determined the treatment was no longer working and the tumors were growing. On January 15, 2019, Marlee was given the option of a clinical trial. She asked, “Do I have to get chemo and will it cure me?” The answers were agonizingly simple: ‘yes’ to chemo and ‘no’ to a cure. Now age 12 and empowered by her parents to make decisions regarding the difficult treatments she would endure, she decided that day to stop treatment. No more chemo, no more tubes, no more ports and pokes and hospitals. They immediately went home, packed the car and went to a rented beach house in Galveston, TX for a week. She felt good for the time they were there and was able to spend valuable, quality time with her family. She never stopped smiling.
The Packs returned home with hospice care and significant pain management in place. Marlee was home and surrounded by her family and beloved dogs when she passed away around 12:30 am on February 23, 2019 at only 12 years old.
Her family promised to honor her by remembering, fighting and creating Marlee’s Smile. We will never stop.
It’s a poignant rite of passage for all kids facing a critical illness: choosing a wish from the Make-A-Wish Foundation. At the beginning of her wish journey, Marlee met with volunteers from Make-A-Wish Colorado. When they asked what her one true wish would be, she didn’t want to be, to go, to have, or to meet.
She wanted to give.
Marlee envisioned a Build-A-Bear® for every pediatric oncology patient in the hospital. She wanted to provide a steadfast, cute and cuddly ally to help the other children get through the toughest time of their lives. Each one would be customized by the kids who knew the same fears and sleepless nights as Marlee. Her hope was that her stuffed bears could transform a child’s bad day into a good day. Her hope was that a furry friend could bring a smile.
When her big day arrived, Marlee led the way as her helpers pushed carts overflowing with Build-A-Bears, each one her gift of hope and comfort to her fellow hospital patients. She shared smiles and hugs with each child as she watched them customize their new companions. Each gift of a bear left the giver and recipient smiling – not to mention everyone who witnessed Marlee’s act of kindness. Marlee’s parents and sister, Bill, Shelly and Meredith, were overcome with pride. They knew that in the midst of her own treatment and struggles, she was committed to make the world a better place.
After a four year battle with Alveolar Rhabdomyosarcoma, Marlee found healing on the other side of heaven. As part of their promise to Marlee, her family founded Marlee’s Smile and we are dedicated to continuing to provide bears to all kids with cancer and their siblings– so we can change the world for kids with cancer, one smile at a time. Just like Marlee did.
Do You Know Someone Who Needs a Smile?
We want to put a Marlee’s Smile furry friend in the arms of every child fighting pediatric cancer, as well as their siblings! Tell us about your special friend!