Artwork and Art Supplies to Engage Pediatric Oncology Patients
Artwork and Art Supplies to Engage Pediatric Oncology Patients
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Riley Rose Sherman was born in the scorching heat of July of 2011. She was a delightful baby, a precious toddler, and a precocious preschooler. In the summer of 2016, she had just turned five years old and was a delightful, joyful little girl. She was always dancing, twirling, moving and shaking. The Sherman family went on a vacation to Montana and while on that vacation, Riley Rose began to complain that she didn’t want to walk, and that her legs hurt. We brushed it off to growing pains and made an appt. for the following week at her pediatrician. The following week, we went in on Monday and they measured her and she had grown two inches in a year. The doctor looked her over and checked her ears, nose and throat, and deemed her all-clear and we headed home. As the week progressed, she complained more and more, and a repeat follow up visit, we were told it was a possible virus. By Saturday she was in such pain that mom took her to the local urgent care. At the urgent care, it was determined that heading to the local ER would be best, as the urgent care didn’t have pediatric services. When we got to the ER, we waited eight hours to be seen, they drew blood, and ordered a CT scan and an x-ray. The blood test came back first and I (Kristin) will never forget the words of the resident physician, “Well the good news is that she doesn’t have any form of leukemia”. At the time the extent of my knowledge of a cancer like leukemia was that my dad died from it in 2009, and did kids get this? I breathed a sigh of relief thinking well we are clear then, now we need to figure out what this virus was. Over the next 13 days, we would find ourselves transferred to a children’s hospital, a litany of tests, and eventually a devastating diagnosis of stage 4 cancer that included a less than a 30% chance of survival. How could this be?
We found ourselves thrust into a world in which no one prepared you for. We tried to get treatment at St. Jude’s and they had no trials available. We accepted a transfer to CHOC in Orange County and began treatment on the standard COG (Children’s Oncology Group) recommendation. The initial treatment was to be two years in length and Riley Rose would miss all of kindergarten and most of first grade, but the doctors felt confident that she had a chance to beat this!
Over the next nine months or so we endured rounds of chemotherapy, surgeries, port placements, and at least 200 nights in a hospital setting. The hospital was 100 miles one way from our house so we put almost 14,000 miles on our car. It was a hellish experience at best, but in February of 2017, she was declared NED (No Evidence of Disease). We celebrated and then started the next step, which was a series of autologous bone marrow transplants.
This is where, if it could go wrong, it did. Riley Rose barely survived the bone marrow transplant, and we decided that we would not do the second one and instead go on to radiation and immunotherapy. We had found a specialized therapy setting in Dallas, Texas at Children’s Hospital Dallas where they could complete her treatment and teach her how to walk again. She stopped walking after her first spinal surgery back In September of 2016. We picked up our lives and prepared to live in Texas for at least the next year. From May to August of 2017 she learned to walk again, and she completed radiation and her first two rounds of immunotherapy. We saw the end zone in sight.
In August of 2017, while preparing to be discharged from the hospital, Riley Rose began to complain about her head hurting. Within minutes she lost consciousness and she was rushed to a CT image, where they determined she had started bleeding in the brain. They rushed her into emergency surgery where they removed a huge blood clot and in the center of that was a half inch tumor made up of neuroblastoma cells. We were devastated to say the least.
We survived that setback and headed out to New York City and to Memorial Sloan Kettering as they see more cases of neuroblastoma then anyone in the world and they have a specific program for CNS Brain relapse. We lived in the Ronald McDonald house for more then three months and completed 17 days of brain and spinal radiation, physical therapy and some chemotherapy. We headed home in late October with a return date to be back in three weeks for the next round of treatment. Three weeks later, we returned to complete a series of scans and it was determined that Riley Rose had progressed meaning her cancer had grown in three short weeks. After a series of meetings with many doctors, it was determined that there was nothing further we could do, and we were sent home to La Quinta on hospice. We were gutted.
In late December, after our emergency Make A Wish trip to Hawaii, we were researching and came across Dr. Sholler at Helen Devos Children’s Hospital in Grand Rapids, Michigan. She was doing innovative things and we reached out to her. Rick and Riley Rose flew across the country to meet with her. Riley Rose was granted access to one of the DFMO trials and we paired it with etoposide and we came home full of hope again. It was now early 2018. We continued to work with the doctors at CHOC in Orange County and Riley Rose seemed to thrive on this trial. She began kindergarten in late January and started her physical therapy again. In early March a series of fevers, headaches and just generally not feeling well sent us back to CHOC. We got some blood work and booked tickets to see Dr. Sholler in Michigan. Mom and Riley Rose flew out and by the time we got there we went straight to the hospital where we were admitted. We were scanned and it was determined that her cancer had once again progressed. The only hope was a trial in Texas that Dr. Sholler was overseeing with her chief collaborators from the Beat CC consortium. We once again dropped everything, and Dad moved back to Texas with Riley Rose and Mom and Matthew stayed in CA to try and finish the school year. We met with the specialists in Texas and came up with a plan. Within two weeks she was feeling better, the medicine started to work and Riley Rose returned to physical therapy.
On Easter Sunday in 2018, we were visiting with some dear friends and Riley was again complaining of not feeling well. Dad took her back to the RMH and she took a nap. She woke up a few hours later and was confused and agitated. Dad took her into the emergency room. An emergency MRI was performed and it was determined that she was bleeding in several areas in her brain. We reached out to Dr. Sholler and it was determined that this was not feasible for her to continue this study and that Riley Rose would pass away. We decided, due to a lack of pediatric resources in the Coachella Valley to stay in Texas. We hunkered down, and spent the next 6 days enjoying our family, singing, and talking, painting nails, and watching movies.
Riley received her first communion on April 12th, 2018 and was confirmed into The Catholic Church at the same time. Riley Rose passed away at 3:04 am on April 13th, 2018. We brought her home to the Coachella Valley. On May 1st, her life was remembered through a series of events that included a full Catholic Mass, a burial and a celebration of her life in the afternoon at Southwest Community Church. More than 5000 people joined us that day at the various events and it was then that we began to see the deep impact that our perfect little girl had on the world.
Our dreams were not buried with our daughter. We knew that we must soldier on. There was powerful research being done and we needed to support that cause. She loved art and music and theatre and we needed to nurture that love. This is there the idea of her foundation came from, and where Riley’s Art Carts were born from. We are honored that you have joined our family. We know that this journey is not an easy one for anyone. As we have said from the beginning, we can do hard things and we choose to give the glory to God, always.
We love you all, The Sherman Family (Rick, Kristin, Riley Rose, Matthew and Baby Kylie Grace)