In February 2023, we noticed a sore develop on Charlie’s side. But being a normal 3-year-old little boy, we shook it off as a stick poke or a bug bite from playing outside. As time progressed, not only did the sore get bigger, but Charlie started falling asleep on the couch and experiencing fevers of 102-103 degrees.
We took Charlie to Nemours Children’s Hospital, Florida’s Emergency Room in Orlando where the doctors closely examined him before calling in Dr. Alexander, an infectious disease specialist. Dr. Alexander was very kind and helped us think through different ideas of what this could be. They took a biopsy and sent us home on an antibiotic and instructions to follow up with our pediatrician.
A week later, there had been no signs of healing. Charlie’s lymph node in his armpit near the wound had become swollen. After following up with his pediatrician two times with multiple negative tests, we were sent back to the Nemours ER. We again met with Infectious Disease, who decided to admit Charlie for IV anti-fungal medicines. During his week in-patient, Charlie was cared for by Infectious Disease, numerous residents, interns, and wonderful nurses. The diagnosis was still unknown, but the wound appeared to be Black Eschar which led to a list of potential ideas. We concluded with a biopsy of his lymph node and wound, as well as anti-fungal medications and were sent home while we waited for more test results.
On April 21, 2023, just a week later, we received notification that Charlie had been diagnosed with anaplastic large cell lymphoma, a rare type of non-Hodgkin’s lymphoma. We rushed to the ER and Charlie was placed on IV anti-fungal medications again before starting chemotherapy.
After being admitted to the Oncology Unit, Dr. Agarwal and Dr. Douglas educated us about Charlie’s type of lymphoma and the procedure of chemotherapy. We met with Kathryn, the amazing Child Life Specialist who helped us explain what was happening to Charlie, as well as to his big brother. We were comforted by the nurses who gently answered every question we had over and over again. The nurses took such good care of our whole family through the last few months.
Due to Charlie’s high fevers, lack of energy and generally not feeling good, our daily plans were
altered. He constantly had to miss school because of his symptoms. We spent many days worried about why he was sleeping so much and many nights wondering why he was sweating
so much. We had to continue pushing for answers because we knew there was something not
right, but I think the biggest thing that worried us was when Charlie stopped being excited about his upcoming 4th birthday and didn’t even want to take cupcakes into his class to share with his friends. We went from having a crazy 3-year-old little boy who would never slow down, to an exhausted little guy who was falling asleep throughout the day.
I could sit here and write all day about how amazing the nurses, doctors, and child life specialists have been. We have been blessed since day one with wonderful doctors, residents, medical students, nurses, and child life specialists.
We were first introduced to Nemours in January 2023 when a friend had taken her 17-year-old into Nemours for an emergency visit. We were both new to the area and she called to tell me about how great the doctors treated her son. She said, “If you ever have an emergency I 100% recommend Nemours.” We owe her so much for sharing her great experience with us.
Dr. Agarwal showed us right from the start how much her patients mean to her. She educated us not only on ALCL, but also the procedures Charlie would be going through. She went above and beyond and reached out to doctors at other hospitals to ensure Charlie was getting the best and most updated protocol. This gave us so much trust in her that she would be willing to make calls to ensure he is getting the best care. Dr. Douglas, from the first day I met her, allowed me to ask any question I needed to and sat patiently explaining things to me. She also connected with our older son and was available to him with any questions he had about lymphoma and the chemotherapy process. Dr. Douglas reminded us that the goal is for this to be a season and things like school and regular family activity were still important.
The nurses on the Oncology floor have been incredible. The days and nights spent watching them care for my sick baby are so sacred. They cared for him as he was ill, they helped him while he was restless, they found food for him when he’d have cravings, they settled his fears during shots, the list could go on and on. Numerous times, nurses would come in and play with Charlie. Whether it be Candy Land, Play Doh, his new Disney Castle, Legos, they weren’t only Charlies nurses, but also his friends. One night Charlie was craving s’mores and we only had chocolate. The next night the nurse who had been working with him brought him marshmallows, graham crackers, and chocolate. I’ll never forget the kindness she gave us.
Child Life is such a unique and special part of the hospital and I truly believe our time at Nemours wouldn’t have been the same without them. Each week when Charlie goes into Infusion, he sees Ms. Katherine. Ms. Katherine has been around us since day one. She helped explain what his chemo port was going to look like and what it would do, she helped us explain to our 8-year-old son what this all meant and how it would affect Charlie and our family. However, that is just a little bit of what Child Life has done for our family. Katherine has been able to help Charlie confidently sit and get his butterfly put in week after week in infusion. Child Life has provided summer activities, crafts, and distractions during our long stays in the hospital. Carlos, the gaming tech, was able to connect with both my boys and share his experiences with them, too. As a child, Carlos was diagnosed with pediatric cancer, so he knows firsthand how his patients feel.
Since April 21, Charlie has undergone six rounds of inpatient chemotherapy. We have also worked with Dr. Kellogg in the plastic surgery department to heal his wound completely and we are currently waiting on additional test results to hear what the next steps will be. We are nervous to get back to normal life, but we’re confident that our care team will help prepare us for what is next. My biggest piece of advice for parents going through this is just ask. If you are unsure about the next steps, the medicines being given, the procedures being performed — just ask. Your nurses and doctors love your kids and have devoted their whole career to take care of them and they will talk you through it. Also, take advantage of all the resources available to you and your family. The social worker, child life specialists, and the education experts are all unique aspects of a children’s hospital that are invaluable.
