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Nathan’s Story

Site created on September 6, 2021

Nathan started feeling unwell around the 3rd week of August. He was tired, achy, didn't have an appetite, experienced achy bones, and had chills. He had no fever and the symptoms would come and go and would also not present all at once. Julie took him to the pediatrician on Friday August 27. The doctor did a strep, mono, checked for anemia, all were negative. Julie also took him to get a COVID test, that was also negative. His exam was normal, there was nothing the doctor could find to explain his symptoms. He told Julie that if continued to experience symptoms, that they should come back in 5 days. Nathan continued to experience symptoms, so Nathan went back to the doctor on Wednesday, September 1. There was nothing the doctor could find in his exam to explain Nathan's ongoing symptoms. He ordered blood and urine labs and those were completed on Thursday, September 2. On Friday afternoon, Julie received a call from the pediatrician's office that his platelet and white blood count were way off and to have the labs rechecked immediately. Julie went home to print to lab order and received a call directly from the pediatrician to proceed directly to the ER. Nathan's labs were not good, his white blood cell count was off the charts high and his platelet count was alarmingly low. He warned Julie that this could be leukemia based on the labs, but that the hospital would make the correct diagnosis. He told her the ER was expecting them. Once at the ER, the diagnosis was confirmed after his blood was drawn and analyzed. Nathan was admitted to the hospital. On Saturday, they found out what type of leukemia Nathan has (there are many types). He has B cell acute lymphoblastic leukemia. It is very common and treatable with chemotherapy. Nathan was admitted to the hospital on the Friday of Labor Day weekend. This means the hospital was on a skeleton staff because of the holiday. They wouldn't be able to start treatment (chemotherapy) until after the holiday when the staff was back. Until then, he was kept in the hospital over the weekend to give him fluids to help lower his white blood count and to help his kidneys function. They also continued to check his blood every 8 hours to monitor his levels. Nathan has been so brave during this whole process. It has all been very overwhelming. The staff at CHOA Scottish Rite has been so wonderful and supportive. We are working with an excellent team of doctors who work exclusively with leukemia and have a set treatment schedule. They monitor everything very closely so if there is a reaction to the chemotherapy, they will adjust his treatment schedule immediately. We also have enrolled Nathan in a treatment trial. We would know if he gets selected, based on how his first 8 months go and if he is selected.

Newest Update

Journal entry by Julie Cutler — Jan 17, 2024

Happy new year! Nathan had his port removed on December 18th. It was an easy procedure, compared to all we have been through this year. Nathan recovered nicely and had no issues when we took the family skiing to Crested Butte for the Christmas holiday. Nathan snowboarded blues and blacks like a champ! We are so glad that he is slowly recovering from his treatments. It will take about six months for his blood counts to return to normal levels. Since he has stopped taking his medication, he isn't as tired anymore and he is embracing this new found energy by going to the gym, playing baseball and going out with friends. Thank you again to all who have supported us through this unexpected journey. It hasn't been easy, but we appreciate everything you all have done!

Read More of the journal titled "Happy new year!"

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