As we near the end of Nahla’s first year post transplant, we look forward to easier days ahead. They say the first year is the hardest and boy has it been! A couple months ago we found out Nahla had what’s called PTLD (Post Transplant Lymphoproliferative Disorder) This happens rarely in transplant patients and is often associated with the Epstein Barr Virus. It causes white blood cells called lymphocytes to multiply out of control in some cases causing lymph node cancer (lymphoma). Because Nahla’s EBV levels had become extremely high, they scheduled Nahla for a CT scan where they found areas of concern on her lymph nodes and tonsils. She was scheduled for a tonsillectomy/adenoidectomy, and we planned on being in the hospital for a couple of days and beginning IV infusions to treat the PTLD. Those couple of days turned into several weeks as Nahla continued to lose weight post operatively and have extremely high fevers. Her first infusion also caused a scary reaction where she started shaking uncontrollably and couldn’t get warm. Her heart rate and temperature skyrocketed, and oxygen dropped so they had to stop the infusion. In addition, Nahla also had a nasogastric tube placed for nutrition and endured blood draws and IV sticks almost daily. Through all of this she persevered and with the right prophylactic medications she was able to tolerate the next few infusions. Finally, we were able to come home. Nahla was discharged with the NG tube and nighttime feeds to help her gain weight, and we set up infusions every 3 weeks back home in Springfield. Nahla couldn’t return to school due to the infusions decreasing her immunity however I am very blessed to have employment that allows me to work from home. She has started to gain weight and return to her normal healthy self and she only has two infusions left! We got word that she will be able to start kindergarten on time with all of her classmates, something she is ecstatic about. We had so much fun back to school shopping and we are also preparing for her 6th birthday at the end of August. Once her infusions are done in early September we will return to Kansas City for a PET scan, liver biopsy and One year follow up. At that time, we hope to see that the PTLD is completely resolved, and her liver is doing well.