This is Ivy. She’s 3 years old, has the best big sister and little brother, who she loves so much, and up until January 2021, she was meeting every milestone a typical almost 18 month old should be meeting. Starting the beginning of January, Ivy started to constantly shake. She soon stopped walking and talking. Her pediatrician sent us to Temple where they performed scans and tests for a few days and released us with a diagnosis of “ataxia” and put her in PT and OT for the 2.5 months. On March 31, they wanted to do follow up scans. We took her to temple, did the scans and came home. About an hour after we got home, we got the phone call they found a mass and we needed to come back the next day.
We dropped off our oldest daughter with my mom and headed to Temple where they informed us she had something called Opsouclonus-myoclonus syndrome (which is a neurological disorder and the reason she could not walk) and Neuroblastoma. They proceeded to treat the OMS for two weeks before sending us and putting Ivy back in PT. Once the OMS was treated, Ivy stopped shaking, started talking and began running and walking like no other again. Since then, she has gone through 5 rounds of chemo, hernia surgery, along with multiple surgeries in between such as port placement/removal and a central line placement/removal, tumor removal, 2 high dose chemo rounds with 3 autologous bone marrow transplants, 12 rounds of radiation, and 5 rounds of immunotherapy. She is set to have her end of treatment scans on October 26/27th and then ring the bell on November 1st! Ivy continues to blow us away with how strong and brave she has been through all of this and never lets anyone forget she’s got this!
Ivy has always been referred to as “The Tiny Hulk” by her doctors since she was diagnosed because it has always taken so many people to be able to hold her down when they have to do so. She has a high pain tolerance and can handle more than even I can. She is incredible. When we got a few months in, we started the saying “Be Incredible Today” because Ivy was and still is incredible every day, even through everything she has been and continues to go through.
