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Fund Childhood Cancer Research in Honor of Rally Kid Emily Kate
Fund Childhood Cancer Research in Honor of Rally Kid Emily Kate
Emily Kate’s Cancer Journey
Emily Kate “EK” was diagnosed with Stage 4 metastatic neuroblastoma on December 13, 2021 at 16 months old. A small swollen lymph node on her neck popped up out of nowhere which brought us to our pediatrician’s office. Continued swelling, additional lumps, and a rough virus had us going back and forth to doctors’ visits until we were eventually given an ENT referral, which lead to a biopsy. During the biopsy, our surgeon came in to tell us “this isn’t a lymph node, she has a mass. It is wrapped around the carotid artery. I’m stopping the procedure”. They were able to send a few lymph nodes out for a biopsy. Three days later, our ENT called and said the most gut wrenching 3 words I’ve ever heard.. “Emily has cancer”. Our little family of 4 had their whole world turned upside down with that one phrase.
We met with our new team at CHOA and spent a few weeks going back and forth, doing different types of scans to determine her final diagnosis, staging, and treatment plan. The cancer had spread to her nearby lymph nodes and bone marrow. Genetic testing showed the tumor did not have a MYCN amplification (which would have put her into high risk factor) but did have a 1P gene deletion (which can make relapse chances higher and make treatment more difficult).
We met with our new team at CHOA and spent a few weeks going back and forth, doing different types of scans to determine her final diagnosis, staging, and treatment plan. The cancer had spread to her nearby lymph nodes and bone marrow. Genetic testing showed the tumor did not have a MYCN amplification (which would have put her into high risk factor) but did have a 1P gene deletion (which can make relapse chances higher and make treatment more difficult).
We began chemo at CHOA Scottish Rite the week of New Years. After 4 cycles of chemo, we redid scans and found out the tumor only responded with 23% shrinkage, but cleared her bone marrow from cancer cells!! We then decided to do another 4 cycles of chemo, adding in a stronger chemo, to see if we could get the tumor to respond better. Each cycle brought more nausea, possible long term side effects, and stress. Yet each day, Emily played as much as she could, and never let it get her down. 4 more cycles done and we went into her MRI scan with high hopes. The next day, at 6pm, my phone rang.. Our oncologist.. I knew it wasn’t good. “There’s been 3% shrinkage.” she said, as my heart stopped. We switched up the chemo’s and started cycle 9.
Two weeks after cycle 9, we took a trip to Chicago for the Childrens Neuroblastoma Cancer Foundations annual conference, where we met the top Neuroblastoma oncologists from around the world. We decided to get a formal second opinion at the leading Neuroblastoma hospital, Memorial Sloane Kettering in NYC. We made our first trip to NYC to meet our team and get a PET scan that CHOA couldn’t do quickly enough. On September 12, 2022 Emily Kate under went a 6 hour long surgery at MSK. They were able to remove her entire tumor without any complications. She was running the halls of the hospital the very next day! After being in New York for 13 days, we came home tumor free!
Emily has completed 3 sets of scans (MRI and MIBG) since her surgery and has one spot in her lymph nodes that continues to show active cancer cells. We are currently on the Watch-and-Wait protocol redoing scans every 12 weeks to monitor the spot.