No parent ever expects to hear the words "Your child has cancer." One day we were naive to the world of childhood cancer. The next day, we were cancer parents. October 20, 2022 changed our lives forever.
Thus began Elsie's journey with Stage 4 High Risk Neuroblastoma. We were told (in much nicer terms) that she had a 40-60% chance of being alive in 5 years. Treatment would consist of chemotherapy, surgery, high dose chemotherapy with stem cell rescue, radiation, and immunotherapy. Neuroblastoma like to come back, and when it does the survival rate drops significantly, so they throw everything at it.
On November 3rd, 2022, Elsie was admitted to the hospital to have her double lumen central line placed and start her first round of chemo. It was the day we were supposed to be checking in at Disney World for our first family vacation.
February 3, 2023, Elsie had her tumor resection surgery which left her with a 6 inch scar across her abdomen. We were home for one night before being readmitted for a chyle leak (a complication from surgery) which kept us in the PICU for 11 days.
March 29, 2023, Elsie and I checked in for her first stem cell transplant. We were inpatient for 22 days.
May 22, 2023 was the beginning of stem cell transplant number 2. We were in the hospital for 23 days.
July 17, 2023, Elsie began 12 days of radiation. She had to be sedated each day for treatment. Even with being sedated each day, radiation was like a vacation compared to everything else she had been through.
August 28, 2023, Elsie was admitted for her first round of antibody therapy. This therapy causes a lot of pain, so she was hooked up to a morphine drip before the antibodies were even started.
December 23, 2023, we left the hospital after Elsie's last admission for immunotherapy.
February 11th, 2024, Elsie ended treatment.
March 5, 2024, after 16 months of treatment, Elsie celebrated being declared NED (no evidence of disease) at the end of treatment by ringing the bell.
Elsie's journey is far from over. She will continue to be monitored for any sign that the cancer has returned and will continue taking a medication to help prevent relapse for a year or two.
We know firsthand how brutal current treatments are for children. We've seen how research can lead to new developments to help these children (like the medication Elsie is currently taking that was just approved by the FDA in December 2023). We want to do what we can to help raise funds to make a difference for the kids that come after Elsie. I hope that someday the worda "Your child has cancer" isn't quite as terrifying because there are safer more effective treatments available. That's why we're raising money. Kids deserve better.
